Print Page | Close Window

Is triple negative breast cancer curable?

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: TNBC Polls & Surveys
Forum Description: A place to ask questions and survey the community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=10905
Printed Date: Aug 25 2019 at 3:11am
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com


Topic: Is triple negative breast cancer curable?
Posted By: LatoyaL
Subject: Is triple negative breast cancer curable?
Date Posted: Feb 05 2013 at 5:40pm
I was diagnosed with Triple Negative Breast cancer back in 2008 and would like to know is the disease even curable?  I am still remission, but I am still afraid of relapsing.  I was told by someone that after you've reached 5 years of being in remission,  recurrence doesn't usually happen after 5 years.  Can someone tell if that is true or not?



Replies:
Posted By: TriplePositiveGirl
Date Posted: Feb 05 2013 at 6:34pm
Hi Latoya,

From what I've been told by my doctors, due to the aggressive growing nature of TNBC, if you have hit the 5 year mark without recurrence, your odds of having a recurrence are significantly reduced, but not completely eliminated. I think I read that after 5 years of disease free survival, the % of recurrence is less than 5%. You should feel pretty good if you have not had a recurrence since 2008! 

Best of luck for continued good health!
Lisa


Posted By: becca
Date Posted: Feb 05 2013 at 6:35pm
My dr told me that it usually somes back in the first few years and that it is curable. I am 5 years out from DX and she told me that , yes, it is an agressive cancer but that does not mean it can't be cured :)
 
Becca


-------------
Age58 DX 12/07
Grand Junction, Colorado
Lumpectomy 1/08/08
Stage IIIA grade3
5/19 nodes
chemo 5/08 radiation 7/08
clear pet 9/08


Posted By: LatoyaL
Date Posted: Feb 06 2013 at 8:11pm
Thanks Triple Positive Girl and Becca for responding to my question


Posted By: SagePatientAdvocates
Date Posted: Feb 06 2013 at 8:52pm
Dear LaToya,

There is no "for sure" with TNBC, BUT I believe the 5 year mark can be very important. My daughter was diagnosed in 2004 and August will be her 9th anniversary of NED after her treatment and surgeries. 

LaToya, I would encourage you to try to find the beauty in each day and try to focus your energies on the good things i your life. I recognize that it is 'easier' for me to say "don't worry about recurrence" as I have never had cancer. I still accompany my daughter from, time to time, to her surveillance appointments and there is always anxiety prior to the consultation and a sigh of relief afterwards. For her the angst never fully disappears.

I personally believe that every woman who had had TNBC needs to remain vigilant and that vigilance, I recognize, can create anxiety. 

There is no "perfect" in all of this but as you approach your five year mark, I believe your chances are a lot better for a long life without cancer.

warmly,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: CourtneysDad
Date Posted: Feb 06 2013 at 11:20pm
My daughter passed away from triple negative breast cancer after a little less than a 2 year battle. I am writing this to hopefully help some other dad's learn from my experiences and to help save their daughters.
These are the lessions, which I have learned from my experiences with triple negative breast cancer:
(1) There is no cure for triple negative breast cancer.
(2) The average life expectancy is around 18 months, once you are diagnosed. My daughter lasted a few months longer than this.
(3) This type of cancer is particularly frustrating for the doctors. The reason is that it mutates so rapidly to the current cancer fighting drug. The doctor takes a biopsy of the cancer. He tests for a set of drugs and finds one that works. The treatment starts and our experience is that this drug will usually work for 1 to 3 months. After that the cancer will mutate and you have to do the biopsy again to find the next combination, which may work for a few months.
(4) The only cure, this is important, is to immediately have surgery to remove all possible sources for the cancer to start( uterous & breasts ), if you find any cancer at all. My daughter did not want to do this initially because she wanted to beat this and to have another baby. In the end, she finally agreed to the surgery but unfortunately it was too late. The cancer had spread to the lymph nodes. It was a very small number of cells but in time it had spread to her entire body. Once the cancer passed the brain boundary in about 18months, it was simply a matter of weeks before it was over.
(5) Do not waste your time with attempting a clinical trial. We tried to get into them but my daughter's white blood count was too low. I drove her across the country to a medical facility to start a trial only to be turned down, once we arrived. It took months of work to get her into the trial. Finally, the doctors simply refused to give her the drugs. They said that it would kill her by then. You have to understand that the trials have one purpose: that is to get approved by the FDA for reimbursement. The companies do not want people in the trials, who may not be successful( fit an optimal profile ). The taints their results. I did hear of one neighbor, who was able to get into a trial quickly. She was fortunate because her doctor knew the head of the study team and favors were done outside of the trial with waivers.
(6) The sad truth is that none of the current cancer drugs work on triple negative breast cancer. Only recently, has it achieved any awareness by the medical community.
(7) All the chemo and radiation will wear you down. It took such a toll on my daughter. In the end, she decided to stop treatment and live a normal life for as long as she could. The cancer took her about 5 months after this decision. I don't blame her. She underwent so many surgeries, tests and chemo treatments. It wasn't a life really.
 
So, in summary, my daughter's death did save other family members lives. Several nieces were found to have triple negative cancer over the past several years. I called their families and immediately advised the radical surgery to remove the breasts and uterus. All of them are alive today and cancer free. It has been 2 years and counting for them. Their fathers have thanked me many times.
 
I miss you Courtney.....evey day.
 
Dad


Posted By: denise07
Date Posted: Feb 06 2013 at 11:25pm
I echo what Steve says he is very on top of things cancer related not to mention many more he is very educated in this field,he is the best and gives wonderful advice.
Hang in there we all have to...
Hug's
Denise


-------------
DX Idc 10/07,st2,gr3,2/6 lymphnodes


Posted By: SagePatientAdvocates
Date Posted: Feb 07 2013 at 1:13am
Dearest Courtney's Dad,

Welcome to our TNBC family. I am deeply,deeply sorry for your loss. Words are inadequate but you have my profound and sincere condolences.

My grandfather was 19 when his wife, at the age of 18, gave birth to my Mother. We are a BRCA1+ family and my maternal grandmother died at age 47, of ovarian cancer, when I was two years old. My mother was 28 at the time and it was so painful for her to talk about that experience that she almost never did. When she was 42 she was diagnosed with breast cancer (most likely TNBC). I was 16 and then after four tough, tough years she passed away when I was 20, from metastatic disease to her bone/spine/liver. 

Courtney's Dad, I remember the following like it was yesterday. My grandfather and I went to the funeral home to make arrangements for her. He did not say one word. Whenever the funeral director asked a question he pointed to me and I spoke for the family. My grandfather and I went for a walk together after we left the home. We must have walked for ten miles and the only thing my grandfather could say was "Stevie, there is no greater pain to man than losing a child. I hope you never experience it. I was devastated when I lost my wife but somehow I was able to handle it better because losing a grandparent, parent or even a spouse is in the "natural order of things"... a child is not." He did not speak another word that night. Just sobbed-for hours. He was 65 at the time and he, from that day forward, could not utter my Mother's name without crying. He never really discussed it again except on her birthday when he would sob in my arms, without speaking. No words were needed. I am 6'3" and he was 5'2" and I would just gently kiss the top of his head, every few minutes and whisper "o.k. let it out."

As a father of six children I adore, I can't "go there"-thinking about losing a child. When my daughter was 36 and diagnosed with TNBC I thought I would lose her and for several months I truly thought I would lose my mind but I needed to be strong for her so, somehow, I was.

So here we are some 49 years later and I am crying as I type over the pain and suffering I see in your post and thinking back to my grandfather's losing his adored daughter who was my adored mother. And thinking back to my devastation as my world was turned upside down. My mother was a single parent and she was my best friend. She is still present in my life in many profound ways and always shall be.

But, Courtney's Dad I must respond to some of the things you said in your thread. Please understand, your views are your views and I respect them, completely. You have come to your conclusions and expressed them and I feel I need to express mine, with what I hope is sensitivity to your well-meaning remarks. But Courtney's experience is not the experience everyone, with TNBC, on this site has had.

I believe, with all due respect, that you are presenting a too-pessimistic scenario for the women in our TNBC family. And yes, I am a Patient Advocate working on a volunteer basis with women with TNBC and I have seen even more drastic situations at times than you have described. But I also see my daughter who is an 8 years survivor of TNBC. And others who are here for 10, 15 even 20 years. Can anyone say these women are not cured?

TNBC can be very sensitive to chemotherapy and women can live long, long, productive lives. I believe my daughter will be one of them who does. You have poignantly described your daughter's awful journey and my heart aches for you and for what she went through. A trip through hell. 

But your conclusions may not apply to many, many women here. Denise has already responded and others may as well, hopefully all with consideration and respect. That is the hall mark of this site. From my experience here, I do not believe that anyone, in my opinion, is going to be disrespectful of your words. It is just that TNBC is not a one-size-fits-all disease. In recent years we have found out that it consists of at least six sub-types. Everyone's experience is different and yes, it can be lethally aggressive, but at times it does respond to treatment.

One of the major problems on our site is that quite often when a woman has had TNBC and is now NED (No Evidence of Disease) she chooses not to post on the site anymore, preferring to get back to her life and not write about cancer. That is totally understandable and while I wish more NED women posted I understand and support their positions.

Courtney's Dad I write you with love in my heart for what you went through. I appreciate your perspective but I, respectfully, disagree with some of your conclusions. I encourage you to spend some time on our Forum and you will see many inspiring stories and yes, unfortunately, there are more that we will never read but, trust me, as an advocate who is still in contact with many NED women they are out there, they just don't post, but they are alive and well. Please take a look at some of the long-term survivor threads and then perhaps, you will better understand my perspective. It is also possible that you are in such pain and have gone through such horror that it will not matter to you, at this moment. And I understand that.

We are all wishing you some peace as you grieve.

warmly,

Steve

p.s. I am sending you my contact information. If you are unhappy with my remarks please let me know privately. I promise to listen respectfully. Let's not turn this to a public disagreement that will defeat the goals of this site which are support, education and love.




-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: SagePatientAdvocates
Date Posted: Feb 07 2013 at 8:51am
Dear Courtney's Dad,

It sounds like, from descriptions of what Courtney and several of your nieces went through that your family may have a BRCA mutation like mine.

I am an advocate in the Komen Advocates in Science program and Komen kindly published my family's story on their website.

http://ww5.komen.org/breastcancer/SteveK.html" rel="nofollow - http://ww5.komen.org/breastcancer/SteveK.html

The only way for you to know if the BRCA mutation is present is to test. I strongly advise a meeting with a Certified Genetic Counselor (CGC) to find out more information about the BRCA mutation. It is recommended by the NCCN that all women under the age of 60, with TNBC, be tested for the BRCA mutation, even absent a family history. 

http://%20demystifyingmedicine.od.nih.gov/DM10/0413-BreastCancer/NCCN%20br%20genetics_screening.pdf" rel="nofollow - http:// demystifyingmedicine.od.nih.gov/DM10/0413-BreastCancer/NCCN%20br%20genetics_screening.pdf

If Courtney was BRCA+ it means that either you or her Mother were BRCA+. Same with your nieces. They had to inherit the mutation from one of their parents. And the parents should be tested. Normally they would start with the parent who has the family history. In my family it was me and I tested BRCA positive. It is also possible that there is some sort of familial mutation, non-BRCA, involved. And that mutation might be difficult to find with commercial testing.

The other thing that is important in all of this is that I have met many parents who were guilty about passing this mutation to their child but I have never met a child who was angry with a parent about passing the gene to them. Everyone needs to understand that this is Genetics 101. There was nothing malicious about my grandmother passing the gene to her adored daughter and nothing malicious about my mom passing it to me. My mother adored me and would had never done anything to hurt me or future generations. The gene mutation I have (BRCA1 187delAG) is an Ashkenazi Founder's mutation and it has been going on for literally thousands of years, it is estimated. Probably caused by a poor gene pool, diversity-wise, as a lot of Ashkenazis would marry first cousins. Personally, I do not feel guilty about passing the mutation to my daughter. What I do feel is incredibly sad that she has it and developed TNBC
and decided to do various risk-reducing surgeries in an effort to save her life. Some day, I pray there will be other options for women with the mutation.

It is very important, if the mutation is present in a family, for the folks, at risk, to speak to a CGC and get tested, if indicated. That may include the men in the family. There may be consequences for men with the BRCA mutation such as increased risks of prostate cancer, male breast cancer, some GI cancers, perhaps melanoma etc. In my view, BRCA+ men should do surveillance, as guided by a high-risk clinic. The consequences for a BRCA+ male are much less onerous, normally, for a male than a BRCA+ woman. For example, I have been told that my risks of getting breast cancer at my age is roughly one out of seven, or 14% about the same as for women in the general population. But the risk for my daughter was 85% and the breast and ovarian cancers for BRCA1+ women are often early onset cancers. That is why BRCA1+ women are often told to have their ovaries removed, after they have had their families. There are no accurate diagnostic tests to find ovarian cancer early. 80% of all ovarian cancer is found as Stage III-IV disease, in this country, and that is a major problem. But the importance of having ovaries removed should be explained by a CGC and surgery performed by a gynecological oncologist, who is familiar with the special BRCA surgical protocol. If a woman has TNBC but doesn't have the BRCA mutation it is often not recommended for her to have gynecologic surgery. It would be an important, but very expensive study, to see what the incidence of ovarian cancer was in our TNBC community compared to the general population. As far as I know it has not been done. It has been done in the BRCA+ community and the incidence of ovarian cancer, as a separate risk from breast cancer, is about 45-50% for BRCA1+ women and 25% for BRCA2+ women.

I personally do Breast Self Exams, and recently had a clinical breast exam, a Breast MRI and a mammogram. I also screen for prostate cancer on a regular basis. I also have a history of pancreatic cancer in my family and I am doing surveillance for that. Because of that surveillance a small cyst was found on the neck of my pancreas. It looks benign, I am told, but I was advised to monitor it yearly and that is what I am doing via Abdominal MRI with pancreatic protocol. I just had one of those. No fun, but I feel better having done it. 

I also am not telling any man here what to do. I am not a medical professional and so do not give medical advice but I do suggest that men, at risk for the BRCA mutation, see a CGC, get tested and if BRCA+ positive, try to get involved with a screening program, ideally at a high-risk clinic. Some of the ones I am familiar with are at MD Anderson Cancer Center, Mayo Clinic, UCLA, UCSF, Stanford Cancer Center, Johns Hopkins Sidney Kimmel Cancer Center and Memorial Sloan-Kettering Hospital and there are others.

Coutney's Dad..sorry to write more references to your post but I got up thinking about what you wrote and wanted to post some additional information that possibly could be of use to you and other members of your family and to BRCA+ women and their loved ones in our TNBC community. I simply cannot assume that you or everyone here knows about the BRCA mutation; that is why I have written. It seems that when a BRCA1+ woman has breast cancer, 75% of the time it is TNBC but the converse is not true. 75% of women with TNBC do not carry the BRCA mutation.

wishing you as good a day as possible,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: lynda65
Date Posted: Feb 07 2013 at 9:25am
Dear Courtney's Dad:

I am sorry for your loss. My sister, Barbara died 20 1/2 years ago. She had been diagnosed with Inflammatory Carcinoma. She fought for 2 1/2 years and was 50.

I am 65 and was diagnosed with Triple Negative Breast Cancer May 2012. I went through chemotherapy and radiation. I completed treatment 12/26/12 and am 44 days a survivor.

I don't have the BRAC mutation. The doctors told me as far as they know I am clean.

I wake up everyday and embrace the day. I live life to the fullest and believe I will live a long, healthy life.
We have to believe.

Take care of yourself and your family. Embrace your grandchildren.

Lynda


Posted By: beck
Date Posted: Feb 07 2013 at 9:55am
im at loss for words, cant amgine what your feeling i have a 39 yr. old daughter i have tn .. so sorry for your loss.


Posted By: TriplePositiveGirl
Date Posted: Feb 07 2013 at 1:49pm
Steve,

Your emails to Courtney's Dad are very moving and informative. I do hope he reads these. Its also important to mention that most of us who have TNBC believe we will survive this disease. We have to have hope.

To all reading this post:

 I know it must be awful beyond words to lose a child to cancer (or any disease for that matter), which I think has colored Courtney's Dad's opinions about this disease, its treatment options and overall outcomes for women with various stages of this disease. I do hope that anyone reading this post takes this into account, especially newly diagnosed women who are just beginning their battle with this disease. MOST women do survive and live long healthy lives. DON'T EVER FORGET THAT FACT.

Lisa


Posted By: CourtneysDad
Date Posted: Feb 08 2013 at 9:21am
Dear Everyone,
 
Thank you for your kind responses.
 
My experience with the Triple Negative Cancer and travels to seek treatment around the country were extensive. We attempted to enter many trials but unfortunately were turned away for one reason or another time and time again. It was very exhausting and disheartening to say the least. The last plane trip with my daughter for a trial was to Montana. She could hardly sit up and we had her in a wheelchair throughout the trip. It was amazing to see her desire to live. We literally carried her on and off the plane due to the small size. Wheelchairs would simply not fit.
 
However, to go back to the beginning, when my daughter was first diagnosed with cancer we took her to one of the best facilities in the country. Unfortunately, she was not tested for triple negative(not a common test run for cancer patients initiallly ), therefore, she was given the standard chemo and radiation treatments, which don't work with triple negative cancer. So, 6 months were wasted until they realized that something was wrong. It finally doned on them to test for triple negative cancer. Once that was found, we were told that the chances of successful treatment was very low and that we should expect my daughter to live 18 months at best due to the type of cancer. It was amazing how accurate they were.
 
Now, that we know about the generic triple negative gene is in our family, all of children, nieces and nephews have been tested. The gene comes from my father's side of the family. They were of Eastern European ancestory. We now know that several of his brothers carry the gene too. It has been passed to their daughters. This type of cancer affects the females but not the males. The males are the carriers. We know this genic triple negative gene is common in the Jewish population of New York City. The genetic tests show it comes from a particular region of Eastern Europe.
 
Anyone, who has this type of cancer, my recommendation is simple. Please have the operations to remove the breast and uterous ASAP. If you have the gene and not the cancer, please have tests run every few months, if you choose not to perform the operations.
 
I do not wish this to happen to any other father or daughter. For now, surgery and testing are the only cures, which I am aware of that work. Chemo and radiation will slow it down. It will not cure it.
 
One last thought to share is in regards to the last physician in Montana, who looked at us and told us that my daughter could not participate in his trial. We had flown there months before when she was healthy enough but were turned away. After working for months, I was finally able to get a waiver to get her in the trial and we flew back. He had tears in his eyes as he told us that it was just too late to do anything. By then my daughter was too weak to fly back to Texas so we drove across the country stopping at a hospital for a night to get her treatment to complete the trip. We got her home to her bed. She died the next morning on her 10th wedding anniversary on Thanksgiving day.
 
I remember thinking back a few years. I would say to myself how lucky I was to have healthy kids and a life without so much pain. Those days are a dream now.....
 
I wish everyone well and hope that no one has to go through this.......one day in the far, far future.
 
CourtneysDad 
 


Posted By: Annie
Date Posted: Feb 08 2013 at 2:13pm
Dear Courtney's Dad,   I am so sorry for all that you, your dear daughter and family have suffered.   It is clear that you did all that you could possibly do. What a great Father you must be. You are showing a fine example of just what it means to be such a loving person and to all who those who do not have any one to represent this for them it is quite wonderful to see. Thank You for posting about Courtney...Annie

-------------
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012


Posted By: Katdoll
Date Posted: Feb 08 2013 at 4:57pm
I'm sure I'm preaching to the choir here, but I want to confirm (for myself as much as others) that TNBC is curable and that there is hope for everyone who has battled this disease.  I am from a BRCA1 family with four TNBC survivors.  One has been cancer free for 18 years, so I think it is safe to say she is "cured."  My sister hit the 3-year mark six months ago, my cousin just got to 2 years, and I am very close to the 3-year mark, so only time will tell with us - but our odds of a cure get better as time goes on and are very good already.  Also, there is promising research happening right now that will result in more people being cured.  So everyone who has battled this disease has a chance for a cure. 
I have learned not to focus on whether I am cured but rather on the fact that I am a "survivor" with the ability to enjoy the blessings of each day as it comes.  It think this is one of the gifts that cancer can bring: the keen knowledge that you are mortal, the ability to accept your mortality with less fear, and the increased ability to love your life every single day.  Yes, it is possible that there is cancer left in my body and that it will "come back" someday and maybe even take my life.  But that is just a possibility, and I will not let it dash my hopes or change the way I experience the gift of my life. 
 
I join Steve and CourtneysDad in urging that people who have a BRCA mutation or significant family history of breast and/or ovarian cancer obtain advice from qualified genetic counselors and health care professionals about their risks and how to reduce them.  The website http://www.facingourrisk.org" rel="nofollow - www.facingourrisk.org is a great place to learned more about hereditary breast and ovarian cancer, as are the resources Steve suggests.
 
I wish peace and hope to everyone who has battled TNBC, is supporting a TNBC survivor, or grieves for someone who passed away from TNBC.


-------------
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).


Posted By: LatoyaL
Date Posted: Feb 08 2013 at 7:35pm
Thanks a lot Steve for your advice.  You've helped to give me some peace, because I've been really worrying myself like crazy, in constant fear of having a recurrence.


Posted By: LatoyaL
Date Posted: Feb 08 2013 at 7:36pm
@Courtney's Dad, I very sorry to hear that your daughter lost her fight with this disease.


Posted By: Lillie
Date Posted: Feb 09 2013 at 10:05am
Dear Courtney's Dad,
 
We have a 'tribute' thread on this site.  It is a way of remembering our friends who have died from triple negative breast cancer.  Would you be willing to post Courtney's name in the tribute section?  
 
I have posted the names of 4 or 5 friends who lost the battle with triple negative cancer.  Every one of them lived less than 2 years after diagnoses.  Every one of them fought to beat the cancer, but it wasn't meant to be.  There are times when the chemo doesn't work, or the cancer is caught too late, or the body is too frail to handle the chemo.   
 
Courtney's Dad, these are true facts that I post.  We would love to REMEMBER Courtney in our tribute's thread.  I am so sorry for your loss and may God hold you close and comfort you and your family, as you grieve.
 
Love and God Bless,
Lillie


-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: CourtneysDad
Date Posted: Feb 09 2013 at 10:42am
Dear Triple Negative Breast Cancer Friends,
 
It is kind of you to request the tribute to Courtney.
 
However, my purpose to joining this site, which didn't exist when Courtney was alive, is to help educate people on options to consider, to educate from my experiences and to dispell misconceptions about the disease. Here are some additional lessons learned:
 
(1) There are a number of websites, who have people on the phones and online, that simply say " I'm a cancer survivor and you can be one too. "
* I found that when I called these sites and asked for assistance regarding recommended hospitals, physicians, methods of successful treatment, promising drugs in clinical trials, etc., I simply got this answer " I am a cancer survivor and you can be one too. "
* Here I was, a desparate father seeking answers and recommendations from people to save my daughter. I wanted specifics from treatments, which worked for them, to other things to try. I found none that. I simply found the same answer when I pressed further " talk to your physician ".
* The truth is when I talked with my physician I was told that they can try many things from chemo to radiation but ultimately the honest few looked me in the face and said " you have 18 months or less with this type of cancer. "
(2) There are many types of cancer, where the existing technology works. Unfortunately, Triple Negative is not one of them. It is different in many ways and takes a different approach than the current chemo drugs and radiation treatments.
 
I trust in my heart that there is a medical researcher somewhere in the world with a mission in life to cure this type of cancer. He / she has probably lost a loved one because of it. Therefore, they have a personal commitment to finding a cure. I know that this person is out there. I kept looking for this person around the world but didn't find him/her a few years ago. I hope that they exist and will one day find the cure.
 
I can dream.............
 
CourtneysDad


Posted By: CourtneysDad
Date Posted: Feb 09 2013 at 11:08am
Here is the answer to the original question( to the best of my knowledge over the past 5+ years of searching ):
 
" Is Triple Negative Breast Cancer Curable? "
 
No - if you use chemo and radiation. No known chemo drugs or radiation treatments will cure Triple Negative Breast Cancer.
* If anyone knows of a specific drug/s, which has worked for them( please don't respond with " see your physician or I'm a cancer survivor " ), let us know. I would love that there is an answer to this question. I tried to keep my daughter alive for exactly this answer. The best research was in developing a custom vacine to your specific Triple Negative Breast Cancer a few years ago. I have not read anything about this recently. I was looking into doing this for my daughter at the end. It was very expensive( +$250,000 ) but I was willing to try anything. It was just too late for her and the technology wasn't ready a few years ago.
 
Yes - surgery and you catch it before it goes into your lymph nodes. If it has gone into your lymph nodes then the surgery will not be of any good. The cancer is in your blood and will show up in other organds in time.
 
Good luck......hope that this helps someone because of what Courtney went through.
 
CourtneysDad


Posted By: SagePatientAdvocates
Date Posted: Feb 09 2013 at 11:41am
Dear Courtney's Dad,

I have made a great effort to stay away from this thread due to my and what I believe is everyone's sensitivity to your loss.

However your continued inaccurate information is not helpful to our community. 

You are unfortunately misinformed in certain major areas...You acknowledge that men in your family were the 'carriers' of the gene but only women get cancer. That is simply not true. If you want to understand please speak to a Certified Genetic Counselor and all will be explained. Yes there is an Ashkenazi Founder's Mutation and most of the Ashkenazi Jews came from Eastern Europe. I am Ashkenazi Jewish and I have one of these mutations and I do not have cancer, yet I passed the mutation to my daughter who was diagnosed with TNBC. But I am at risk and I know many BRCA+ men who have developed various cancers...prostate, colon, pancreatic, brain, melanoma to name a few. To tell the BRCA+ women in our community that there male loved ones are not at risk is a disservice to the male relatives in their lives.

Your portrayal of a TNBC gene and the fact that any woman with TNBC faces an incurable situation is simply not true. You have your own tragic experience with your daughter and my heart aches for you. I am deeply saddened that she did not receive a proper diagnosis or treatment and that experience, I believe, has totally prejudiced your view of TNBC. We have many women here who are cured, in my opinion, including my daughter who is now an 8+ year survivor. Are there any guarantees to what I have said? Perhaps not, but please tell me what guarantees there are for any of us in this life. 

Your words are harmful to many of the women here with TNBC. Please give it a rest, sir. Having said that, all of us, here, are sympathetic to what you have gone through. But, your opinions of hopelessness, for all here, are not warranted and again I am starting to truly resent them. Sorry to write that but that's how I feel. I know your intentions are good but I believe you are doing more harm than good with your continued inaccurate posts. 

If you want to speak to someone about this who will not parrot what you have been told in the past I again encourage you to call a Certified Genetic Counselor of you are welcome to call me. You have my contact info. The call may help you or some of your uncles and their families. But please only call me if you are truly willing to listen. I promise to listen to you but you also need to be able to listen to me.

Here is a link to finding a Genetic Counselor. you just need to enter your zip code and cancer as area of specialization.

http://www.nsgc.org/FindaGeneticCounselor/FindaGeneticCounselorbyUSZipCode/tabid/69/Default.aspx" rel="nofollow - http://www.nsgc.org/FindaGeneticCounselor/FindaGeneticCounselorbyUSZipCode/tabid/69/Default.aspx

wishing you peace as you continue to grieve.

Again, I know you write without malice and wish to be helpful to our community but your misconceptions need to be corrected. 

warmly,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: CourtneysDad
Date Posted: Feb 09 2013 at 12:50pm
Dear TNBC community,
I do hope that everything that you say is true. That would be wonderful. However, I have not heard any specifics of treatment recommendations. Please provide some and I would be happy to pass these along to my family and their children.
 
What clinics do you recommend? What chemo do you recommend? Please be specific.
 
I have researched the world on this subject to no avail. I do hope that their is treatment. Of the many, many doctors, who I have seen, from Texas to New York to California. No one knows of a cure for this type of cancer. Please help us all and provide specifics. I would love for that to be true.
 
Thanks,
 
CourtneysDad


Posted By: SagePatientAdvocates
Date Posted: Feb 09 2013 at 1:17pm
dear courtneys dad forgive my typing and any errors  - I am using my blackberry to post for the first time to tell yu thx for your post  I am away from my cmputer for afew hours and will rspond lter hopefully you will har fm ohers wrmly  steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: beck
Date Posted: Feb 09 2013 at 2:39pm
courtneys dad i feel for you, and think god i know from being on here , that you can survive tn, and i understand your greif, i lost my mother to a mistake at a hospital last year, im still bitter, i cant imagen losing a child , and if it helps to sound off here , do it, we have broad shoulders, but please listen to Steve , he knows his stuff , and im sure he worrys about his daughter , i have a brother who went through cancer, he said once you had it , you will spend the rest of our lives looking over our shoulders, hes right, you have been through hell, and i feel so bad for you, you will never get over it, but you like us will find that new normal.   Beck


Posted By: 123Donna
Date Posted: Feb 09 2013 at 3:28pm
I have to believe TNBC is curable. We've seen many women from this forum that were Stage 3 with many positive lymph nodes that are long term survivors. Some just had the standard surgery, AC/T chemo, radiation. What's unpredictable is some Stage 3 stay NED, but some Stage 1 end up with mets. The problem is TNBC is not one disease but more like six or seven sub-types. It's true we don't have targeted therapy, but many new clinical trials that hopefully will help TNBC in the future. I believe the future may be with genome testing as each of our tumors are unique and one size fits all chemo doesn't always work for us. There are many brilliant researchers out there trying to unravel the mystery. They'll get there one day. How soon! I don't know, but not soon enough.

Courtney's Dad, I am so sorry for your loss. My heart goes out to you and all the suffering you and your family has endured.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: denise07
Date Posted: Feb 09 2013 at 4:30pm
Courtney's Dad,
I am so very sorry for the loss of your daughter it is so unfair and I can not even express in words howsad this makes me feel there are just no words to say for such a loss it is so devastating. But I have to disagree that this disease is not curable with no disrespect to you and your family. If that is true that it is not curable then why are so many women still alive and NED 10, 20 years later? and if it is in your lymph nodes it is in your blood stream that is not true i asked all of my doctors that and they said no, I had 2 lymph nodes affected in my breast and I am still here, yes I had surgery as soon as possble and had my tumor removed but I don't know if that had made any difference maybe? I just have to say this for the newbies who are just diagnosed tnbc is CURABLE straight from my oncs mouth and is is very on top of things and very aggresive. Courtney's Dad I just had to voice my opinion on this again with no intent to disrespect you and your family. You are a wonderful father who did everything he possibly could have to help his daughter again I am sooo very sorry I can't even begain to imagine how you and your family feel I to have a daughter and worry so she is my one and only.We never know with any type of cancer but there are More survivors out there now then there was 10 years ago.
Very Sorry
Denise


-------------
DX Idc 10/07,st2,gr3,2/6 lymphnodes


Posted By: SagePatientAdvocates
Date Posted: Feb 09 2013 at 7:40pm

Dear Courtney's Dad,

 

I am very happy you wrote...Your posts have been agonizingly difficult for us as a community because we are all sensitive to your loss. And the word sensitive does not come close to describing the agony we feel in your words.

 

I think the best way of answering your questions is to deal with your points  in all your posts, including the questions you raise in your most recent. You mention the same points several times but I will mention that in my responses (in red)..

your February 6 post

My daughter passed away from triple negative breast cancer after a little less than a 2 year battle. I am writing this to hopefully help some other dad's learn from my experiences and to help save their daughters.

These are the lessions, which I have learned from my experiences with triple negative breast cancer:

(1) There is no cure for triple negative breast cancer.

I do not believe that is an accurate statement. There is no cure for Stage IV TNBC but that does not mean women should give up hope or treatment. There may be a new drug approved, in the future, that will help our community.

(2) The average life expectancy is around 18 months, once you are diagnosed. My daughter lasted a few months longer than this.

If you are diagnosed as Stage IV disease when diagnosed it may be that life expectancy is poor. However I believe the majority of women, here, with TNBC have been diagnosed as Stage I or Stage II. Many of these women respond well to chemotherapy and their chances for long term survival are actually better than women with other types of breast cancer.

see http://www.ncbi.nlm.nih.gov/pubmed/18695137" rel="nofollow - http://www.ncbi.nlm.nih.gov/pubmed/18695137

go to free article and scroll down to-


The residual risk of recurrence was statistically significantly higher for patients with hormone receptor–positive tumors than for those with hormone receptor–negative tumors in a stratified analysis by endocrine therapy (P < .001;  http://jnci.oxfordjournals.org/content/100/16/1179.long#T1" rel="nofollow -


(3) This type of cancer is particularly frustrating for the doctors.

agreed

The reason is that it mutates so rapidly to the current cancer fighting drug. The doctor takes a biopsy of the cancer. He tests for a set of drugs and finds one that works. The treatment starts and our experience is that this drug will usually work for 1 to 3 months. After that the cancer will mutate and you have to do the biopsy again to find the next combination, which may work for a few months.

no evidence that I know of to prove your statement about mutation due to chemo is correct. I don’t believe the researchers fully understand what happens and that is one of the frustrations you mention

(4) The only cure, this is important, is to immediately have surgery to remove all possible sources for the cancer to start( uterous & breasts ), if you find any cancer at all. My daughter did not want to do this initially because she wanted to beat this and to have another baby.

we must differentiate here between BRCA+ women who have breast cancer that is TNBC and women who are BRCA- negative women who have TNBC. Most doctors would indeed recommend bi-lateral mastectomies and oophorectomies (not necessarily complete hysterectomy as I believe you mean) for BRCA+ women with TNBC although they might recommend neo-adjuvant treatment  first or adjuvant therapy after surgeries and perhaps radiation therapy.

The standard of care for women with TNBC who have tested BRCA- negative varies greatly and may include lumpectomy, single mastectomy, bi-lateral mastectomies, now-adjuvant or adjuvant chemotherapy, radiotherapy


 In the end, she finally agreed to the surgery but unfortunately it was too late. The cancer had spread to the lymph nodes. It was a very small number of cells but in time it had spread to her entire body. Once the cancer passed the brain boundary in about 18months, it was simply a matter of weeks before it was over.

We, again, feel your horrible devastation.


(5) Do not waste your time with attempting a clinical trial.

in my opinion, this is poor advice. The only way we can try to get a new drug that will help our community is via clinical trials. Most clinical trials will fail but at some point I believe something will help women with TNBC.

We tried to get into them but my daughter's white blood count was too low. I drove her across the country to a medical facility to start a trial only to be turned down, once we arrived. It took months of work to get her into the trial. Finally, the doctors simply refused to give her the drugs. They said that it would kill her by then.

tragic, deeply sorry.

You have to understand that the trials have one purpose: that is to get approved by the FDA for reimbursement. The companies do not want people in the trials, who may not be successful( fit an optimal profile ). The taints their results. I did hear of one neighbor, who was able to get into a trial quickly. She was fortunate because her doctor knew the head of the study team and favors were done outside of the trial with waivers.

would rather speak privately on this topic.

(6) The sad truth is that none of the current cancer drugs work on triple negative breast cancer. Only recently, has it achieved any awareness by the medical community.

disagree, my daughter’s TNBC has responded well to AC+Taxol and many in our community and others I have been in contact with have responded well to that treatment as well as other protocols.

(7) All the chemo and radiation will wear you down. It took such a toll on my daughter.

the same for most women   BUT many women do fairly well and become survivors.
In the end, she decided to stop treatment and live a normal life for as long as she could. The cancer took her about 5 months after this decision. I don't blame her. She underwent so many surgeries, tests and chemo treatments. It wasn't a life really.

difficult decision and I respect what she did and deeply sad, for her and for you, that she arrived at that point

 

So, in summary, my daughter's death did save other family members lives. Several nieces were found to have triple negative cancer over the past several years. I called their families and immediately advised the radical surgery to remove the breasts and uterus. All of them are alive today and cancer free.

many oncologists would have recommended your nieces have chemotherapy and perhaps radiotherapy in addition to the surgeries.
delighted they are all doing well.



It has been 2 years and counting for them. Their fathers have thanked me many times.

I wish your nieces a long, full life. The fathers need to start doing surveillance for various cancers if they are BRCA+.

 

I miss you Courtney.....evey day.

 

Dad

the reason we all ache for you

…….

your February 7 post

Dear Everyone,

 

Thank you for your kind responses.

 

My experience with the Triple Negative Cancer and travels to seek treatment around the country were extensive. We attempted to enter many trials but unfortunately were turned away for one reason or another time and time again. It was very exhausting and disheartening to say the least. The last plane trip with my daughter for a trial was to Montana. She could hardly sit up and we had her in a wheelchair throughout the trip. It was amazing to see her desire to live. We literally carried her on and off the plane due to the small size. Wheelchairs would simply not fit.

tragic doesn’t even come close..very, very sorry for Courtney and you

 

However, to go back to the beginning, when my daughter was first diagnosed with cancer we took her to one of the best facilities in the country. Unfortunately, she was not tested for triple negative(not a common test run for cancer patients initiallly )

If she was not tested for TN the cancer center made a bad mistake; and it is a test run initially. As I wrote elsewhere unless this happened many decades ago there is simply no excuse for her not being properly tested for TNBC.

, therefore, she was given the standard chemo and radiation treatments, which don't work with triple negative cancer.

don’t know what specific treatment she received but again tragic


So, 6 months were wasted until they realized that something was wrong. It finally doned on them to test for triple negative cancer. Once that was found, we were told that the chances of successful treatment was very low and that we should expect my daughter to live 18 months at best due to the type of cancer. It was amazing how accurate they were.

I assume (always dangerous to do) that Courtney already had metastatic disease at this point? It is important for you to realize that Courtney received poor diagnostic and treatment advice. Many here received good diagnostic and treatment advice and benefitted from standard of care treatment.

 

Now, that we know about the generic triple negative gene is in our family, all of children, nieces and nephews have been tested. The gene comes from my father's side of the family. They were of Eastern European ancestory. We now know that several of his brothers carry the gene too. It has been passed to their daughters. 

There is no “generic” TN gene. There is a BRCA mutation and 75% of the time women with the BRCA1+ mutation who have breast cancer have TNBC.
This is one of your core misconceptions.

It is good that your family got tested for what I assume is the BRCA mutation.


This type of cancer affects the females but not the males.

not true, the males can be affected, as well and need to start surveillance if they carry the mutation.


The males are the carriers. We know this genic triple negative gene is common in the Jewish population of New York City. The genetic tests show it comes from a particular region of Eastern Europe.

It is called the BRCA Ashkenazi Founder’s Mutation. There are three of them BRCA1 (187delAG) BRCA1 (5382 insC) and BRCA2 (6174 delT)

 

Anyone, who has this type of cancer, my recommendation is simple. Please have the operations to remove the breast and uterous ASAP. If you have the gene and not the cancer, please have tests run every few months, if you choose not to perform the operations.

If you are talking about the BRCA mutation many oncologists would agree with you, and some would not, but earlier you referred to a TN mutation. There is no specific TN mutation that we know of and you addressed an entire audience of women with TNBC..some are BRCA positive and other are not and there are at least six different subtypes of TNBC. There is nothing “simple” about TNBC and as I mentioned above many oncologists recommend chemotherapy and radiation therapy even with the surgeries you mentioned, depending on individual circumstance.

If a woman has the BRCA mutation at times she will do prophylactic risk-reducing surgeries. They do not wait to get cancer but try to insure that they never get cancer, not just react to it. But be proactive. I am not recommending any woman do this but it is an option to be explained by a CGC and perhaps, considered.



 

I do not wish this to happen to any other father or daughter. For now, surgery and testing are the only cures, which I am aware of that work.

Surgery and testing may not be cures..

Chemo and radiation will slow it down. It will not cure it.

You are correct and once the disease is Stage IV it is considered incurable but Courtney’s Dad that does not mean a woman should give up. Many, many women live many, many years with Stage IV disease and the hope that a treatment may help them is important.


 

One last thought to share is in regards to the last physician in Montana, who looked at us and told us that my daughter could not participate in his trial. We had flown there months before when she was healthy enough but were turned away. After working for months, I was finally able to get a waiver to get her in the trial and we flew back. He had tears in his eyes as he told us that it was just too late to do anything. By then my daughter was too weak to fly back to Texas so we drove across the country stopping at a hospital for a night to get her treatment to complete the trip. We got her home to her bed. She died the next morning on her 10th wedding anniversary on Thanksgiving day.

 

I remember thinking back a few years. I would say to myself how lucky I was to have healthy kids and a life without so much pain. Those days are a dream now.....

 

I wish everyone well and hope that no one has to go through this.......one day in the far, far future.

the above three paragraphs literally break my heart. And thank you for your good wishes for our community.

 

CourtneysDad 

from your post today-

However, my purpose to joining this site, which didn't exist when Courtney was alive, is to help educate people on options to consider, to educate from my experiences and to dispell misconceptions about the disease. Here are some additional lessons learned:

 

(1) There are a number of websites, who have people on the phones and online, that simply say " I'm a cancer survivor and you can be one too. "

* I found that when I called these sites and asked for assistance regarding recommended hospitals, physicians, methods of successful treatment, promising drugs in clinical trials, etc., I simply got this answer " I am a cancer survivor and you can be one too. "

if you spend some time on the site, and read past threads, you will see that we recommend various specialists in TNBC and discuss the positives and negatives women have experienced with different treatment protocols. No one here will give you medical advice but we can be a lot more helpful than the experiences you have had.

* Here I was, a desparate father seeking answers and recommendations from people to save my daughter. I wanted specifics from treatments, which worked for them, to other things to try. I found none that. I simply found the same answer when I pressed further " talk to your physician ".

at a certain point in a conversation with you I would also say talk to yoru physician but I would ghave pointed you to expert Cerified Genetic Counselors and Breast Medical Oncologists who are TNBC experts.

* The truth is when I talked with my physician I was told that they can try many things from chemo to radiation but ultimately the honest few looked me in the face and said " you have 18 months or less with this type of cancer. "

Can’t comment on exactly what Courtney’s Stage was  but there is no precision as to how long someone will live, from my experience, just educated guesses that are often wrong.


(2) There are many types of cancer, where the existing technology works. Unfortunately, Triple Negative is not one of them. It is different in many ways and takes a different approach than the current chemo drugs and radiation treatments.

See reference above..in certain cases the long term survival for some women with TNBC is better than other breast cancers.

 

I trust in my heart that there is a medical researcher somewhere in the world with a mission in life to cure this type of cancer. He / she has probably lost a loved one because of it. Therefore, they have a personal commitment to finding a cure. I know that this person is out there. I kept looking for this person around the world but didn't find him/her a few years ago. I hope that they exist and will one day find the cure.

 

I can dream.............

There are many, many researchers around the world working on TNBC and our TNBC Foundation is constantly looking at opportunities to support various research efforts with grants. I also, hopefully, will be attending a conference in London this June with probably 200 researchers working on this problem. And yes, some of them have lost loved ones to TNBC as I have. And yes I agree with you; that spurs many on.

http://www.breakthroughconference.org.uk/programme.htm" rel="nofollow - http://www.breakthroughconference.org.uk/programme.htm


I dream as well. Actually, we may not be as different as you think. I hope we can share a meal and talk quietly one day.

 

From your last post today (at least as far back as when I started working on this…3 hours ago)

Dear TNBC community,

 

I do hope that everything that you say is true. That would be wonderful. However, I have not heard any specifics of treatment recommendations. Please provide some and I would be happy to pass these along to my family and their children.

 

What clinics do you recommend? What chemo do you recommend? Please be specific.

 

I have researched the world on this subject to no avail. I do hope that their is treatment. Of the many, many doctors, who I have seen, from Texas to New York to California. No one knows of a cure for this type of cancer. Please help us all and provide specifics. I would love for that to be true.

 

Thanks,

 

CourtneysDad

A global response to this post-

There are many high risk clinics across the country for men/women with the BRCA mutation or a family history that indicates they could be at risk.

I work as a volunteer patient advocate and have good relationships with the following clinics and have referred women to oncologists/Certified Genetic Counselors there-


MD Anderson Cancer Center Houston TX
Memorial Sloan-Kettering Hospital NYC
Mayo Clinic-Rochester MN
UCLA-Los Angeles
UCSF-San Francisco
Johns Hopkins-Baltimore
Dana Farber Cancer Center-Boston
University of Michigan-Ann Arbor
UNC Cancer Center-Chapel Hill NC
Stanford Cancer Center-Stanford, CA

There are others and again I invite you to call me and we can discuss.

I do not recommend a specific chemotherapy. That is medical advice, but again it you some time on our site you will see various chemotherapy protocols that women here have had experience with some favorably and some unfavorably. Each case is different and you need knowledgeable oncologists to help you and your family.

Here is a u-tube videos that you might find enlightening-

Dr. Lisa Carey-UNC

http://www.youtube.com/watch?v=5ZflMfL-HRc


warmly,

Steve

p.s. I don’t know if my 3 hours were well spent but I feel better having done it.  I believe the education done on our wonderful site has saved lives and we are fortunate enough to have many, many people on our site who spend many hours researching in an effort to help themselves and equally important to help others. It is a beautiful community that also offers emotional support for women with TNBC and their loved ones and I am glad you joined us, especially in view of the tragedy you have endured. Hopefully with increased knowledge you can further help your family. 


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: TriplePositiveGirl
Date Posted: Feb 09 2013 at 7:49pm
Dear Courtney's Dad,

I see that you are in Texas. One of the leading medical centers in the US that have specialists in TNBC treatment is MD Anderson, which is located in Houston. Did you visit with any of their doctors? This might be a place that other family members, if need be, could seek medical help. I know that other women (as well as Steve) probably know the specific doctors at this facility that would be the right ones to consult with. 

It sounds like by the time your daughter was actively seeking medical treatment the cancer had already progressed to stage 4. This would of course be a more difficult challenge to treat than stage 1 disease. 

I completely agree with what Steve and the other women have said to you in their posts. We are all very sorry for your loss, but respectfully disagree with your inaccurate perspective on TNBC and to some extent, find it offensive to those fighting this battle. We need positive energy and vibes - not fear mongering.

Sincerely,
Lisa


Posted By: Annie
Date Posted: Feb 09 2013 at 7:54pm
Steve,   The 3 hours involved in your response are pleasing to all of us here. Thank You for your attention to the smallest detail, something we have learned to count on from you and appreciate...Annie

-------------
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012


Posted By: TriplePositiveGirl
Date Posted: Feb 09 2013 at 8:00pm
Steve,

You are amazing. Your post is so perfect. I would say that was 3 hours VERY WELL SPENT...

I thank you.

Lisa


Posted By: Lillie
Date Posted: Feb 09 2013 at 8:40pm
Dear Steve,
Thank you for giving our community 3 hours of your time to help us all.  Bless You!
 
Dear Courtney's Dad,
I am a 6 year and 3 month triple negative breast cancer survivor.  You can see from my signature below that I was stage IIb when diagnosed with 1 lymph node positive for cancer. 
I have no guarantee about the future, but all of us here, (young and not so young), are trying to "Find Some Beauty In each Day".....  Please join us in that endeavor.
 
God Bless,
Lillie
 


-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: CourtneysDad
Date Posted: Feb 09 2013 at 11:28pm
Dear TNBC forum,
I wish all of you were here a few years ago for my daughter. Perhaps, it could have made a difference.
 
Good luck and signing off.......
 
You are missed every day Courtney.....
 
CournteysDad
 
 
 
 
 
 


Posted By: SagePatientAdvocates
Date Posted: Feb 09 2013 at 11:44pm
Dear Courtney's Dad,

I wish we could have been a resource, too.

Wishing you some peace as you grieve.

We and I shall always be here for you and your family. 

Please be kind and gentle to yourself.

warmly,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: mags20487
Date Posted: Feb 09 2013 at 11:48pm
Steve...a thousand thanks for that well put together response. 
Maggie

-------------
Diag 8/17/2011 2cm metaplastic grade 3 bmx 8/23/2011 3/18 lymphs-Taxol x4 9/22/11 a/c x4 1/16/11.rads and recon 2012 diep 11/1/12 failed left side redone gap flap 3/5/13. lymph node transfer 5/22/13


Posted By: beck
Date Posted: Feb 10 2013 at 9:29am
courtneys dad, it must of been so alfwl to have gone through, what you and your daughter went through, i wish this site had been here then to, not sure if you said how long this has been, im not up on alot of things like chemo and clinics , just follow my doctors advice, so far it has worked, today i think there is more awareness of tn, not so much in the past,you just got standard chemo, and sometimes it was enough, sometimes not, it is sad, i hope you got some help with getting peace in your life, you were and are a great dad, dont beat yourself up, im sure countney wouldnt of wanted that, feel free to come on and post, if you need some help with it, sometimes life can be so unfair,, Beck


Posted By: dldlogan
Date Posted: Feb 10 2013 at 3:18pm
Steve,
I want to tell you I appreciated the 3 hours you spent on your reply.  Clap Clap I read this last evening and should have responded to you then.  I was awake most of the night going over this in my head.
 
I lost my younger sister to breast cancer back in 1995 at age 42.  She was stage 4 when diagnosed.  I do not know the pathology of her cancer, but at this stage, it hardly matters.  She died exactly 18 months to the day after being diagnosed.  The day she was diagnosed, was the same day my mother died of uterine cancer.  And a year ago this month I lost my older/only brother to lung cancer.
 
When I found the lump back in June 2012, all I wanted was to get it out even before they knew it was cancer.  It was almost 2 months to get all the test run and have the surgery.  It was an agonizing time, I'm not a patient person.  As it turned out, the lymph node was negative, so we got it in time before it spread.  After some debate I went for the chemo...no second chances and I did not want this to come back to my bones, lungs, brain or liver. 
 
My schedule was to get the surgery, do the chemo and 6 months later be on a protocol of observation and occasional tests to insure it does not return...I'ld be as good as new!  My world has been rocked by what I've read here on the website recently.
 
Courtney's Dad, I'm so sorry for your loss.  As you can see, we all have had losses.  There is no measure in quantity or magnitude since we each feel these losses to the core of our being.  I hope you find peace in your heart and as they say, "Let go and Let God".  This really works if you let it.
 
Love to all,
Diana
 
 
 
 


-------------
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV


Posted By: krisa
Date Posted: Feb 10 2013 at 4:14pm
Courtney's dad-
Here is a website that is Jennifer Griffins blog. She is a corresponent for FOXnews.
She was diagnosed with TNBC at the age of 40, while still nursing her son--2008.
She takes the reader on her journey of chemo, radiation and surgery. So far so good!

http://jengriffinblog.blogspot.com/2009/11/thank-you-from-bottom-of-my-heart.html



Posted By: mags20487
Date Posted: Feb 10 2013 at 4:46pm
Diana..that post made me cry....you have suffered so much with the loss of your siblings and mother.  It must have been awful for you to wait through all the days of testing and decision making.  I too was deeply upset by the postings and had to rattle my strength to realise that it simply was unfounded.  We all can be influenced (quite easily) to jump off the sanity wagon and wallow in despair but many of us have chosen to continue to live a fulfilling life full of love and happiness.
 
Courtenay's dad....your pain is so evident in the posts and I am truely sorry that you and your family have had to endure this tragedy.  I know some cancers are definitely resistant to certain therapies as was the case with your daughter.  May you be able to find some happiness in your days and again very sorry to you and yours
 
Maggie


-------------
Diag 8/17/2011 2cm metaplastic grade 3 bmx 8/23/2011 3/18 lymphs-Taxol x4 9/22/11 a/c x4 1/16/11.rads and recon 2012 diep 11/1/12 failed left side redone gap flap 3/5/13. lymph node transfer 5/22/13


Posted By: 123Donna
Date Posted: Feb 10 2013 at 8:50pm
I've been remembering a couple members that no longer post anymore or as often as they did in the past.  Rena is a long term survivor:  Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive.   Kidzrn:  2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, 4 CAT, then Avastin every 3 wks...NED 2/09, 2/10, 6/10, 10/10, still NED.  These are just two out of probably many that are no longer active on this forum.

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: beck
Date Posted: Feb 11 2013 at 9:42am
is it curable? and at what point can we say we are cured, i dont think we really know, andry Mitchell the news lady , got on tv when she first announced she had breast cancer, after her surgury she said she was cured, i read so many post on this remark, everyone with breast cancer was upset, saying she should not of said that because its to soon, i say if it helps you move on its your business, but i guess when your on tv its different, saying we are cured isnt as important , as being able to live our lives like we are, being able to but the worrying behind us seems to be mine and alot of uses battle, living our lives to the fullest, then one day its 3, 4 or five years and we say wow i feel im cured , Beck

-------------
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.


Posted By: Lillie
Date Posted: Feb 11 2013 at 10:26am
Wow Beck!
I admire your optimistic attitude.  Thank you for sharing.  I guess that is sort of the way I have handled my survivorship.  One day at a time and now that I am a little over 6 years since treatment ended I can even think 3 or 5 days at time.
 
I know that is not always the way things work out.  Even when some feel that they have done the best they could, still it has not been enough.   My SIL Faye had a recurrence in the bone about a year after diagnoses.  She blames herself for never having a mammogram and never participating in any kind of medical testing that could have alerted her to a problem.  
There are those who have recurrences and fight and live for years. 
 
Curable???  I don't know at this time;  I guess my future hold that answer.  All I know is, I, like you Beck, have to say, "I feel I'm cured".  Until something happens to me otherwise, I'm living life to the fullest.
 
God Bless,
Lillie


-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: TNinTN
Date Posted: Feb 11 2013 at 11:56am
Reading CourtneysDad's posts regarding the loss of his daughter were heartbreaking and I only wish that he had access to the love and support so freely given on this site while he was going through such a tragic ordeal. Susan and I have a 22 year old daughter and I cannot imagine the anguish he experienced. I pray that he will find peace, even though I know his heart will never mend.
 
Thank you, Steve, for your gentle and thoughtful responses.
 
When Susan was diagnosed, I remember telling a friend that I was scared because there was a chance that she could die. He looked at me and said, "Yes, there is a chance that she could die..... and that chance is 100%..........but not necessarily from TNBC." This simple statement was exactly what I needed to hear at that moment. For better or worse, none of us know what the future holds. As Susan and I were driving back and forth to Vanderbilt over a mountain range and through snow and ice storms to get her treatment, the thought often crossed my mind that Susan could be cured only for us to perish in a car accident on our way home.
 
Since then, I have learned of many TNBC success stories (people that would certainly meet my definition of "cured") through this site and elsewhere. I'm certain that many of us on this site have been cured and will be cured, but we unfortunately have to wait on the passage of some arbitrary date on the calendar to believe it. Three years? Five years? Eight years? I try, with limited success, not to worry too much about recurrence because it destroys my ability to enjoy the present moment. And I do realize that it is pointless to be hopeless. As Steve always says, we should simply try to find the beauty in each day.
 
Martin


-------------
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11


Posted By: TriplePositiveGirl
Date Posted: Feb 11 2013 at 4:55pm
Martin,

That is very well said. You are 100% right in all that you said, especially it is pointless to be hopeless. Some days are much harder than others to embrace this, but each day that I am alive and well I thank god I am still here and healthy. It really reminds me of the song "Day by Day" from the musical "Godspell." 

Lisa


Posted By: amyw2001
Date Posted: Feb 11 2013 at 8:50pm
I just found out today that I am triple negative. I am planning to have surgery on March 1. Meeting with a med onc tomorrow. I am very scared. I am 39 years old and healthy otherwise. At this point it looks like Stage 2 with clinically negative nodes. We won't know for sure until after surgery.


Posted By: SagePatientAdvocates
Date Posted: Feb 11 2013 at 9:11pm
Dear AmyW,

Welcome to our forum. I am sorry that, at your young age, that you are dealing with this.

I am sending you my contact info if you would like to speak privately.

There are a number of things I would suggest you consider if you haven't done so already.

I am not a medical professional so please check with a TNBC savvy oncologist. No matter who your oncologist is now I would suggest you seek a second opinion, both on your pathology report and your treatment plan.

1. has anyone suggested you see a Certified Genetic Counselor and get tested for the BRCA mutation.

2. is your oncologist at a NCCN or NCI facility.

3. has anyone mentioned neo-adjuvant treatment to you

Again, I am not a medical professional. I am an volunteer patient advocate. But maybe a conversation might be useful..

You can call me in about 30 minutes if you wish...or I am happy to call you. 

good luck to you..

warmly,

Steve




-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: ud45
Date Posted: Feb 12 2013 at 12:53am
Hello Steve,

 

What is the difference between neo-adjuvant and adjuvant treatment? I was diagnosed 01/22/13 and still waiting for surgery. I saw both my surgeon and oncologist and they are recommending surgery 1st. I am so anxious to get at least the surgery over with, but my surgeon is insisting on having the BRAC test result before surgery. From all I hear tnbc is aggressive and needs immediate treatment. I want the lump out like yesterday. I am also trying to eat better. Do you know if there are any foods and vitamins that can slow cancer cell growth? Right now I am taking Vit. D and COQ-10, I stopped Omega-3 because I was worried about its effect. Thanks

 



Posted By: SagePatientAdvocates
Date Posted: Feb 12 2013 at 1:24am
Hi ud45,

Neo adjuvant therapy is offered prior to surgery and adjuvant afterwards..

There are various thoughts on both and from my experience there are different philosophies about this even in various parts of the U.S. Normally with TNBC, which is often aggressive, as you mentioned, chemotherapy is recommended either pre-surgery or after. Some oncologists seem to feel that if your mass is > 2CM that neo-adjuvant chemo is desirable because it is an opportunity to see if the chemotherapy is working. If you have surgery first and let's say you have lumpectomy there is often no visual tumor left in your body so it is hard to know whether whatever chemo is suggested is killing your cancer because there is no measurable tumor. 

There are also many factors that play into the decision such as KI-67 score and some test for CTC (Circulating Tumor Cells), lymph node involvement and other information from your pathology report.

With certain aggressive cancers it is felt that you may have tumor cells in your body and therefore, some feel, that by trying a chemo pre-surgery that chemo will not only kill the visible cancer so that you have a pCR (pathologic complete response) but any cancer cells that may be in your system. If you have surgery first and you have cells in your body you normally have to wait six weeks, till your body heals from the surgery, to start the chemo. During that time the cancer cells might be growing. On the other hand if you have chemo first you normally have to wait six weeks to start the chemo and some docs feels that some tumors should be removed right away.

Are your oncologist and surgeon experts in TNBC? Are you being seen at a NCCN or NCI facility? No matter where you are being seen I would suggest getting a second opinion both as to your treatment plan and your pathology slides. I have seen several case where the patient was told she had TNBC only to find out, utilizing FISH technology, that she was HER2/neu+ and she should be/have been on Herceptin. But you need to try to make sure your second opinion is coming from someone who is knowledgeable.

It should not take more than two weeks to get your BRCA results and I think the information is important. That should all be explained to you by a Certified Genetic Counselor (CGC).  I would check with your oncologist regarding supplements. I think most oncologists are in positive agreement about Vit D.  I think eating "better" is always a good thing.

Sorry you are dealing with this. Good luck to you. Hope the above was helpful. If you would like to talk please send me a PM. I am a volunteer patient advocate so no fees and I do not accept monies from doctors, drug companies, cancer centers etc. But, please note that I am not a medical professional and cannot give you medical advice.

warmly,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: kirby
Date Posted: Feb 12 2013 at 2:17am
I am never sure when to jump in. I certainly don't want to diminish anyone's tx or experience. It does differ for all of us. I discovered my lump in January of 2001, 2 weeks prior to my mother passing away from ovarian cancer. I had watched her do battle for 3 1/2 years with as many chemo's. She was 64 and I was 44 at the time.
 
In 2001, the term TN wasn't used. I only knew what I didn't have....no ER or PR + and no her2. The option of mastectomy wasn't discussed. I had a lumpectomy and the tx du jour. I had a 2 cm mass. Some consider that stage 2. I always stated it as stage 1 [ maybe my need of denial ! Make light] In 2001 standard was 4 rounds of AC. This was before SNB, so 13 nodes, all negative were removed. I was a single parent with 2 daughters to raise, age 9 & 13. Fortunately or maybe because of them, chemo didn't seem too bad. I worked all thru tx.
 
I had genetic testing and met with a cgc two years later. I tested negative. I recently participated in the King study and again was negative for everything.
 
I believe the term TN came about in 2006, the same year as this foundation. I found it in 2007 after reading a magazine article. Until then,  I hadn't realized they named what I had had. The education and support on this site is invaluable. I realize on a daily basis how fortunate I am, that almost any of these stories could have been mine. I decided early on I couldn't live with fear. Easier said than done. With the passage of time, the fear does diminish. We can only control so much.
 
I post to give people hope and let them know there are some positive stories to reflect on. I want to thank all for the information and time they give.   


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: trishiecat
Date Posted: Feb 12 2013 at 3:09am
hmmm, i have not posted on this site for a long time but felt i needed to speak up. 

i am a 9+ survivor today and i survived in spite of my doctors.  i found my mass on a thursday.  i went to my internal meds doc on friday and he signed me up for mammogram (i had had a mammogram within the last year, no sign) on tuesday, i also received an ultrasound unexpected on the same day..slow day at hospital (whose nickname is the morgue). lovely radiologist gave me the news that i had breast cancer right after my ultrasound..guess he wanted to play god.  i was there all alone. my first verbal response was that i was going to die.  he informed me i should have done more breast exams..lovely man...not..

next day got my biopsy done..another slow day at hospital and within 4 days of my biopsy a general surgeon removed my breast (it was becoming a belly warmer anyway). it was then discovered that an oncologist had moved back into town and i did the devils koolaid and the taxol.. no side affects (it was all the chocolate cake i ate) except hair lost which i really had fun with..chemo days i wore my skull and crossbows do rag. i had pink wigs, blue wigs, and made many head scarfs from fabric i liked.  my mass was 5cm which made me a IIb, no nodes.. when i later went back to my internal doc he said i had an easy cancer to treat..ah, the uneducated doctor.

after my last trip to my onc (third year out) i asked if a could get a referral to have the brac testing done. he told me no, there was no history of bc in my family, i have 5 children, 3 daughters and i nag them monthly to check, my oldest daughter has had a baseline mammogram but she has dense breasts.  You know, i dont worry about a recurrence for me because what has happened in my body has already happened.  but i pray that my children are spared.  i when i read courtneys dad's post and some of his claims, unfortunately it is true than people are pulled from trial so as not to mess up the data.  i have read many a book about this and it is sad.

 i do not make light of cancer.. it is ugly and can be a killer but everyday some researcher find something new and i continue to educated myself in case the knowledge is ever needed.

may you all find the courage and strength to do what needs to be done

trish 


Posted By: ud45
Date Posted: Feb 12 2013 at 10:07am

Steve,

Thank you for the information. I am trying to set up an appointment with Dr Carey at UNC. When I was diagnosed about 3weeks ago, my first instinct was to get the tumor out as soon as possible, but I had to wait more than a week to see a surgeon and oncologist.  The initial ultrasound measured 2cm but recent MRI showed 2.9cm which is very scary. The doctors seem not to be in a hurry to start treatment. If I had known that the BRAC testing would delay surgery, I would have postponed it. The oncologist did not suggest Chemo first. It is only from speaking with survivors that I knew, that was an option. Frankly I am very frustrated right now and I wish I had sought second opinion right away. I hope I can get an appointment with Dr Carey soon. Thanks again for your advice.

 

Ud.



Posted By: Lee21
Date Posted: Feb 12 2013 at 11:30am
ud45
Hang in there.
You are in the same position I was in Dec. 2011, a mere 13+ months ago when I got the fateful phone call.  My breast tumor was 1.7 cm at its longest diameter by US and after tumor board meeting, the breast surgeon recommended lumpectomy and wanted to schedule a date.  My head was swimming since I was just told I was triple-negative, and not quite ready to sign on to surgery.  I am glad I did not because I went to get a second opinion.  That second opinion surgeon requested a MRI and that revealed the mass to be 3 cm, not 1.7 cm as determined by US.  My second opinion surgeon actually recommended neoadjuvant chemo, in her words, I had a good-sized tumor.  I took her advice.  All in all, it was almost 2 months before I got started on treatment (see my signature) but I am glad I took the time to make an informed decision.
I know that it is very worrisome and stressful during this period and you just want to start doing something.  But in the words of my second opinion breast surgeon (who happens to be an internationally recognized breast surgeon and researcher), it's not an emergency just because you just found it.
All the best,
Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: SagePatientAdvocates
Date Posted: Feb 12 2013 at 12:01pm
Dear ud,

I believe I may be able to get you an appointment with Dr. Carey sooner than later but need your permission to do so.

Just sent you my contact info so we can discuss, privately.

Please call me, at your convenience, if you wish.

warmly,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Angellinda
Date Posted: Mar 19 2013 at 7:37pm
I wish I knew! Maybe if your mind tells your body that you are healed. What I'd like to know is how to live with the side effects? I got TNBC in 2010. Had the biopsies, surgeries, Months of Disabling ACT Chemo, then my lumpectomy and ending with 35 days of radiation. Including 5 days of the boost. Ending on 11/17/10. My breast is still tanned and swollen. Neuropathy, dropping things, feeling like I'm walking on hot coals and fire while someone pounds me toes with a hammer. Etc.. I can't find any relief from the pain. My husband lost his job in '09. So to date no one is employed and we have Zero income! So how can I find healing and wellness? Am I cured? Is anyone cured? I tell myself I am. Even though the treatments left me feeling like I was torutered and left to die. I can't have the genetics test. To help my own married Daughters or my grand children.I know very little of my own health history. Other then seeing my own Mother twice in my life. The last time when I was 19 & pregnant. We got to her hospital room in time to find her Dying from Breast Cancer. She never told me she loved me. Or if I had a dad or family. All my life I wanted parents.  I couldn't  tell her she'd be a grandmother. She didn't live. I never saw her again after that short, emotional bittersweet visit. She was only 46. I wasn't much older then she was when I got TNBC. My husband got to see her Dying look on my face! He begged me to live! I'm a woman of my word. I'm here.  I never had the tests and scans others have had. How do I know its gone? How does anyone? I care about everyone! I wish everyone their own Healing and happily ever after. In wellness. Sending my care to all that have battled and beat this! You're my Hero.


Posted By: Lillie
Date Posted: Mar 20 2013 at 9:19am
Dear Angellinda,
I am so sorry that you have so many unanswered questions in your life.
1. Did my mother love me?
2. Who was my dad and do I have extended family?
3. Will I pass this disease to my daughter?
4. Will husband find employment?
5. AM I HEALED FROM THIS AWFUL CANCER?
 
Sweetie, you are not alone in asking many of these questions.  There are others of us who identify with you.  I do know that I am alive and well 6 years after being diagnosed with TN cancer.  When I say 'well', I mean I have been able to go on with areas of my life, but others I have not been able to resume.  I cannot do strenuous yard work that I once enjoyed.  I still have some neuropothy in my fingers and bottoms of feet.  My arthritis is worse, but maybe that is age???  Words slip through cracks in my memory at times, but I have learned to say "chemo brain" and go on with the conversation.
What I want to say is, I Thank God everyday for what I can still do and try not to dwell on things I cannot do.  I have filled my time with activities that I enjoy, (volunteering) and it doesn't cost me anything except my time.
I pray that you will begin to feel some relief from the pressure and unanswered questions in your life. 
Please keep posting and sharing.  You have joined a group of ladies who UNDERSTAND.  Also, we would like to hear more of your story, such as; the stage and grade of your cancer.   Having no lymph node involved and being able to have a lumpectomy after treatments sounds very encouraging. 
 
Love and God Bless,
Lillie
 
 


-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: beck
Date Posted: Mar 20 2013 at 10:07am
aNGLE LINDA i feel for you i never had the scan this time , i did with my cancer in 2007, i worry alot to , but the other day after my mamo came out fine , i got mad , damn it im sick of spending my time worring , it isnt going to change a thing, we are ok with money husband had good retirement, but i see so many give advice about second oppunes some times i think dont they understand, there are alot of ones on here that cant afford , to drive long distances to see another doc. i would have to go 80 miles to chicago sometimes i feel so dumb when im on here , no one offered me chemo first, i dont know about all the meds , am i alone , im just a mother , grandmother, and wife , when i write on here i tend to try and talk more about the human aspects of it , i dont know all the med , stuff, guess i should maybe i should of listened to my doc, whom i see today, he said im not to worry about it , thats his job, its hard to do, but maybe that would help me beat it more then anything i dont have many side effects from chemo , lucky i guess for once, the other day i dropped a mirro , excuse my spelling that is my biggest side effect, i cant picture the words to spell them anymore, any i dropped the mirror, and i said oh no 7 yrs. bad luck , my husband said, i asked him how the heck will i know, thats my life haha, i lost my mom a year ago that was rough , the was told i had tn 2 months later,   my daughter turns 40 today, pray all the time she will never go through this, hang in    Beck

-------------
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.


Posted By: nonna1642
Date Posted: Apr 14 2013 at 12:20am
Hi Courtney's Dad,
 
I also heard about the 5 year survivor  thing I don't know if it is true I hope it is.  I just made my 3 years and hope it is true.  I did learn that having a positive attitude helps.  I just lost my cousin to breast cancer last year she was about 6 years out.  She was not triple negative like I was but it did put a fear in me again  I wonder how they know if it is gone if they don't check that side after a mastectomy.  They do check the other breast every year but that is as far as it goes.  I did get a couple of bone scans that came back negative in 2011 & 2012.  I do get the doctor's exam every year also but I always wonder.  I did well on the TAXOTORE & CYTOXIN.
 
 
 
 
 
Dx: 3/10 IDC TNBC Grade 3,  Left mastectomy 5/10 Stage IIB 5.1 cm, SN 0/3, M 0,
No reconstruction, followed by Taxotore & Cytoxin, then radiation to whole chest wall.


Posted By: sharonannebaker
Date Posted: Jun 26 2013 at 5:33am
Hi Lynda, Your post gives me hope.  I will have a lumpectomy for a 1 cm grade 3 invasive and insitu ductal carcinoma in two weeks.  I was told that if the tumor is less than 1/2 cm when they measure it, I won't have to do chemo. I would just have surgery and radiation.  Can you tell me what your doctor said to justify no chemo with TNBC? I'm still worried about skipping chemo.  I do not have breast cancer in my family, I was 68 when I found it, and the tumor is small. That is why I ws told I didn't have to do chemo unless it's bigger than that. Thanks.


Posted By: acceptinglife
Date Posted: Jun 26 2013 at 7:19am
Dear Lynda,

I hope that you are doing well and pray that you do not have to deal with another cancer diagnosis. I was almost 5 years out from my initial TNBC diagnosis and felt a lump in the opposite breast. My oncologist made me wait 3 months to see if the lump changed. When I returned at the end of May, it had grown. Exactly 5 years after my first diagnosis I underwent a 2nd mastectomy. I, too, was hoping that I could meet that 5 year mark. In the end, although I am not thrilled about the new cancer, I am relieved that I found the lump earlier and can begin treating it. That said, I think there is a lot of hope that you won't have to go through this again.

Dear Sharon- My TNBC (before surgery) measures 6x9x7 ml. If it hasn't spread to the nodes (still waiting for the pathology report) then it would be considered stage I. Regardless, my oncologist said that I am going through chemo again because it is my second TNBC tumor.

I hope this information helps.

Be blessed.


-------------
6/26/08 DX TNBC, Grade III, Stage II, 0/17 nodes, KI-67 80%, BRCA-,R-mx&recon 7/08. 8/2012 mammo NED, 6/2013 DX New primary TNBC tumor L-mx&recon. Age 38


Posted By: SagePatientAdvocates
Date Posted: Jun 26 2013 at 9:00am
Dear all,

In two months, hopefully, my daughter will enter her 9th year of having No Evidence of Disease (NED) from TNBC. She has had extensive surgery and chemo (ACT).

I don't think you can ever say, with TNBC, that you are "cured" for sure. Unfortunately, there is no 'for sure' with this disease but, on a practical basis, we hope she is cured. However she is still doing yearly surveillance which is stressful to her and to me.

it has been shown in various studies that passing your five year mark without a recurrence is very important and in fact, long-term survival is better with TNBC, when you are 5 years NED, than other breast cancers.

I encourage all here to try to find the beauty in each day and concentrate on the positive things in your life and try not to focus on the chances of recurrence. I know that is easy for me to type and may be hard for you to do, but please try. 

For my daughter, despite all these years of NED the spectre of cancer never completely leaves her but she is trying her best to live her life in a healthy way. She exercises a lot, finds yoga very helpful and is able to work at her job, productively, as a guidance counselor at a large public middle school.

with my love to all here,

Steve

 


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Lillie
Date Posted: Jun 26 2013 at 10:54am
Dear All,
I have passed my 7 years since diagnoses and am still NED.
 
Having said that, just this morning I had labs drawn, chest x-ray done, and gave urine sample all in preparation for my yearly physical on July 3rd.  After the physical I will be scheduled for a mammogram and on August 22nd I have a yearly appointment scheduled with my oncologist.
 
It's that time of year again and the stomach butterflies flutter ever so softly.  As I reach the mammogram date the butterflies will flutter more. 
 
Like Steve's daughter, my anxiety never completely goes away.   I do live my life seeking the beauty in each day and staying active, but the TNBC memories are still there.  I would like to consider myself "cured", but that is not something I can do "YET"..... 
 
BUT, Steve's daughter and I are very lucky and we may be "Cured".... 
 
God Bless,
Lillie


-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: nonna1642
Date Posted: Jun 27 2013 at 12:28am
Dear Steve & Lillie,
 
I am so happy to hear that your daughter just made her 9 years NED and you Lillie for reaching your 7 years.  That is very encouraging for us still working on trying to make it 1, 2, 3, 4, & 5 years.  I just made it 3 years.Smile
 
Nonna
 
Dear Angellinda,
 
I would feel honored to adopt you for a daughter.  I don't know you but already I love you!Hug  The road ahead is a hard one but we can all make it with all the love & support of everyone at TNBC Foundation.  I had a history of problems in my left breast since 1992 when I was only 52.  My mammogram back then showed a suspicious nodule but the needle localization biopsy failed to produce the nodule & was considered a failure by the radiograph specimen.  (I guess they did not do pathology reports back then.)  But all mammograms after that always came back abnormal & they could not find anything.  A new nodule in 2007 sowed a suspicious finding & an ultrasound without a biopsy said it was a benign cyst.  I missed years 2008 & 2009 on my mammograms & then on a neuclear medicine test @ my cardiologist office there showed something up in my breast that needed further investigation right away & by that time this little nodule grew to be 5-7 cm.  Needless to say I ended up having a mastectomy & final stage was IIB 5.1 cm TNBC.  But happily I am still here 3 years later.  So is TNBC cureable? I can't tell for sure but every day that goes by gives me hope.  Right now I am enjoying my new great grandson who is now 2 months old.  My granddaughter comes & cleans my house & I get to play with the baby.  What could be better then that.Smile
 
Nonna


-------------
Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation


Posted By: Grateful for today
Date Posted: Jun 29 2013 at 1:02am

These are my thoughts.

Is TNBC curable?      Absolutely, positively YES.
    Research studies have shown that there are people diagnosed and treated for TNBC who survive.
    There are people previously diagnosed with TNBC who die without recurrence of the disease.

Who knows for sure they have been cured of TNBC?
   Those who die and have an autopsy done and the autospy shows no TNBC.

Where does this leave most of us today?
      We can choose as healthy a lifestyle as possible and reasonable.
      We are among humanity within which no one is guaranteed a tomorrow.
      We have the same guaranteed time as the rest of humanity - the present moment.
      One can consider:   
            If one knew one was cured, how would one live?
            If one did not know if one was cured, how would one live?
            If one knew one was not cured, how would one live?
            Although difficult and challenging, one can choose how to live today.
            To breathe and live - to be alive - is to experience some uncertainties.
                  Some people due to their life's circumstances are more aware of this.
            Since most people survive TNBC, I would suggest one could say most are cured.
             
    
       
With hopeful expectations for significant TNBC research outcomes,
Grateful for today............Judy






Posted By: nonna1642
Date Posted: Jul 01 2013 at 1:50am
Dear Grateful for today,
 
 
Very well said.  All we can do is live life to the fullest & don't sweat the small stuff.  I hope they find a cure for TNBC & all cancers. Amen!
 
NonnaSmile


-------------
Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation


Posted By: turtle
Date Posted: Jul 01 2013 at 4:52pm
Well said Judy

'nuf said!


-------------
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery


Posted By: fiddler
Date Posted: Sep 28 2013 at 2:31pm
Now I'm REALLY concerned.  Shocked  I was diagnosed in January 2013 with TNBC, had surgery in January, ACT started mid-February and ended end of May, radiation ended August 8, 2013.  Taxol was horrid on me; I was overnight in hospital twice, switched to Abraxane, but it wasn't any easier on me, and quit chemo 2 Abraxane infusions short.  I figured the remaining 2 infusions represented a 1-2% difference and my onco doc confirmed this.  He said, "It's perfectly fine for you to quit at this stage."

I was Stage 1A, grade 2.

Courtney's Dad, I'm concerned about your alarming posts.  I don't know how to compare my cancer to your daughter's.  What stage and grade was your daughter's cancer?  I'm told that if caught early, which mine was, there's an 85% survival rate 2 years post tx, and about an 87-88% chance after 5 years.

The surgeon and onco doc told me that TNBC can spread to all organs, usually the lungs, liver and brain - they did not mention the uterus.  The surgeon said this before we examined the sentinel node, which had no cancer cells present.

Are you saying I should have my uterus and breasts removed?  Confused  


Posted By: 123Donna
Date Posted: Sep 28 2013 at 3:33pm
Fiddler,

Sometimes what people post can scare you, but know that it doesn't reflect on your personal situation. Being 1A, grade 2 is good. Most of us are Grade 3 when diagnosed. It is not recommended having a hysterectomy or mastectomy unless you carry the BRCA gene for inherited cancers.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: fiddler
Date Posted: Sep 28 2013 at 3:35pm
Thank you Donna.  That's reassuring.  Really!  Smile  Emoticons are silly, but here they express how I feel.


Posted By: TriplePositiveGirl
Date Posted: Sep 29 2013 at 9:32pm
Fiddler,

If you read the entire string posted by Courtney's Dad as well as the many posts from others on this forum in response to his posts, you will see that he was way out of line posting what he did. He is very mis-informed, and you should not be concerned at all. Unfortunately his daughter suffered greatly, as she had advanced cancer. I'm sure his daughter's death has been very hard for him to deal with, and has created feelings of anger and frustration for him - I cannot imagine the pain he went through. I think he used this forum as a way to vent his pain and he ended up going a bit too far.

Your situation is completely different and your prognosis is excellent. You should only be concerned with what your doctors advise in regards to maintaining your health. I wish you all the best!

Lisa


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: tAugusta
Date Posted: Oct 03 2013 at 5:32am
Dear Courtney's Dad,

Let me write first, I am so sorry for your loss, so sorry Courtney is gone. 

I have tears streaming down my face, tears from reading of your loss, tears of awe
and admiration for your dedication and love.

You may start to think, "What is she saying, my love was ordinary, that of any father?"

I respectfully disagree. To me, you are a hero. Not all of us are blessed
with families that stay with. 
Families turn away. Brothers, parents, aunts, uncles, cousins walk away. 
Why? I don't know.
Perhaps fear, distaste, inconvenience, even stigma.

You are a hero.


-------------
Dx: IDC / TNBC stage IIIa / BRCA1 / Tr: DD Neo-adjuvant Chemo / BMX / BSO / RADS


Posted By: tAugusta
Date Posted: Oct 03 2013 at 5:55am
I am not a doctor, so this is my personal opinion.
When diagnosed with triple-negative, large lump in one breast, I did have myself 
tested, pretty sure I had a mutation.
Before the results came back, I proceeded as if I knew I had the mutation. A local
oncologist came up with a protocol, I got a second opinion at a terrific cancer center located
about 2 hours away. They agreed with her protocol.
She started with dense dose chemo first. Why? To shrink the tumor before surgery and kill any traveling cancer cells.
Not to avoid surgery, that was never the plan.
Test came back, deleterious mutation, BRCA1. Went back to Massey after second round of chemo,
the tumor was tiny, they had to put a metal thing in to mark it.
After chemo, I had a double mastectomy, some lymph nodes were involved, those were removed too.
Also, my ovaries and fallopian tubes were removed. The surgeon later told me she found some, what do they say, suspicious, funny looking parts in the fallopian tubes.
After the surgery, done out of town, I had radiation done locally. As I recall, it was five days a week for
a number of weeks.
Some complications, just a few, really I was very lucky. The sequence, chemo, surgery, radiation, made sense to me. From the little I know, triple negative cancers are weed-like, not strong yet fast-growing. Thus, chemo first.


-------------
Dx: IDC / TNBC stage IIIa / BRCA1 / Tr: DD Neo-adjuvant Chemo / BMX / BSO / RADS


Posted By: SagePatientAdvocates
Date Posted: Oct 03 2013 at 7:04am
Dear all,

This is a very difficult thread. 

What is very important, I feel, is to recognize that everyone here is an individual and all views are to be respected even if not completely accurate for all of us. Most of the time if your loved one has had a certain experience with TNBC you feel that is the way it is for everyone. And that is just not so. It seems there are seven different subtypes of TNBC and according to a speech made recently by an oncologist at MDACC their research shows there may be as many as 90.

Evidently TNBC is a very heterogenous disease yet we are often treating it like we used to treat breast cancer 15 years ago, as if it were one disease; we now know that breast cancer is many diseases, TNBC being one of them. And, again, TNBC is not one disease. 

There is no perfect treatment course for everyone. Sometimes, for reasons I don't believe are understood, TNBC responds 'exquisitely' to chemotherapy. So my daughter had AC/T and surgeries much like tAugusta and is a nine year survivor with NED (No Evidence of Disease). I work actively with women with TNBC as a volunteer patient advocate and I have helped several other women who have had the same experience and also with women with seemingly, almost, identical tumors as my daughter and they have been chemo resistant with dire results. And when I say 'seemingly identical' all we know at this point for most of the women in our wonderful family is that the tumors were TN. What is missing is subtype information that might in a retrospective study show that certain subtypes of TNBC don't respond well e.g. to ACT. 

With all this uncertainty it is hard for us to come to conclusions as to what is the proper treatment and for Courtney's dad there is no cure because, tragically, his daughter is gone and I agree with tAugusta that he acted in a way that we all need to applaud and admire. He supported his daughter with every ounce of love, time and money that he had. For others there have been what seem to be cures and we rejoice for those here who are NED. And of course, our hearts ache for those with local regional recurrence and some with metastatic disease.

What is certain in my mind is that we all need to respect the opinions of others, even if we disagree. Let's keep this forum as a place of peaceful refuge. TNBC can be difficult to treat. Of that fact I think we can all agree but there are no certainties here that apply to everyone except that we should respect and understand the different experiences of others and we need to try our best to understand their experiences/perspectives.

with my love to all here, and with an aching heart for those who have lost loved ones. TNBC seem to be curable at times and sometimes not. And TNBC os not one disease. We have so much to learn. 

Also, what is clear is that our TNBC Foundation family bond to share experiences and knowledge in a healing, respectful fashion. That is what is at the core of our family and makes our site such a special place.

warmly,

Steve




-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: homerduck
Date Posted: Jan 08 2014 at 11:53am
I lost my wife this past July of TNBC.  I just sat here and typed out a lengthy description of what we endured and then erased it.  Let me just say this:  enjoy every moment you have with your loved ones.  She is in a better place now.  She fought hard and bravely and was not afraid.  She taught me and all my children what being a wife and mother was and is all about. 

So, is TNBC curable?  Who is to say?  Rather than dying of TNBC she decided to live with TNBC and that made all the difference to all of us, including her.  I will see her again and we will have a great reunion.  For each of you, rather than trying to see how long you have, may I suggest living every day to its fullest.  One marvelous day at a time is all we are promised.


Posted By: SagePatientAdvocates
Date Posted: Jan 08 2014 at 12:34pm
Dear Homer,

Very, very sorry for your loss and thank you for sharing your profound, beautiful, inspirational thoughts.

I am a patient advocate working on a volunteer basis helping folks with breast cancer, especially TNBC. I tell everyone I am trying to help to please try to find the beauty in each day. It seems that is the philosophy your wife embraced and you and your family benefitted from her positive attitude. 

Again, thank you for sharing with us. I am sending you a PM with my contact info and would like to receive, if you are ever comfortable doing so, the "lengthy description" of what you experienced as a family. Maybe we can have some sort of dialogue, if you would like that will help you in your grieving and re-validate the suggestion I always give folks regarding finding the beauty in each day. Easy for me to say and very hard for women to do, at times, and I truly, truly 'get' that. Yet, based on the quality of life I have seen many have who have embraced this philosophy, I feel it still has value.

you and your family have my heartfelt condolences.

warmly,

Steve



-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Kellyless
Date Posted: Jan 08 2014 at 3:29pm
I cannot fathom losing a child, we can all feel your pain and frustration.  It's heartbreaking.  I am so very, very sorry you are going thru this. 

I'm sure you didn't mean for your post to say to us Triple Negative Breast Cancer survivors, "You all have an incurable disease, give up now you are ALL GOING TO DIE", but I gotta tell ya, there are many women out there going thru this and that is what they will get from your post.  It is vital we survivors living a different reality reply to that take on things. 

I had TNBC of the most aggressive ilk, spread to my lymph node.  I'm five years from diagnosis, 4 years and 4 months out from the end of treatment (surgery, chemo, rads) and so far NED.  It will not surprise my (very talented, brilliant and knowledgeable) Oncologists if I live another 30 years without recurrence.  I might not, but the odds for my stats + my treatment are in my favor.  If I do live another 10, 20 or 30 years without recurrence, won't I be  considered cured?  My doctor says at the 5 year mark she declares me cured - the odds of TNBC recurring after 5 years drop to that of a regular ole hormone positive breast cancer patient that received standard care for their subtype. 

Do know Homer that the reason we longer term survivors are responding is because we get a lot of newly diagnosed patients that find us here.  They need to know that they do have a chance, a good fighting chance, of beating this disease and carrying on with their lives.  Unfortunately the treatment we have is difficult, time consuming and very, very scary.  I wouldn't want any newly diagnosed person to read your post and think that it's all for naught, they might as well skip treatment and plan their funeral.  As everyone has already said, you have a right to your opinion and to voice it, but true statistical, scientific data on todays treatment options proves differently. 

Spreading the word of TNBC, of the differences in it from the norm, and the research needed would be a lovely way to honor your daughters memory.  It was another lovely young woman that lost her fight to the disease that inspired this amazing site.  We all find, once we are diagnosed, that the world in general has NO IDEA of the difference in our type of cancer, from the easily curable more common kind.  It's one more burden to bear that the majority of people in our world in no way understand why our fight is so different, and so much more difficult and fraught with pain and peril.  Another fight worth working on is giving all women the right to genetic testing.  I've met so many woman who had to fight tooth and nail - or sell valuable assets - to get the overpriced testing.

I hope you will hang around, you are very welcome here, I hope in some way being here can help you get thru all that you are living thru.  You'll stay in my thoughts, I hope for you future peace. 

-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Genie
Date Posted: Jan 09 2014 at 10:09am
Kellyless, I think you misunderstood Homer. I read that his wife fought long & hard but while she was fighting she didn't let the disease conquer her and that she lived her life to the fullest in spite of it. It is important that we might the most of every day because each day is a gift from God. How wonderful that he has the assurance that he will see his wife again some day!

Love & blessings,
Genie


-------------
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC


Posted By: nonna1642
Date Posted: Jan 10 2014 at 3:48pm
I just want to say to Homer & Courtney's dad how sorry I am for your lost of your wife & daughter. They were truly wonderful courageous women. Nonna

I just received the result from my BRCA testing and it came back negative. Even tho I had a cousin who died from her breast cancer returning in 2012. She was not TNBC. I just found out another cousin has breast cancer & they found it early & had a lumpectomy. She also did not have TNBC. So I seem to be the only one who came down with the TNBC & have no idea how I got it. I did not have the BRCA testing done at the time of diagnosis so I do not know if that would have made a difference in the results. But the good news is that the test that I have just had shows no mutations & also for the Jewish ancestry part also. I feel better about that as I was worried about my granddaughter as she has both grandmothers who have had breast cancer both with different types, me with TNBC & her other grandmother with another kind.

I do have one question concerning late effects that might occur after chemo. Could there be any balance issues that could occur? Just wondering as I have lost my balance & fell twice in the last month with the last one occurring just 2 days ago. Also could wearing a prosthesis cause any balance problems? I am not sure which doctor I should discuss these issues with. Any thoughts on this would be appreciated. Thanks.

Nonna

-------------
Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation


Posted By: Lillie
Date Posted: Jan 10 2014 at 8:52pm
Dear Nonna,
I am so pleased to hear that your BRCA tests were negative.   What a relief that must be.
 
Thank you for praying for Kristen Owens; saw your post on the Spiritual Support site.
 
Your questions about balance issues are interesting.  I have a balance issue at times.  Sometimes I blame the prosthesis.  Sometimes I blame my scoliosis and bad knee of the left leg.  Sometimes I blame the fact that I have always been clumsy.  Sometimes I blame not being awake very well when I get up some mornings.  Sometimes I blame my big feet attached to a 73 years old body.  All the time I know that my body was changed by cancer and chemotherapy. 
 
This may not help you, but I have a large inventory of things to choose from.
 
Love and God Bless,
Lillie


-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: nonna1642
Date Posted: Jan 11 2014 at 1:19pm
Dear Lillie,

Thank you yes I am happy about the results. I feel better that I am not alone in this balance issue but sorry you have to go through it also. I do have a bad back & ankle on the right side that I have problems with no scoliosis but do have sciatica, degenerative facet disease, and a bulging disc. I kind of blame the prosthesis since I have a large one size D & also bumping my head a year ago at my cousins funeral when I was reaching to get something out of my car. Maybe just getting older. I am 73 also. I see those commercials that say Help I've fallen & can't get up and think this is not for me this is for people in their 80's or 90's, I do carry my cell phone with me all the time so that can help. Take care.

Nonna

-------------
Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation


Posted By: TriplePositiveGirl
Date Posted: Jan 14 2014 at 8:45pm
Kellyless,

That is very well stated. I think it is so very important to all of us who have been through this terrible ordeal to remember that there are survivors out there who are alive and well and thriving - and that TNBC is a curable disease (in my opinion). Many many women will beat this disease. 

I was sorry to read Courtney's Dad posts, for many reasons. I know he suffered, and still suffers from the loss of his daughter. I take that into consideration when reading his posts.

 I still have fears of recurrence, but I am spending less time worrying about it as I move further away from my treatment. Those newly diagnosed women out there need to know that it is not all doom and gloom - that the chances are very good for NED to be achieved when the cancer is detected early.

I pray that everyone on this forum finds peace, happiness and good health this year. :)

Lisa


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: sherrmorr
Date Posted: Mar 11 2014 at 7:04pm
Dear Courtney's Dad,
 
I am profoundly sorry for your loss. Reading your post literally hurt my heart.
 
TNBC is a beast. Unfortunately, I have some experience with it. The one thing I have learned, is that truly, everyone is different.
 
My maternal aunt is believed to have died of the disease in 1977 at the age of 50. Prior to her diagnosis, no cancer in my family whatsoever. My maternal grandmother lived to be 89 and never had to fight this beast.
 
My late maternal aunt's daughter was diagnosed in 1996 at the age of 36. She was successfully treated with a radical mastectomy w/reconstruction and 6 rounds of chemo. The doctor told her she may have ten good years. She has had no recurrance.
 
My own mother was diagnosed at the age of 74 in 2010. She was stage I, 1/5 nodes. She was treated with 4 rounds of cytoxen and taxetere. She had a mets to the rib, dx Oct 2013. Today, her scan showed no evidence of disease.
 
Every single case is different. When my cousin was diagnosed in 1996, the term TNBC wasn't being used. That is a relatively recent discovery.  There are more drugs now, than there was in 2009 when Mom was initially diagnosed.
 
Mom's oncologist was pretty straight forward in 2010 when he said if this disease recurred, it would end her life. Well. Who knows?
 
Of these three women, the lumps were not found with a mammogram. My mother was having mammograms every six months because of her high risk. She had a mamm in Sept and her lump showed up in January. She found it, the breast center put her off for 30 days. I'm still angry about that.
 
As for clinical trials, I have contacted OSU, and despite Mom's advanced age and the fact she has had recurrance, they stated she may indeed qualify and wish to see her.
 
Your loss is beyond tragic. There are just no words. I am so sorry. Please understand this disease may visit your family again. Be hopeful. Finally, they are actually spending money on research for TNBC.
 
Ina's Daughter


Posted By: sherrmorr
Date Posted: Mar 11 2014 at 7:10pm
Nonna,
 
I just read your post.
 
My sweet mother who is currently N.E.D., fell and broke her hip last 14 June at the age of 78. She laid on the floor for 8 hours until my twin brother came by.
Nonna, if you have to wrap that cell phone around your neck, do not get out of a chair, go to the bathroom with out it.  Lord have mercy, I still cringe when I think of my sweet mom laying there so helpless.
She is fine and is walking on her own, but daggone if she didn't get a mets to the rib, just as she was getting over the hip. Been a rough year.
Please, please be careful.
 
Ina's Daughter


Posted By: petersdraggon
Date Posted: Oct 01 2014 at 10:27pm
Steve, in response to your comment, I would like to report my wife was diagnosed TNBC stage 3b, tumor >5cm, 10 positive nodes, had immediate surgery and completed chemo and radiation in June.  The doctors told her she had a pCR and is NED.  Let's pray it stays that way.  She is back to living her life.  They incorporated carboplatin in the second-round of chemo btw.
Thanks for all you do on behalf of others,
Greg.


Posted By: SagePatientAdvocates
Date Posted: Oct 01 2014 at 10:43pm
Thanks for your kind words, Greg. I am sooooooo delighted your wife had a pCR and is NED. May it continue. My daughter celebrated 10 years NED in August.

My apologies to all here because I have not been posting nearly as actively as i used to but my heart is with everyone on this wonderful forum. I have been intensely busy, helping some folks, and it seems that every night I kind of collapse..

love to all here,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: 8malik
Date Posted: Oct 01 2014 at 11:32pm
Hi Latoyal,

I have had tnbc 3 times.  My first time I went 10 years, second 4 years and had stage 4 and now stage 4 on a clinical trial and doing really well.


Posted By: Alison4ox1
Date Posted: Oct 02 2014 at 3:44pm
I was 6 years out and then in August I found a lump in my neck guess what the breast is back treatable but not curable. Thought I was out if the woods having passed 5 years. The only good thing is that it is grade 2 and not spread to any internal organs or bones, the fight begins once again. I have to confess I achieved pcr so cannot understand why.


Posted By: TriplePositiveGirl
Date Posted: Oct 02 2014 at 4:13pm
Alison -

Is this considered a new primary or recurrence? Is the lump on the same side of the neck as the breast cancer was and is it a lymph node? What was your initial diagnosis/staging? I'm sorry to hear its back after 6 six years. That really stinks. I am almost at 5 years from diagnosis and I still worry about recurrence regularly. I guess we are never completely out of the woods are we?

Best of luck to you,
Lisas


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: Alison4ox1
Date Posted: Oct 02 2014 at 5:18pm
It is classed as a local regional recurrence it is in the supraclavical node and internal mammary node, same side as primary breast cancer. Initial diagnosis 2b, grade 3, 5 cm tumour, 1 positive node, neoadjuvant chemo pcr, skin sparing mastectomy and radiotherapy. Initial chemo FEC and Taxatere.


Posted By: TriplePositiveGirl
Date Posted: Oct 02 2014 at 5:30pm
Hi Alison,

What treatment are you receiving now? I am assuming more chemo. Is this operable or is chemo the main treatment option? It is a good sign though that it has not spread anywhere else. I know many women who have achieved NED with positive lymph nodes via chemo.

Lisa


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: Alison4ox1
Date Posted: Oct 02 2014 at 5:44pm
The treatment now is week 1 avastin and taxol, week 2 taxol and week 3 avastin and taxol week 4 no treatment. Tumour marker test at the start of cycle. Ct scan after 12 weeks if all okay carry on with regime for 6 months if still okay will be on maintenance dose of avastin every 3 weeks. Not able to operate because of where the nodes are. I am optimistic, am under one of the best hospitals in the uk the royal marsden and there words to me were they are hoping to give me many years, but the triple negative you never know.


Posted By: iluv2sing
Date Posted: Oct 04 2015 at 9:18pm
Hello All,
I'm one of those NED folks that lost touch with the TNBC forum. Smile
While I have been actively working to educate others on the outside, I've recently felt the need to replenish myself and to return to the forum for my own support and education.  Trying to ensure I keep up with the latest information and attempt to be a source of encouragement to someone else.  While I agree with many who say there is no cure, I am optimistic a cure is not far away.  Until we have targeted therapies I continue to celebrate each year of NED, live my life and continue to educate, empower and encourage others on my journey. 


-------------
Raymon
Rejoice Everday!
Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA-


Posted By: Kellyless
Date Posted: Oct 04 2015 at 10:01pm
Hey Raymond, welcome back! You and I were diagnosed a week apart with very similar stats. I'm still NED too
Donna continues to post all the latest info, she's our blessing posting the news from everywhere. Take a look around, really interesting stuff!
Kelly

-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: iluv2sing
Date Posted: Oct 05 2015 at 6:38am
Hey KellylessSmile  Thanks for welcoming me back.  Will do my best to keep up this time.  I lost my old account from 2009 and almost couldn't get back into this one.  Won't happen again.

-------------
Raymon
Rejoice Everday!
Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA-


Posted By: Kellyless
Date Posted: Oct 05 2015 at 11:31am
I've come and gone over the years.  Life gets in the way and I forget about for a months.  I have email notifications on for threads I've responded in, usually a new post on one of those reminds me to come check in :) I truly got the most useful info from ladies I met here that were ahead of me in treatment back when I was sick - I will always be eternally grateful. I try and pay it forward!  And I get the latest TNBC news here as well. 

My autocorrect keeps giving you a D on the end of your name - so sorry Raymon!
Kelly


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: iluv2sing
Date Posted: Oct 06 2015 at 1:46pm
Smile  Yeah ... when I first joined I was very active on the site, then my focus went into Facebook groups and face-to-face interactions.  I try to keep on top of the news as it relates to TNBC.  And I too try to give back ... don't worry about the 'D' ... LOL



-------------
Raymon
Rejoice Everday!
Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA-


Posted By: Lardbrick
Date Posted: Oct 11 2015 at 11:51am
After reading from the beginning of this thread, I understand why there is such diverse opinions. Some are talking about their experience with stage I, II or even III, while others are deep in stage IV - two totally different worlds when discussing prognosis, hope, and cure.

This is why some forums separate the two populations. You have the Stage I's who have never had a recurrence trying to give hope to the Stage IV's who have been to Hell and back with metastatic disease. Until you have been diagnosed with metastasis to the liver, bones, lungs, or brain, be careful about spreading sunshine and daisies.

While there are honeymoon periods in Stage IV, when the chemo is responsive in kicking butt and they are NED, these people live from scan to scan every six months, not waiting for "if" it comes back but rather "when" it comes back. Some Stage IV people never got the luxury of following the stages in chronological order - and they did everything right. Some had regular mammograms but were still diagnosed Stage IV from the beginning and others went from Stage I to Stage IV with a couple of decades in between.

I just wanted to point out that it's all a matter of personal perspective.


Posted By: debily
Date Posted: May 18 2016 at 3:51am
My message is this; Hope yes of course Hope with all your heart and pray too!  I am a six year survivor of TNBC and it has been a long hard road.  I am ALIVE and this is the most important point, however, there is more to be said about this dreaded disease.  Because it is so aggressive it has to be matched with treatments that are hard on the body.  Some treatments destroy healthy tissue...needed healthy tissue like your heart.  Six years out and I live with pain...everyday...no I do not like medicine so I do not take pain medications the hardest drug I take is Lyrica for the fibromyalgia I developed.

They looked me in the eye and told me my heart was safe from the Chemo and they lied! I have gained and enormous amount of weight and feel as if cancer consumes me, though Dr.'s say otherwise...they want to put me on all kinds of medications including antidepressants...because like, who might get depressed knowing you have cancer, right?  I prefer to keep my wits about me and not be bullied into anything.  I just wanted the people who read these forums to know you can make the choices not have them pushed on you.

I suffer daily and the pain I go through is directly related to the treatment of my disease.  I am not bedridden yet but I presume it will happen one day though I fight it with all my might and some of the Lords handiwork.  Since I was informed of my condition I have studied and read many forums, books, and actually signed up for College; Healthcare Administration...I learned how to find information, and believe me they keep it nice and simple on these websites as to encourage rather than discourage...and that is fine; but I say to you dig deeper...learn how to use the SEER program and get familiar with your specific diagnosis.
 
I may very well be done with Cancer but now I have so many other issues, I cant walk more than half and hour or even sit up for an hour without extreme pain. I have Pulmonary Embolisms so I do not breathe well and it seems like many other issues have taken hold...and I hold them liable to the Chemo Cocktails I received. 

Above all I wish you well and Gods hand of protection over you in these things I pray...Amen!










bc


Posted By: SagePatientAdvocates
Date Posted: May 18 2016 at 6:15am
Dear beloved TNBC Foundation family,

I am here to report that my daughter this past August celebrated 11 years NED.

Because of her BRCA mutation (inherited from me) she had risk reducing surgeries after her original quadrantectomy. If she had been diagnosed today, probably her treatment of ACT might have been different but so far, thankfully, it has worked.

She is healthy, fit and does yoga 4-5 times a week. 

All I can do is keep praying that she remains NED. I believe she is cured and so does she.

I am a patient advocate and I am helping people with cancer every day of my life, as a volunteer, and I feel privileged/blessed to do this work. I tell everyone I am helping to "try to find the beauty in each day." Easy advice to give and hard to follow, I recognize but having a positive attitude can help, in my opinion. And enjoying and appreciating the positives in your life seems to help many.

There is no perfect here regarding TNBC or other cancers but I wanted to thank/congratulate The TNBC Foundation on their 10th anniversary. Their commitment to our community has been pure and inspiring to watch. Under the leadership of Hayley Dinerman, Executive Director, much progress has been/will be made regarding this difficult disease. She continues to work tirelessly with her colleagues to try to make life better for those with TNBC and for those in the future. And the research that has been and will be funded by TNBC Foundation continues to give us all hope.

I believe we are making progress. 

with my love to all here,

Steve




-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: petersdraggon
Date Posted: May 18 2016 at 3:26pm
My wife had a recurrence of TNBC and was getting grave and currently in a clinical trial of Keytruda and Halaven and responding well.

https://clinicaltrials.gov/ct2/show/NCT02513472


Here is some more encouraging news on the horizon:

http://medicalxpress.com/news/2016-05-triple-negative-breast-cancer.html

Keep the faith!


Posted By: gordon15
Date Posted: May 18 2016 at 3:42pm
Thanks for the update, I/m sorry your wife had a recurrence,

Hope your wife contnues to stabilize.


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: kreynolds
Date Posted: Oct 03 2016 at 10:57am
I had to respond because of what I saw on the first page of this forum which had been posted several years ago. I was horrified when I saw someone post in this forum that triple negative breast cancer is not curable that the life expectancy is 18 months. While my heart goes out to the father who lost his daughter to this terrible disease (I lost my dad to colon cancer when I was only 16 years old so I know what it is like to lose a family member to cancer), people need to know that statistic simply is not true. How do I know? Because it has been nearly nine years since my diagnosis. 

On December 3, 2007, I learned a spiculated mass had been detected in my left breast during a routine mammogram. I had just turned 47. That mass turned out to be a 3.5 cm grade 3 tumor and I had triple negative invasive ductal carcinoma.

I opted to have a lumpectomy and did dose dense chemo (4 rounds of A/C and 4 rounds of Taxol) as well as radiation. I am still NED.

Does the thought of recurrence still enter my mind? Of course it does and I think it always will. I had a couple of weeks of back pain earlier this summer and the thought crossed my mind more than once that cancer had returned. I was very relieved when it turned out to be merely a strain and I have been as good as new for several months. 

As cancer survivors, I believe we need to be realistic but at the same time, we should not be pessimistic. We need to be aware of the risks we face but we must not let them scare us to the point that we cannot be thankful that TODAY we are living!

A month after radiation ended, I was diagnosed with type 2 diabetes. Two years later, I suffered a ruptured brain aneurysm and a stroke in my sleep. Fortunately I got sick when it happened and my husband, who had not yet dropped off to sleep, realized something was horribly wrong. It is a miracle that I survived because most people who have this happen in their sleep... never wake up. Still, I have those things on my mind in addition to cancer recurrence but I cannot allow those fears to consume me. All I can do is do the things I know to do and not do the things I shouldn't do. Is that any guarantee as to how long I will live? No but none of us have any sort of guarantee, do we? 

If you have been diagnosed with TNBC and are reading this or if someone you love has TNBC, take hope. Yes, it is a terrible disease and yes, far too many women, especially young women, die. At the same time, there are many long time survivors like myself. In regards to statistics, my oncologist put it this way: These are NOT actual statistics but just say for example the statistics say that 90 out of 100 women diagnosed with TNBC die within 10 years. Why do you assume you are one of the 90 rather than one of the 10 who do not? Hmm... you know, that was a very good point! 
 



Print Page | Close Window

Forum Software by Web Wiz Forums® version 12.01 - http://www.webwizforums.com
Copyright ©2001-2018 Web Wiz Ltd. - https://www.webwiz.net