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Is triple negative breast cancer curable?

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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.


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


Edited by steve - Feb 09 2013 at 11:56am
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
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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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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

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; Table 1). Patients with hormone receptor–positive tumors had a higher residual risk of recurrence than patients with hormone receptor–negative tumors regardless of menopausal status (data not shown).


(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


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. 


Edited by steve - Feb 09 2013 at 10:32pm
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post 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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CourtneysDad Quote  Post ReplyReply Direct Link To This Post 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
 
 
 
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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


Edited by steve - Feb 09 2013 at 11:44pm
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mags20487 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dldlogan Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post 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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mags20487 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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.

Edited by 123Donna - Feb 11 2013 at 9:45am
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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post 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.
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