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Is triple negative breast cancer curable?

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nonna1642 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nonna1642 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post 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




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Post Options Post Options   Thanks (0) Thanks(0)   Quote nonna1642 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote turtle Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote fiddler Quote  Post ReplyReply Direct Link To This Post 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  
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote fiddler Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tAugusta Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tAugusta Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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




Edited by steve - Oct 03 2013 at 7:08am
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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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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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



Edited by steve - Jan 08 2014 at 12:39pm
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 Kellyless Quote  Post ReplyReply Direct Link To This Post 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
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nonna1642 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post 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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nonna1642 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sherrmorr Quote  Post ReplyReply Direct Link To This Post 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
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