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Triple Negative Breast Cancer Survivors

emamei's picture
emamei
Posts: 144
Joined: Feb 2011

Hi.

I just finished my last round of chemo on Thursday last week. I had 8 total, 4 AC and 4 Taxol.

My Invasive Ductal Carcinoma tumor that was removed last October, along with lymph nodes, was found to be Triple Negative.

I'm 42 years old with three young daughters, age 10, 8 and 7. I am having additional surgery to re-excise the margins that surrounded the original tumor and then radiation therapy.

I've read a number of recent publications that discuss the success of current treatments for woman with Triple Negative Breast Cancer and their long term prognosis, survival rates, chances for recurrence, etc. My oncologist has explained there is no way to know for certain which end of the statistical spectrum a patient may fall.

As you can imagine, I'm scared, I hate uncertainty, I feel I need answers that no one can give me and having to come to grips with that is driving me crazy. I want to live to see my daughters grow up and have happy lives of their own. I have goals and aspirations too.

Is there any of you out there who are also Triple Negative? What information have your doctors given you? How long has it been for you since your initial diagnosis and treatment?

I need to hear from and talk to other woman who can understand what I'm experiencing. I feel scared, uncertain and lost.

MAJW
Posts: 2515
Joined: May 2009

There are plenty of triple negative survivors out there and on this board...I'm one of them! Invasive ductal I was 58 when diagnosed 2 years go.. There are many varibles as you already know...stage of your bc..lymph node involvement if any...etc... Yes, what we had is aggressive and scary..all bc and all cancer is horrifying...understand your fear..we all do.. My 3 physicians all said that it is not a "good one". ( there is not good one) that it is the kind that responds very well to chemo...that's a plus.. I had a lumpectomy, chemo then 33 radiation treatments...finished all treatment 18 months
ago...My oncologist gave me this info at the beginning...with chemo and radiation I have an 80% chance of NO RECURRENCE anywhere in the body for 10 years...a 20% of it returning...I choose to look at the 80% ! I have fear, we all do, that it may come back...I had no control of getting bc in the first place and can't control whether or not it comes back...
Robin Roberts on Good Morning America had our type and Jennifer Griffin on Fox news also...but, again there are so many variables..each unique to our own personal experience...even though we are triple negative..we're different...I was stage II,grade 3 with NO lymph node involvement..my tumor was 2.2 cm...I went from stage I to II during the lumpectomy due to size alone of the tumor...bigger than it showed on the mammo and ultrasound..my chemo was 4 infusions of Cytoxin/ Taxotere...and I had good, clean margins even though my tumor was very close to my chest wall...
This is my personal experience...we're all different...I wish I could ease your mind..I know you're scared..trust me, we were all terrified..many still are..It never leaves us but some how we find our way...Please keep posting on this board...more will chime in, I know...it's full of wonderful women of all ages, stages and types of bc...full of caring women who REALLY know how scared you are...there is a good life after bc...
We care..
Nancy

pokrydi's picture
pokrydi
Posts: 99
Joined: Feb 2011

I am also triple neg 1/4/11 lumpectomy 1/14/11 21 lymph nods taken 3 positive then more margin taken 2/8/11 and port put in. when I had my mri 12/28 it was just a lump ended up being 1.5 cm stage 2 so you can imagine my suprise when I came out of surgery with lymph nods removed. Being triple neg is very scary I try not to read to much into everything cause it just freaks me out. Currently doing the chemo #3 down same as you 5 to go then 6 wks radiation. Luckily my kids are older 31, 28 and 24 but my grandkids are scared watching me go thru this 9,6 and 2 because older 1's watched my brother die of lung cancer. Hang in there it does seem that alot of research is going into the why's of triple neg try to stay positive I know there will be days it will be hard. I have gotten so much of my strength and comfort for other ladies on this board so post when you need to we are all here to support each other. Sorry to meet you this way but here if you need help. Take care Diane

emamei's picture
emamei
Posts: 144
Joined: Feb 2011

Thank you so much.

emamei's picture
emamei
Posts: 144
Joined: Feb 2011

My Cancer was diagnosed Stage 2, Grade 3, Tumor Size 3.5cm, and two positive lymph nodes out of 18 removed. I am trying desperately to keep positive and see myself on the right side of the statistics. I'm just feeling so overwhelmed with the "what ifs" that keep creeping up on me. I look at my husband and daughters and fear recurrence or worse.

I will keep posting and I do want to hear from others too. It helps me to know and learn how others have learned to cope.

Thanks so much for responding.

joannstar
Posts: 353
Joined: Nov 2010

as Stage 1, Grade B, 0/4 Triple Negative. I've had 2 lumpectomies 8/5/10 & 8/19/10-to get clear margins. Did 4 rounds of Taxotere/Cytoxan, 2 rounds of Taxol/Cytoxan and 33 rads which I finished on 4/1/11.
Although I have many moments of fear. I figure that I did everything that was recommended and I just have to keep going. I have a new marriage (my first, married 4 months before diagnosis) and much more to do in this world.
After all this I realize that our lives are out of our control, and all we can do is our best.
Old Jewish saying, "Man plans and God laughs".
Hugs,
JoAnn

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

I have tripple negative and had a lumpectomy 3/22/11. I am 55. At time of imaging the tumor was supposed to be 2.5 cm. At time of lumpectomy it was 6.6 cm grade 3. Two lymph nodes involved. I am amazed that they have still categorized me as stage 2. Perhaps it had something to do with what they found in the pathology report. I have always been a stong matriachal figure in my family, so despite the fact that my grown children know the truth about the aggressive nature of the cancer we are still remaining hopeful. I had been previously challenged in my life with other tragic circumstances that I have managed to survive through so I think this is why we stand hopeful despite the nasty nature of this diagnosis. I just tell everybody that I will kick cancer's A$$. And many who know me have no doubt that I will.

The way my surgical oncologist sees it I have the second most aggressive cancer. He thought that HER2 was more aggressive. So perhaps we as a group have a better chance of survival. I will be speaking with my chemo doctor about e possibility of participating in a clinical trial. Quite frankly I probably will not be able to participate as I am still only stage 2 and quite often one must be in stage 3 or 4 to participate in clinical trials.

There are studies about something called a PARP inhibitor that is in stage 3 of clinical trials. This PARP inhibitor would be used with our conventional chemo so as to attack the cancer in a different way than present chemo does. In this way when the conventional chemo kills off the pathway for the cancer to spread, the PARP inhibitor heads the cancer off at the pass at the point of it's second most likely way of spreading. So perhaps I cannot participate in these trials but now I must pray for those doing the research and the people who have been able to participate in the process of finding us another weapon to fight this cancer with.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I'm triple neg and IBC. So the stats for me completely suck, and I choose not to read them. I believe it was Rague who said 'it's either 100% or 0%, it will come back or it won't'. And I think she's right.

But, after some study, I do think there are things that are in my control that do impact recurrence...diet, exercise, and stress management. So I work on those things.

But I totally understand how you're feeling. I couldn't sleep a couple nights ago...instead of sleeping I spent the time picturing my daughter (she's 10) dealing with all the girl things in life without me to help her through them. (I worry that her brother (14) and Dad won't be supportive or understand those girl things.) It was only after I developed a plan and took some tylenol pm that I could sleep.

So I guess what I'm saying is, pick those areas where you do have some control, where you do have definite answers, and focus on those things. It helps me get through.

Hugs,

Linda

JoAnn4818's picture
JoAnn4818
Posts: 83
Joined: Jan 2011

I was diagnosed with Triple Negative Breast Cancer last September at the age of 53. It's Stage 2, grade 3. I've had a left mastectomy after 2 failed lumpectomies and I just had my sixth chemo out of eight - same mixture as yours. I feel so sick and I worry all the time. I asked my oncologist what my prognosis was and she said that maybe we should talk about that in 2 to 3 years. She said if there is no re-occurrence before then, the chances it won't come back really improve.

I have 2 wonderful boys 18 and 22. I want so much to see them get married and have children of their own. I sure do know how you feel.

I stay away from statistics as much as possible but I do read a lot of information on the Internet that shows research really is being done on Triple Negative Breast Cancer. I choose to think they will find help for us. In the meantime, I plan to do what I can by living a healthy lifestyle - low fat diet, exercise and surrounding myself with loving friends and family.

I'll be thnking of you - Hugs,

JoAnn

emamei's picture
emamei
Posts: 144
Joined: Feb 2011

This forum has and continues to help me hold on. The last few days have been particularly hard for me as all the statistics about TNBC have been getting the better of me.

It doesn't help either when people like my mother-in-law, also a breast cancer survivor, tells me things like, "don't worry so much", "chemo is done and things are going to be fine", "life will get back to where it was before all this", etc., Her BC was very different, she had two lumpectomies, one in each breast, several years apart for DCIS breast cancer. Her oncologist at the time told her it was detected so early that it wasn't even considered Stage 1. Her experience was very different than mine. She was older, retired, no young kids, no financial worries and a tonne of support. Unfortunately, that is not my reality.

I am making lifestyle changes too. I want to give myself the best chance for survival as I can. The uncertainties right now are tearing me apart inside though. Especially when I look into the faces of my three young daughters, ages 10, 8 and 7. They need me so much.

I appreciate your support more than you know. Thank you so much.

jessiesmom1's picture
jessiesmom1
Posts: 716
Joined: Jun 2010

First let me say congratulations on having finished chemo. Doesn't that feel wonderful?

I was diagnosed with TNBC in 12/2009 -Stage IIa, Grade 3. I had an axillary dissection in 12/2009 (2 of 22 lymph nodes positive) and a right mastectomy in 2/2010. I had a port implanted in 2/2010 and began chemo in 3/2010. I had 4 rounds of A/C and 12 rounds of Taxotere. My last chemo infusion was in 8/2010. No radiation. I once again have a full head of hair as well as 10 fingernails and 10 toenails. I am also down 30lbs.

At the time of my diagnosis my daughter was 17 and a senior in high school. My son was 19 and a college sophmore. My 1st thoughts upon finally getting the diagnosis were something along the lines of,"OMG. I won't see them graduate from college. I won't see them get married. I will never see them have children." Well, I have learned to make my goals slightly shorter term in nature. I DID see my daughter graduate from high school in 6/2010. I couldn't attend her college orientation (Daddy went) but I DID attend the big move-in day even though I wasn't much help. I almost had heart failure when I saw she was on the 2nd floor of a two-story dorm without an elevator. I did do those stairs though. It made us both happy. 6 weeks later I attended Parents Weekend and climbed the stairs in the football stadium for the big game. Things DO get better.

Last month I went to the oncologist and we had a LONG discussion about tnbc. He said that while it is more aggressive than some other types of bc it responds very well to chemo. He also said that a person with tnbc is 6% more likely to have a recurrence than a person who is not triple negative. I can live with that. To hear that you have a life-altering, potentially fatal disease is understandably scary but you can't let it control your whole life. You do the surgeries, chemo, rads or whatever your doctor tells you will best kill off your particular type of cancer. You do it for you AND you do it for your children. I plan to see them both graduate from college. I have, however, told them that I am too young to have grandchildren just yet. IRENE

janelle2011's picture
janelle2011
Posts: 21
Joined: Mar 2011

I have TNBC too and I'm scared! I'm Stage III Grade 3...just married my soulmate 3 yrs ago. My daughter is 24 yrs old and just got married last year....I'm not ready to die. I had to quit reading stats because they made my heart ache. My Dr thinks she can cure me, so that's what I'm banking on! I'm eating even better, exercising and trying to get my weight in normal range. With the help of my team, what I can do and God.....I know I have a good chance of being a survivor!

I still have 5 treatments left before surgery and then radiation. One more A/C and 4 Taxol.

You have to try and stay positive.....that's really all you can do right now! Everyone is rooting for you! :o)

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Hi Emamei, I'm TNBC, I was diagnosed in August of 2009 with stage IIIC IDC all nodes involved along with my inner mammery node and my supraclavicular node. 4 A/C, 11 Taxol, Bilateral mastectomy, all lymph nodes, both ovaries, and immediate reconstruction (latissimus flap) in Feb. of 2010, followed by 30 rounds of radiation. I had 6 months of clear pet scans and then in Jan. of this year it returned in my bones and I'm now stage IV. Although the stats don't look great for us, I like what Linda said, it's either 100% it will come back or 0%. It's kind of scary that it came back and I'm not liking the whole chemo bit again, but I'm not giving up. I'm 39, my daughter is 21 and getting married in June, my son is 16 and graduating next year. I'm bound and determined to stick around to see them through this. Keep your chin up, stay positive and "fight like a girl"
Big Hugs and Miles of Love,
Kari

marycurbelo1204
Posts: 16
Joined: Jan 2014

Posting in April 2011.  How are you now, 2014?  I'm also TNBC Stage 2 Metastatic, no lymph nodes involved. Would love to know how your doing...

 

joannstar
Posts: 353
Joined: Nov 2010

I just had my onc appointment and while I'm still waiting for bloodwork results, all is good. According to my onc, for TNBC the prognosis is very good if we make it to 3 years and more. He said my chances of recurrance at this point are down to 5%!!

 

WAHOO!!!

 

Hugs,

JoAnn

GlowMore's picture
GlowMore
Posts: 234
Joined: Feb 2008

I'm glad to see a few posts from 2011 still here in 2014........am Triple Negative also and still here after 11 years from the end of treatment.

One of the big frustrations of this Discussion Board to me is that when we lose someone...how can we know what happened?   Many just stop posting but when they stop I wonder if they have taken the Pink Jet to Heaven....and just hate hate hate it.     I did not have the energy to even come to this place back during the worst of times..........but I am glad it is here for support for sure.  I hope that the gal who started this post at the beginning will come back and let us know how she is doing.   Glad it is ok with you joann  :)  My tumor markers last week were elevated but not too much (mid 40s) so maybe I will just have to do another CA 27-29..........we will see.   :/

 

 

Add2370
Posts: 2
Joined: Sep 2014

And planning on more!!  TNBC of an IDC at age 39 in june 2009.  Had lumpectomy followed by chemo and 37 radiation visits. No lymph nodes, thank goodness. But still it was bigger than expected. I'm still here. Made my five years So far, planning for ten. Let's rock this thing called life!! :) 

JoAnn4818's picture
JoAnn4818
Posts: 83
Joined: Jan 2011

Wow! Re-reading the message I wrote years ago really slammed me back into all the feelings I had when I was going through treatment. I'm still here and I'm doing well. I've had a few scares along the way as many of us survivors have. I do come back to this site to check in every few weeks. So many people on this site pulled me through the worst of times! Those boys of mine did grow up into great young men and are living in their own apartments - no grand kids yet so I plan on sticking around until I get some! LOL. My doctor does no follow up tests or bloodwork so I do worry about cancer coming back. Yep - let's rock this thing called life!

JoAnn

 

GlowMore's picture
GlowMore
Posts: 234
Joined: Feb 2008

Your post gave me a Happy Face and I wanted to hit the "Like" Button.........So glad to hear all is still going well for you....as it is and has been for me....I don't have to re check the tumor marker blood work for another three months....so I'll not let it get me down and think about it tomorrow   :)   

Anita L's picture
Anita L
Posts: 5
Joined: Sep 2014

I'm so glad to see some of you revisit this page.  Triple Negative is a scary thing.  I was diagnosed in July, 2014.  Stage 2, no lymph node involvement.  I'm trying to stay positive.  I've been reading so much bad that I consider it a blessing when I read something good.  I'm just about to vow not to read anything else.  PET scan did show a small spot on my sternum so they moved me to a stage 4, but blood tumor markers are good.  Still waiting to start treatment.  Maybe in a couple of weeks we'll hear something.  

I, also, think of my husband and two daughters, ages 15 & 20.  I try not to let myself think of the bad, and stay positive.  I believe in the healing power of God.  I'm nervous to start treatment because of the side effects I've read, but feel it necessary.  

As far as right now, I feel like I've always felt.  I can't tell anything is wrong, except my physical appearance.  I had the bilateral mastectomy.  Don't plan on having reconstruction.  I'm just ready to be through with treatments, and hear good news.

Did anyone experience any lasting side effects from their treatments?

Thanks for the support. May the Lord richly bless each and every one of you!

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