5 - 7%

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heartofapetal
heartofapetal Member Posts: 2
edited June 2014 in Triple-Negative Breast Cancer

My pathology reports showed that I am triple negative. I was told that I had an 85% chance of NOT getting cancer again.  The Oncologist said that I should start chemo in 2 weeks to increase the chances to 90 - 92% of cancer not returning.  From what I have heard and read about chemo, I am not sure that I want to take the 3 to 6 month treatment when I already have an 85% chance of no return.  What am I missing here?  Could that 5 - 7% be so significant?  Could I not be treated if I am in that 8 -15% group that does get cancer again? 

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  • Colt45
    Colt45 Member Posts: 771
    edited April 2013

    Imagine it this way. You're 1 of 100 women in a room.



    They are about to call out the 8-10 names of those of you who will recur... Or they could call out 15 names.



    How comfortable are you with them calling out 15 names when you could choose to have them stop at 8-10 names?



    I'm not trying to convince you 1 way or the other. Just trying to give you another way of looking at it.



    What are the other aspects of your tumor? Size? Grade? Lymph node involvement? LVI? Multifocal? IDC? Etc...

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  • LRM216
    LRM216 Member Posts: 2,115
    edited April 2013

    I too felt very much as you did, but took my oncologist's advice to heart, which was that triple negative can be very aggressive and this is the only chance you will ever get to hit it with the big guns in the hope of eradicating it entirely. On that advice, I hit it as hard as I could and unfortunately, was not one of those that had a relatively easy journey with the treatments.  Every side effect known to man - I had, febrile neutropenia and hospitalization for same, blood clot in leg, neuropathy in hands and feet with my first taxol, then being switched to taxotere - it was nasty - all of it, but I still continued to work full time and raise my teenage grand-daughter by myself as I am a widow.  I am most thankful that, with all the times I wanted to quit the treatments, there was someone close to me kicking me in the butt to keep on going.  What the future holds for me, God only knows, but I have lived the past four years of my (excluding the first year!) healthy and happy.  I hope beyond hope that I continue this way, as I hope for complete success for you.  Please think about what I wrote as you get no "do-overs" with this nasty hand we have all been dealt.  Do whatever you can - while you can, to defeat this beast.

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  • Luah
    Luah Member Posts: 1,541
    edited April 2013

    You can always be treated again, but if it recurs, it may be in the bone or a distant organ, so stage 4. TNs are more likely than ER+ BCs to recur in distant locations, and chemo is the only systemic treatment we have.

    Usually TNs get chemo unless their tumours are very small, in which case the benefits may not seem worth the risks.

    Not trying to steer you one way or the other, just presenting a few facts. Best to discuss your own risk factors with your onc.

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  • hrf
    hrf Member Posts: 3,225
    edited April 2013

    While it is your decision, you have to remember that with TN, this is your only chance to make a difference. Do you really want to take such a chance with your life? Chemo is very effective for TN. If you are one of the unlucky ones with a recurrence, you will regret not hitting it hard when you had the chance. I'm 8 years out from my TN dx and thankful that I went through the chemo even though I had bad se's too. Best wishes whatever you decide to do.

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  • heartofapetal
    heartofapetal Member Posts: 2
    edited April 2013

    Thank you all for your responses.  I went from being diagnosed with breast cancer on February 20 to a lumpectomy of a 1.8cm tumor and sentinel biopsy on February 25. Lymph nodes were cancer free.  I began radiation through a Savvy catheter on March 18 twice a day for five days.  Then had a PET scan the following week that showed no cancer anywhere in my body, only to find out the next week that the pathology reports revealed triple negative breast cancer, histological grade 3.  And here I thought I had breezed through developing breast cancer.  Now I know that I have yet another step to take to becoming cancer free.  I am strong and positive and will continue with my goal to live to be 100!!!

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  • Jenn230
    Jenn230 Member Posts: 5
    edited April 2013

    I just wanted to tell you that I tried to avoid chemo as hard as I could. I was terrified that I would be SO sick and not be able to take care of my family. I'd also just had a baby so I didn't want to miss the first few months of her life.

    Then of course there was the hair loss. It's so vain but I just didn't think I could do it.

    In the end I just thought of my kiddos and knew I had to do everything I could to be here for them.

    I just finished my last chemo today. The only side effects I had were hair loss and fatigue. Heck even the fatigue wasnt all that bad. I know it will be well worth it. Those few months will possibly give me many many years.

    Ultimately you need to do what's right for you. I think it's so important to be comfortable with the decisions you make in this type of situation.

    I wish you luck with whatever you decide!!

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  • yellowdoglady
    yellowdoglady Member Posts: 349
    edited April 2013

    Do what you need to do to get yourself well.  We TNBCs typically only get one chance to make it gone forever.  Do that for yourself.  Watch your kids grow up.  

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  • drcrisc
    drcrisc Member Posts: 836
    edited April 2013

    Do what you can now.  I am TN and had treatment (surgery, rads and chemo) in 2008.  I couldn't tolerate Taxotere, so just had Carboplatin and CMF, 6 rounds.  It wasn't enough - I was diagnosed with mets to my lung last July.  I don't want to scare anyone, but my original tumor was small and found early.  TN can be more aggressive so get it while you can!

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  • drcrisc
    drcrisc Member Posts: 836
    edited April 2013

    Do what you can now.  I am TN and had treatment (surgery, rads and chemo) in 2008.  I couldn't tolerate Taxotere, so just had Carboplatin and CMF, 6 rounds.  It wasn't enough - I was diagnosed with mets to my lung last July.  I don't want to scare anyone, but my original tumor was small and found early.  TN can be more aggressive so get it while you can!

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  • fiddler4me
    fiddler4me Member Posts: 5
    edited May 2013

    No one ever pulls the chemo apart.  There are 3 parts:  AC and T.  AC come together as a package deal and T follows.  I've been reading that T only reduces the risk of recurrence by 1% - 1 out of 100 women.  Has anyone else found any stats on T regarding recurrence rate?  

    The reason I'm mentioning this is that if we're to be aggressive with tn, we need to educated ourselves every step of the way.  Perhaps it's only AC that we need.

    (dx 1/13, surgery to remove one infiltrating ductal carcinoma and one DCIS and 1 sentinel node; stage 1a, grade 2 approaching 3; finished 4 AC bi-weekly tx's and developed neuropathy; finished 4 of 12 T and thinking of quitting chemo)

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  • Luah
    Luah Member Posts: 1,541
    edited May 2013

    I am not sure of your information. But here is a meta study. See Figure 3. http://theoncologist.alphamedpress.org/content/16/suppl_1/1.full

    I know there are some women on these boards who did neoadjuvent; some got tumour shrinkage from the AC, and some from the taxol. 

    This is a pretty interesting review from one TN specialist: http://www.lbbc.org/Learning-From-Others/Ask-the-Expert/2012-05-Chemotherapy

    Someone posted a recent study showing some poorer outcomes with taxol but unfortunately I don't have that bookmarked, will try to hunt it up. 

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  • yellowdoglady
    yellowdoglady Member Posts: 349
    edited May 2013

    None of this is one size fits all.  I could not take the A because it is very toxic to the heart and my family history was not so good.  So I got cytoxin and taxotare, and that did the job.  Six days of daylong infusions, three weeks apart.  Then I did 35 rounds of daily radiation.  It wasn't fun but I still walk this earth four and a half years later, and so far, so good.

    What is important is that you understand your odds, your options, and know that it is your decision.  You must decide what you want to do.  No one can do that for you.

    If it was up to me, I'd ask you to live.

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  • Worrywart9390
    Worrywart9390 Member Posts: 101
    edited May 2013

    I think i read somewhere that when triple  negative comes back (if of course) it more than likely comes back with a vengeance (moreso than er +), so maybe that 5 to 7 percent chance will make a difference.  Imyself questioned whether i should do something more natural than chemo, but the statistics arent clear even though many are successful, and I look at my kids and knew I had to try the chemo to give me a better chance.  But that was me.  Everyone is different.  My oncolgist also gave me 3 choice ACT   TC or CMF I think.  She said ACT was the most agressive, TC in the middle and CMF less agressive.  Looking at the odds and side effects we all agreed to go TC.  My surgeon, oncologist, husband and myself.  I was glad to have the choices and hope and pray for the best.

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