Statistics and other concerns

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Luvmydobies
Luvmydobies Member Posts: 766
edited June 2014 in Triple-Negative Breast Cancer

Hi everyone, I'm new but have been a lurker for awhile. Could someone tell me any "real" stats regarding TNBC. I know each case is different but I've heard survival rates being only around 50% even for early stage but I've also heard 70%. Also I've read that only 20-40% of TN patients receive a complete response to treatment, and I'm worried that since I had surgery first that I'll never know? The response rates scare me because if those percentages are accurate then it means most of us have residual disease and are in deep do do! Can someone please help ease my fears?  I was a Stage II A with no nodes involved but my tumor was 3.5 cm's and grade 3. I know that we shouldn't rely on Dr. Google but sometimes I wonder if our doctors really feel pretty good about our prognosis or if they're saying live right now because since you're TN it'll probably be back. I know we should all live in the moment no matter what but I'm struggling. I finished chemo seven months ago but have constantly been stressed. I handled chemo fairly well but had C Diff three times. Ugh. They finally put me on a tapered dose of Vancomycin for it from the end of May until I finished chemo. Also I worry that since I didn't eat very well towards the end of treatment due to C Diff and my Onc telling me to eat whatever I craved to not lose weight, that I really raised my risk if recurrence. I craved things like honey buns and hamburgers, plus I was wiped out from C Diff on top of chemo so I didn't exercise very much. Aaargh! 

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  • carpe_diem
    carpe_diem Member Posts: 1,256
    edited March 2014

    Luv,

    Even if you are concerned about Google, you might find this info from Wikipedia helpful.  A major study it references is from Dr. Hudis at Memorial Sloan-Kettering, a well-known researcher.

    "Triple negative breast cancers comprise a very heterogeneous group of cancers. There is conflicting information over prognosis for the various subtypes but it appears that the Nottingham prognostic index is valid and hence general prognosis is rather similar with other breast cancer of same stage, except that more aggressive treatment is required.[3] Some types of triple negative breast cancer are known to be more aggressive with poor prognosis, while other types have prognosis very similar or better than hormone receptor positive breast cancers.[4] Pooled data of all triple negative subtypes suggest that with optimal treatment 20-year survival rates are very close to those of hormone positive cancer.[2]

    Triple negative breast cancers have a relapse pattern that is very different from hormone-positive breast cancers: the risk of relapse is much higher for the first 3–5 years but drops sharply and substantially below that of hormone-positive breast cancers after that. This relapse pattern has been recognized for all types of triple negative cancers for which sufficient data exists although the absolute relapse and survival rates differ across subtypes.[2][4]"

    So it sounds as if you need to hit it hard, but aggressive treatment can really make a difference. If you haven't gotten a second opinion on treatment from a major cancer center, that would be worth looking into. With chemo and C Diff it's not the time to worry about healthy diet and exercise, but once that's under control you can think about making changes.  Many women find modified yoga classes (mine is called "gentle yoga") can be started when you don't have the energy for more aerobic activity.  Meanwhile take deep breaths (really! It does help!) and concentrate on treatment.

    Good luck!

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  • christina1961
    christina1961 Member Posts: 736
    edited March 2014

    Luvmydobies,

    I had neoadjuvant chemo and had a 2-2.5 cm tumor with one palpable node at the start.  When I had my mastectomy, they still found 2 cm of tumor and two positive (macro) nodes.  I had great margins and no identified LVI.  They also found 5-10% ER receptors in the remaining tumor but depending upon who you talk to, that may or may not be significant. I did have another chemo regimen after surgery in a clinical trial but there is no evidence that that is helpful.  I just wanted to be as aggressive as possible.  I am on tamoxifen though and may be on it for ten years according to my onc.  I just passed the three year mark in February with no sign of recurrence.  I was told after surgery that I had a 50% chance of recurrence because I had so much residual disease.  I was also told if I made it three years without a recurrence, that was very good - if I made it 5 years, I probably would not face a recurrence.  I was so scared until about six months ago when the fear finally began to let up.  I still get scared but it is so much better.  I am just writing to show that even if you didn't have a response to chemo, it doesn't mean you will have a recurrence.  

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited March 2014

    Carpe, thanks for the info. I finished treatment in August and I was treated at UNC which is a comprehensive cancer center and supposed to be among the best. I should've mentioned that I know recurrence rates for TN is highest the first three years and that scares the heck outta me! I had four dose dense A/C treatments and 12 weekly Abraxane treatments. I had a double mastectomy for surgery first though. The Radiology Oncologist said that due to my surgeon getting good margins and since my nodes were clear that I didn't need radiation. My Oncologist told me at our first appointment that with the chemo regimen they recommended that my chances of it not coming back were about 78-80. I know I have to do my part with exercise, eating right and limiting stress, but my stress level has been really high! It sucks that I ate right, exercised and never was under much stress before I got cancer though! Nobody deserves it though. My tumor was 3.5 cm so my Onc said I was fortunate that it was contained to the breast. But still the Triple Negative status still hangs over my head. 

    Christina congrats on the three year mark!

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  • Luah
    Luah Member Posts: 1,541
    edited March 2014

    Luv, don't be too hard on yourself... it's early days still, and it takes a while to compartmentalize the fears and stow them away at the back of your mind. For me, the first 1-2 years were tough, but it gets better.  

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  • carpe_diem
    carpe_diem Member Posts: 1,256
    edited March 2014

    Luv,

    Luah is right on about that first year being tough. I spent mine getting my affairs in order and planning a memorial service, but then life kept happening. Here I am three years later in my new home watching the sun set over the lake.

    I'll have to admit that I certainly didn't do everything right.  I was an overweight couch potato, but lots of my fellow spuds don't get breast cancer. There's a cartoon I love on the fairness issue: Hagar is standing on the wreck of his viking ship shouting "Why me?" to the skies.  In the next panel a voice from above answers, "Why not?"

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