TN's bad reputation. Let's stop it.

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CherryHill
CherryHill Member Posts: 42
edited May 2015 in Triple-Negative Breast Cancer

I am research freak. I've spent months reading TN related scientific studies and general media on the subject. And one thing makes me really puzzled. Why does TNBC have such a bad reputation? How did it started? Most of the time magazines and newspapers, and blogs, and forums exaggerate triple negative risks way too much. They copy/paste paragraphs from article to article saying how scary TN is.

Though, when you do actually check the numbers statistic kindly provides, similar cases (stage, node involvement, tumor size wise) which differ only by hormone or her2 status have very similar outcomes. Ok, like 80% vs 95% of survival. Yes, TN has it worse. But it's not "poor prognosis" or "low likehood of survival". It's just a little harder to beat this particular cancer. But hey, is any cancer easy?

Even right here, on BC.org/triplenegative one of the first topics on the top is "You CAN survive triple negative". But of course! How come patients are allowed to doubt they can? Most of us, vast majority of us, will survive it! I wish we all beat it, every single one of us!

What I want to say is that this "black PR campaign" of TN makes newly diagnosed afraid and stressed and indeed can endanger someone's chances. I don't know if optimism can cure, but I am very sure that pessimism can kill.



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

    Cheery: I agree with you 100%. I am a research junkie, so I know the stats. But unfortunately many people just glance at headlines, taken from pseudo health care websites that just repeat the same stuff, much of it based on older studies or without proper context. The vast majority of TN women go through treatment successfully and do NOT recur.

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  • breastcancerhusband
    breastcancerhusband Member Posts: 85
    edited November 2014

    Hey ladies

    100% agree with you.

    Overall breast cancer has the best prognosis of any cancer - and any cancer is scary! I believe here in the UK the overall 10 year survival rate is over 75%. For some cancers the 10 year survival rate is less than 10%.

    Luah is right, so much is based on older studies. Lots of newer studies show that some types of TN (and yep there are different types) actually have a better prognosis than some ER/PR+ tumours. And of course the chance of recurrence goes down over time with TN, and I believe after 8 years the overall risk of recurrence returns to the same risk as a woman getting breast cancer in her life-time. One think I've noticed from my research, its not actually the TN that have the worst overall survival rates anyway. I use the word worst, but as above overall survival rates for breast cancer are pretty good.

    Obviously so much is dependent on when the cancer is detected etc, but the scaremongering that goes on is getting silly. I think its to sell stories personally.


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  • breastcancerhusband
    breastcancerhusband Member Posts: 85
    edited November 2014

    The other thing to keep in mind (and this has just been pointed out to me by a very eminent doctor here in London) is that the introduction of Taxotere and Taxol have significantly improved TN survival rates.

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  • Kayrem
    Kayrem Member Posts: 164
    edited November 2014

    Along the lines of what breastcancerhusband said, I remember when I was first diagnosed, and pretty much in shock after doing all the reading, I asked my surgeon which cancer was worse. I meant hormone receptor positive versus negative. She looked me straight in the eyes and said pancreatic cancer. It was probably not what I needed to hear at the time (or maybe I did?). But I get it now - over 3 years later.

    None of this cancer crap makes any sense. It is what it is and I have seen people with ER/PR+ cancers at a much lower stage than me progress to stage 4 and beyond (including a dear friend). I am almost 3.5 years out from diagnosis and at times still anxious over my future. But I appreciate that I have had an opportunity to do lots of stuff in that 3.5 years and until someone tells me something different I plan on doing a lot more in the next year!

    At least triple negatives seem to respond fairly well to lifestyle interventions. The low fat diet, the exercise, we seem to be able to get effective reductions in recurrence thru healthy, non medicinal means.

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  • MaryThelma
    MaryThelma Member Posts: 1
    edited November 2014

    From what I've been reading, this is the type of breast cancer I had 13 years ago - hormone negative they called it then. Now it has a name! I agree some articles are very negative, although it is known to bean aggressive cancer. Survival goes back to size of tumor at time of treatment and success of treatment. I had surgery (twice - to get better margins) on a small tumor (6 cm), and radiation treatment. No lymph node involvement. I get a mammogram every year and I've been cancer-free for close to 13 years (May 2015). It can be beat!

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  • KJfromMN
    KJfromMN Member Posts: 3
    edited January 2015

    I was diagnosed w/ TNBC last October.  Currently half-way through my chemo and will have surgery this Spring.  It is great to hear from ppl with positive attitudes.  I stopped looking/reading online for awhile because it was scaring me so much.  The day I found out my BC was TN was actually worse for me than the initial diagnosis.  All from what I had read on-line!!!  I have taken an aggressive personal approach to beating this.  I am careful about everything that I eat and drink and exercise and sauna on a regular basis.  One thing I question is dairy.  Has anyone been told to stay away from dairy and red meat?  I do protein shakes and the powder I like is whey.  I've stopped using it but just wonder if anyone has advice about this??  Thanks!!

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2015

    Welcome to our supportive, wonderful community, KJfromMN.

    This Q & A may be helpful, in terms of dairy and red meat.

    Red Meat and Dairy

    Eager to hear what others have been told.

    Warmly,

    The Mods


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  • KJfromMN
    KJfromMN Member Posts: 3
    edited January 2015

    Thank you for the link.  I agree.  I did get lazy and put on a few extra pounds and didn't make exercise a regular ritual.  I told myself when my daughter left for college last fall I would make that a priority in my life.  I found my mass in September so I didn't even have a chance!  But things have really changed for me.  I'm careful about what I eat and have turned into a chronic label reader.  You wouldn't want to go grocery shopping with me!  Exercise is also a regular thing for me.  Even if I'm not feeling energetic I still do 20 minutes on the treadmill just to get something in.  Also, as I mentioned in my previous post, I incorporate the sauna whenever I can.  I was told by a reliable source that this really aides your body in toxin removal.  I can tell after chemo I really sweat in the sauna a lot more.  So if you have access to one I would highly recommend it.  I also drink alkaline water, also a tip from someone.  There are mixed reviews on it but I'm willing to try whatever.  Has anyone else tried drinking this with success?  Hope everyone is doing well.  ~  KJ

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  • treelilac
    treelilac Member Posts: 245
    edited May 2015

    Somebody posted this on another thread. You might need to open an account to access it. But the researcher was talking about CURE: "Early-stage triple-negative breast cancer we mostly cure. About 70% to 75% of patients with early-stage triple-negative breast cancer are cured by standard anthracycline—usually doxorubicin in our country—cyclophosphamide (A/C), and one of the taxanes, either paclitaxel or docetaxel. Node-negative patients have a higher cure rate, it is probably in the 85-plus percent range but if you put all of the early-stage triple-negative breast cancer patients together, including node-positive, our cure rate is in the 70% to 75% range with standard adjuvant chemotherapy."


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