TNBC is only 15% of all BCancers'!

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snowyday
snowyday Member Posts: 1,478
I was going through threads yesterday and came across a the website www.tnbcfoundation.org.  I didn't even know it existed (so thanks for the info).  I signed up to the site and and started some reading and I was stunned to find out that. Only 15% of all breast cancers are triple negative.  I really wish my pathology report had said triple negative in plain words.  They called it High Grade and I searched the web for high grade cancer and the most I came up with was pancreatic cancer.  They asked the question on tnbcf what would you like to see on your pathology reports so I said the above, if it's triple negative and hormone negative have it on the report and also have a counsellor available to talk about those results.  I felt scared all over again and had to sign off and just go to bed and watch tv so I wouldn't think about the type of cancer I have.  I would have been more proactive in my chemo and rad decisions had I known how serious it is. Instead I followed like a lamb and except for the rads trials. How would you like to see your path reports?Pearl49

Comments

  • ravdeb
    ravdeb Member Posts: 3,116
    edited January 2008

    Yes..I knew this about tnbc and I'm also on that forum.

    I would have liked the percentage of ER or Pr. My path just said it was all negative..no numbers. not good enough for me!

  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    I'm on TNBC and answered that thread too (as chaya). My path report did have numbers for the negative tests, though I don't really remember which one because at the time the info didn't mean anything to me. And when I started doing research and trying to match the terms on the path report with what I was seeing online - total confusion.



    Real English explanations would be great (for those of us who have English as a first language - they should probably offer a choice of languages).



    I don't think the pathology lab should be responsible for a counsellor though - that should be explained by the doctors you are working with. A really good FAQ, with links (what I've seen doesn't have nearly enough info) would have been the thing that helped me the most. It took a lot longer understanding everything trying to understand what everything was.

  • fd411
    fd411 Member Posts: 398
    edited January 2008

    I am on that board also, but because I am a younger African American woman, I think I was made aware of the fact that I had a nasty cancer by my onc. 

    My path report mentioned er/pr negative, the her/neu- came later, but I had already done some research about younger AA women and triple negative, and just from what my onc told me, I had a feeling.

    I just did lots of research and asked lots of questions, but I think the medical professionals should be available to explain these things when it comes to what type of treatment one will be receiving and why they need to receive that particular type of treatment.

    Ferne 

  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    fd411 -



    You are a great example of how having information helps. Because you had that information you knew what was being said (and not said) and what questions to ask.



    Because we are such a small percentage of the total numbers, when you do introductory web searches on breast cancer, tnbc doesn't get many pixels. When it does, it primarily talks about young and/or AA (and now Latina) women. While that was great for you, since I am in none of those categories, it never occurred to me to figure out what questions to ask.



    I think one of the things that would help the most was if all the sites that prepare women for talking to their doctors were more straightforward about tnbc. We can't dump all this on the path labs - their job is to issue reports (that can be read) and not educate.



    I really didn't care how many of these kinds of surgeries the doctor had done, or some of those other questions they suggested. What I do care about is what does this specific dx mean to me.

  • fd411
    fd411 Member Posts: 398
    edited January 2008

    Hi guitarGirl.

    I think my onc also mentioned this to me because he has dealt with triple neg and knows about it. He said he didn't know what kind of cancer we AA triple negs women get; he's never seen anything like it before. He told me what we were dealing with and that he wanted to use very aggressive treatment. He said I was young and my health was good enough to tolerate the treatment.

    I just said OK, lets do what we have to do. At that time we thought I was at a stage II and the goal was NED and possible cure.

    But triple neg doesn't effect everyone the same way. There are Triple Negs who are doing rather well, NED or in remission, and then there is me not doing well at the moment.

    I also think it's the onc's experience with dealing with a certain type of cancer as well. They should be knowledgeable of the whole gamut, but if they've never dealt with it, maybe they're not. But cancer doesn't discriminate. Everyone should be told what they are dealing with (if they really want to know and can handle it) regardless of what race, what age they are and who typically gets what.

    I'm just inquisitive. That's my nature and it always has been. I just don't feel right if I don't understand things to my satisfaction. That's why this brain mets really burns me. I'm confused and out of it. I'm not used to that.

    One of my mottos is, "If you don't know, go find out." I believe communication is extremely important. But one thing I do know is that when I first met with my onc he was very cautious. He was extremely vague until he understood where I was on an emotional and intellectual level. Then when he saw what page I was on, he opened right up. Same with my rad onc. He know's I read and do research and knows I ask will him all kinds of whacky questions. Laughing

    Hugs to you,

    Ferne 

  • snowyday
    snowyday Member Posts: 1,478
    edited January 2008

    You ladies are great, thanks for answering my questions. My problem when I got the path report was tiredness, I was misdiagnosed for almost two years and down to 99lbs. So I just accepted the the information at first and then got curious.  But I really wish the words Triple Negative would have been on the report at least that.Pearl49

  • ravdeb
    ravdeb Member Posts: 3,116
    edited January 2008

    I'm not AA nor young but my surgeon told me I had a nasty, aggressive cancer. I was diagnosed Sept 2005. The first onc I went to had no inkling what tnbc was but the other two oncs I saw and the one I ended up with for treatments knew very well I needed to hit it hard.

    However..my insurance company did not know that and did not agree...of course. (I got Taxol donated to me).

  • guitarGrl
    guitarGrl Member Posts: 697
    edited January 2008

    fd411-Sorry to hear you aren't doing well. It makes me more than angry that someone like you (i.e. bright and inquisitive) has brain mets - don't know you guys well, so I'll save the curse word for another time. Big virtual hugs back at you, and if there is anything I can do long distance, just let me know.

    ravdeb - it amazes me how lucky I am that my HMO gives me good benefits & what I want (at least so far). They are even letting me have a number of genetic tests even though there is no history of breast cancer in my family. Makes one a believer in socialized medicine and a wonder-er about a country that ... (political comments self-censored)

    Susan
  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2008

    Susan...Do you have socialized medicine? I was unclear about what you meant at the end of your post.

    I was also wondering about your comment further up..what did you mean about "real English"? Did they use too technical of terminology on your path?

    I live outside of the US and so my excisional biopsy path report which was done in one hospital was in English and the lumpectomy/snb path was in our native language.The English on the report was toooo simple! It had no details on it at all. I find that if I get a report in English and I dont' understand it, I start googling big time!

    We do have socialized medicine and it's helpful for most things. I was part of a study and did the BRACA testing free, but needed to be part of an hour long interview via telephone after I got my results.

    The problem here is that I just learned that we only have 10 MRI machines in the whole country which is why it is so hard to get an MRI. They refused to do a breast mri even though I have dense breasts AND my onc called them! They just will not approve it for me.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2008

    for me, i pretty much always knew about the "rarity" of trip neg but what has always bothered me the most about it is that what it means is fewer research dollars go for the cure of it...imo

  • guitarGrl
    guitarGrl Member Posts: 697
    edited February 2008

    ravdeb -



    they gave me the same path report the doctors get - I was able to figure most of it out - at least the important things like size of tumor & triple negative-ness. It didn't say "triple negative" in so many words. As I was researching terms to understand the report, I started reading about triple negative, went back to the path report & realize that's what it was saying. I want both - an "English" summary and all the details.



    no I don't have socialized medicine, but I do work for an organization that has very good medical benefits. What I mean by that statement was seeing the different levels of care women on this forum are getting. Why did one woman who had more reason than me to get the braca test done was turned down and I got it easily. Why are some women making choices that show that they aren't getting enough data when they make their decisions.



    I was lucky. I had a surgeon who specialized in breast cancer and the same with onc. I feel for women who are going to a general onc - especially ones that are unfamiliar with trip neg - what are they being told. So I do feel if I ever become an activist after this (unlikely), I wouldn't spend my energy so much on finding a cure as finding equal care for everybody.



    susan

  • HollyHopes
    HollyHopes Member Posts: 497
    edited February 2008

    my great, great, great grandmother was AA (big family secret!!), but my onc and surgeon were crystal clear about triple neg and all of what it meant for me....

  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited February 2008

    Hey Pearl,

    Neither my onc, nor my surgeon...nor my pcp...told me that I had a "rare" kind of cancer.

    I found out about it on this website.

    I thought....negative for this "yea!" negative for that "yea!" negative for that too! "yea!" And when my onc told me no treatment after chemo and I was like "yea!" he didn't say s*it.

    I ripped him (onc) a new you-know-what when I saw him next. I guarantee you he won't do that to the next trip neg patient he has.

    Hugs girl.

    Traci

  • Shirlann
    Shirlann Member Posts: 3,302
    edited February 2008

    Hi gals, when I was diagnosed with triple neg AND a strange breast cancer that is called Medullary, only 5% of us are this.  Sounds goofy.  This was 9 years ago and no one said much about either thing.  I am fine.  No new cancer anywhere, so I am one of the ones that is doing okay.

    I do have residual rib problems from rads.  Oh well, I am still here.

    Hugs, Shirlann

  • HollyHopes
    HollyHopes Member Posts: 497
    edited February 2008

    Hi Shirlann,

    What kind of rib problems?  I finished rads in Sept and have recently been feeling a pinching kind of pain on the radiated side in my ribcage - similar to when you are exercising or running and get a sharp stabbing pain that then disipates quickly - except htis happens when I am sitting perfectly still...

  • snowyday
    snowyday Member Posts: 1,478
    edited February 2008

    Traci I loved your post and thinking negative yeah, made me realize I at first did the same thing because positive is supposed to bad right. Boy I've learned so much and Shirlann your the best you always perk me up even when I'm at my worst.  I too get the same rib pain but I am also getting the dead arm thing in the mornings, can't wait till that ends. But I haven't said anything except in a pm but they think the original tumour is back can feel it so the last week I've spent setting up the scans, had the blood work done next week see the rad onc and bone scan thurs. So don't know what to expect. One good thing , my mom had a temper tantrum in her retirement place (it's a really expensive ritzy place) and they have been shirking on the fresh fruit and meat alot for the last few months. So I will have my mom for the next week which is good because it will take my mind off of the tests.  So except for the tests next week I will be spending it reteaching my mother proper conflict resolution. I do have to say she did really good she pays 33k to live at this place and she doesn't get nursing care it's just a fancy place so I have to get them to understand how important fresh fruit is and to get my mom to settle down about the issue and deal with it properly, or get her out of there. Should be an interesting week. pearl49  I'm babbling again

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