Not sure where to post this? Breast cancer/colon cancer

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kika2013
kika2013 Member Posts: 101
edited June 2014 in Just Diagnosed


I can't figure out where to post this question but the people on the just diagnosed board were so helpful to me when I was just diagnosed with breast cancer this summer, and I know many of us drop in here to respond to others long after we are "just diagnosed" so am hoping someone will have some experience with this issue or could point me to a better thread.


I had a stage 1b breast cancer this past summer, had surgery, radiation, still figuring out the hormone therapy. Meanwhile, being a good patient, I went to see the doctor who has done two colonoscopies on me in the last 7 years, after my father died of colon cancer. He was 79 when was he diagnosed with stage 4 and died soon after, but there is no other cancer of any kind in his family or mine, or my mother's. At my last colonoscopy, when I was 40, they found a benign polyp that was pre-cancerous (so, the kind that can turn into cancer), which was apparently not a huge red flag at the time, especially since I was getting screened every 3 years anyway. So I went to the doctor when I finished radiation about a month ago just to tell her about the breast cancer, and she immediately started in about how I'd had a polyp at a young age and now breast cancer at a young age (42) and could very well be at genetic risk for all kinds of cancer. Needless to say, I wasn't expecting this and was terrified. I've managed to calm down some since then, and I have a colonoscopy next week, but meanwhile I also saw a new gynecologist who said the same thing and now wants me to have 2x annually transvaginal sonograms as she also feels I could be at risk for ovarian and uterine cancer based on the polyp and the breast cancer.


Has anyone been in a similar situation? I have no idea how at risk I actually am, and can't figure out why no one at either of the major NCI cancer centers where I was treated (surgery, medical oncology, radiation, etc) seemed to think colon cancer was an issue even though I told them about my father, but now these other doctors are raising giant red flags and requesting major screening.


I would appreciate any thoughts--feeling pretty confused and just when I thought I was reaching the end of my cancer path, at least for now, I am thrown back into this nightmare of testing and constant screening and fear. I was so lucky with my bc diagnosis but now feel doomed to die young of some other cancer.


Thanks

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013


    Kika, there are genetic syndromes besides BRCA that increase our risk for breast cancer. One is Lynch Syndrome and I can't remember the others off hand. My dad's mom died of colon cancer, his sister had it, he has aggressive polyps and I have already had precancerous polyps removed, as well as I had a rare ovarian cancer and have high-risk LCIS.


    I was sent to genetic counseling and they actually tested me for two other genes before they checked me for BRCA. I was negative for all, but I would encourage you to request genetic counseling. I too am treated at a county hospital associated with an NCI cancer center/medical school.

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  • DiveCat
    DiveCat Member Posts: 968
    edited December 2013


    I agree with Melissa to go see a genetic counselor. They can provide you with much better info on your actual risks and recommend genetic testing if suitable. I hate to say it....but I do sometimes find some medical providers who are not experts in cancer genetics throw out comments like you heard without much real knowledge or thought...or even explanation to back it up. I do not think they are ill-intentioned, they obviously just want to make sure you are monitored, but I wish they would just make a referral to the genetics experts and let them handle risk assessments and make recommendations for testing, screening, etc. I am sorry you were afraid!


    There are certain types of cancers that if seen grouped in a family can signal hereditary cancer risks, like colon, ovarian, skin, and breast, but also just as you had breast cancer, a benign polyp, and a father with colon cancer (at a later age) does not mean you do carry a genetic mutation either. My counselors were not overly worried about my grandfather's colon cancer, or another relative's colon cancer, as both were diagnosed at a later age (one had also breast cancer many years earlier) and likely their cancers were more due to aging, but did still consider it in context of many other cancers in family (several breast cancers). There are no known genetic mutations in my family (and I tested negative for BRCA-mutations and other genes they tested for including the one associated with Lynch Syndrome). So at this point it just remains something to be aware of and to screen for. The great thing about colonoscopy (as unpleasant as it is) is that not only is it screening, it is preventative...like a 2 in 1...since precancerous polyps are removed during the procedure. If only every screening method could have such an advantage!

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