strong family history

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KathyL624
KathyL624 Member Posts: 217
edited April 2017 in IDC (Invasive Ductal Carcinoma)

My aunt was diagnosed 9 years ago with Stage 1 ILC. I was diagnosed last year with Stage 1 IDC and my mom was just diagnosed with Stage 1 mucinous breast cancer. No genetic mutations found in any of us. At the time of my diagnosis/surgery, it didn't seem like such a strong family history, but now that my mom has been diagnosed, that has changed.

Since my tumor was small with clean nodes, and my oncotype was 9, I did not do chemo. Now I am second guessing that because of this family history. Has anyone's doctors told them that family history increases their chance of recurrence? Or does it just increase your chance of getting cancer in the first place? My doctors say my prognosis has not changed, but I am worried.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2017

    I can understand your concern. Let me put your mind at ease just a little bit. chemo is given to "mop up" errant cells after surgery or to shrink the mass before surgery when there is a reasonably high likelihood of recurrence. With a Oncotype of 9, your risk of recurrence is very low. Of course, you will be under close surveillance now anyway, so there's really not anything left to do, except hormone suppression. But chemo is not really a preventative medication, in the traditional sense.

    You might want to make contact with your genetics counselor, if you haven't already. It is entirely possible that you all share a gene mutation that is rare or undiscovered. My particular gene mutations are rare enough that 4 years ago scientists didn't know much,if anything,about them. Matter of fact, the only way we found them was on an expanded 32 gene test. There is a lot of cancer on both sides of my family. What we know now is thatthose gene mutations are implicated in every one of them! So now I'm having all kinds of surveillance, but at least I know.




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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited April 2017

    My family also has a large cancer presence. On my Dad's side, 1 Aunt had ovarian cancer and my Dad died of Colo-rectal cancer. On my Mom's side there are 7 girls, of those 7, 3 had breast cancer, 1 had uterine and 1 had ovarian. My Mom is cancer free, but both my sister and I have breast cancer. Prior to my Radiation Therapy, I had the most extensive genetic testing done, that was available in 2015 and nothing was abnormal. Despite all this no one died before reaching 70 years, and the first Aunt on my Mom's side who had BC twice, died when she was 84. If I remember right, my oncotype was 7, so I just did surgery and radiation, and although I tried Arimidex for 10 days, I could not tolerate it at all and am just trying to eat well and maintain or lose weight. Best wishes to you!

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited April 2017

    I echo mustlovepoodles’ advice. A family history, absent genetic mutations, is pretty much random—remember, 85% of bc patients have neither a family history nor genetic mutation. (However, as she correctly points out, new mutations are being discovered and variants of “unknown significance” occasionally are found to be of known significance). What the genetic mutations affect is the chance of developing certain subtypes of breast and other cancers, not necessarily the aggressiveness of tumors known not to be aggressive (i.e., your very early-stage low-grade double-hormone-receptor positive/HER2 negative, or “luminal A” cancer).

    And not even genetic mutations are as predictive as the histology & cytology (actual biochemical characteristics) of the tumor cells themselves. A score of 9 is pretty robustly low-risk, and indicates your tumor didn’t have enough fast-dividing cells to be vulnerable to chemo and therefore outweigh chemo’s risks. In other words, in your case chemo would likely do more harm than good.


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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited April 2017

    HI KathyL624:

    One should distinguish recurrent disease from a new primary. From other posts, I believe you are on ovarian suppression plus an aromatase inhibitor? In addition to reducing the risks of local and distant recurrence, endocrine therapy can reduce the risk of new disease (i.e., a new primary tumor in the same breast or in the contralateral breast).

    Please confirm it with your Genetic Counselor, but if a person diagnosed with breast cancer has inherited a genetic predisposition to breast cancer, this could affect their risk of a new breast cancer primary (ipsilateral new disease or contralateral disease). It is very fact-specific, but if a genetic counselor determines that a person's lifetime risk for breast cancer is sufficiently high to warrant it (based on results of genetic testing and/or very, very significant family history), they may recommend consideration of risk reducing prophylactic bilateral mastectomy, rather than continuing enhanced surveillance and/or chemoprevention/endocrine therapy. (Please note that I am speaking generally here. I am not saying that your family history would warrant this.)

    It is best practice to check in with your genetic counselor from time to time, and update them on new, relevant personal medical and/or new family history.

    BarredOwl

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  • KathyL624
    KathyL624 Member Posts: 217
    edited April 2017

    Thanks everyone. BarredOwl, I actually did do a bilateral mastectomy, and am doing ovarian suppression plus A.I. in an effort to be as aggressive as possible. ChiSandy, my doctors said what you did--given my stats and oncotype, chemo was more risky than beneficial. So I guess I need to try to be at peace with the idea that I've done what I can. I am young for this (39) so very concerned for the future.

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