My Mom Has Bilateral Breast Cancer- What's My Risk?

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Anonymous
Anonymous Member Posts: 1,376

Hi Everyone,

This forum has been my lifeline since my mom's dx last May- although I rarely post, I've gotten the comfort of knowledge and seen how supportive everyone is. Of course, I wish there was no such thing as cancer and none of us had to be here at all! 

  Anyway, my 66 year old mom has Stage IV bilateral breast cancer- mets to multiple bones, lungs, nodes, and had bilateral malignant pleural effusions upon dx. She had a large tumor in right breast, much smaller in left. I don't know if it is ductal or lobular, which I know makes a difference since lobular carcinoma is more often bilateral. The bc is strongly ER+&PR+, HER-. I don't know the grade either- I go to all mom's appt's with her, but she relies on me for info and I'm afraid to ask the doctor too many questions for fear he will give an answer that scares or discourages her. She is doing great- on Femara & Zometa, completely asymptomatic. So she is very cheerful and optimistic and I don't want to ruin that by having her hear some statistic that may never apply to her. She probably had the cancer for a long time before dx- she had never had a mammogram so we have no idea. She also went through menopause very late- she was probably about 60. So she probably was premenopausal when she got breast cancer, although she was most likely older than 50 unless it was VERY slow moving. I see some stats that consider "younger age" premenopausal, and others before age 50. This difference concerns me because to my understanding, when a 1st degree relative has breast cancer at a younger age, the risk is higher to relatives.

  I don't know my father's family hx at all, and my grandmother & great grandmother and her sister (small family) lived til their 80's & 90's. My aunt, the only other female relative besides distant cousins, is alive & well at age 64. So my mom is the only relative I know to have breast cancer in our family. My grandmother was a lifelong smoker and died of lung cancer at age 80- doesn't really count as family hx. So basically, I'm wondering, am I at extremely high risk? I did that risk calculator and it has me at about 19% lifetime risk as opposed to about 10% regular population(not sure exactly)- not too bad. Then today I read that if a 1st degree relative has bilateral breast cancer, the risk is 5X higher. So that puts me at 45-50% chance of getting breast cancer if that is true! I've been thinking of a prophylactic mastectomy but know I need genetic counseling and my insurance might not cover it. 

  Does anyone have any information on the significance of a 1st degree relative with bilateral, ER+ PR+ breast cancer that first occurred premenopause at about age 55-60? It's time for my mammo- 6 month schedule due to complex cyst found in July. So I'm worrying more than usual, but this 45% statistic really scared me and although it sounds unlikely, I don't know enough to be sure. Thanks in advance for any help!

Comments

  • Beckers
    Beckers Member Posts: 1,883
    edited February 2013

    I had bilateral BC. Where did you read that about 5X? the genetics counselor did recommend my sister go on Tamoxifen for 5 years.

  • Moderators
    Moderators Member Posts: 25,912
    edited February 2013

    darkestB4dawn, we're sorry that you're facing this increased worry!

    The main Breastcancer.org site, in the section about Breast Cancer Risk Factors, considers Family History, including this:  "If you've had one first-degree female relative (sister, mother, daughter) diagnosed with breast cancer, your risk is doubled." That five-times number only comes up if you have two first-degree female relatives.

    The article goes on to talk about risk-reduction options that are available to you, from lifestyle changes to hormonal therapy medicines, and more frequent screening.

    • The Mods

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2013

    I would recommend that you speak to a genetic counselor. For me the appointment cost was minimal and totally worth it.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Thank you all for your responses!



    Beckers, I can't remember the sites I found that info on, but there were two different ones. Then a third site which said a 1st degree relative dxed w bi lateral bc pre menopause put lifetime risk at 36%, and post menopause puts risk at 30%. That made more sense to me, but I don't like those odds much either. The tamox for your sister sounds like a proactive choice, I will ask about that when I go for counseling. I'm sorry to hear of your dx- I hope you are doing well now!



    Mods, thanks for the info- I will check out the section on Risk that you recommended!



    Farmerlucy, I will definitely see a genetic counselor, it seems to be well worth it! Thanks!

  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited February 2013

    I talked to my mom's oncologist about my own risk and was told that my mom's history was not enough to deem me as high risk so that I could have genetic testing covered by our health care system (I'm in Canada). I am especially confused about the information out there about risk because they refer to a higher risk if my mom was under 50 (she was barely 51 when dx) and if premenopausal (she had a hysterectomy a few years early, but if going by the other women in the family would likely not have been menopausal yet if not for the hysterectomy). Watching her get diagnosed a late stage 3 even with regular screening only to have it spread to bones and nodes 11 years later has made me see my own breasts as ticking time-bombs.

    I have issues with uterine fibroids and ovarian cysts and have been told most of my life to consider a hysterectomy after the age of 40, which I turned recently. I have decided to pursue that but it's in the back of my mind that my mom's BC came after her hysterectomy even though I keep reading that premenopausal women with BC benefit from being forced into menopause. I would like to have a prophylactic mastectomy with reconstruction as well, but can't afford to do it if it won't be covered by OHIP. If anyone knows of any loopholes they'd be much appreciated!

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