opinions/decision making

shanarose
shanarose Member Posts: 9
edited February 2021 in High Risk for Breast Cancer

Hi everyone. I hope you are all doing well :)

I am trying to process some information and make some difficult decisions. Hoping to bounce my options around here and get some support/feedback.

I am a 40 year old female. I was diagnosed with LCIS/ADH/ALH in July following a lumpectomy. I have been closely monitored for several years because my mother was diagnosed at age 39 and my maternal grandmother had breast cancer as well. I am also Ashkenazi Jew.

My choices are the typical; closely monitor with MRI, mammo and Ultrasound (with or without chemoprevention)

bilateral mastectomy (preventative)

I have already been through my round of MRI which is leading to more follow up because I have busy breast

Over the years, I have had a total of 3 or 4 biopsies

I am not sure I can continue living with constant fear, check-ups, extra testing, biopsies

i also feel like choosing the mastectomy is dramatic/drastic

Would love some opinions. Thank you all so much for being here

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Comments

  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited February 2021

    That is a very personal decision. What does your doc recommend? I do certainly understand the constant surveillance and how nerve wrecking that can be. I wish I had a better opinion for you, but I'm afraid I don't. You're so young. Welcome to the site..

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  • shanarose
    shanarose Member Posts: 9
    edited February 2021

    Thank you for responding, this can feel so lonely at times! It is interesting you ask about doctor recommendations because I have had several different recommendations

    a male oncologist who I was not extremely fond of recommended that I be monitored and consider tamoxifen

    a female oncologist who is very human opined a double mastectomy

    the breast surgeon saw both perspectives, saying that if this was happening to his wife, he would want her to have the mastectomy while his wife would likely choose to be monitored

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  • Rosemarysgranddaughter
    Rosemarysgranddaughter Member Posts: 7
    edited February 2021

    Hi there! I have a very similar situation: mutation negative but mother and grandmother both developed BC in their early 40’s, plus my aunt who was Dx’d at 72. I am 42 and had been going the surveillance route, but after a lump scare last fall, plus recently losing my aunt to what we had thought was a no biggie, “caught it early” stage 1 cancer, I decided I cannot live with the risk any longer and am having a PBMX two weeks from now. My aunt’s daughters have now both completed theirs as well—and like you they have Ashkenazi ancestry through their father. In a moment of doubt, I asked my PS if she thought I might be overreacting, and she said this kind of family history is a valid indication for surgery. In her view, the pain and challenges and impacts of surgery, while substantial, are better than facing the same challenges but also with cancer.

    Good luck with your decision

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  • shanarose
    shanarose Member Posts: 9
    edited February 2021

    Thank you for your response. I appreciate knowing what other people have decided; it seems to help :)

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2021

    Have you had any genetic testing? Although being of Ashkenazi descent does increase your risk for certain mutations, you need genetic testing to confirm that. I am also Ashkenazi , with some cancer history in my family but all my genetic testing has been negative. The current reality, with what is known, still puts the genetic link at a very small percentage of those who are dx'ed with breast cancer. Don't make any assumptions about genetic risk unless you're tested.

    PS: What is chemo prevention?

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  • MaryScout
    MaryScout Member Posts: 38
    edited February 2021

    Hi There,

    I had prophylactic MX w/ diep flap reconstruction as a result of ADH/ALH. I'm a survivor of other types of cancer, and I didn't want the constant "scanxiety." I totally understand that this is not a choice for everyone, however, for me, I have zero regrets. I'm happy to talk if you want. Best of luck in making this decision. It's a tough one.

    Yours,

    Mary

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  • shanarose
    shanarose Member Posts: 9
    edited February 2021

    exbrnxgrl - chemoprevention is taking a drug like Tamoxifen to reduce your risk. I have had genetic testing and thankfully I do not have a genetic marker. So, you are right; I am making the decision based on my personal diagnosis of LCIS/ADH/ALH and strong family history.

    MaryScout - thank you for offering to talk. I believe I have made the same decision. I would love information about the surgery

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  • moth
    moth Member Posts: 4,800
    edited February 2021

    Oh I see, I think I see where the confusion arose. Tamoxifen though is not chemo, it's a hormone blocker, so the proper term is hormone therapy. There are chemo drugs which are used prophylactically now - xeloda esp comes to mind but it's a very new therapy.

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  • sasamat
    sasamat Member Posts: 53
    edited February 2021

    FWIW @shanarose I would do PBMX if I were in your shoes. I've thought about it a lot because of family history and my own busy breast and my situation currently feels clearly lower risk / lower agony than yours. I think either decision is totally reasonable and only weigh in in case it help you weigh the options.

    Re: the negative genetic testing (also true for me). An absence of a known mutation does not prove there's no genetic basis for the cancers in your family. You could still have unfavorable genetics, but something less common and/or more complex than the giant neon signs like BRCA1 or 2.

    Also, I believe BRCA 1/2 mutations are more likely to be associated with triple negative cancers (which is what my mom had, so again I've dwelled on this) and tamoxifen will not have the same preventive effects for that. So that comes back to ... if there's a genetic factor, it could bring a predisposition for TN, which makes PBMX more justified, in my mind.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2021

    shanarose,

    Tamoxifen is not chemotherapy and therefore not “chemo prevention". It is a hormone blocker and has nothing to do with chemo. A risk reducer? Yes, maybe but this is not chemo. Even when those who have been dx'ed with breast cancer and take Tamoxifen do not refer to it as chemo. All the best to you.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2021

    I am posting this as I stand corrected:

    https://www.oncolink.org/risk-and-prevention/prevention-screening/what-is-chemoprevention

    The term chemo prevention is out there. I have seen it before but do find it confusing given that the medication it refers to is not chemo to begin with! It’s not a common term on bco and makes little sense but it is indeed used. Noone asked me but I would go with risk reducer 😊.

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