Deciding to do it regardless if I test for the gene or not.

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fwood
fwood Member Posts: 3
edited January 2019 in Surgery - Before, During, and After

Hello!

I am new here and want to say I think I don't have breast cancer YET. I say that because I have necessary exams etc, I am 50 but I am incredibly high risk. Almost all of the ladies in my family have died of breast cancer and not all post menopausal.
2 Years ago when I thought my sister was fine, my doctor suggested the gene test but at that time I was busy getting a Uterine ablasion and having a growth examined there. To be truthful I just thought "I'll get back to it." My sister whom I thought was the healthiest woman on earth died 3 days ago. She had not sought proper treatment so I don't know if she would have been in remission by now if she had but I am done waiting my turn.
If the test comes back negative I still want the elective surgery. Does this seem out of line? I have lost all these women and they are all my 1st degree relatives and I just think I don't want my turn.

Thanks!
Very scared but willing to take anything on!

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  • windingshores
    windingshores Member Posts: 704
    edited January 2019

    I would have the test first and see how you feel. Did all the other women in your family who had breast cancer, have positive tests for the same gene?  Also, I imagine, since your sister died 3 days ago, that you are in shock and grieving so maybe not the best time to make this decision. On a practical level, will insurance cover surgery with a negative test? (But wait for the result before worrying about that!) So sorry for your loss, or losses I should say. Your fears are understandable.

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  • fwood
    fwood Member Posts: 3
    edited January 2019

    No.. they did not have the test. But my mother died of it, both sisters died of it (before age 60) and all my aunts have. I have a total of about 25 people that have died from one form of cancer or another. At least 8 of them was breast. Insurance probably wouldn't cover but looking at all the options.

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  • fwood
    fwood Member Posts: 3
    edited January 2019

    I just wanted to add this really isn't shock or grief that makes this decision for me. I have been contemplating since the first sister died at 42, after losing my mother to it. She was 66 and she had been sick since her 50s. This sister's death was the second call to action that I just feel like I can't ignore.
    The gene test will "probably" be positive. I am thinking how in the world I could dodge any bullet since even my dad died of a form of cancer. I am being hit with not a single shot, not even a double barrel but a scatter gun.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2019

    I would start by getting a referral to a Genetic Counselor. Your primary care physician could help you, or talk to the radiologist where you get your screening. They’ll be able to order the genetic test and also give you an idea of your risk. I was able to get a PBM without having a known mutation and insurance approved it. Sorry you are facing this.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    My sister qualified for genetic testing by a formula, due to my BC. And there was only me and one other BC. So it may be covered...

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2019

    Seeking genetic counseling as farmer Lucy suggested is a great idea. It really helped me understand my risks and what testing could or couldn’t reveal. I also come from a family with a history of cancer and I am an Askenazi Jew, which puts me at higher risk. I had BRCA testing years ago (negative) and the full Ambry panel this past summer, also negative. I was quite surprised. This doesn’t mean there isn’t a genetic connection, but if there is, that gene has not been found yet. I went through extensive genetic counseling and it really helped me understand what is known, not known and the implications for my daughters and granddaughters. All the best.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    I'm so sorry about your all your losses.

    I truly believe that we each have our own relationship to our breasts and to this disease, and you have to do what feels right to you. It sounds like you know what that is, and your major next steps are getting together the best case you can make to get it covered by insurance and/or to get the best surgeon you can on the job.

    I think what you will need is a doctor on your side. Whether it's a PCP or an ob/gyn, or maybe you'll get lucky and find a breast specialist. Someone who will be willing to really hear you, work with you on getting together the paperwork you need (and also making sure they are sharing with you the best medical information they can), work with you on finding the surgeon, etc.

    I think a genetic counselor is a good suggestion. I spoke with one after my genetic test came back with a very high lifetime risk of breast cancer (unhelpfully shortly after my diagnosis) but no marker for any known mutations. Yet, all the women on my (extremely tiny) maternal side of the family had breast cancer, and about half of them died from it. The counselor was able to tell me that there are genetic factors that science is still learning about it and not fully accounted for, and even if they are more minor than the known mutations, they can still be real. That could help you build your case for insurance/surgery. It's also very helpful for just understanding better and support in case you do have a mutation, which seems like a very plausible outcome.

    This is my long way of saying:

    1. It does not seem out of line to me
    2. Even if it did, you have earned the right to trust yourself
    3. This will be a lot easier if you have a supportive medical team, and that can be hard to fine, so it's not too soon to start looking for it.

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