Considering Bilateral Mastectomy - Advice Gratefully Received

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frillsandpills
frillsandpills Member Posts: 4
edited December 2015 in High Risk for Breast Cancer

Hi!

I am 28 years old and am seriously considering having a prophylactic bilateral mastectomy.

My mum has secondary breast cancer and her sister has just been diagnosed with the same. They are both terminal and their mum died of breast cancer when she was in her 40s.

I don't want to go through that, nor do I want my husband and children to go through it. I am currently 15 weeks pregnant with my final pregnancy, so would not look at this until the 2018/2019, but I want to get all my facts together. My husband, family and friends are supportive of me doing this, but I don't really know where to begin.

Any help and advice from those who have had this surgery for similar reasons would be gratefully received.

Thank you.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2015

    Have you and your mom had genetic counseling/testing? Even if it turned out your mom has a genetic cancer you would only stand a 50% chance of inheriting the mutation. Since your mom has cancer it would be good if she could be tested.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited December 2015

    Melissa beat me to it! With your strong family history, I'm pretty sure you insurance would pay for genetic testing. And get the 32-gene panel, not just the BRCA genes. There are other genes that can cause BC besides BRCA. It would be great if your mom was willing to be tested--if she's negative for gene mutations, then she can't pass one on to you.

    It sounds like you're taking your time with this, gathering information. I think that's wise. In the next 2 yerars I think we will know a lot more about genetics and cancer, and I imagine the treatments advised will be somewhat different than they are today.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2015

    Hi frillsandpills and welcome to Breastcancer.org,

    As Melissa and mustlovepoodles have said, genetic testing would be a great idea for someone in your situation. You can read more about this on the main Breastcancer.org site's section on Genetic Testing.

    If you do decide to move forward with a prophylactic mastectomy after your genetic testing, you can get more info on this surgery on the Prophylactic Mastectomy pages.

    We hope this helps! Please let us know if we can help any further, and keep us posted on what you decide.

    --The Mods

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  • frillsandpills
    frillsandpills Member Posts: 4
    edited December 2015

    Hi. My mum has had genetic testing and does not carry the BRCA gene, but as all women in her family (her mum, her aunt, her sister and her grandma) have had it, it is highly likely they carry a gene not yet discovered. That is what the specialist said!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2015

    Was she just tested for BRCA? There are other genetic syndromes they are testing for now that affect breast cancer risk.

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  • owlwatcher
    owlwatcher Member Posts: 130
    edited December 2015

    You know these women know that just because of your unique genetic background it doesn't mean you will get this disease and they are right.   But I was happy to get rid of something that may kill me. There are other things that will kill me and I will die of something that is certain. So that is what you need to think about in these next couple of years.. what is your relationship with your breasts?

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  • julieho
    julieho Member Posts: 222
    edited December 2015

    I have a very similar family history although the cancer arrived a bit later, in their 50's on my mother's side. All three women, my Mom and two sisters, and 3 maternal cousins all had cancer in their 50's and tested negative for BRCA.

    Because of my family history I was heavily screened starting in my 30's. But at age 53 was diagnosed with IDC, grade 3, HER2+ agressive breast cancer even though because of screening it was found during Stage 1.

    I underwent a bi-lateral mastectomy and chemotherapy and herceptin for a year. Shortly after I was diagnosed my genetic counselor suggested doing a bigger gene panel. I think they screened for 41 mutations linked to various cancers. I had what is known as an NBN mutation. We then screened my deceased Aunt's DNA and she had it to. My mother and everyone had not stored DNA after they died.

    My sister and my cousin have both undergone prophelactic mastectomies this past year because they both tested positive for that mutation. Several of one of my cousins' daughters, (my cousin died of colon cancer in her 50's) were screened and neither of them showed this mutation.

    I would suggest first meeting with a genetisist and seeing if they could do a larger panel. Obviously you are right, I think there are mutations they are unaware of and that may be the case with your family. I think either way it is still good to know.

    If I were you I would likely do the same, have my children and breast feed and then do a PBM and hopefully put that behind me. Some of the mutations, like BRCA, mean you are predisposed to several kinds of cancer. For example I need to screen for colon cancer more frequently now and my sons, if they carry the mutation will have to be screened at an earlier age for colon and prostate. So, it is helpful to know if you have any of the known mutations.

    Wishing you the best and so sorry for all the loss you have had from this disease. Cancer really sucks.


    Julieho

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