New Diagnosed-No family history-double mastectomy options

Jk1979
Jk1979 Member Posts: 5
edited April 2017 in Just Diagnosed

Hi,

I was hoping someone out there may have some answers for me. I was diagnosed with Grade 3 invasive mammary carcinoma on 3/17. I'm only 37 years old and have no family history of breast cancer aside from my mothers grandmother which is pretty far down the line. It has gone to my lymph nodes as well. I see an oncologist tomorrow and Friday as well as the genetic counselor tomorrow.

My question is, even if I test negative for this gene, can I still have a double mastectomy, covered by insurance? My treatment is going about to be 9 months to a year according to the surgeon and clearly I don't want to do this again in 10 years.

Anyone out there been in this situation? I would hope that they would take my age into consideration.


Please let me know.

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  • vjenelle
    vjenelle Member Posts: 9
    edited March 2017

    Hi Jk1979,

    I was just diagnosed with invasive ductal carcinoma about 3 weeks ago. My case is similar to yours. I'm 40 years old & I have two distant cousins that passed away in 2015 from breast cancer. No close family members like grandmothers, aunts, mom or sisters though. Not even first cousins. Since I tested negative for the BRCA gene, I asked the surgeon about removing both breasts. He said he would remove the cancerous breast and that I could get the other breast remover at a later date. I get the impression that he is just putting me off.

    So I'm taking the advice of the folks around me & getting a second opinion. The only downside to that is that I will be delaying the treatment plan that is already set in place. It scares me because at least 3 lymph nodes are already infected. The medical oncologist says that I'm in the beginning of Stage III.

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  • Jk1979
    Jk1979 Member Posts: 5
    edited March 2017

    Thank you for your reply.

    I am doing the same thing. I'm going to where I was diagnosed for the initial oncology appointment and then I'm going to Sloan Kettering on Friday. It's just the weeks of so many questions, not many answers that is driving me crazy.

    If I get any firm answers from Sloan (since they are the best) I will send you feedback on Friday evening. My appointment there isn't until 4:40pm.

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  • Robin1234
    Robin1234 Member Posts: 45
    edited March 2017

    I had a bilateral mastectomy with reconstruction at the same time. I only had bc in my left breast and my insurance paid for it but wouldn't pay for the genetic testing but they're following appeal for that now.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited April 2017

    I only had bc in right breast with what some docs call negligible family history (great aunt, great grandmother, great great grandmother) and had double mastectomy with immediate reconstruction. I'm a 43 years young wife to my husband, mom to 1 very active 12 year old son, 1 married son and a beautiful 17 month old granddaughter. I opted for natural tissue reconstruction (DIEP flap) vs implants. All covered by insurance. Insurance is required to cover mastectomy, reconstruction and surgery to other breast so that they match. A lot comes down to your preference and what your dr is willing to do. And different docs are willing to do different things based on their treatment philosophies. I tend to prefer the more aggressive approach docs. They would be the ones to say double mastectomy ok if thats what you want.

    On genetic testing, due to the diagnosis of bc ER+/PR+ my insurance covered genetic testing even though family history was 'negligible' in more recent generations. Found 1 genetic variant (called BRIP1) out of the ones tested that has a defined increased risk for ovarian cancer and is suspected to have a role in bc when brca1&2 are negative. That means an oopherectomy (ovary removal) is recommended. And the ovaries are what makes 80% of the hormones that are feeding my bc. The testing can give you the next step answers and help you and your family better understand who else needs to be tested or at least vigilant. Keep in mind as well that in older generations, they just didn't talk about things like cancer or breasts or ovaries. So a lot of family history gets covered up. When My mom talked to my great aunt about my diagnosis was when it was uncovered about the great and great great grandmothers. But her brother (my grandfather) had absolutely no knowledge of this -in that generation you would maybe tell a female relative but never have a discussion about female parts with your male relatives. Genetic testing doesn't lie, forget or cover anything up. Give your insurance a call and see what they have to say on testing coverage based solely on your bc diagnosis. I also think the key to coverage is to have testing done before the double mastectomy-if the breasts are gone, no longer as strong a reasonfor testing.

    Feel free to PM me if you have questions about the natural tissue reconstruction vs implants. Good luck and keep us posted!

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