Am I the only one who was refused a BMX?

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Mavericksmom
Mavericksmom Member Posts: 635
edited September 2019 in Surgery - Before, During, and After

Maybe it is because I woke up at 3:30 in the morning and can't fall back to sleep, but I still can't come to grips with why I seem to be the only woman with breast cancer who was denied a BMX.

I had breast cancer twice. I knew my only option was mastectomy this time, but was unprepared for being denied a BMX by my doctors! Reason: they don't remove a healthy breast unless the woman is BRCA positive! I am not. My mother, two of my three sisters and at least one cousin on my mother's side have had breast cancer. Not good enough.

I feel as if I am the only one who was denied the choice due to that reason, on this board. Anyone else have a doctor who refused a mastectomy because they don't believe in removing a healthy breast?

Moderators, is this a new philosophy? Old philosophy?

Now they want me to have yearly mammograms to which I said NO! I can't ever go through that again. I don't really want to ever go back for follow up appointments, but I will. I have an appointment with my MO in November. I need to keep follow ups with her if I stay on the Letrozole. Of course, I really see little point in taking that but I won't stop it without seeing her first. I am pretty sure I will cancel my appointment with my BS in February. Don't see the point in seeing him. His last words to me this summer were "you are free of cancer!" Really? How does he know? If true, why bother with Letrozole, follow ups etc? Because it isn't 100% true! He doesn't really know for sure. Why do doctors say that?

Just looked at the clock, it is 5:14. My alarm rings at 5:30. Great, not trying to get back to sleep now! Another day going through the motions!

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  • Belinda977
    Belinda977 Member Posts: 381
    edited September 2019

    How frustrating. I had a BMX for DCIS in right after IDC in my left seven years ago. I just could not take the worry and it's a good thing I did as there was an additional area of DCIS not seen on the mammogram.

    Is it the surgeon or the insurance saying no?

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  • DATNY
    DATNY Member Posts: 358
    edited September 2019

    It does sound odd with your personal and family history. I did not have a problem to get BMX when I requested it. Why won't you change the surgeon and go for a second opinion?

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  • Gudrun
    Gudrun Member Posts: 140
    edited September 2019

    Mavericksmom, I had the same problem in 2013 at age 55. (N.B. the sig below is not mine.)

    I had an ILC, stage IIa right breast, and begged for a BMX and was denied ablation of the healthy breast (here in Germany). One doctor in the hospital's team even got nasty and angry at me for not consenting. I asked for the senior physician to talk to, told him I was ready to go and find another hospital ... He left the room, came back a little moment later to tell me they were willing to do the additional surgery if I agreed to the diagnosis "anxiety disorder: carcinophobia". Of course I did, and never have regretted.

    Hope my experience might help somebody. G

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited September 2019

    Thank you Gudrun! Makes me feel a little better!

    DATNY, too late. I was diagnosed last December right at the holidays. I was in shock after 15 1/2 years cancer free. I had surgery in January. I will always regret not going elsewhere for second opinion but I won’t have healthy breast removed now. Need to wait to get cancer in that breast.

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  • el7277
    el7277 Member Posts: 64
    edited September 2019

    I feel badly for you. My surgeon told me from jump street that it was my decision. She said what ever I decided was what we would do and after neoadjuvant care I still wanted BMX, she was nothing but supportive and put me in touch with an amazing plastic surgeon who does not charge bc patients for anything that insurance won't cover. I would encourage you to find a doctor who will listen and work with you.

    Good luck.

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  • helenlouise
    helenlouise Member Posts: 420
    edited September 2019

    My surgeon said same. We don’t remove the healthy breast. There is no survival benefit gained by having a BMX when only a UMX is required unless you are BRCA positive. Reason being that if you get an infection in the healthy side post op this could unnecessarily delay further treatment. I was warned that I may have to argue my case. So I did. I explained I was prepared to take that risk and I wanted both removed. It is my body and the surgeon works for me.

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited September 2019

    helenlouise I notice BMX didn’t stop you from getting a recurrence.

    At least you could argue your way to get what you wanted. I didn’t have that choice. Also, I had huge healing issues with my removed breast from previously radiated skin (DIEP) reconstruction, but no further treatment other than Letrozole so the reason they gave you was ridiculous in my opinion.

    I will NEVER allow radiation again should I get a new BC or recurrence.

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  • helenlouise
    helenlouise Member Posts: 420
    edited September 2019

    Hi maverick, yes sadly BMX didn’t stop recurrence.. I very much didn’t want mastectomy at all because I thought I would make stage four, which I have. To that end I insisted on a full round of scans prior. Not standard but my MO ordered it up. The scans were clear and here I am. Can’t take it back so have to move on. At least I am currently NED so that’s a bonus. As much as I miss my breasts I am very glad I got BMX and so sorry you didn’t because that was what you wanted. Yes I am with you.. no more radiation to my effected side. I had radiation to that side once in 2013 and again last year. So after an excisional biopsy this year it took 16 weeks for new skin to appear. At one point I was advised it may never heal but it eventually did. Thank goodness. Yes what to do with recurrence is an issue. My advice would be to take time and consider your options carefully.

    Take care & best wishes

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  • WC3
    WC3 Member Posts: 1,540
    edited September 2019

    My BS told me the stats and then left the choice entirely up to me and I was so relieved that I didn't have to fight for a BMX. But I had circumstances that kind of argued for it. My breasts were dense, my cancer had been missed the first time, family history of contralateral breast cancer, and I ended up having to go with implants. I think it would have been impossible to get symmetry with a UMX due to my natural breast shape.

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