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Silverpullet
Silverpullet Member Posts: 28
edited August 2016 in Genetic Testing

I am 42 and have an extensive maternal family history of Breast and Reproductive cancers in my family. 4 of my moms sisters, 2 great aunts, grandmother, great grandmother and great great grandmother. I had a cyst on my ovary about 8-9 years ago that they discovered while I was having gall bladder surgery. They removed the cyst the following month, as well as the Fallopian tube. I had asked my OB/GYN at the time for genetic testing to check for the BRCA gene. They drew blood and later she followed up and said it was negative. I had had a baseline mammogram at the time (I was 35). Have not had another one since, Didnt enjoy it the first time of course. Fast forward to this year- My aunt was pushing me to get a complete genetic panel done. So I did. Turns out my doctor at the time never did the testing, because I am BRCA2 positive. My primary doctor had sent me to the oncologist who is the one who sent my blood in to the genetics lab of which i had gotten the results yesterday. The oncologist did a breast exam, and scheduled me for a Breast MRI ASAP. Then a follow up with him. He strongly recommends I have my last ovary taken out without fail, and to do a prophylactic double mastectomy. After we get the results of my MRI, hopefully everything is fine, I will meet with a new OB/GYN the oncologist recommends and a breast surgeon to answer questions I might have. He did say that he does have patients who opt to not get the mastectomy, but that they have to go to MRI's or Mammograms every 6 months without fail for screening and in the long run, this would be cheaper. I am freaked out about all the possible things that the old doctor lied to me about (her license was revoked and no longer practices) like was my cyst really benign? I would have done so much differently had I known the truth. I already suffer with anxiety, and this is not helping. I feel like everything is going super fast, but also too slow. I do not want surgery on me again, but want the ovary out. Wondering about getting everything removed. Scared to get a mastectomy,as in my head it seems a bit like over kill, but I understand why. I feel as though I will likely decide to go that route, as I think the constant worrying about if or when I will get cancer if I do not remove them will drive me insane. Also worried about cost and recovery and my general appearance. This has not been a good year for me this year at all. My husband is just worried about me getting surgery again, but not about my appearance he says. I know I will get most of my questions answered next month, but I am scared to death right now.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2016

    If I had erroneously been given a clean bill of health (including being lied to about genetic tests having been administered at all, much less the results) by a doctor who was later stripped of his or her license, and despite that was still alive and well, I would first thank my lucky stars I’m still around; and then I would also jump at the chance to do everything necessary and possible to protect my health. With a confirmed BRCA-2 mutation, strong family history of breast cancer, a previous ovarian cyst necessitating a unilateral salpingectomy/oophorectomy, and being relatively quite young (42), I would follow the advice to remove that other ovary AND get a prophylactic bmx. Because it’s prophylactic rather than therapeutic, your lymph nodes wouldn’t be biopsied, so no threat of lymphedema; and because your remaining ovary would be removed to prevent, not treat cancer, you could also take supplemental estrogen to protect your heart, eyes, joints and bones. (It’s not the same thing as replacing estrogen after a natural menopause, and doesn’t carry the same risks).

    IMHO, that it’s “cheaper in the long run” is irrelevant. Eliminating that "sword of Damocles" that would otherwise be hanging over your head every 6 months is paramount. Those of us who’ve had breast cancer can tell you what an emotional roller-coaster it is every time we have to go for follow-up mammograms and exams. If you can avoid having to take that ride over & over, then that’s a bonus beyond value. Mind you, if you didn’t have that mutation and history, then a prophy bmx (absent a diagnosis of cancer in one breast) would be extreme. It’s still major surgery, and you would also need to consider whether or not to get reconstruction. But if it ensures you’d never get breast cancer (when you otherwise would have been at very high risk for the most aggressive forms of it), then the answer should be obvious.

    Good luck, quick healing, and a long normal life.

  • Silverpullet
    Silverpullet Member Posts: 28
    edited June 2016

    Thank you for your reply. Everyone tells me to "obviously" get a second opinion. Which I feel the next breast doctor and the next OB/GYN I see next month will be just that. I am also going to see my primary care doctor hopefully can get in next week to and ask her opinion,even though she is not a oncologist or even specifically a OB/GYN. This has been a rough mental ride for me. My best friend from high school just finished chemo radiation for hers, had a double mastectomy now. Her chances are hopeful, but she said the mastectomy was horrific mentally and physically on her. I am just praying everything is clear right now (cancer free) so I can make some choices. I still have not had a pelvic exam so plan to do that ASAP

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2016

    I'm so sorry about your experience with the previous inept doctor. Please take time to think everything through. Luckily you are not in an "emergency" situation and you have time to make some educated choices and get multiple opinions. A mastectomy is nothing like a "boob job" and you will lose feeling so it isn't a decision to be taken lightly. Same goes for throwing yourself into surgical menopause. That being said, I had to have both done (due to breast cancer and an ovarian cancer scare - plus I have a BRCA2 genetic mutation of unknown signifigance) and I am doing just fine. Just wanted to point out that you have some time to think this through and make the best decision for you. :)

  • Molly50
    Molly50 Member Posts: 3,773
    edited June 2016

    Ihave a genetic mutation that carries a smaller risk than yours. Since I had a sister who had breast cancer in her 20's and two maternal aunts plus a maternal uncle with breast cancer I am having my remaining breast removed next month. My sister also has the same mutation. She works at a major cancer center and they recommend a prophylactic bilateral mastectomy which she is doing next month. If I had your family history and brca2 gene I personally would not waste time getting a BMX. Yes surgery and reconstruction is not fun but breast cancer is not fully cured once you have it. You always like with the risk of it returning. I assume you will have annual MRI after surgery?

  • Silverpullet
    Silverpullet Member Posts: 28
    edited June 2016

    I was told that if I had both breasts removed, that there would be no need to get mammograms or such later on. Apparently that is not 100% true from all the reading I have done? I certainly want to give myself the best chances possible. I have always had an extreme fear of death in general and cancer scares me even worse.


  • JJ62
    JJ62 Member Posts: 65
    edited August 2016

    You are right Silver, a mastectomy is not 100%, you will always have to watch- incision, chest wall etc. Not a decision to be taken lightly.

    Have you checked out Facing Our Risk Empowered?

    FORCE: Facing Our Risk of Cancer Empowered

    Best wishes.

    Jody

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