Finished A/C and Now . . . .

OregonSeaStar
OregonSeaStar Member Posts: 41
edited March 2014 in Breast Cancer #1
Hi Everyone, Last week I had my 4th and final A/C infusion; I seem to have survived it! I'm 55 pounds lighter (since mastectomy), still bald and eyebrowless, but HEY! I'll be starting Aromasin in a few weeks (I'm 57, way past menopause, and ovaries were removed 10 years ago).

Months ago I had genetic testing done at the request of my onc. The test came back NEGATIVE for the BRCA1 and BRCA2 mutations. I was elated, but to say that my oncologist was shocked/STUNNED is an understatement. He feels that there is no way that I don't have some sort of mutation - grandmother w/breast cancer; mother died of melanoma and ovarian cancer; father died of colon cancer; my older daughter died of ovarian cancer; and now, of course, my own breast cancer. Added to that is my heritage is Ashenazie Jewish descent. All of these taken together points to real genetic problems (that don't show up on the tests!).

My oncologist feels emphatically that my best chance at long-term survival is to have a second mastectomy as soon as I've recovered from chemo. He believes that its not a matter of IF I'll get a reoccurrance in this breast, but WHEN. Needless to say, this has shocked me . . .. . . . already at this point I don't know the woman in the mirror . . . . .

Has anyone else out there heard this news? How have you dealt with it? I know that reconstruction and implants are options, but I just don't want to do either at all. Too much surgery, too much pain, too much heartache. I think I just need to find a way to accept what is, to reformulate that picture in my head of who I was, what I looked like, to find a way to feel like a sensual/sexual feminine soul again. Any help/advice/encouragement?

-shelley

Comments

  • LesleyH
    LesleyH Member Posts: 370
    #2
    Hi Shelley. Congratulations on making it through. It sounds as though you are being well cared for. Even if genetic testing is not sophisticated enough yet, it's clear that your doctor is right.

    My art therapist had a mastectomy and no reconstruction and no prosthesis. She finds that the best option for her. I didn't even notice at first until she pointed it out. She always wears pretty little tops with jackets.

    You have been changed forever. I'd say do whatever feels right for you. Your friends will still love you and everyone just gets used to seeing you that way - and even you get used to seeing you that way.

    My hair went from blonde to gray. I aged overnight from my treatment. No one recognized me, but now everyone has just got used to the way I look now.

    Hugs and best wishes.

    Lesley
  • cabbott
    cabbott Member Posts: 1,039 Member
    #3
    Watchful waiting with an experienced breast surgeon doing regular breast exams and of course your regular mammograms are another way to go. And don't forget that every cell of your body is female no matter how many mastectomies you have and whether you choose reconstruction or not. Genetic research is still in its infancy and since BRCA1+2 only account for 10% of all breast cancers, you know they don't know it all. But that doesn't mean you have to have a mastectomy. It's your body, your life, and your decision. There are advantages and disadvantages both ways. Take your time and weigh the options. Talk to your family and other survivors. And keep a sense of humor. If you have a second mastectomy, you can choose to be any size you want. (And if you choose protheses, you can change what size as you want!) Personally, I find that the silicone prothesis looks and feels very normal. The doctor thinks I'm strange because I didn't (and still don't) want reconstruction. But you know, it's not his choice, it's mine. And what you do is your choice.
  • prayerangel
    prayerangel Member Posts: 147
    #4
    There are so many women out there, that despite NOT having B/C themselves, but it is in their family genes, so they decided to have bilateral (2) mastectomies, just so the cancer never has a chance to grow. They did it as a precaution. I don't think I could've been that brave. If you don't want the pain and discomfort of having implants, just go with what you feel for now. You can always do it at a later time, and strap on a pretty bra with a silicone prosthesis in it, and look and feel natural with that.
    As far as having a 2nd mastectomy, with your family background, I must say, that I would consider it seriously. I am living proof that waiting, or not thinking it would happen, was not practical.
    Best of luck to you.
    Prayerangel
  • 24242
    24242 Member Posts: 1,398 Member
    #5
    I am not surprised at the absence of genetic link. It has been said for years that less than 10% of all cancer can be linked genetically. I think that can give us all a better understanding of the risks we all have, not just a few.
    When it came to fighting breast cancer at a young age the risk factors only go up for cancers after having one form. I think all we can do is look at the risk factors left and minimize them the best we can and sometimes getting rid of a second breast can help.
    I am with you, surgery and pain seem to go hand in hand for some of us so I minimized the amount I was having by not doing the reconstructive thing. Though I am young at 46 now I have had no regrets and think I have saved myself some discomforts in the end.
    I think we are looking for links sometimes that just are not there. Is that because we need something to blame this on rather than resigning ourselves to the task at hand and that is treating our disease. Some of the hardest days I have spent were doing the chemo and radiation thing but there truly aren't many other hopes for prolonging our lives other than that crash and burn.
    Be good to yourself always,
    Tara

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