Decisions for treatment..

manna1qd Member Posts: 46
edited March 2014 in Breast Cancer #1
I had a unilateral mastectomy in 2001. Never thought about a double or a lumpectomy. My plastic surgeon did a beautiful job with a tram flap. So, I looked great but had a loss of sensation. That effected my sexual response significantly.

I remember hearing back then that Europeans got lumpectomies. The didn't automatically have the mastectomy option because statistically, they were yielding the same results. I know my decision for mastectomy as well as for a total hysterectomy nine months later, were immediately made out of fear and panic minutes after getting negative results and I never looked back...until I was a few years out.

I really wasn't well informed by the doctors or myself as to how those surgeries would change my life. I put myself through menopause ten years early and a few months after chemo. I don't think my poor brain (or my husband :) )ever recovered. There was a thickening of the uterine lining with tamoxifen but not anything wrong with my ovaries. My fear was ovarian cancer.

My oncologist never mentioned sterility as an effect of chemo. I didn't know my ovaries shut down until I asked a question about the risk of preganancy. She said the point was moot because my ovaries would shut down. How about being told I could freeze my eggs if I wanted to have more children? Never heard that one until later.

I don't have regrets overall, and hindsight is 20/20. I just wondered what others' experiences have been with the decision making process. Informed decisions are always best. At least then you know what you are getting into or out of. In my case, I was so darn scared, I just wanted the facts I had to know without the details. Maybe my doctors were sensetive to that but I don't think so.

My first oncologist had me in for a half hour, corrected my surgeon's statistics to inform me my chances weren't as good as I thought, wrote everything down that she was telling me on her chart and then told me I wouldn't have time to ask questions, she had another patient! When I asked her if I would be able to take our planned trip to disney world she told me this wasn't about disney world! Just needed to get that oncologist experience off my chest! Doesn't she know when you have kids it's always about disney world? :) Like I said, she was my first oncologist.

This site has helped me tremendously. Just getting things out that have been pent up inside of me with nowhere to go for a long time. Thanks for listening.


  • 3cbrca
    3cbrca Member Posts: 206
    I am so sorry that you had to find things out hard way or not at all. Health care should not be that way. I have had such positive experiences with all my providers. (Except the internist who never told me it showed up on a scan when it was still a Stage I and I wasn't diagnosed until stage IIIC. Needless to say I changed providers and now get all of my care at the University Cancer Center where they have staff who will see you or talk to you when the doctor isn't available. Health care delivery especially something as traumatic as cancer, should not be this way, but I know from working with the health care system in helping someone else that it is. I am lucky - I have worked with cancer researchers for years and while I knew nothing about breast cancer when this all started, one of the leading surgeons had an office across the hall from me - I am also "blessed" with being kind of bossy in some situations.
    I just came from having a massage and the therapist who did it was also a nurse. We just had the discussion about how health care has changed in the last 30 years. Your situation is a primary example of how the nurturing and healing aspects are slipping away. Talking with the patient and providing information before they ask for it is part of good care - unfortunately it is not always the case.

    This site has also helped me tremendously. It keeps me "in the now" and helps me so much when I know that I am not the only one who has gone through these things - that really helps me let go of a lot of frustrations and worries. It also helps me laugh which is sooooo important.
  • survivor51
    survivor51 Member Posts: 276
    Manna, It is always good to get if out there and off the mind. I had a double and had first thought of a lumectomy but since there were other questionable places decided to have a mastectomy. When they did an MRI, something showed up on the right side but they were sure it wasn't cancer. After talking to several people about reconstruction, they said it was easier to match at the same time so I made the decission to have both. After I saw myself, I cried and cried thinking what was I thinking. When the results came back the surgeon stated that the cancer was in both breast and in several places. Turns out that it was a great decission. I personally know 2 people with a lumpectomy and both are not pleased. Also, they wonder when the next one will come. Nothing is for sure but right now it was a good decission. I don't have feeling and yes still have difficulty with sexual responses. It is like my lower parts are connected with the top and so for now, I'm trying slowly to help my hubby of 30 years learn a new body with me. It will be a year in March and I get frustrated but luckily my hubby is great. I still hate all this but am glad to be alive. Both my parents died of cancer and I want to be here a long time. I take a day at a time. I live in Ga. Angela