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trshtwns01 [userpic]
Prophylactic measures
by trshtwns01 (trshtwns01)
at October 26th, 2006 (03:33 pm)

I posted back in June, after I had been diagnosed as BRCA2+ and we had verified my mother had the same mutation. Because of the strong family history, some of which was before age 50, and the confirmed mutation, the oncologist I was seeing recommended I have a prophylactic mastectomy and immediate reconstruction. He said we could monitor every 6 months, but that it wouldn't change my risk for getting breast cancer. He also wanted me to see my gyn to check on ovarian cancer. Since we are done with children, I'm 36 and have already lost one ovary to cysts and had pre-cancer in my cervix, he recommended a full hysterectomy.

These recommendations seemed so drastic! I went to a second oncologist to get another opinion. He agreed with both doctors.

Third time is the charm (and denial is a strong driver) so I hooked up with a breast cancer oncologist at UT Southwestern who specializes in high risk cases. He agreed with the assessments and put together a comprehensive team. Trusting UT Southwestern's reputation as I do, and the quality of these doctors, I decided to go with them on my care. The plastic surgeon believes I am a candidate for DIEP reconstruction, so that is where we are headed, but because of the length of that surgery (10-15 hours), he wanted the hysterectomy to happen seperately and for me to be healed ahead of time.

So, on October 12, I had a full hysterectomy here in Dallas. 5 days in the hospital, and things went well. I'm at home resting now, and seem to get better every day. I can tell when I have overdone it and need to slow down, but I can do small trips like taking the kids to school, picking them up, and quick runs to the drug store for small items. I stopped with pain killers last week. The doctor releases me to go back to work November 27th.

On December 13, I go back on medical leave as that is the date for my mastectomy and reconstruction. For some reason, that surgery scares me more than the hysterectomy (which I probably would have had to have done one day anyway). It's such a long surgery, longer hospital stay, and more difficult recovery (with surgery on both chest and abdomen).

I know in my heart that this is the right thing. It significantly reduces my chances for breast cancer and completely removes my risk for ovarian and other reproductive cancers. It doesn't make it any less scary. Thankfully, I have a great support network around here that have been helping out and keeping me fed *laugh*

Has anyone else taken measures like this to mitigate their cancer risks? So many people seem surprised when I tell them this is our treatment plan, but our insurance company pays for it fully and the doctors say it isn't that uncommon. I've just never talked to someone who has been there.

Hope everyone is well, and remaining strong.


Posted by: boring (karinny)
Posted at: October 26th, 2006 09:22 pm (UTC)

My aunt had a prophylactic double mastectomy. If you want, I can ask her if I can put you in touch with her. She's been very supportive of me (we have a very strong family history of BRCA1, with several young diagnoses)


Posted by: roadrunnerdm (roadrunnerdm)
Posted at: October 27th, 2006 10:32 pm (UTC)

I will complete my maintenance chemo for ovarian cancer in mid-January. I plan to pursue a prophylatic mastectomy a few months later, probably in late March or early April. I'm training now to run my 4th marathon in early March, so I want to get that completed before having surgery again. I'm not looking foward to the surgery, but hey...maybe the plastic surgeon can even give me a better pair than God did -- they'll certainly be safer.

When my sister had her breast cancer diagnosis, she opted to have an oopherectomy at the same time as her mastectomy. In her case however, they just removed the ovaries by laporoscopy and did not remove her uterus.

It sounds like you're recovering well from your hysterectomy. Don't overdue it, but I think it did help speed my recovery to get out and try to walk at least a little every day. I actually found that I felt better and had less pain on those day when I got up and went for a walk in the morning than on days when I just sat back and took it easy, but each of us has to listen to our bodies.

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