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Rare cancer: ovarian clear cell carcinoma

Gynecologic Cancers | Last Active: Jun 18, 2023 | Replies (122)

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@azovercomer

@theblondecherie Dr. Magrina, I believe was considering retiring. I thought he was staying on in some capacity, including research, so I'm sad to hear he's no longer doing surgery and that he may not be back. I would be comfortable with Dr. Butler performing surgery. While not cancer surgery, she did perform my surgery for the IP port placement prior to treatment. Dr. Butler has been with Mayo for quite sometime. Prior to being in Arizona, she was with them in Minnesota. I believe she teaches at their Mayo medical school and is very knowledgeable with gynecological cancers. She is currently heading up several trials of the gynecological cancer clinical trials in Arizona.

In regards to clear cell and the potential for chemotherapy resistance: Not having chemo wasn't something I considered and I asked to be treated as aggressively as possible. Armed with the potential recurrence rates, for me, it was about not having "what-ifs" down the road. I know women of all stages that were not resistant and unfortunately some that were resistant including those with stage 1.
I tried to tell myself every day that my body would not resist the treatment.

I did lose my hair right at 2 weeks after my first treatment. I chose to wear a wig to work and when I was out. I was given a prescription for a "prosthesis" and my insurance paid for it. I was fitted by a cosmetologist who helped me make a selection. Having long hair my whole life, losing it wasn't as hard as I thought it would be although I'll admit to shedding a tear the day I had to have it cut. About 10 weeks after treatment ended I had enough hair that I was comfortable going out without the wig.

Hugs, Stacy

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Replies to "@theblondecherie Dr. Magrina, I believe was considering retiring. I thought he was staying on in some..."

Hi Stacy, Thank you so much for your response. That is too bad about Dr. Magrina, but I have scheduled an appointment with Dr. Butler. I appreciate your candor regarding chemo. You and everyone else in this group are so incredibly brave for going through it and losing your hair. If I do end up going through chemo I plan to get fitted for a wig as well to wear to work and to go out. Thank you for sharing your story and experience. It is so incredibly helpful for me who is in the beginning stages of this journey. Wishing you a lovely weekend. 🙂