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← Return to Rare cancer: ovarian clear cell carcinoma
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Rare cancer: ovarian clear cell carcinoma
Gynecologic Cancers | Last Active: Sep 5, 2024 | Replies (125)Comment receiving replies
@azovercomer, @starko, @odette
Stacy thank you so much for your reply. I am so happy to hear that you are doing well. 🙂 Does anyone know why Dr. Javier Magrina left the Mayo Clinic? I asked to schedule an appointment with him for surgery, and I was told they do not know if/when he is coming back. Does anyone have contact information for him? This is such a bummer as this is who I was really hoping to perform my surgery. Stacy, they referred me to Dr. Kristina Butler instead who you mentioned was on your oncology team. Would you feel comfortable with her for surgery? To all three of you I would love to hear your general thoughts on chemo therapy as I have read to much research stating clear cell ovarian cancer is shown to be resistant to platinum-based chemotherapy and adjuvant chemotherapy. I know this is a very sensitive question, so if you do not feel comfortable answering I completely understand. But my question is did you lose your hair during chemo? Thank you SO much for your candor, support and guidance. I sincerely appreciate. Sending lots of love and light to all of you. 🙂
Replies to "@azovercomer, @starko, @odette Stacy thank you so much for your reply. I am so happy to..."
@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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I would suggest you look at the NCCN (National Comprehensive Cancer Network) guidelines for ovarian cancer. There is a patient guidelines booklet online. These are the standards for treatment used at all of the cancer centers in the U.S. While OCCC research shows resistance to platinum-based chemo, it is relative. Until you know your staging, you will not know how to proceed. Have you been provided with this information? Unless you are stage 1A and observation is an option, chemo will be recommended. Everyone responds differently. If chemo is recommended for you, your team will prepare you in advance. Hair loss is typical, but some women are now using cold caps which may or may not be covered by insurance. The effectiveness varies.
Glad to hear from you. I've been thinking about you.