Rare cancer: ovarian clear cell carcinoma

Posted by odette @odette, Jul 18, 2018

Connect with others with ovarian clear cell carcinoma

@odette one last question that I forgot to mention in my previous post. How do I join the Inspire Group? I searched for it under the Mayo Clinic groups and did not find it. Thanks so much! 🙂

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@theblondecherie

@odette one last question that I forgot to mention in my previous post. How do I join the Inspire Group? I searched for it under the Mayo Clinic groups and did not find it. Thanks so much! 🙂

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http://www.inspire.com managed by OCRA

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@theblondecherie

@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. 🙂

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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.

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@theblondecherie

@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. 🙂

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@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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@odette

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.

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Hi Odette,
Thank you so much for this information. I will take a look at the NCCN and join Inspire. I am getting my staging surgery June 16th. My mass was discovered during a routine laparoscopy to remove fibroids/cysts, so I have to wait three weeks to get my second surgery. The surgeon told me it looked like it was confined to my left ovary and hopefully stage 1, but she is not an oncologist, so I won't know my actual stage until the 16th. I have heard about the cold caps and also heard their effectiveness varies. Thank you so much for all of this info. You are a wealth of knowledge. Have a lovely weekend. 🙂

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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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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. 🙂

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@theblondecherie

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. 🙂

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@theblondecherie, don't forget that Mayo Clinic doctors work together and share their knowledge too. You will be in good hands with Dr. Butler as well as benefit from an entire team whose focus is you.

@stparker54, how are you doing post surgery?

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@colleenyoung

@theblondecherie, don't forget that Mayo Clinic doctors work together and share their knowledge too. You will be in good hands with Dr. Butler as well as benefit from an entire team whose focus is you.

@stparker54, how are you doing post surgery?

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@stparker54 I am recovered from my first surgery, and get my debulking/hysterectomy in the next few weeks. Thank you so much for asking. I hope you are doing well. @colleenyoung thank you for your guidance. I am certain I will be in excellent hands. Hope you both had a lovely weekend. xoxo Stacie 🙂

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@theblondecherie

Hi Odette,
Thank you so much for this information. I will take a look at the NCCN and join Inspire. I am getting my staging surgery June 16th. My mass was discovered during a routine laparoscopy to remove fibroids/cysts, so I have to wait three weeks to get my second surgery. The surgeon told me it looked like it was confined to my left ovary and hopefully stage 1, but she is not an oncologist, so I won't know my actual stage until the 16th. I have heard about the cold caps and also heard their effectiveness varies. Thank you so much for all of this info. You are a wealth of knowledge. Have a lovely weekend. 🙂

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Just checking in and hoping you are doing okay. I realize you are preparing for your surgery on June 16th and I am hoping you have support from a partner/friend during this time. Take care.

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@theblondecherie

@odette one last question that I forgot to mention in my previous post. How do I join the Inspire Group? I searched for it under the Mayo Clinic groups and did not find it. Thanks so much! 🙂

Jump to this post

Not having heard from you in awhile, I thought I would just check in hoping to find you doing well. I haven't seen you on Inspire either. In these times of uncertainty, everything seems so much more complicated.

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