Rare cancer: ovarian clear cell carcinoma

Posted by odette @odette, Jul 18, 2018

Connect with others with ovarian clear cell carcinoma

Interested in more discussions like this? Go to the Gynecologic Cancers group.

Sending good thoughts to you @granna I hope that the tramadol helps you get ahead of the bone pain. I experienced some bone pain in my knees down to my ankles during days 3-5 after chemo, a warm towel/blanket helped me tremendously.

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Hi, I am glad I found this discussion and will also look at the Inspire site. I'm 44 and live in Portland, OR. I noticed lumps in my lower abdomen in the summer and went to my doctor in early September. Was quickly sent to a GYN oncologist and had debulking surgery on Sept 30th. Both of my ovaries were the size of cantaloups, and the growth was found in the uterus, omentum and there was a small tumor on the bladder. They can't be completely sure if it originated in the ovaries or uterus, but we refer to it as ovarian cancer. I feel like I am unusual even for clear cell carcinoma because the cancer was found in both ovaries (rare) and I don't have any history of endometriosis, which there seems to be a high prevalence it with CCC. I started taxol/carbo chemotherapy and just had my second round. Side effects are mostly fatigue and muscle/bone pain. Second cycle seems to have less side effects, perhaps because I was still recovering from the surgery for the first cycle. Dealing with all of this during COVID has been anxiety provoking, but I'm hanging in there. Mediation helps. I'm very interested in the research from Asia that has been mentioned in this group, as well as any info on trials. Thanks.

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Hello Heather. I'm so sorry that you have gone through this experience, but I'm glad you found us. We are a small group because OCCC is rare as you mentioned. I have no expertise in this matter, just personal experience and the extensive research I have done. I have never encountered anyone with bilateral CCOC. Most women have/ had endometriosis with an endometrioma being the origin of the lesion. I believe that there is a clear cell uterine cancer which is an endometrial cancer, but I don't really know anything about it. Did you receive a second opinion? What stage are you?
Taxol/carbo is the typical regimen given and everyone responds differently. I found exercise, meditation, yoga helpful during this process. Healthy nutrition.
In terms of research, much of it comes out of Asia, particularly Japan as CCOC is far more prevalent in that population. I would recommend the NCCN (USA), ESMO (Europe), Canada in addition.
There is a group of women on INSPIRE with CCOC that are very supportive. I'm on several sites myself. The Mayo Clinic is an outstanding medical institution and I always follow their research as well.
Sorry I can't provide you with any additional information, but do feel free to write any time.

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@odette

Hello Heather. I'm so sorry that you have gone through this experience, but I'm glad you found us. We are a small group because OCCC is rare as you mentioned. I have no expertise in this matter, just personal experience and the extensive research I have done. I have never encountered anyone with bilateral CCOC. Most women have/ had endometriosis with an endometrioma being the origin of the lesion. I believe that there is a clear cell uterine cancer which is an endometrial cancer, but I don't really know anything about it. Did you receive a second opinion? What stage are you?
Taxol/carbo is the typical regimen given and everyone responds differently. I found exercise, meditation, yoga helpful during this process. Healthy nutrition.
In terms of research, much of it comes out of Asia, particularly Japan as CCOC is far more prevalent in that population. I would recommend the NCCN (USA), ESMO (Europe), Canada in addition.
There is a group of women on INSPIRE with CCOC that are very supportive. I'm on several sites myself. The Mayo Clinic is an outstanding medical institution and I always follow their research as well.
Sorry I can't provide you with any additional information, but do feel free to write any time.

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Thank you, Odette. I am stage 3C. I haven't looked into a second opinion, mostly because I already like my oncologist quiet a bit. If I were to get a second opinion it would be on the pathology report, but I assume that's not possible since I doubt they kept my tumor samples at the hospital. My doctor mentioned that the folks doing the pathology were some of the best in the area. He also took my case to a "tumor board" with local oncologists to discuss it, since I present so differently. It's just confusing that I don't have typical symptoms/history for OCCC. Treatment for uterine and ovarian cancer with CCC is similar. The only difference, since they are not 100% sure of its origin, is that I will get some radiation therapy after chemo is complete. That's typical for uterine cancer. I will look at the sites you recommended, thank you! Do these sites report on the studies from Asia as well?

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@heather2020

Thank you, Odette. I am stage 3C. I haven't looked into a second opinion, mostly because I already like my oncologist quiet a bit. If I were to get a second opinion it would be on the pathology report, but I assume that's not possible since I doubt they kept my tumor samples at the hospital. My doctor mentioned that the folks doing the pathology were some of the best in the area. He also took my case to a "tumor board" with local oncologists to discuss it, since I present so differently. It's just confusing that I don't have typical symptoms/history for OCCC. Treatment for uterine and ovarian cancer with CCC is similar. The only difference, since they are not 100% sure of its origin, is that I will get some radiation therapy after chemo is complete. That's typical for uterine cancer. I will look at the sites you recommended, thank you! Do these sites report on the studies from Asia as well?

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The NCCN provides the standards/recommendations for cancer treatment in the U.S. I follow the evidence based research with references, including some from outside the U.S. I consult the pubmed.ncbi.nlm.nih.gov for recent research. You will quickly become adept at finding the latest research.

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@heather2020

Thank you, Odette. I am stage 3C. I haven't looked into a second opinion, mostly because I already like my oncologist quiet a bit. If I were to get a second opinion it would be on the pathology report, but I assume that's not possible since I doubt they kept my tumor samples at the hospital. My doctor mentioned that the folks doing the pathology were some of the best in the area. He also took my case to a "tumor board" with local oncologists to discuss it, since I present so differently. It's just confusing that I don't have typical symptoms/history for OCCC. Treatment for uterine and ovarian cancer with CCC is similar. The only difference, since they are not 100% sure of its origin, is that I will get some radiation therapy after chemo is complete. That's typical for uterine cancer. I will look at the sites you recommended, thank you! Do these sites report on the studies from Asia as well?

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Hi @heather2020, I'd like to add my welcome. It sounds like your oncologist and oncology team is being very thorough. With respect to getting a second opinion on the pathology report, I might recommend looking into that. It is possible that your tumor samples are kept for a period of time. It's worth asking.

How often are you getting chemo?

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@colleenyoung

Hi @heather2020, I'd like to add my welcome. It sounds like your oncologist and oncology team is being very thorough. With respect to getting a second opinion on the pathology report, I might recommend looking into that. It is possible that your tumor samples are kept for a period of time. It's worth asking.

How often are you getting chemo?

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Thank you, Colleen. I will ask. I am getting chemo every three weeks. They have planned six cycles. Two treatments down, four to go.

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HI @heather2020 Welcome 🙂 I was diagnosed with 3a OCCC at 47 a little over 3 years ago, treated at Mayo in Phoenix. I also had a fairly uncommon diagnosis, where cancer was found in one ovary and a lymph node. I second the recommendation by Odette that you also visit the Inspire site. There are many clear cell ladies there and some who have had radiation as part of their frontline treatment. Radiation seems to be more common with a clear cell diagnosis in Canada. Sending best wishes as you continue through treatment.

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@azovercomer

HI @heather2020 Welcome 🙂 I was diagnosed with 3a OCCC at 47 a little over 3 years ago, treated at Mayo in Phoenix. I also had a fairly uncommon diagnosis, where cancer was found in one ovary and a lymph node. I second the recommendation by Odette that you also visit the Inspire site. There are many clear cell ladies there and some who have had radiation as part of their frontline treatment. Radiation seems to be more common with a clear cell diagnosis in Canada. Sending best wishes as you continue through treatment.

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Thank you, Stacy!

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