Rare cancer: ovarian clear cell carcinoma

Interested to see your post . Was just diagnosed with CCCO today but have had Neuroendocrine CA for almost 14 years. Was getting ready to start an aggressive treatment for that when the ovarian was found. That has been pushed to the back burner in lu of chemotherapy for OC .
Ugg. RARE CANCERS !!

Surgery and staging was 8 days ago. Will begin treatments within a couple of week.
Staging showed confinement to ovary.

So glad to hear it was confined to the ovary. CCOC is often found in early stages when the outcome is positive. I would suggest you look at the NCCN recommendations which are the standards used by the NCI designated cancer centers. It is also common to look for second opinions.

Hi @granna, I believe you have recently started treatments or will be soon. What treatment will you be on? How are you doing?

I started chemo one week ago. I am on Tazol/carboplatin and It has been a pretty tough week but getting better each day.
Someone told me bf I started that it gets a bit better after week 1 . I’m counting on that !!
Thank you for asking.

Taxol and carbo. Just had second round yesterday. 1 st round was tough ,but now that I’ve been through it once, I hope to get ahead of the muscle and bone pain this time . Taking tramadol in advance.
White count and neutrophils dropped on first round and I will be receiving udenyca injection today and after each future Treatment to avoid a repeat of the drops going forward.
All in all, I’m doing pretty good.
Had my hair buzzed earlier in the week to avoid finding hair everywhere and now getting accustomed to my new look !

Glad to hear you are getting through treatment okay. Definitely not pleasant, but manageable. Your numbers will be watched carefully. Take good care. Your positive attitude will help.

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.

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.

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.