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Fri, Mar 1 9:35am · Mayo Clinic AZ and FL Living-with-Cancer Patient Symposium in Cancer

I was diagnosed in May 2017 with clear cell ovarian cancer which is quite rare although I've met a number of women on-line with this particular histology. It is associated with endometriosis which runs in my family. I was considered asymptomatic. Fortunately, I was treated very early. I spend a fair amount of time doing research. I'm glad you had access to the care provided by the Mayo Clinic. You are in very good hands. I actually don't communicate regularly (daily) with other women as I find it overwhelming emotionally at times. I do not participate in any support groups at the recommendation of my medical team. For me, understanding the etiology of my disease is helpful in my recovery and my medical team has been very supportive. My family and my friends have given me tremendous support.
I am so happy that you are doing well. I am happy to stay in touch with you.

Wed, Feb 27 9:00am · Mayo Clinic AZ and FL Living-with-Cancer Patient Symposium in Cancer

Hello. I am always happy to communicate with other women with OC although I was diagnosed with a rare histology so I'm not always sure I have much to offer other than emotional support. You look beautiful and well so I hope you are recovering from your treatment. I live on the east coast.

Wed, Feb 13 8:28am · Rare cancer: ovarian clear cell carcinoma in Gynecologic Cancers

Dear Colleen, I recently listened to the video on Cancer Immunotherapies. Initially, it was to be on women’s cancers and we were asked to submit questions.
As the topic of the discussion changed, we were informed that our questions would be addressed later by someone with expertise. My question was about ovarian clear cell cancer which is rare. I am hopeful that I will receive a response at some point. You are always so helpful, so I wondered if you might know about this matter. Thank you.

Thu, Feb 7 8:10am · Video Q&A about Cancer Immunotherapies in Cancer

Thank you. I did listen to the presentation by Dr. Dronca as I am interested in any research on women's cancers, however, I appreciate your letting us know that you will be sending our questions to the appropriate physicians for answers. My focus is ovarian clear cell research.

Fri, Feb 1 11:21am · Rare cancer: ovarian clear cell carcinoma in Gynecologic Cancers

Hi Miyong, If I understand correctly, you live in Tucson and are having treatment there? There is also a St. Mary's in Rochester, MN where the Mayo Clinic is based.
A diagnosis of clear cell is hard to face, but 1C is early stage and often has good outcomes. I, too, had 6 rounds of chemo although modified because of peripheral neuropathy. I didn't have many other symptoms besides losing my hair which is traumatic, of course. Exercise was very helpful in my recovery, not only physically, but emotionally as well. I also did/and do yoga.
I hope you are getting lots of support from family or friends. Please feel free to write me.
My husband and I are planning to look at a retirement community in Tucson or Scottsdale. Warm weather is appealing. I live in New England.

Fri, Feb 1 9:22am · Video Q&A about Cancer Immunotherapies in Cancer

I am very interested in ovarian clear cell cancer. As HGSC is far more prevalent in the United States, that is the focus of most research. Much of the research I encounter about OCCC is from Europe and Asia (more prevalent there). Clear cell is known to originate from lesions of ovarian endometriosis and it would seem that focusing on that condition would allow for early detection. A large percentage of women are found in an early stage OCCC as it is and has the characteristics of Type 1 cancer (grows locally, indolent behavior, etc.). When found early, the OS is high. It would seem with its unique genetic signature, its association with endometriosis, biomarkers, and so on, that early detection is possible and it could be avoided with the removal of endometriomas prior to menopause (although I've encountered women in their thirties with clear cell). Even the updated 2018 version of the NCCN for ovarian cancer references Japanese articles that state that fertility sparing surgery is an option for Stage 1A OCCC and that adjuvant chemotherapy is not necessary. Despite that, the NCCN continues to recommend the platinum based therapy which is not effective. I understand there is limited funding for the rare ovarian cancers (Gershenson, etc), but with its association with endometriosis perhaps funding would be available. I have tremendous confidence in the Mayo Clinic and their research. Thank you.

Thu, Jan 31 12:23pm · Rare cancer: ovarian clear cell carcinoma in Gynecologic Cancers

Thank you! Planning to participate.

Dec 16, 2018 · Rare cancer: ovarian clear cell carcinoma in Gynecologic Cancers

I am so sorry this has been your experience. I do not have any advice to offer, but there are many women on-line that may have words of advice to give you (Inspire, Cancer Connect, etc). I hope you are getting good care and that you will overcome this difficult time.