Mayo Clinic Connect
Connect with others with ovarian clear cell carcinoma
We just opened a new group dedicated to gynecologic cancers. I have moved this discussion to the new group. See here:
> Gynecologic Cancers https://connect.mayoclinic.org/group/gynecologic-cancer/
Be sure to +FOLLOW the group and keep connecting.
Liked by Teresa, Volunteer Mentor
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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.
@colleenyoung I was recently diagnosed with OCCC, stage 1a. I was reading through the notes and see you mentioned moving the page. I don't see a rare cancer page where these conversations have moved since February 2019. Will you please help me?
Hi @amg, welcome. You are in the right place and have posted a message to the discussion about OCCC. This discussion used to be part of the Cancer group, but is now part of the group dedicated to Gynecologic Cancers.
Let me help you navigate to the parts of Connect that will interest you.
– Gynecologic Cancers group (all discussions) https://connect.mayoclinic.org/group/gynecologic-cancer/
– Rare cancer: ovarian clear cell carcinoma (discussion thread) https://connect.mayoclinic.org/discussion/rare-cancer/
– Cancer: Managing Symptoms group (all discussions) https://connect.mayoclinic.org/group/cancer-managing-symptoms/
I'd like to introduce you to fellow members who also have ovarian clear cell carcinoma, like @odette @miyonggilman and @kenwood1.
Amg, how are you doing? What treatment(s) are you or will you be having?
First a quick process question. If I click reply, will you (Colleen), odette, miyonggilman and kenwood1 be automatically included since you included then in your reply to me? Or do all people on the discussion see every post?
Good question, @amg. All members following this discussion see every post. When you @mention a member by their username they know you are addressing them specifically, but everyone sees the post. This is described in more detail in this article:
– Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
Find out more about how to use Connect here: https://connect.mayoclinic.org/get-started-on-connect/
And of course, you're always welcome to ask me questions. 🙂
Hello amg. I'm sorry I haven't responded until now. Ovarian clear cell is rare, but there are women who communicate regularly with each other on different sites. I was diagnosed in May 2017 and thankfully, I am doing well. Please feel free to write to me with any questions or concerns you may have and I will do my best to answer.
Hello, This seemed like the best place to introduce myself. I was diagnosed at 47 with Ovarian Clear Cell Carcinoma, stage 3a, in September 2017. I have been fortunate to be in remission since completing chemo at Mayo in AZ. I strive to focus on staying healthy, active and engaged in life.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, odette
Hello! I also was diagnosed with ovarian cancer, but 3c, over a year ago and was treated at Mayo, AZ. I have been in remission for 9 months. I wonder if we were treated by the same extraordinary oncologists. Don’t think I can mention their names. Your great attitude is what helps your recovery. I am also striving towards those goals and a metabolic life style, as recommended at Mayo. Keep up the good work! I am on metformin, how about you?
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, azStacy, odette
Hello. I know you from other sites and I am glad to see you've joined this one. The OCCC group is small. I continue to do research on this histology. Much of the research is out of Asia, particularly Japan where it far more prevalent. The NCCN guidelines for patients changed its standing in 2019 with regards to OCCC claiming that "treatment of theses ovarian cancers is beyond the scope of this book." In the medical version, they do address specific treatment. Their recommendations now seem more in line with ESMO, the European version as well as the Canadian approach. While research is done in the States, it seems limited compared to elsewhere. Funding for OVCA is lacking in general, and for clear cell seems even more so.
I know that you are doing well, thankfully. The Mayo Clinic is excellent in their care. I grew up going there. Stay in touch. If you come upon any interesting news, I'd love for you to share it. Progress is being made so we can be hopeful.
Liked by Colleen Young, Connect Director, azStacy
@starko, So glad you are doing well! I agree that our attitude makes a difference in healing inside and out. The Gyn/Oncs at Mayo, AZ are extraordinary!! I am also on metformin since completing chemo. Additionally, I follow a Mediterranean diet, most of the time.
Sending best wishes,
Liked by odette
@odette, Thank you for the welcome and the information on the change to NCCN guidelines, very interesting. I will stay in touch and share any news I may hear. It is my hope that with the funding increase that passed this year that some of it will trickle down to OCCC research. Mayo does have some clear cell specific clinical trials that I'm hoping will garner good results.
Liked by Colleen Young, Connect Director, odette
Yes, I am pleased about the funding increase as well. My gyn/onc told me a while back that there has been a renaissance in OVCA research/treatment. We have every reason to be hopeful. I do follow the research at Mayo and I am aware of the clinical trials. Thanks for joining our group and contributing your news.Stay well.
I have gone to the ACS website many times during this process, but my medical team cautioned me about joining a group of survivors with OC. OCCC is so rare. I was delighted to join Connect and find others like myself. I hope to hear from Kenwood, but I know how difficult this process can be…one day at a time. I also wrote to Felicidad who "liked"my message. We share several things in common. I hope to hear bacck from her as well. Thank you for your encouragement.
Odette: why did your cancer team caution you against joining a survivors' group? Susan54
I believe that my team felt under the circumstances it would not be wise for me to join a survivors' group. In retrospect, three years later, I think they were right. At one point, they even discouraged too much participation in these on-line forum which was also a good choice for me. I think it really depends on the individual and their particular situation. I had a rare form of OC (unlike the majority of women with HGSOC). Although I don't check/write on these sites regularly, I have established relationships with other women with similar diagnoses. I will certainly communicate with anyone who writes to me, but I only have experience/knowledge about my specific histology. For me, doing exhaustive research was helpful and I am in communication with researchers/doctors with expertise in this specific area.
I hope that you are finding the support you need and perhaps a survivors' group would be beneficial at this time. It really depends on what you think is best for you. Has your team advised you regarding this matter?
Liked by Colleen Young, Connect Director
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