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DiscussionRare cancer: ovarian clear cell carcinoma
Gynecologic Cancers | Last Active: Sep 5, 2024 | Replies (125)Comment receiving replies
Replies to "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?