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Rare cancer: ovarian clear cell carcinoma
Gynecologic Cancers | Last Active: 1 day ago | Replies (170)Comment receiving replies
I also have clear cell carcinoma of the endometrium and had your same chemo juice. A CT scan before my last infusion showed metastasis to lymph nodes so my CCC is considered chemo resistant. Thus, I expect that it was the surgeries and radiation that enable me to sit here and reply.
I don’t have HER, P53 or other markers that direct me towards any treatment proven to help. Technically, my metastasis puts me into Stage 4, but my doctor won’t say it. So I understand where you are at.
I always have a list of questions when I see my oncologist and when first diagnosed my husband even recorded our conversations. Doctors don’t like that, but it really helped, as such discussions move quickly and we can misunderstand or forget.
I hope that you get the information you need and some answers that relay hope. The emotional journey can be more challenging than the medical one.
Replies to "I also have clear cell carcinoma of the endometrium and had your same chemo juice. A..."
Oncologist doesn't want to do surgery until/unless metastasis is cleared up. How was that for you? Did you have your surgery before metastasis to lymph nodes? So glad surgery and radiation worked for you! Write again and tell me more if you wish. I'd like to hear about your emotional journey. I cry easily, I moved to to tears by the kindness of friends. I am irritable. I don't normally swear much, but F bombs have been falling out of my mouth. Hard to plan anything - how long will I be around? How will I feel? What will it be like to die of this? I have nasty mutations that mean a cure is out of reach. One can always hope though. Maybe something new will be discovered.
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Thank you so much. Yeah, emotions, I was pretty freaked out about my scan. I'm a bit reassured by my oncologist. Before I was thinking I'd better buy a grave plot - or can I be buried on my 17 acres? I'd like a natural burial. I want to come back as a tree. Still something I need to check into, but not feeling quite as urgent. I'm 76 years old, so in any case I won't last forever.
Recording is agreat idea. I got as far as taking a photo of the directions a friend kindly wrote out for me with diagram. I forgot to do it at the appointment - but will hopefully remember next time.