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What do I need to know about my type of cancer (ovarian)?
Gynecologic Cancers | Last Active: Jul 15, 2024 | Replies (13)Comment receiving replies
Was your surgery done by a gynecological oncologist?
Do you have access to your original tissue sampling/biopsy results, to know what type of OC you have?
Did you have germline and somatic testing for BRCA-1, BRCA-2, and HRD status?
Do you know if your cancer is platinum-resistant?
Did your CA-125 go down with treatment?
Did you receive bevacizumab (Avastin) in your primary therapy?
The answers to these questions will help determine what your next steps should be. Try to gather this information and bring it to your appointment for your second opinion. (You may have to make an appointment with your original doctor to get the answers to these questions.)
Good luck!
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When I read other women’s comments, I realize how very little I was told. And I didn’t know to ask and hadn’t learned to ask in anything I’d read either.
We only have 2 oncologists up here. I had one of them through my first 3 chemos. For specific reasons, I felt that she was awful from the get-go. That first impression only got reaffirmed over time. The cancer surgeon who did my surgery helped arrange for me to get switched to the other one to continue chemo and treatment after surgery. At first, I thought he was better but I’ve discovered that he’s pretty terrible as well.
I received Avastin during chemo and after. My CA125 went down from over 1700 to around 20 after surgery and 6 chemo sessions. It stayed there for a number of months. Using that low CA125, my current oncologist started telling me that I was cancer free. He also went farthe and told me that he thought I was going to be one of the lucky ones where it never came back. I told all my family and friends that. About a year from my first PET scan and cancer diagnosis, he wanted to stop treatment completely. He announced that I was cured. I said that I would like a repeat PET scan before he stopped treatment. He disagreed with me about needing a repeat PET scan. I had my 6 month checkup with my oncology surgeon, who I’ve really liked, so I just waited and asked him to order one. The PET scan showed that I had never been cancer free at all. Chemo hadn’t been completely successful. The cancer surgeon said that for me the CA125 isn’t an accurate measure. For me, finding out that I wasn’t cancer free was actually worse than the first diagnosis of cancer.
I’m still with this oncologist who would have mistakenly stopped treatment completely. Who knows when I would have found out that he’d made a major mistake? I’ve learned that I can’t trust the doctor who’s treating me for Stage 4 cancer. And in hearing all the information that other women know about their cancer type, I’m discovering that it’s when worse. That I was also never given any of the information about my cancer type that other women have received.
I will get all my records and finally work to learn what I didn’t know I needed to know. Thank you all so much for the information and help. Jo-