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Rare cancer: ovarian clear cell carcinoma
Gynecologic Cancers | Last Active: Jun 18, 2023 | Replies (122)Comment receiving replies
I recently had major surgery to get a Large mass removed from my pelvic area. So I had surgery to get it all out, unfortunately had to have hysterectomy at 38yrs old...
So the gyno/oncologist says after "surgery went great, its ALL out, no treatment necessary"
As other nurses/doctors have said "you NEVER tell a patient it's all out, all set, you say surgery went well, she's doing good, just have to wait for the biopsies"
But he didn't, he kept it at..."its all out"
A week later, the doctor that "Got it all"
Come in my room and says, just got the biopsies back, you have 3 different types of cancer in your pelvic area 2 of them were stage 1A and didn't need treatment
But the one that was on my left ovary is called clear cell carcinoma, it's a rare, dangerous one to have, and told me I needed to have chemo to treat it to stop it from spreading. A few days later he and another oncologist from Dana Farber said I didn't need chemo!!!!
I had had it and came to Beth Israel and they are saints, my wound started to heal and their recommendation is to start chemotherapy now before it spreads, and I want to enjoy every minute of everyday, If Chemo now will prevent it from spreading, I'm going to have to do chemo.
What are people's thoughts???
Has anyone been diagnosed with ovarian clear cell carcinoma?
Did people choose to do chemotherapy to use as preventive reasons?
PLEASE PLEASE PLEASE, I want feedback because my mother doesn't think I should be getting chemo...it hurts REALLY BAD NOT TO HAVE HER SUPPORT
Replies to "I recently had major surgery to get a Large mass removed from my pelvic area. So..."
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Hi Molly~ I am so very sorry to hear about your diagnosis. I am fighting clear cell carcinoma right now too and have been for 1.3 years. I was told I didn't have cancer either until my biopsies came back. The problem with the clear cell, as you know, is that the doctors can't visually see it until it is a mass and it does not show up in your regular blood work. Once you have a baseline with your CA 125 it can alert you of possible growth. My oncologist believed that he got it all out with my second surgery and suggested that I do 6 rounds of carbo/taxol regimen just as to be safe. I started chemo 4 weeks after my second surgery. I would encourage you to do the chemo since the doctors can not see clear cell carcinoma. I did not want to have any regrets. My cancer came back after only three months and I am continuing to fight it!! I'm only 49 and want to see my grand babies grow up. I believe that I am here still because of the treatments I have and continue to do. This is a crazy, serious, aggressive cancer and needs to be treated!! Please reach out to me if you want to talk more in depth.