I have been diagnosed with Stage 1, C3 clear cell ovarian cancer. I went to the GP on 6th Sept 2024 and by the 16th September I had CA125 test and an ultra sound scan. The mass was 12 by 10 cm. I developed a blood clot on my lung, so surgery was pushed back to the 21st October. I had a full radical hysterectomy with complete omentum removal. I am now undergoing 6 rounds of chemo and I have just had my second session. My CA 125 was 68 at diagnosis, 88 at first chemo and was 18.8 before second chemo. Apparently inflammation after surgery can cause CA 125 to spike. Needless to say. I am simply terrified.
The prognosis for clear cell stage 1 is that 70-80% of patients have remission and good long term survival. A bit less positive if you has cancer cells in washing which I did.
Love to hear from someone who has gone into remission and never had clear cell reoccur.
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JOY202452
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I too had early stage clear cell stage 1a (not fully staged).
I had a post menopause bleed which my GP took seriously & sent me for a ultrasound scan which showed a ‘mass’ on right ovary.
My CA125 was 76 and the MRI indicated a fibroid although they did say there was a possibility of it being cancer.
I had a bilateral salpingo oophrectomy and hysterectomy on 9th August 22. My ovary was attached to my bowel & had to be separated during the op. My surgeon still thought it was a fibroid but 3 weeks later I was told I had CCOC. Quite a shock 😮 .
My CA125 before I started chemo on 17th October 22 was 8.
I’ve been very lucky to have been NED ever since with a CA125 of around 6/7.
I have quite bad peripheral neuropathy from the chemo but other than that I have been soo fortunate.
I now get seen every 4 months for a check up.
Take each step as it comes, we’ve all been where you are, it is doable and you will come out the other side.
Sorry to hear you’ve joined the club. I was diagnosed with 1C2 clear cell in March 2021 when I had my surgery. Unfortunately I was unable to have chemo due to complications from surgery, but I am very fortunate to still be NED. It is very normal to worry about reoccurrence. I had some counselling via my specialist nurse, which I found very helpful.
I had a hysterectomy for a dermoid cyst and painful periods in August 2020 .
Histology results showed endometriod adenocarcinoma grade 1 in the cyst and clear cell carcinoma in my left ovary and on my left fallopian tube. Underwent debulking surgery in October 2020 and no other cancer was found. My ovarian cancer was staged as 2a .
Completed first line treatment March 2021 CT scan came back no evidence of disease and my CA125 was 5. It was 53 just before my hysterectomy.
Coming to the end of 2024 and three years in remission . I feel so privileged to have managed to reach the age of 50 and since my recovery managed to do so many things.
This year, I have managed to return to work- albeit a different job altogether. It's easygoing and I work mainly from home. Things are looking so much better .
You too Joy will get through this - one day at a time. Treatments are advancing and so much can be done.
Hi, I was clear cell 1C2 alongside 1b womb cancer and now five years post end of treatment (today actually!). I had full debulking followed by six rounds of carbo/paclitaxel and then 25 sessions of radiotherapy for the womb cancer. They approached as a belt & braces exercise to kill off any stray cells.
My CA125 is a good marker for me and has stayed between 8-11 having been 986 on diagnosis.
It’s a scary time and can feel like you’re being swept along by a runaway train but conversely, that also makes treatment time pass quicker than you think it will ❤️
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