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.
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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 ❤️
Yorkiepudd - 5 years threshold. Wonderful news for you. Thank you for taking the time. Newbies like myself are simply struggling not to cry to most things. At 52 and never been ill, I simply took it all for granted.
I hadn’t either and my first op too; but if you’re going to be sliced open do it in style with a war wound to be proud of! Sarcasm, gallows humour and a thousand questions got me through. Remember, a step at a time forget thinking about the whole staircase x
I thought you might also want to hear from someone who came out of remission (6 years after TAH and chemo), but has had good long term survival. I’ve been thru radiation, chemo and immunotherapy, and still have quality of life. If one thing stops working, we find something else. I was diagnosed in 2008. 🙏
I had mixed clear cell and endometrioid. Finished chemo (carboplatin only) in November 2006 and have never had a recurrence. (My mum was a 28-year survivor but we never knew what cell type she had.) Your GP sounds on the ball, which is great. Which chemo are you having?
My GP was a superstar. I went to the her in 2022 as I had horrendous food poisoning. She said to me, your stomach is a bit bloated and gave me a CA 125 test, which was normal. Who would have thought 2 years later …. The chemo i am on is carboplatin and taxadol.
I was diagnosed with clear cell 3C. Diagnosed in December 2017, 6 rounds of chemotherapy, major surgery in May 2018, three more rounds of chemotherapy and I have had no recurrences. I was on Atorvastatin for two years, and nothing after I stopped that.
One really good advice I got from one of my doctors was to only allow yourself five minutes a day to think about cancer. That’s it. It’s hard, but you must stay positive!
Thank you for your message. I love your doctor’s 5 minute rule. I so get that.
Without wishing to pry, were you stage 1 c3 or stage 3. Because I have not known anyone have chemo, then surgery and more chemo for stage 1. But then again I know very little.
I'm sorry you're going through this. It is indeed so frightening. I am a similar age to you (53) and I was DX-ed Nov 2023 with Clear Cell OC and staged at 2B, even though no cancer was found on the surface of the ovary or in washings or anywhere else eg lymph nodes. (The staging was based on the fact the ovary containing the tumour was stuck to the sigmoid colon, which also have been due to inflammation or endometriosis and the fact that the tumour had just microcopically breached the inner lining of the ovarian sac). My tumour was 15x12x10 and I also had a 10cm peduncular fibroid and endometrial cancer stage 1 grade 1!
My CA125 was similar to yours before my surgery. When it was last checked in Nov 2024 it was 8. Yes, CA125 is not always an accurate marker, and certainly can spike after surgery, or even the flu.
My baseline CT scan after chemo showed NED. I had another one a few months back after experiencing some symptoms like bloating and that showed NED too, though after chemo finished I was found to have an unexplained blockage of some sort in one of my kidneys which was thought to be a stone but a kidney scan said it isn't. I'm probably going to have day surgery soon for them to to take a look and try and work out what is causing it (just deciding whether to do it - it's complicated!). I just have to hope for the best! I would be surprised if the OC had found its way into the opposite kidney without showing presence anywhere else.. .then again, it could be another primary. I certainly hope not! My general bloods have been consistently good.
I found the final 3 chemos really hard on my energy levels and the surgical menopause seemed to really hit me months later. Odd! However, I am fortunate to be allowed to take low dose oestrogen which within a week of taking improved my life no end (energy levels, brain function). The side dish of endometrial cancer, very early stage, was Progesterone and Oestrogen positive, but since that was so early stage and my Clear Cell cancer isn't oestrogen receptive or only very slightly apparently, it has been considered safe for me to take oestrogen at a low dose. If you find yourself suffering in that regard do ask if it is safe for you to take based on your tumour histology. Being allowed it was dependent on a clear scan.
We are all here for you and I wish you the best in your treatment.
Dear Emily. Thank you so much for your message. My tumour was also welded to my bowel and other bits due to my endometriosis, which was extensive. Made surgery more complicated. I am told they found nothing else i.e. cancer anywhere else or in lymph nodes except in my abdominal washings. At present I am just hoping for the best.
Good luck re kidney blockage. I am sure you and your team will make the right choice. Keep me posted.
I have one friend who was diagnosed with stage 1C clear cell ovarian cancer about 18 months before I was diagnosed with stage 1A mucinous ovarian cancer - she had chemo and I did not, but we are both still alive and active 14 and a half (her) and 13 years later. I can't be completely certain that she hasn't had a recurrence as she moved away shortly before covid and we haven't really kept in touch, but we have sufficient mutual friends that I know she is still alive and active. I hope that provides you with some reassurance, and that you continue to do well!
Thank you Barbara for taking the time to pen a reply. Yourself and others on this site have been so kind. They say ‘words have meaning’ and this is really reinforced by the members on this site. Thank you.
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