I'm a newbie here posting on behalf of my mum, who has just been diagnosed with stage 1A ovarian clear cell carcinoma (OCCC). She had her debulking surgery in late Jan and is now being offered watch and wait or adjuvant chemotherapy as options.
I've read that OCCC is chemo resistant. Just wondered if anyone was in a similar position, which route you've taken?
I'm a bowel cancer survivor myself but ovaries are brand new territory for me, so just looking for some advice for my mam!
Thanks so much,
Betty xxx
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Bettyb87
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There is no straight answer to your question scientifically speaking. It’s a personal choice and you may have to consider how large the tumor/ cyst was to try to make your decision. And how larger the tumor was in relation to the cyst. A additional factor is how detailed the staging was. Was the operation open laparatomy or laparoscopy and how large was the cyst, if you don’t mind sharing? Good luck in making difficult decisions!
Thanks so much for your reply! The oncologist said chemo would provide 6% less likelihood (of recurrence or disease free survival, I'm not sure) but that this figure might be less as it was such an early stage. I'll ask mum what size the tumour was inside the cyst, I don't think she's been given this information. I do know that the cyst was a serous cystadenofibroma that was 20cm x 12cm and weighed 2kg! But the tumour was well inside of the cyst and so she had totally clear margins. She had an open laparotomy with removal of ovaries, tubes, omentum etc. xxx
Sorry to hear about your mum’s diagnosis but I’m glad you’ve found this site.
I was diagnosed with CCOC stage 1a in September 22. Mine was an unexpected diagnosis as they thought I had fibroids found after my salpingo oophrectomy hysterectomy, but there was a possibility of cancer as my CA125 was raised to 76.
I was advised to have adjuvant chemo notwithstanding it has a limited affect with clear cell. I asked my onc if I was his wife what would he tell her to do and he said to have the chemo.
I just wanted to satisfy myself that if I had a recurrence I’d done everything at the time to prevent it.
It’s a personal decision and unfortunately no one has a crystal ball…..
I’ve been NED since my operation (before chemo) so I consider myself very fortunate.
I wish your mum good luck for the future whatever she decides xx Jen
Hi BettyB87, I was CCOC 1c (plus a separate endometrial cancer) in 2019 and offered single or dual agent chemo as a ‘belt and braces’ approach. I had the ‘standard’ six cycles of Carboplatin/Paclitaxel (and also radio for the womb cancer) and have been NED since.
As Doggies221 said, there’s no scientific right or wrong, but they also wouldn’t put folk through the treatment if it had no effect at all. Clear cell is less responsive to platinum based chemo but I’d never heard it was resistant.
Sadly it’s still a decision only your mum can make and appreciate it’s so much to deal with.
Hi Betty, my situation was exactly like your mums and I had the same dilemma in 2022. I was offered the dual chemo with side effects or just carboplatin with fewer side effects or no chemo at all. I chose the single chemo with about five percent success rate against CCC, I am still ok with six monthly hospital visits. Wishing your mum well with her journey.
Hi! I was diagnosed with CCOC stage 1C according to one oncologist and 2C according to another in 2013. They both told me that all clear cell tumors are grade 3 (aggressive) and recommended chemo even at the earliest stages (1a). Yes clear cell can be platinum resistant but I went through 6 cycles and have not had a recurrence 🤞🤞. One doctor also recommended radiation for clear cell but I chose not to do that as the side effects (possible permanent bowel and bladder incontinence ) were daunting. I know other clear cell survivors on here have done radiation. I think I would lean toward the chemo for your mom. Keep us posted.
hi. I had exactly the same situation and I decided not to have chemo but instead to focus on boosting my immunity as much as possible with a healthy lifestyle. Two years in I am ok but I have to admit if it were to come back I would likely wonder if I should have done the chemo. I just felt the side effects were bigger than the benefits but everyone has to decide for themselves. That said if it had been staged higher I would have definitely done chemo
You need to discuss your mother's options of treatment with her doctor.As far as I know, from the guidelines of treatment, this type of cancer has recommandation for chemotherapy, even in such an early stage.Chemotherapy is an essential part of the treatment, completing the surgery.Best wishes and stay strong!Let us here good news from you!
I had mixed clear cell and endometrioid ovarian cancer, stage Ic, and was recommended to have carboplatin-only chemotherapy. That was in 2006 and I'm still here, never had a recurrence. With your own diagnosis of bowel cancer, you should be offered testing for Lynch syndrome, especially if there is any other cancer in the family. The Amsterdam criterion is 3-2-1 - 3 family members affected, over 2 generations, 1 diagnosed under the age of 50 - sounds as if you're pretty close to that. If you haven't already been offered testing, ask at your next appointment.
Hello! I had clear cell stage 1b. Chemo did work carbo/ taxol. I did 3 sessions as precautionary . I have been cancer free since 2015. I also have lynch syndrome but not sure if this was the cause. Right now I just get my ca125 checked yearly.
thanks so much everyone for your super helpful responses. I really appreciate them! I will speak to my mum but ultimately it's her decision. I had bowel cancer myself and all genetic testing came back clear, but she also had breast cancer as a separate primary in 2023 so they are going to do genetic testing on her too. Hope this nightmare will be over for us soon. Lots of love to all, I honestly am truly grateful xxxxx
Hello Bettyb87. As a fellow Cell Clear Ovarian Cancer patient. Stage 1c3. I feel for your Mum. However Stage 1a is a very good place to start. It is important to state Clear cell chemo can be resistant to chemo not chemo resistant always. Chemo resistance increases with stage. Unless you are unlucky. 6% reduction, when the odds of a stage 1a reoccurrence 10%, is significant.
I was terrified of chemo but I went ahead in November 23. My last session is 14 March (hopefully ever). Chemo okay, as I have had none of symptoms such as nausea/sickness. Muscle ache yes but only for a few days, and I managed with out pain killers (and I am a total wuss). Lost hair, but nails and eyebrows fine.
Similar to the other posts, I went with the chemo because I had to give myself the best shot. Every person starting chemo is very worried. For instance my mum went to my chemo session this week, and as an ex nurse I wondered where she had got to - and she returned to my chair and introduced a newbie to me - who she had been cuddling and talking down off the wall. The lady was just about to undergo her first treatment for triple negative breast cancer. I stopped by her chair later and she was smiled and was feeling better.
Hope your Mum’s treatment goes well. I have found every one so lovely and kind which makes this so much easier.
I was originally diagnosed with Stage 1A clear cell cancer. I had a full hysterectomy followed by chemotherapy x6. Carboplatin and Paxitaxol. Originally I was told that the tumour was removed intact and there were no cells in my lymph’s. The chemo was done to make sure of no other cells. A preventative. Just over 12 months later some cells were found near my waistline. I had A further 6 sessions of a different chemo duo. I then chose to go onto Niraparib even though it would only give me a bit of extra time before the cancer cells recurred. For 8 months I was ok on the treatment but I had an episode as a result of recurrent sleeping issues and a hospital admission. The Niraparib was stopped in February 24. I have regular 3 monthly CT scans to check for recurring cells. I am not on any current treatment. I feel fit and well and am very active. To date no further cells have been identified. I am always relieved when I get the results of the scans as I am aware that the cells could crop up somewhere. Where and when is the unknown but I am living! I do not have the BRCA gene. If cells are found in the future I will cross that bridge when I come to it. I intend to keep fit, healthy and active to live as long as possible.
I hope this helps
All the best to your mum. Give her lots of hugs.
Ps. For me,, chemo wasn’t too bad but everyone reacts and copes with it differently. I walked in nature all through my chemo sessions. I took a small folding camping stool and sat for a while if I felt weak. Being in nature was a tremendous help to me, physically and mentally and it still is.
I was diagnosed with clear cell carcinoma (arising out of endometrosis) in Jan 2023. It was deemed inoperable due to the large tumor embedded in my abdomen (they wouldn't be able to close me up). I started chemo (carboplatin/paclitaxol) to try to shrink the tumor enough for surgery. After three rounds they determined it was not effective. They transitioned me to immunotherapy (Keytruda plus Lenvima) and that massively shrunk my tumor so that I was able to have surgery in Nov 2023 (still continued with Keytruda after surgery). Unfortunately, the cancer spread to lymph nodes so I had radiation to my abdomen in late Jul/early Aug 2024. A CT scan in September showed that the cancer had spread to new lymph nodes. They added back Lenvima to see if that would help. But in January, nodules appeared in my lungs, blood clots in one lung and a mass tightening around an airway appeared. I was tested and found that I am HER 2 triple positive so they started me back on chemo (Enhertu), which is targeted and has had good results historically. I also received targeted radiation to my lungs. I'm currently improving (breathing is so much better) and my next scan will be in April.
After my surgery in 2023 my oncologist suggested stopping the immunotherapy (since the pathology had clean margins around the tumor and there was no other evidence of disease). I chose to continue and it probably helped to keep things from been much worse than they are now (plus that meant my cancer antigen was tested every 3 weeks, so they were able to react quickly when it spiked). Obviously your mom needs to do what she feels is right for her. Chemo isn't easy on the body, but for me I wanted to continue treatment even after my surgery.
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xxxxxxx
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