Me again. Sorry I will probably post quite a bit as I'm still so new to all this. I am told that they believe my CCOC was caused by endemetriosis so I am not being offered a genetic test.
If I don't have BRACA1 or 2 gene, does that mean treatment is limited should I recur?
I'm getting ahead of myself but given recurrence is an unfortunate possibility I would like to know there is hope out there, and don't want to have false hopes of things I read about which may not apply to me.
I am having immunohistology test back soon, an MMR?
Thank you and hope everyone is OK X
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Emcee71
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Hi Emce, try to take it one step at a time and one day at a time. New drugs and therapies are constantly being developed and explored. The world around us is constantly evolving, scientific knowledge is also constantly evolving. The funny part about the human experience is that what you know today to be true, might not be true tomorrow.
OCCC arises from endometriosis most of the time. When they find it w/out evidence of endo, it’s thought that endo was ‘burnt out” or taken over by malignant transformation. The interesting question is… how come none of the gynecologists women go to yearly neither bother to diagnose endometriosis nor to tell women that there’s a small possibility of it turning into cancer. OCCC is generally not familial, it doesn’t arise from inherited germline mutations like BRCA1 and 2. Studies say it arises through random mutations in endometriosis tissue, but science doesn’t know enough about the malignant transformation. It’s possible the tumor itself has somatic BRCA 1 and 2 mutations in which case, I think one is eligible for PARP. The MMR status is useful in predicting susceptibility to immunotherapy like pembrolizumab. It’s my understanding that there’s no maintenance after 1st line chemo either w immunotherapy, bevacizumab or PARP for women in stage lower than 2. OCCC generally but not always is known to have negative estrogen and progesterone receptors. Not sure that science knows whether OCCC is hormonally dependent. Ask lots of questions of your doctors and make sure you understand why certain treatments are proposed. Hopefully, they answer them. And hang in there! Wishing you all the very best.
P.S. can I ask you, Emce, how they discovered 1c2 stage- were there tumor cells on the surface of the ovary? Was this an endometriotic cyst/endometrioma and did it rupture upon removal? Upstaging might mean you’re offered Avastin but whether or not to take it is another question. From what I’ve read on these boards, ladies have severe side effects and it seems like it’s uncertain if it’s better to overtreat or not.
I will try and take your advice which is of course very good advice.
To get me through Xmas / New Year I tried to take my boyfriend's attitude which was that for all I know I am NED and to try and be hopeful of that as without hope all is lost. Hence me not being on this forum so apologies for taking so long to reply!
On the point of the staging, I am still confused. They said the tumour (15cm) was 'right at the edge of its capsule' and they could not be sure it wasn't adhered a bit to 'the side wall' (need clarification on that) as something was slightly stuck but it was unclear if that was other (endometrial?) tissue. I don't know why they did not biopsy that bit and wish I had asked. Maybe it was the pelvic wall (I didn't need a bowel resection, which surely they would have done if there was any doubt it was stuck to a part of my bowel, which was all wrapped up with the tumour. I had a scan and they didn't think it was pre surgery from the images though they weren't 100pc on that)
Lymph nodes x 4 biopsy clear. No visible sign of disease on other pelvic organs. Ascites clear.
Hopefully my chat with the oncologist will shed more light on this as surely she will have my surgery report. Again, waiting on some other histology before a full treatment plan is given.
Thanks again for replying and hope you're doing good. X
When I was first diagnosed with CCOC I was told (quote ) ‘it wasn’t the Angelina Jolie’ genetic type as that was my first concern having daughters and granddaughters.
Then my oncologist recommended I was a candidate for genetic testing as my mother had had OC 🤷🏻♀️ My genetic testing all came back negative. I have read that CC is often the result of endometriosis but this was not the case for me having never suffered with it.
I have read on this forum about more treatments open to you if you are BRCA positive.
To be honest I haven’t looked too far into treatments of what ‘ifs’ as I have a hard enough time accepting the present and processing the ‘actual’. Additionally I hope that if/when the time came when I needed treatment for a recurrence a new treatment/drug could be available at that time. 🤞
We are all different and this is my personal way of accepting my diagnosis, treatment, recovery and remission, and you must do what feels right for you.
I hope one of the wise ladies on here further on in their journey may have the answers you seek. 🤞
Thanks Jen nice to hear from you again and this is all very useful.
They seem convinced it was endemetrial so I will just go with that and also soon I will find out what further tests the oncologist has asked for as I am still not quite clear. And you're right, it really is best to just stick to the now which as you say is hard enough to process. I do go from A to Z in 10 seconds and will get some help I think with counselling to change my mindset! Happy New Year to you x
Hi Emcee71I too diagnosed CCOC in 2019. Since then it metastised and recurred 😅, but I am still here.
I believe mine came from endometriosis, but never diagnosed before.
As for treatment, there are clinical trials which are suitable for CC. Cancer research UK has many trials and when time comes, I am sure your oncologist can refer or offer you screening for a trial if your profile fits.
I was going to start a trial last week, however I developed a couple symptoms which they thought unsure of. As the trial hasn't got much data, we decided to leave it for 4 weeks, then CT see how it goes.
I am taking a day at time, whatever turns out, always turns out ok.
Can I ask where the trial was? I also have clear cell & endometroid. And also had a recurrence. Had menorraghia (cannot spell that) for 10 years, No one did anything.
Thanks Norie, and I am sorry you had a recurrence and have to wait to see about the trial. Let us know if you get on it, I have my fingers crossed for you X
Thank you. The trial didn't go ahead. I am back oncology now for some chemo sessions. Since then, I developed more symptoms which affecting lymph nodes, so waiting for CT and chemo. Fingers crossed, chemo will ease symptoms. Xxx
Hi Emcee71, I was also diagnosed with clear cell in Dec 21, arising from endometriosis (which I was unaware of) stage 1c2 as cells were on the surface of a 20cm tumour, no spread elsewhere and lymph nodes and washings clear. My oncologist said it would be unlikely that I’d have the Brac genes (not sure why she said that, maybe because it’s CC) but as I had a history of breast cancer in 2 close relatives I wanted it checked, I am negative, was also tested for MMR which is Mismatch Repair, again mine was normal. Hope this helps x
Don't worry about genetic testing. I waited 10 yrs to decide finally to have it. I have clear cell cancer. I have had no reoccurring disease. I had 18 rounds of chemo in 14 weeks. I have had nothing since I finished the chemo as far as meds. Stop reading I know it's hard but it is scary and stressful. If you trust your DR. Go along with the treatment I would go as aggressively with treatment as you can handle. That's what I did. Best wishes, Liz
Me Too! So I learn new things on this forum about our “special “ cancer . I was diagnosed with cc in 2019 had full hysterectomy was told I didn’t have the bRAC gene but my youngest sister died of ovarian cancer in 2021 and she had two children so I wonder about the endometriosis thing , just learned that , interesting cause I never could get pregnant. I did have a reoccurrence in 2020 on my abdomen and I do believe that it was because it ruptured in surgery in 2019 . Anyways I am still here too, taking letrozole to block tumors. I wish I could say I don’t worry sometimes but that comes with the territory. Reoccurring cancer is not a death certificate. Don’t count on the ca125 marker with cc it doesn’t show up till later, insist on getting a ct scan for the next few years if you start to get dizzy or headache and just want to sleep. Stay in prayer and positive in thoughts, thank your body for being strong. Like the other ladies said we are progressing in solutions and last I heard about cc is that immunotherapy is doing wonders. Be blessed and stay strong.
Everyone focuses on the BRCA mutations but there is also Lynch syndrome, which carries an increased risk of ovarian cancer, especially endometrioid (which is related to endometriosis) and clear cell. If there is any family history of bowel cancer, endometrial (womb) cancer, or a number of other cancers including small intestine, stomach, skin, kidney, ureter, pancreas or brain (glioblastoma), please push hard for testing for Lynch syndrome. The LSUK charity has, after some years, persuaded NICE to recommend testing for Lynch for all patients with bowel or endometrial cancer, as they are the commonest ones to occur in Lynch, but we haven't yet got a consensus on ovarian.
candyapplegrey, ask your oncologist. If you have any family history of bowel cancer, womb cancer, ovarian cancer or several others (skin, brain, kidney, ureter, small bowel etc.) you should qualify for testing.
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