I am 52 years old. I had a full hysterectomy at Queen Charlotte and Chelsea hospital in September 2018. This was due to a large cyst ( 18 cm x 10 cm) that was found on my left ovary. My CT 125 was 17 and so cancer was not suspected at first but the consultant was not happy with the look of the cyst as it had more than just liquid in it. The cyst was growing at the rate of centimeter per week. My operation was scheduled with in a week. The surgeon was happy with the operation. He said, I had endometriosis, as most of the organs were stuck. I had an open surgery due to the size of my cyst. Clear cell carcinoma was found on my right ovary only and nowhere else. The surgeon believes he was able to remove everything which was visible to the naked eye. My cancer is stage 1C but they have upped it to 11b due to the endometriosis. I have recovered well from the surgery. I started Chemo a few days ago. This is the first one and I am nervous as I don't know what to expect.
I am also worried about recurrence but hopefully it wont happen too soon!I have read stories from long term survivors without recurrence which is very comforting. Would love to hear from other survivors and your battle with OCCC.
Thank you
Written by
Bluesparrow
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Hi my story is very similar and I am 2 years no evidence of disease so there’s plenty of hope 🤗🤗 chemo for me wasn’t as bad as expected don’t get me wrong the symptoms kicked in about day three achy muscles that I called my voodoo pains 😂 we are all different and have our own worries but a lot we all have ... the losing hair thing I dreaded but I remember to laugh and not take myself too seriously be prepared to lose your eyelashes huge shock to me the eyebrows yes but eyelashes who knew...take advantage of Macmillan make over days for make up tips and boots are really good too... feel free to message me anytime ... I don’t visit here as much as I used too but I’m always in the back ground the wonderful ladies on here saved my sanity love them all 😍😍sending best wishes and huge hugs you got this !! 🤗🤗
Thank you very much Shelly. It is really very encouraging to hear from you. I have made an appointment to see the wig company in December. Can I ask whether you had high fever during Chemo or were you hospitalized?
I did completely forgotten about it but yes I did had to have the fan on me .... it was after my op tho not during chemo I coped quite well although I did always feel warm whilst having chemo and sometimes had pain in my arm I was lucky to be never hospitalised ... I also had low magnesium so had to have infusion so if you like Brazil nuts have plenty for snacks as they contain high magnesium 😊
That is good to know Shelly. I am also coping well after Chemo so far. Struggling with constipation a bit. I will keep taking my softer and Sanna as prescribed. By the way, is your OCCC serous, non serous or Mix?
I'm a 16 year survivor and, like you, I was told by my surgeon that he thought he'd 'got it all'. I had cancer in my omentum and both ovaries. Back then, they didn't do chemo follow up if there was no CA125 or scan evidence to warrant it. I think it's standard now to give a dose of chemo just to be on the safe side. It sounds as if your surgeon is doing everything he/she can to ensure you become a long terms survivor too. Good luck
Hi lovely, welcome to our lovely gang. I was diagnosed 1c3 clear cell in July 2014, the cyst on my left ovary was 30cm, it encased a delightful18cm tumour, I had the usual surgery followed by 18 sessions of the regular carbo/taxol cocktail. I’m still NED, I have a neuropathy and slight digestive issues from the chemo but I’m still here causing trouble and hope to be doing so for a long t8me to come. The CA125 marker isn’t always the best guide for us clear cell ladies, we tend to be more symptomatic and as a result tend to be really body aware.
Good luck with your chemo, take the anti nausea drugs and steroids they give you, they do work, the chemo has a cumulative effect so you’ll notice slightly more intense symptoms as you go but you’ll get there. Big hugs and love ❤️Xx Jane
Hi blue sparrow, I’m stage 1c clear cell too, but being treated as stage 2 because although cancer was only found in my cyst, it has ruptured & I had clear cells in my pelvic washing which apparently is BAD NEWS 😢
I’ve just finished 6 cycles of chemo after 2 surgeries & am now halfway through having 5 weeks pelvic radiotherapy, which you get in Edinburgh if clear cell stage 2.
I found chemo tough, I won’t lie ( to be honest I’ve found everything tough!) - however you do get through it and now I am starting to forget the worst of it. I was lucky not to get fevers or end up in hospital like some - my worst issues were blood counts (needed a couple of transfusions) & oh my goodness the constipation! If you hit issues, tell the staff, I got my meds tweaked after the second which did help. The effects are cumulative, I was very tired by the end. As Shelly girl says, use Macmillan for help or Maggies are amazing if you have one. Finally get on a look good feel better session, so nice & helps you to draw in your eyebrows when they go.
I hope you don't mind if I ask a question - What is the implication of the endometriosis and why does that affect the staging?
I'm also 1c but mucinous not cc - but at the staging I've just remembered he kept asking me if I'd ever had endometriosis. I thought it was just an idle question off the surgeon but you've got me wondering now!
ps I didn't find the chemo too bad but I only had carboplatin alone. Remember to drink plenty and try and keep things like potassium/magnesium etc up (fruit/nuts).
The implication of endometriosis is that it caused my organs to be stuck. I believe mine was stuck to the pelvis but I am not a hundred percent sure. Due to this reason, the staging is 11b and not 1C. They want to give me the best treatment possible to make sure there ar no bad cells left behind.
Thank you for the tips about Chemo. I am ok but so far after my first Chemo except I feel tired.
I kept getting asked about whether I'd had endometriosis too, which I found puzzling, and afterwards I was told "we did find signs of endometriosis" as if it was really significant. You've now got me wondering! Had no idea that could influence the stage/grade.
The Macmillan Look Good Feel Better Days are BRILLIANT, the tips for eyebrows/eyelashes are fabulous, plus all the colour correctors. Hair grows back. It's awful while you don't have it, but now I have a huge thick head of curls. I resorted to wigs sometimes and beanies most of the time, it was wintertime.
Chemo affects us all differently. I went through a bit of hell but had a lot of unremarkable days as well, and never, fortunately, ended up in hospital. Looking after yourself is absolutely number one priority.
I suspected I had endometriosis but it was never confirmed by my GP. The surgeon said all my organs were stuck together and to the pelvis. This suggests endometriosis and hence the stage.
My ca125 was only 16 when I first went to my GP. 2 years later I was diagnosed stage 3c clear cell and my ca 125 was 67. My debulking was very successful but the cancer grew back during chemo and I am now on a clinical trial.
I would be interested to hear about your trial. My ovarian cyst was diagnosed as clear cell stage 3A. After a post surgery scan they told me that I had lesions on my liver. They are going to CT me again after my third round to see if chemo has had any effect. Then I have no idea what they might suggest.
My cancer also came back on my liver after very successful surgery. If the chemo doesn’t work I suggest you apply for the Patriot trial . I am going to send you a private message with the details.
The CA125 is not a good indicator at all. I was given a two weeks referral based on that. I have been told they would monitor me by my general health and occasional CT scan.
I am sorry to hear there has been a recurrence. I am sure you will be fine.
My CA125 was 7, 26 cms lump containing clear cell, had everything removed. Stage 1c as lump burst during surgery and 6 x Carboplatin only. Just approaching 6 years N.E.D. and still being checked at hospital (think the next check is my last).
Yes, as far as I know, I am still doing well. I am on annual reviews at hospital - next check (CT) April. I don't need any more problems as I have another cancer and am currently looking after my husband who is having chemotherapy for bowel cancer.
I am sorry to hear about your husband. It cannot be easy for you. Look after your husband but do not allow stress to get the better of you. I also hope your scan is clear again.
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