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Ovarian cancer

A group for anyone affected by ovarian cancer to get together, ask questions, share experiences and support each other.

Really Want to talk to people with clear cell Ovarian Cancer

No. of entries: 18 | Posted on 14 Oct 2013 3:00 PM

Really Want to talk to people with clear cell Ovarian Cancer

  • Hello, I find myself as a member on a forum that never in a lifetime did I imagine I would be a part of... It took years of suffering with severe gynae issues that included a permanently hard bloated abdomen, fibroids, then suspected endometriosis , followed by pain from adhesions... Basically, my Gynae team at Edgware & barnet hospital just did not have a clue...their diagnos changed with every appointment. been on painkillers daily since 2010. It finally, took a trip abroad and a chance meeting with a truly fabulous gynae oncologist for me to find out firstly I had a massive borderline terratoma on my ovary, that was in August. I came back with the news saw my gynae and was offered a follow up appointment for six weeks time, with no discussion of when the op would be! I spoke to people within some of the OC charities and decided that wasting time waiting was probably not the right thing to do,. So I decided to travel back abroad to have the urgent surgery. Post surgery, the pathology tests confirmed that I had stage 2 clear cell ovarian cancer... I cannot pretend I have not been in shock ever since I found out a week ago... Now back in the UK I am awaiting my 2week appointment with a specialist. Every minute that I wait is getting harder and as much as I am trying to stay positive it is so hard. Largely due to the fact that I have no idea what to tell my little six year old?.. She thought mummy went abroad to get better instead she commented that I looked sicker... I would really appreciate any advice and would love to hear from people that have or have had this type of Ovarian Cancer.... Thank you... Zee
  • Hi Zee,

    I am so sorry to hear what you've been through and your diagnosis. It is an extremely scary time and all too familiar that you had to be so proactive to get the right treatment. But well done you for not wasting time and going and getting that surgery abroad. You did the right thing. It's terrible that we have to resort to such drastic measures, but that's a rant for another day.

    I am nervous about replying to you because I've never replied to anyone before, but I felt that I just had to share my experience with you, in the hope that it may help. I am also stage 2 clear cell ovarian cancer, scared but very optimistic too. It sounds strange to say this, but we caught it early and have a chance of a cure. I was diagnosed on June 1st 2012, age 35, after a laparoscopic ovarian cystectomy for what had been assumed was a benign ovarian cyst. My hospital told me that it was a relatively rare diagnosis, so not much research into most effective treatments etc. They see about 1 case every ten years, so not very experienced with it either. I was offered a choice of fertility sparing surgery (I had yet to have children), or a full hysterectomy. Because of the choice, I felt like I really had to understand what I was dealing with, so did a lot of research. I found an article that had been published in Canada in May 2012, with results that show that surgery followed by 3 cycles of the chemo drugs carboplatin and paclitaxel and then 6.5 weeks of whole abdominal radiotherapy showed 20% overall survival benefit over 6 cycles of carboplatin and paclitaxel alone. It was difficult reading all the medical articles and I don't want to scare you, but I would urge you to discuss this study with your oncologist at your appointment. I went on to receive a full hysterectomy, 3 chemo cycles and whole abdominal radiotherapy. My treatment finished 11 months ago and I have had no significant problems since. I feel lucky that the study was published just the month before I was diagnosed because personally I feel that the radiotherapy has given me a better prognosis. I believe that I was the first person in the UK to receive this type of treatment in the knowledge that it was likely to be more effective than chemotherapy alone. I hope that this info is now widely known by all the medical oncologists throughout the UK, but it wasn't a year ago.

    Below is the link to the study. We can only access the abstract, but your oncologist should be able to access the whole study. Please don't read it if you don't want to go into the realms of prognosis statistics, because they can always be scary. But do mention it to your oncologist so that you can discuss the optimum treatment for you.

    Feel free to ask me any questions you want. Hugs, Sam xxx



  • hello sam my name is sue i am at victoria hospital mcmillian in blackpool when i was sent to my gynacologist i was told i had a cyst on each ovary and kept going back as you do i felt they were getting bigger because they cause me pain but i had another ct scan and they said the right size would be 5 cmtres   and then they would do keyhole surgery as it happens they went to 5cntres and the dr mr steel said he would do keyhole surgery but we made arrangements to go to hospital and when we got there mr steel wasnt in so they sent us back home my stomache was ballooning   up until i couldnt even cross my legs this was 2009 and in 2010 they took me in for emergency drainage and straight after that i had blood transfusion and bulk hysterectomy 3 days after that i had chemo for six mounths and ended xmas 2010 since then i have been going back and fourth to hospital i would love to meet poeple who have had same as me do you know how i dot hat i feel so isolated on my own as my husband and son dont like talking about it and i need some poeple that do i hope you are feeling ok yourself thankyou love sue if you would write back to me please do my email is  lots of hugs to you xxxxxxxxx

  • Hi,Sue.  I have had ovarian C  I had chemo then a full hysterectomy then more chemo.  7 tumors were removed, one as big as a grapefruit.  The C has returned 3 times since.  Twice on the stomach lining and once in a lymph node under my arm, which was removed - the lymph node, not my arm lol   I am now on my 3rd round of chemo since 2011.  I have had a terrible day today.  Very down, cried a lot.  My family are fantastic but I don't like to tell them too much of how I feel because I don't want to upset them more than they already are.  If you would like to talk to me about how you feel that would be great..  My email address is  Look forward to hearing from you. Sometimes you need to talk to someone who is in the same boat, so to speak.   Take care.  xx

  • Dear Sam,
    Thank you for sharing your experience. I am so touched that you replied.. Considering you never had before. I can only imagine how hard the decision to have the hysterectomy must have been... I know how hard it was on me when I awoke from surgery and was told they performed a partial hysterectomy... But my cervix was so badly damaged that I have convinced myself that not having a sibling for my daughter was probably worse for me than her. (i'm 41)If that makes sense. I knew the cancer was rare but 1 case in 10 years... I really hope they have more knowledge now.. I will print the report and take it with me so thank you for that. Glad to hear you have not had any problems since the chemo finished and pray that it stays that way for you.. I have so many questions but have decided to wait till after I see a UK specialist. Big hugs to you and if it's ok I may come back and ask you for more advice. Stay strong!! Xxx
  • Hi Sam Not sure if you're still on this forum but if you are then I'd really value your input. Or anyone else who has a similar diagnosis..... I'm 44 and also have stage 2b/c clear cell OC. I've just done 4 out of 6 rounds of carbo/taxol and have an appointment next week to discuss radiotherapy. Very mixed feelings about this.... Would probably mean being away from home for 5 weeks mon-fri just at the time when I was hoping to get back to "normal". Concerned about mid to long term side effects for bladder and bowels on top of the trauma they've already been through this year. Wondering if watchful waiting would be better and then hit any local recurrence with radiotherapy if it returns. CT scan all clear. Ca125 dropped from 90 to 14 so well within normal range. Wondering how best to make a decision ..... And what questions to ask the radio onc consultant next week. Thanks anyone for input on this rather rare OC. Nice to be special but....b.. R x
  • Yes, I'm still here and fingers crossed am OK. Sorry that you've had to find yourself in this situation, but am glad to hear that you have an appointment to discuss radiotherapy. The study my treatment was based on showed a 20% improvement in 5 year disease-free survival for stage 2 OCCC patients following chemo then whole abdominal radiotherapy, as opposed to chemo alone - so pretty significant. The way I understand it is that there needs to be no evidence of disease and the cytology negative for the whole abdominal radiotherapy to stand a chance and the goal is to try to get a long period disease free following front-line treatment. If there is evidence of disease then whole abdominal radiotherapy won't be appropriate as the risks outweigh the benefits (so no good for a recurrence scenario). As for hitting a particular spot with radiotherapy upon local recurrence then that's a question you can ask at your appointment, but it was pretty much spelt out to me that it was about doing everything we could up-front to try to prevent a recurrence in the first place and even (dare I say it) offer a chance of a cure.

    Another thing that was discussed at my appointments was just pelvic radiotherapy versus whole abdominal radiotherapy, but again the studies I read were firm in stating that pelvic radiotherapy may miss a significant portion of the fluid that is swooshing around in the whole abdominal cavity, so the potential to miss blasting some cells was increased. One thing I'd question is the length of your radiotherapy at 5 weeks. Mine was 6.5 weeks, with shielding of kidneys after a certain point.  

    With regards to radiotherapy side-effects - yes the potential list is quite scary, but so far I have not suffered any long-term problems. My bladder was fine during treatment, my bowels took a battering (diarrhea, but controllable throughout and helped with immodium) - it was just very sore, but it did settle down eventually. Otherwise personally I found the chemo harder than the radiotherapy. It took about 6 months to fully recover from all treatment.

    I'm two years out now and truly believe that the radiotherapy has been key for me so far. The first thing my oncologist told me on diagnosis was about the concerns of the effectiveness of chemo on clear cell so I guess I had that in my head all along. But there really aren't many of us stage 2 clear cell ladies and everyone is unique.

    Anyway - I hope that helps a bit. Feel free to get back to me with any more questions - let me know how you get on. Best of luck,


  • Sam thank you so much for your reply and really good to hear that you're doing well after 2 years. I will have a bit of a think and come back to you if that's ok? Been a very difficult day and need to process some of this. Thanks so much..... R x
  • Sam, sorry for chiming in but thanks for this info. Mine is mixed endometriod an clear cell and I'm now on 4th out of 6 cycles of carboplatin, taxol and a year of Avastin. My oncologist has not raised radiotherapy with me - not sure if it's because I'm mixed, instead of 100% clear cell but this something I will raise with him in my next appointment! - I was really looking forward to end of Sept when the chemo finishes, but if adding radiotherapy to first line treatment is going to raise the hopes of longer remission it is definitely something I would consider!!
  • Hi Amanda, thanks for chiming in. I'm interested that you're on Avastin. I don't think it's available in Scotland but elsewhere they do seem to give it either as frontline or for first recurrence. So many different things to think about. Can you tell me a bit about your decision to go on Avastin? Good to hear from Clear Cell-ers. I'm feeling less alone just being part of this select band! Thanks. R x
  • Hi Randoma To be honest I didn't give it much thought before going on Avastin. Three different doctors (two oncologists and my surgeon) told me what the standard treatment would be (Carbo, Taxol, Avastin) and I just took it from there, assuming that would be the best treatment available at that time (2.5 months ago). Whether it was because of my stage (stage 3 - lymph nodes in abdomen) I'm not sure. Cost was a slight concern initially as Avastin is expensive (and needs to be self funded), but I thought what use saving this money if I don't earn the years to spend it! So I just went on to research on all the side effects and ways to cope. Another factor is that there are supposed to be relatively few side effects from Avastin apart from bleeding. So far I've had occasional and mild bleeding in the nose and gum but (touch wood) that's about it. I still have 7 more weeks to go on chemo before turning to Avastin only for the following months so maybe I can update you later on how that goes!
  • Hi Sam and Amanda
    Just a wee note to keep in touch and thank you very much for your contact and input. I'm off to see the consultant tomorrow to discuss radiotherapy. Also need to have another chat about the last 2 doses of carbo/taxol as I've really struggled this round and the neuropathy is much worse so I'm looking to reduce the taxol dose (any advice?). Apparently there's no evidence that 6 lots is better than 4.....?
    Cheers and all the best to all. R x
  • Sorry to hijack this, just had a question about this RT option - I'd this something that's specific to clear cell cases, or can it be used for all ovarian cancer? My mum was dx in January with 3c ovarian cancer (5% chance of another primary as histology wasn't totally conclusive). They removed her ovaries, peritoneum and as much as possible but they told her that it had spread around her bowel and they couldn't remove it all, making it incurable. She had the same chemo as you mentioned, along with Avastin. Her blood levels went into normal range within two sessions. After she'd finished, her CT scan showed only miniscule abnormalities that they couldn't identify and believed could be scarring, and based on her blood results they said she was in remission, but would continue the Avastin for 12 months. I did research when she was dx and told her she shouldn't be taking her HRT - she stopped for a while but all get doctors told her that there was no danger and she should start it again. So 6 weeks after chemo finished it, her blood levels have been rising for four weeks. They now say it's probably the HRT so have made her stop that and have prescribed something to rid her body of oestrogen. I'm pretty angry and so is she. Anyway, I wonder is whole abdominal RT could be an option if these meds get her levels back down and her next scan is clear. It scares me how quickly it seems to be kicking off again after the chemo, even with the Avastin. Any info greatly appreciated.
  • Hi Cupcake. Gosh that does sound frustrating. From my reading the docs are starting to treat OC differently for different types so yes, the radio research Sam mentions is specific to Clear Cell. I would think that they could tell you which type your mum has and then you could do some more research. They wouldn't put me on HRT because it might "feed" the cancer so well done you for getting that right. But it does seem to be a little researched cancer in general so well worth doing your own reading so you can ask good questions. Best wishes. R x
  • Hi Randoma, how did the chat with your radiologist go? I'm going for my 5th (out of 6) cycle next Monday and really hoping that it won't be worse than the 4th. I began to have a bit of neuropathy this week but it wasn't too bad. My biggest problems had been lost of appetite, fatigue and drop in neutrophil, which means I might need a booster next week. I was told as much as possible not to reduce dosage and stick to 6 cycles, but my oncologist tends to be more aggressive. I haven't heard about evidence around 6 cycles not better than 4 but I guess it depends on individual circumstances and how bad the side effects are? Hope the neuropahty goes away and you get some clear answers from your medical team!