I had my first recurrence after 4.5 years. It was a shock as I thought I was going to be ok. Two tumours appeared in the pelvic area. The surgeon did her best and managed to remove both tumours. But I had to have a bowel resection as well. For that I had to have an ilestoma for six weeks. That was very frustrating and depressing. I am now in the hospital after the reversal of the stoma. Needless to say, I am very pleased but the surgery was not simple. I pray to God that I don't have to go through this experience again.
What are your thoughts on all the new trials and approvals that are going on regarding ovarian cancer? I think it is good news and I hope there will be a better way to deal with recurrence other than surgery ( in my case)
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Bluesparrow
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My surgeon offered surgery because it works well for me. I had a discussion with her regarding maintenance and she said there aren't any inhibitors for Clear cell carcinoma.
I will start Chemo next week. I will have six rounds. One every month. I am meeting the oncologist on Monday,post operation . I will find out more about the plan and update you.
Hello Bluesparrow I am really sorry to read about your recurrence especially after such a long time. Your surgery does sound very difficult and traumatic for you. This disease gives us many unwanted surprises unfortunately.As Lyndy says there are parp inhibitor drugs, such as rucaparib, which I was taking myself for 18mths. The side effects can be problematic but equally many women have been on them for years. As with everything it all depends on our own bodies. I suspect there will be tweaks to these drugs in future making them more sustainable for more women. Let us hope so.
There are many research projects and trials to look into so it is worth keeping an eye out for these. This is what what my oncologist told me at our recent consultation.
Wishing you very well with your future treatment. BB.
Hi. Sorry to hear about yr recurrence. I had my first recurrence after nearly 4.5years. I didn’t have to have surgery, it was resolved with chemo. I have had a second recurrence after about 18 months. Originally when I was diagnosed I trialled Avastin. After my first recurrence I trialled Cedranib. Then after completing chemo and being told I was NED in August 2013 I started a trial of Olaparib in January 2014, (after completing the standard chemo in November 2013) I’m still on this drug and still NED. Originally when I was diagnosed in Oct 2007stage 3b OC HGS BRAC2 I was told I had a couple of years. As you can see I am still here and doing well. I wish you well xx
I completely understand your disappointment. My first recurrence happened after six years and I was so sure I was free of this disease. I’m curious why your surgeon didn’t want to do radiation? I know I have a tumor growing in my psoas muscle which they plan to do radiation on.
Hi, So sorry to hear about your recurrence. I know your doctor will help you go forward. I made it 6 years before my endometrial cancer returned as a small tumor tucked away inside a pack of adhesions near my colon. All was removed this past April. It was a tough operation but no resectioning. Originally (6 years ago), I was Stage 2c. The doctor says I am NED now but he wants to treat it as a new cancer so he has scheduled me to take Taxol and Carboplatin again at a 20% percent reduction. He has mentioned me taking a "chemo pill" following my treatments (18 all together). I have been very active and continue to be as much as possible. I'm being told that exercise helps with fatigue. I'm grateful for a site like this one where I learn so much. For example: taking Claritin as a pain reliever for the "after chemo" shot. It's also encouraging to hear how many of these ladies take all of this one day at a time and go forward!
I'm sure it's been hard to wrap your head around a recurrence especially with 4 1/2 years under your belt we all hope and pray that we're the percentage that sail thru I don't have any experiences with parps but if you don't mind sharing your stage, grade and sub type High Grade, Low grade I wish you the best of luck.
Hi Bluesparrow, sorry to read that you have recurred, I see that your Oc type is clear cell, can I ask how you knew you had a recurrence please ? Did you have symptoms or was it picked up during a routine scan? Thank you xx
I went for a regular blood test for my CA125. For the first time, It had gone up. I thought it was due to an inflammation because I had been having strange bowel movements. It never occurred to me that the cancer had returned. Mine is stage 2b( surgically upgraded from 1b) clear cell carcinoma.
I’ve just had a follow up CA125 and I don’t tend to ask what the level is until my next apt as it would cause me more anxiety if it goes up ! I get 3 monthly tests at the moment. My type was also clear cell stage 1c with endometriosis, which I didn’t know I had ! I also have a hiatus hernia, GERD and IBS so do have different bowel symptoms from time to time! Thank you for replying and best wishes for your continued recovery xx
Yes. Sorry to hear about your recurrence. Like bananayo, I would like to know whether you had symptoms or whether the hospital recognised something was wrong. x
Hi Bluesparrow Thank you for sharing your experience when you are going through such a challenging time. I believe that it is actually really good that surgery was possible for your recurrence to bring you back to no visible disease Although I know no surgery is pleasant particularly when a stoma is involved I would take some heart from the fact the surgery was successful Re your question about treatments it has been my observation that often the same chemo as frontline is offered again and many people at recurrence seek an opinion with a Specialist centre to see what they have to say and also just last week there was a webinar on updates on Clear Cell The lovely Ovacome admin might be able to advise if there is a link to watch it One of the points in it was about getting molecular testing on tumour to see what treatments it might respond to This is not done as routine It can be paid for privately or is done as part of Bouqet trial Sorry for long reply Hope you feel better soon Post op recovery is tough!
Thank you for your reply. Whilst Ovacome haven't had a recent webinar about updates in clear cell ovarian cancer, lots of our past webinars about ovarian cancer research and treatment are available to view here on our website: ovacome.org.uk/ovarian-canc... . You can also browse our YouTube channel here: youtube.com/channel/UCO7_bZ... .
You also mentioned the BOUQUET trial in your message. If anyone would like to find more information about this trial, which is 'A Study Evaluating the Efficacy and Safety of Biomarker-Driven Therapies in Patients With Persistent or Recurrent Rare Epithelial Ovarian Tumours', please visit: classic.clinicaltrials.gov/... .
I hope this is useful. Please don't hesitate to get in touch if you have any questions or if there's anything we can help with. You can message us directly through this forum, email us via support@ovacome.org.uk or call our friendly support line on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm, to respond to questions about ovarian cancer, provide information resources or just have a chat.
Hi Annie It was actually via sharecancersupport.org I had thought it was Ovacome as it came up on my Newsfeed and I registered for it as it was about clear cell Thank you for all the links above Great amount of information
Yes, I am waiting for the result for Molecular testing. It takes approximately 6-8months to arrive. I hope that will help. For now, I am at home waiting to start Chemo. Thank you for your advice.
Sorry to hear about your recurrence and I know how tough that can be having a recurrence myself in March after nearly 5 years, honestly though I’d beaten it…but like you I’ve had secondary surgery and a brilliant oncologist and surgeon and after that I am cancer free again.
Mine was low grade so a different approach to treatment but I do feel well now, albeit still have quite a sore torso but it’s getting better I think! For me the surgery was hard but I was relieved to know no chemo needed, although of course I would have done it if necessary. I believe with clear cell they now offer a parp inhibitor as a maintenance treatment in the uk so maybe you’ll qualify for that as next stage of your treatment? I know it’s tough but you sound very upbeat and I’m sending you tons of hugs and supper for your recovery, you can get through this!
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