Up until about a year ago i used to post regular and read all of your inspiring posts, unfortunately I had a bad year not only with this big C but also with depression. I decided to leave the site as so many virtual friends i made on this site where gaining their teal wings,
Just before lock down I was starting to get back on my feet and even managed to visit my daughter and grandchildren, by April I felt unwell again, due to covid my 3 monthly appointment was via telephone appointment only, i discussed with my oncoligist the symptoms i was having.
Fast forward to July I called my CNS to say as I was feeling quite poorly bowels going from one to the other, severe pain and lost about a stone in weight. A ct scan was done that showed a large abnormal lesion in the left side of the pelvis and also two sacks of fluid also in the pelvis, i got a call from cns to tell me an mri had been booked for me, results are in a 2nd reccurence in the pelvis measuring 4.6cm. I am now waiting on a pet scan I have been told depending on the outcome of the pet, it maybe surgery/chemo and rads or just chemo/rads.
I can't believe this is my 3rd time in 4 years, I was very upset when I had to come off Niraparib due to toxicity last August, have any of you lovely ladies had pelvic surgery for recurrence?.
Ellsey xx
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Hello Ellsey, I can't help with experience of pelvic surgery for recurrence, but I totally understand where you are coming from, this has been a particularly hard year for all us Cancer sufferers, as if we didn't have enough to deal with along comes COVID, isolating us even more from family and friends, no wonder we end up depressed.
I am on 4th line treatment in just over two years.
I am glad you have reached out once more to this wonderful league of exceptionally brave, strong and highly informative women who will be here to support you always.
Goodmorning and well come back Ellsey. So sorry you've had such a rough patch. It is very hard when ladies we feel connected with gain their teal wings, so fully understand why you pulled away.
I am always being told no further surgery possible. I am on 4th line in less than three years.
I think you just have to allow the investigations to take place and see what plan they put in place.
It seems a shame your hospital didn't get you in sooner for scans etc. Mine has seen me through out the pandemic and although the consultations are by phone l have been invited in to see consultant when needed.
Good luck with your treatment and stay strong. Sylvia x
Thank you for asking Anne. I am now on weekly Taxol having become ill very quickly after they stopped my carbo/caelyx due to disease progression. A week in hospital getting 4 litres drained from a pleural effusion delayed the start of my treatment. Today l actually feel well, so fingers crossed Taxol is doing the job.
Hi Ellsey - it’s lovely to see you back on the site but I’m sorry to hear you are having a recurrence. I think we are treated at the same hospital if I remember correctly?. My last appointment was changed to a telephone consultation due to Covid but I contacted my CNS as I’d been having digestive issues and she arranged for me to go in so I could see the Dr. I was so relieved that I was able to see someone. I hope that you soon get a plan for moving forward. I don’t have any experience of pelvic surgery for a recurrence so can’t offer any thoughts on that one but I am sure that many others on here will be able to advise. Please let us know how you get on. X x
I hope you are getting the best care there. I’m still at St Luke’s so guess we are under different consultants. I had an appointment in August and saw a new registrar But still under my original consultant. I hope that since your post that your treatment has begun and that you are felling a little better now x x do let me know how you are doing
Local to me too. I am being treated at Mount Alvernia in Guildford at the moment, under Dr Essapen who I think may be the same consultant Ellsey has seen. I'm sorry to hear of the recurrence, Ellsey. I'm on second line at the moment but am not expecting to get long out of it
So glad to hear from you again Ellsey. I hope you don't have to wait too long for results of the PET scan - waiting can be so difficult. All the best, Helen
Hi Ellsey,
We have missed you!
I’m really sorry that you’ve been through so much this year and are now facing another recurrence. 🤗
You seem to have caught it quickly.
I haven’t had pelvic surgery.
I can totally understand why you needed a break from here, especially when we went through a bad period and lost so many wonderful women. It’s often heartbreaking on here.
It’ll be good to get the PET scan done and get started on your treatment. My heart goes out to you having to face into it all again. Look after yourself well during treatment. Set everything up to make it as easy as possible for yourself.
You could get a flower pot and plant a few snowdrop bulbs. By the time you’ll be finished chemo you’ll have snowdrops showing their little heads.
Look after yourself and let us know how you are getting on.
Good to hear from you Ellsey but so sorry about your current predicament. It was very tough last year when we lost many lovely ladies in the space of a few months. This really is a sh*tty disease. Over the years I seem to recall that a number of ladies had secondary surgery which was successful. Why don’t you ring the Overcome helpline, they may be able to advise you, their support is invaluable. All the very best. Jo 🌺🌼🌸🌻🌹
Oh Ellesey it’s lovely to hear from you but I wish it was in better circumstances! I am sure you will deal with which ever option you go for and I hope that you will ask for help if your mental health suffers while you are on treatment. Sometimes it can be difficult to tell if depression is playing a part or if the treatment is making you feel a bit rubbish. I found being in hospital for a long period affected my mood but once home I bounced back. Good luck with yours, we are always here for you xx
Hi Ellsey. It’s lovely to hear from you but wish it wasn’t because of recurrence. This has been a dark year and I’m sorry it’s been so difficult for you. I’m not typically prone to depression but I have been depressed by the combination of Covid restrictions and OC. I haven’t had secondary surgery but I think it’s a good sign they’re willing to do it. It means the cancer is very isolated. They won’t do it unless they think they can get it all. Keep us posted. 🌻🌻🌻
Hi,Like others have commented it is lovely to hear from you again but not in these circumstances.What a tough year you have had and I am so sorry you are facing a reoccurence .Hope they soon get a plan in place and start zapping the .......... out of existence.Thinking of you.Chris
Hi Ellsey, I’m one of the lucky ones so far. Three years clear after radical hysterectomy etc for ovarian cancer stage 3, clear cell and epithelial cells found and 6 cycles of Carbo/taxol. I see my surgeon every 6 months privately in the Beacon and to my surprise that hospital is still seeing out patients. I have a full physical examination including internal when I see him and that greatly reassures me. My oncologist is in James and I also see her every 6 months. This time (on wed last) I was only offered telephone consultation. This is not good. She asked if I had swelling, said she would need to trust me.. for fecks sake, as if things are not stressful enough without me having to be my own doctor! However she did say that if I had any concerns they would arrange to see me quickly. I’ve been in good form since my chemo finished, but since wed I’ve been right back when things were bad . Sorry not helpful for you but just to let you know i empathize re telephone consultation.
Hi Ellsey! It is good to see you back even tho your news is about recurrence. I understand about pulling back. All this is a bit much sometimes. We're here for you. Hugs, Jill
Sorry to hear what you're going through, it's hard I know.
I had second surgery 2yrs ago now for recurrence. It was confirmed via PET scan & a raised CA125. It was only one para aortic lymph node involved, was about 3cms. Surgery was quite complex as the LN was in a tricky spot next to major vein/artery. Had to have specialist surgery by liver transplant surgeons because of this. Didn't realise I was going to be cut from diaphragm to pubic bone (over previous surgery). Maybe they told me, but I probably didn't hear that. I was just so terrified at the time. This surgery was tougher and took me longer to recover, but maybe I expected too much as first surgery was no problem. I had surgery only (no chemo/rad) for this recurrence which was back in July 2018. However, I do now have a fairly large incisional hernia which I know is very common. I know this will have to be repaired at some stage. Don't really want to think of more surgery, but I am very grateful and lucky that this is my only concern at the moment.
Hope this helps. Sounds like you have great team and are considering all options. One onc who I don't normally see, told me at one of my follow up appointments that radiation therapy would also have been an option instead of surgery (but of course I had already had surgery by then). Not sure what I'd have done if I had been given two choices. Hope all will be clear for you after the PET scan. Wishing all the best, Ruth xx (PS, I live in Australia).
I have had surgery 3 times for pelvic recurrence - 2010, 2012, & 2013. I was very disappointed to need it, & the first time I felt very depressed for a while, knowing the beast was back, but I recovered. I'm sorry you are facing more treatment, it's always stressful waiting for scans & decisions. I hope they soon make the decision that is right for you. Di
Hi Ellsey. Sorry to hear you have been suffering. I’m also waiting on further chemo for recurrence. Trying to keep positive but find I’m having more wobbly moments that just creep up when least expected. Since diagnosis in Feb 2017 I had debulking surgery, carbo/ taxol, Avastin, heart issues, partial bowel obstruction, carbo/gem, ICON9 trial and now for carbo/Caelyx. It takes its toll doesn’t it?
Add in Covid and is it any wonder that we fall apart sometimes. Pleased to hear from you on here. The survival stories are inspiring but it’s ok to fear for our future and be able to voice that to others. Wishing you all the best Ellsey. We are with you.
I had a bowel resection for a recurrence in 2017 . I also had a further 6 round of chemo Taxol and Doxil. I didn’t lose my hair on this regime, and although not without side effects I think it was a bit easier than frontline. Not losing my hair was such a boost for me as I found that very difficult first time round. I was the started on a Parp inhibitor (Niraparib) in June 2018 and remain well so far.
Its daunting going into to this for the 2nd time but you can do it. Keep your chin up and remember it will come to an end . Best of luck.
Hi ellsey. I too have a large tumour/cyst combination in my pelvis, along with pockets in various other places. Mine is 9cm x 7cm. I have just seen Oncologist on Friday and been told surgery is not an option, as it is deep in the pelvis. I would have minimal gain, (because they could not remove the rest), with high risk. I am now on weekly taxol. I think you need to just go through the scans etc, and then be led by what your Oncologist recommends. Nest of luck. Therese
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