I was diagnosed at stage 3C in August and put on a 3 cycles of chemo debulk then another 3 cycles of chemo treatment plan. It all seemed to be going to plan, the CT scan showed shrinkage, my CA125 was down from 980 to 35 and all the fluid has gone! So I was booked in for my operation on the 30th of October. I went to the hospital was preped for the op but I woke up to find that the surgeon had decided not to go ahead as I had deposits of the cancer on my small bowel 😕 I can't even begin to explain how distraught I have been.

They have sent me back for another 3 rounds of chemo and will reassess after that.

Has this happened to anyone else?

Do you think I should discuss changing my chemo with my oncologist whom I'm seeing on the 18th? For something stronger. I'm currently on the taxel/carbon regime.

Any advice or information would be greatly appreciated.

17 Replies

  • Hi there ..

    I can very much understand how you must be feeling as can other women here. This is a friendship circle so welcome.

    Many women, diagnosed with Primary Peritoneal (an Ovarian variant) will find that the surgeon decides not to operate if there are a number of tiny implants, a bit like having measles, in different parts of the abdomen. After the cells have seeded, having an operation wouldn't remove the growths.

    Very often, these growths are too small to be seen by CT, so when the surgeon gets in, a decision may be made not to proceed.

    There are some advantages to this the most obvious being that you won't have to have the op and you'll be better placed to proceed with the rest of your treatment.

    Each of these implants has a blood supply which means the drugs can get to where they want to go.

    There's every reason to think that the drugs will bring a fall in the level of disease and the remainder being stable, meaning it's asleep for want of a better description. or you might get a complete clearing of it.

    It's a very lonely place being found to have this disease because not many people understand it even when it's explained but you're here now and you'll get a lot of support if that's what you want.

    There is an Ovacome helpline too which is staffed by nurses if you want to talk your situation through. Xxxx

  • Hi,

    I was chatting to a lady whilst having chemo and this had happened to her. She has since had her hysterectomy etc. Not seen her to chat to since but she looks fine from across the waiting room. X x

  • I can understand why you're scared. This hasn't happened to me, I had the op, but I've read posts from women in the same situation and the chemo did clear up the growths and they were stable for a while and then more chemo, or had an op after chemo finished. I don't think there is 'stronger' chemo than that though there are other kinds. I don't think they'll want you to change mid-way unless it's not working. But talk to your oncologist when you see her. I always ask lots of questions. Some assume you don't want to know if you don't ask. Good luck.

  • I was warned when signing consent that I could be an open and close Perhaps your gyn/onc did not explain this to you as they do not know what they will find.Fortunately this did not happen and the first thing I asked the nurse when I came to in the corridor was precisely this!

    Good luck with your further treatment x

  • Not sure whether my case is exactly the same as yours. I'm stage 3 serious. When diagnosed I also had a squashed bowel so my consultant advised having a stoma which was done before I started chemo. Carbon taxol like you. Had 4 cycles,then surgery where the bowel surgeon was again present. Had debulking plus a section of bowel removed. 2 more chemo and a scan which was NED! Due to have stoma reversal at the end of Nov. Perhaps I knew what was coming so more prepared but just to let you know that even though it's on the bowel there can still be a positive outcome. Wishing you well x

  • Thank you x was the cancer on your small bowel? Can they operate on that?

  • Yes they certainly can. My bowel was squashed and had cancerous cells around it. It was squashed because the tumour was pressing on it. For a while they were unsure whether I had bowel or ovarian cancer. It as only when biopsies were done that it was sorted. Although my case might not be totally the same as yours I should ask questions about what they can do about the bowel. It might be that they want the chemo to shrink everything more before they operate. Keep in touch if you feel I can be any help. I'm sure it's just time before they will decide to operate. If you are advised to have a stoma,not perfect but you soon get used to it. They need to do it to take the pressure off the bowel whilst the bowel recovers from having a section removed. All the best xx

  • I'm surprised u were offered surgery after three Clemos the usuall is six , I am the exact same I was devastated when told no surgery , the same dots if cancer , two years later on my third regime off Clemo ,I asked f it was stronger no just different ,every single person us different with this it's like a running tap , just go with it what else can u do annie

  • OMG Annie that just sounds awful. There is a lady on here on got a second and third opinion about surgery. Maybe an idea to that to get the op done.

    Wishing you all the best xxx

  • It may be that you could have weekly chemo as I did and that seemed to work better for me. I was told that my tumour was inoperable by two different surgeons. I sought a third opinion after having six cycles of chemo and this surgeon assessed the tumour as operable so it may be worth getting the CT scan reviewed by three different surgeons. Don't give up hope, keep going with the chemo and get a reassessment.

    My thoughts are with you.

  • Hi, thank you for the response. Are you now on more chemo?

  • Ei am on my third lot off Clemo , I'd asked for a second opinion after the second lot , he said wait and see what t scan shows , before the third lot I mentioned again and he said no point , I think it's dotted all over like porrage , just keeping it stable , he said what's the point in all that surgery they would not get it all u would end up back n Clemo anyway , I told him I am a pioneer , u know what my guy did think I would have gotten surgery in the beginning , he said think of it as a technicality they would not get it all X

  • I had to wait for my op due to it being on my liver. After six sessions of chemo they were happy to operate and got it all as it had all shrunk. I was devastated after the initial 3 that they wouldn't do the op but it did happen eventually, I wish you well stay strong xxxx

  • Hi, Carbo/taxol is what is termed as the gold standard within Europe of chemo for Ovarian Cancer. Your CA125 had come back down to normal level, I imagine you'll continue with this treatment and then they will operate. I had a friend who had to have all 6 cycles of chemo before her surgery.

    Don't despair. Good luck. Ann

  • Hi all - it's interesting to read all the comments - I am from Australia and from what I can gather it is standard practice to have debulking surgery when diagnosed - followed by dose dense chemo ie:- weekly - Carbo Taxol - 18 weeks - I was diagnosed 3C - and am now having Avastin for 1 year once every three weeks

  • Hi, have you had your surgery? I'm having my 5th cycle of chemo today and they have added Avastin to the mix in the hope that it will aid further shrinkage. I really hope they operate after my 6th cycle but I suppose I have to be mentally prepared incase they don't. Best of luck with your treatment.

    Asma x

  • Hello Asma - yes I had my surgery when diagnosed in April - things are going well - I hope your surgery happens soon - best of luck - the Avastin is going well for me - no reoccurrence at this stage and the only side effects are aches and pains - all the best xxxx

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