I have an aggressive, probable ovarian origin, cancer which has been treated over the past 18 months with paclitaxel and carboplatin, Caelyx, and topotecan. The cancer is progressing. I have now been told that it will inevitably lead to a complete bowel blockage and have been offered a debulking operation in the hope that it will delay things for a period of time. I wonder, why now? I had thought surgery had been ruled out. I’ve been told I will probably be in ICU for a few days afterwards. It’s a daunting thought.
How have other ladies found this operation, it sounds terrifying, but also my best option.
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Fishfinger4
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Hi I had the deabulking surgery done January 2020 have to say once the anaesthesia hits you won't remember anything, was pretty drugged up, woke up in ICU was there for approx 36hrs (surgery was for removal of tumour lasted 9hrs or so ) I followed what they asked me to golden rule as soon as they can get you moving...get up and move ...left hospital 6 days later yes other issues arise such as constipation etc but you should be able to contact your CNS also you will have the wound looked at and the staples removed with a time element.
I had neo-adjuvant chemotherapy (chemo before surgery). I was told that surgery was only an option if the chemo shrank the mass and the lesions - it did! Maybe the same is true for you.
You will have to consider whether the op is right for you do arm yourself with as much knowledge as you can glean, ask lots of questions- and then work out the pros and cons.
I would (I did) take the op but only you can decide what’s right for you. For me they had a ‘liver surgeon’ on stand-by, but he wasn’t needed. I was told that I might lose my spleen - I didn’t; and that I’d wake up in the ICU - I didn’t need it even though the op was 10 hours and was very involved.
They tell you the worst possible outcome because they have to, but even if you do wake up with a stoma there are many on this site who cope with one.
I expected to have a stoma when I woke up, I didn’t but that was because there was too much seeding along and around my colon to make it a viable option. My surgeon said that my bowel was like sandpaper and it’s supposed to be smooth, all the sand granules were cancer seeds, however, that was January 2016 and I’m still here!
I did have 2 stays in hospital due to partial blockages but 2 years on I manage things better and have been ok. Whatever this horrid disease throws at you there is help to overcome it. I’m now on Paclitaxel 3rd line but I find it’s manageable and I’m still enjoying life and making plans for Summer holidays (hubby and I have a motorhome).
Ok, so your position may be really bad but try not to project worst case scenarios into your future - they most likely will never happen. Yes, the op will take a while to get over - your bowels will object to being poked about and may not work for a bit- or you will have to get used to a stoma. Every one of us has a different experience even though our experiences may seem similar.
You can read my story in my profile, my op was a long time ago; horrible at the time but ancient history now.
Whatever you decide I wish you the very best of luck with it. Please let us know how you get on.
Thank you for getting back to me Iris, it is indeed a hard choice. I think with me it’s that the abdominal masses are growing in spite of the chemo - carboplatin, paclitaxel, Caelyx and topotecan - and the surgeon must feel he has a chance of a reasonable outcome or he wouldn’t have suggested it. I had a bad allergic reaction to paclitaxel, so the idea of weekly dose was dismissed. It’s encouraging that you’re doing well after all this time, so thank you for sharing this with me. I think we’ve more or less decided to go ahead if they deem me fit enough - I’m 71, but was extremely fit and active before all this - as without it I can only see a fairly rapid and uncomfortable decline.
Please don't worry, yes its a big operation and yes l was in ICU for a couple of days then 7 days in normal ward and that was really trying to get my bowels & waterworks working properly. When l woke up and saw my dressing l thought
Omg but actually its just a thin line now hardly
noticeable. Believe you me lve been through worse and recovered really well. And ICU really is the best place when you've had a big operation you don't always need it but its one to one nursing ld been in ICU three times previously having had 3 Brain operations so l knew the routine. Nothing at all to worry about.
Good luck, be positive sending love & hugs SheilaFxxx
Similar to yourself I wasn't initially thought to be suitable for operation but responded so well to chemo with all the bloods etc showing no reason not to have surgery it was a shock when my Oncologist said she wanted to put me forward for debulking. Ultimately it's a joint decision from the surgeon oncologist and off course the patient. I was very scared but was able to talk through my concerns particularly about the length of time I would be under anaesthetic. I too was told to expect 3 days in ICU it ended up only being 24 hours. I can look back and see the operation as a major step in my road to recovery. As with everything in life the fear of the unknown can be harder to handle than the reality. Wishing you well and follow all the advice the medics and staff give you. X
Thank you Tillymint61, I have had a few positive replies so will probably go for the operation - I think it is my only choice since chemo isn’t working now. I was surprised to have been offered it now, after I thought it had been ruled out, but I suppose they must have their reasons in each case. It’s kind of you to take the trouble to reply, and I wish you well for the future.
Posted a couple of days ago about my op and recovery. I was terrified before I went, I nearly cancelled, I was originally deemed inoperable for over 12 months! I didnt end up in ICUhad 8 days in hospital, which I hated, not through being in pain or anything, just because of the noise and disruption. I am only on paracetamol twice a day now and probably could get away without taking it at all. Once you are on the ward get up and moving as soon as you can, you might feel you cant but every movement out of bed will speed up recovery. Im amazed at how I feel 14 days on, Ive been down to the shop for my newspaper today!
I had the surgery in Sept 2018. I’d go for surgery again in a heartbeat if it returns, it’s the best option for my low grade serous carcinoma that I can have as chemo isn’t effective . Hormone blockers do too but the side effects aren’t great for me. It gives you a whole new lease of life to have everything (or as much as possible) cancerous removed . Wishing you the very best
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