My mother recently had an attempted debulking surgery after her 3rd chemo session. Unfortunately, the surgeon said the dispersal and placement of some of the tumours meant surgery was not recommended, but he will reassess after the 6th session of chemo (she has been responding well to chemo, the surgeon said he saw many scars in her abdomen which indicated tumours sucessfully destroyed by the chemo). We are obviously disappointed by this bad news, and are feeling discouraged about the implications. I was wondering if anyone has had experience with surgery being deferred this much, and what advice they can give?
Many thanks
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kcha237
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Hello there, when I first saw the surgeon he told me that surgery 'might be' after 3 rounds of chemo, depending on how the scan looked at that time, but the alternative would be further chemo and then the debulking surgery. I think that you should take heart that your mum has responded well to the chemo - it will continue to do it's job and then the surgery will be more straightforward than if they had attempted it now.
So I wouldn't see this as bad news exactly, just a deviation from what you were expecting. Have trust in the team that they are doing the absolute best for your mum x
I agree with lovemyjackrussel, it is disappointing but it happens and the signs are that the drugs are working. I had to wait til after 4th chemo and was told that it would be all 6 as there was no room to operate by then with the surgeon! I got a 2nd opinion and paid private for the operation with Prof Christina Fotopoulou. She saved my life without doubt X good luck to you and your mum X
Thanks for the advice. Unfortunately, my mum is not based in the UK, so going to Christina won't be possible sadly. But I trust her surgeon, and that this is a necessary deferrment. Still, it was not good news, and I remain anxious.
Ask for a referral to Prof Christina Fotopoulou at the Hammersmith Queen Charlotte Hospital in London. She has a reputation for operating on patients that other surgeons have deemed inoperable. She is an aggressive surgeon but a wonderful human being. And you don't need to go private, all cancer patients are entitled to a second opinion on the NHS, from a major cancer centre. imperial.nhs.uk/consultant-...
Hi SopSinger, Thanks for your reply. Unfortunately, my mum isn't in the UK, so that won't be an option, but we trust her surgeon that this is a necessary deferral. I remain very anxious about it, all the same.
Hi, I was in a similar situation. I was diagnosed with stage 4b HG primary peritoneal cancer (paracardiac nodes) in January 2020. After 3 sessions of Carboplatin and Paclitaxel, I was given a date for surgery in early May. Unfortunately, the scan taken prior to the planned operation showed that while there was some response, it wasn’t adequate to perform debulking surgery. I was worried about this, but my oncologist reassured me that the delay wouldn’t affect my long term prognosis, and it was much better and safer to operate when the tumours had shrunk more. After the 6th infusion, the scan showed they were much reduced in size. The operation went ahead in July 2020, and was successful. Everyone’s response to treatment is different, and I’m not qualified to advise you, but I just wanted you to know that your mum is not alone, and in my case, the delay didn’t make any difference, and over 4 years later I am still enjoying life.
Thank you for your kind words, and i'm very happy to hear you are doing so well at the four year mark. May I ask how you have managed your maintenance/surveillance, and if you have any insights into your success on this front?
I was on Avastin infusions for a year (September 2020 - September 2021. Then a year just on regular blood tests (once every 2 months) to check CA125. In September 2022, I had a recurrence, and had a further course of Carboplatin and Paclitaxel. When this was completed, although I am BRCA negative, I was started on Niraparib in February 2023. I’m still taking that now, and have a blood test and consultation (either by phone or in person) with my oncologist every 2 months. To be honest, I think I have been lucky. I don’t follow any special diet, although I do eat a lot of fresh fruit (especially berries), this however is balanced by the not so healthy, guilty pleasures of chocolate, crisps and the occasional glass of wine! I go for a walk every day, whatever the weather, because my oncologist said this was the best way to stay healthy in body and mind, and mental attitude was important . I only walk about a mile (or on a good day 2), and although there are times when the weather is bad, or I feel tired, and I really can’t be bothered, I always feel better afterwards. I still follow the advice given during Covid to wear a mask if I’m among other people if I can’t distance from them (like in shops, or on the plane when I go on holiday), and make sure I am up to date with vaccinations. It is a nuisance and I feel silly sometimes, but one of the nurses told me that keeping free of infections like colds etc would help.
Sorry, this has been a long message, and probably not much help. Hope your mum gets the surgery, and all goes smoothly, but even if she doesn’t, there are lots of treatments available now. Although at the stage mine was at when diagnosed, the condition is incurable - with or without surgery - lots of ladies in this group are still doing well and I’m sure will be happy to reassure you.
Mine was deferred to after all six chemo done as chemo was working for me.
Surgey then was successful.
However, no one told me that I have to have two chemo after the surgery. I know it was for my own good but I was very upset and didnt want to lose my hair again but I didnt after all.
thank you for the feedback, and the reminder about the additional chemo. Yes, I always imagined post-surgery chemo to be a bit like vacuuming up crumbs after furniture is rearranged, so of course more chemo would need to be added if the surgery comes at the end. Definitely not what we wanted, but still, necessary all the same.
Thanks again, wishing you well in your own recovery/surveillance journey
I had 3 tumours on my liver and they wouldn’t do surgery. They were tiny said I wouldn’t survive if they removed them . Which wasn’t true . I saw a liver surgeon privately he said they could be removed. They then said they would do the surgery. The surgeon said if it was a sibling of his he would like them to have the surgery. Cancelled the surgery three times then scanned me and told me it was too late . I really feel they have shortened the time I have left . They left me waiting so long cancer spread and I now have only one kidney working. I have hydronephrosis of my right kidney. I asked for a second opinion and didn’t get one . I’m sorry now I didn’t persist. Would you consider a second opinion for your mum ? Sorry I haven’t anything positive to relay to you . But I’m sorry didn’t seek a second opinion at that time . I was to be reviewed 3 monthly due at the end of June this year and I wasn’t seen until end of September. Said they had a new computer system and appointments running behind . Just started chemo 3 weeks ago . That’s Northern Ireland. I really wish you all the best in whatever decision you make . Xx
Hi Kieran, thank you for the message. I am sorry that your doctors let you down, and I really take to heart your warning to advocate for your own interests when others dont treat you with urgency. I sincerely wish you the best and hope that this round of chemo will have a positive outcome.
Hi ,I dont know if this in any help but in 2017 I was diagnosed with stage 3 c ovarian cancer. I had several sessions of chemo and then saw the surgeon re debulking surgery.. I was told that though the main tumour had reduced there were to many nodules of cancer spread about and it would be imposable to remove them all. I had further chemo and was told i would have 18 months -2 years.
Well i am still here and am quite well, still driving and doing most of what i want to do. Christies hospital call me in for regular scans and I continue to be stable.
so dont lose hope because you never know how things turn out..
Thank you for sharing your story with me, and I am so pleased to hear you are stilll fighting. I wish you continue to prove the 'common wisdom' wrong for a long long time to come.
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