Debulking surgery options

Hi folks, I’d appreciate some advice please. My mum has ovarian cancer and is being treated between Buckinghamshire and Oxford. She’s currently on her 6th and final round of chemo. Originally we were told that she would be operated on (debulking surgery) between chemotherapies 3&4, with the remaining chemo sessions being used to “mop up” any remaining cancerous cells post-op.

However when the time came, we were told she was too weak / frail and the operation was too high risk. Instead, we were told the chemo would continue in order to give her time to increase her fitness to a level where they could more safely operate.

We’ve just received a letter from Oxford’s John Radcliffe hospital which explains that her surgery will no longer take place at Oxford due to “resource” issues with surgeons and nurses. Instead, the hospital is working to make arrangements with Northamptonshire General to refer her there.

My concerns are:

1. Could the original deferment of debulking surgery have been due to resourcing issues and how would this have impacted my mum’s treatment? Given that there is no guarantee that the surgery will remove all cancerous cells and that due to NHS funding 6chemo sessions are all that’s been budgeted, there’s a risk that she’ll be left with malignant cells even after surgery and therefore the risk of the cancer returning is extremely high.

2. Does anyone have any idea how good the surgical teams and consultants at Northampton are? I can’t find any comparitive success rates or reviews online. The Oxford team was highly recommended and we fought for her to be treated there.

3. Where are the surgical teams with the highest success rates for ovarian cancer debulking surgery based? We’re in South Bucks but willing to travel into London or out to Berkshire or Surrey or wherever else may be best for mum.

Any help would be great. Thank you.

[Katmal-UK]

Hi. Sorry to hear your mum is going through this. 6 cycles of chemo is the standard number of cycles and I dont believe that this is a budget issue but what is considered the best number of cycles to have maximum effect. Has a CT scan at the end of the 6 cycles been mentioned ? You might want to consider asking for a second opinion or contacting Ovacome for further advice. Unfortunately I cant comment on the hospitals in your area as I am

in the North West but hopefully someone will come along to offer advice. All the very best to you and your Mum. Kathy xx

[Hidden in reply to Katmal-UK]

Hi Kathy, Mum had the CT last week but I think result will be sent to Northampton MDT rather than Churchill, where she was originally being looked after. Appreciate you're in a different part of the country so thanks for replying.

[Naimish]

Hi. Reckon that you check out the CA125 levels and CT images post chemo.and then take a call

Naimish

[Hidden in reply to Naimish]

CT's been done. Not sure when they'll look at bloods. I think I'm also worried about stuff being delayed or lost between Trust sites because the NHS doesn't all work off one centralised or even regional reporting system. We had issues just between Mum's chemo at High Wycombe and the initial surgery assessments at Oxford. Missed at least two MDTs before starting treatment.

[Naimish in reply to Hidden]

Hi....in case the foll is of any help .

My wife had debulking including hipec before her six rounds of chemo , carbo platin and paclitaxel IV as well as simultaneous IP.

Naimish

[Hidden]

I was also advised that I was not well enough initially to have debulking op, instead had 3 chemo which, due to a last minute operation cancellation due to a lack of ICU beds, turned into 4 chemo then finally had debulking done, I will have two more chemo to complete treatment. The Royal Marsden in London is a leading hospital for cancer treatment which is where I had my op, also the Christie in Manchester. You can go to your doctor and ask to be referred to wherever you want. Who ever you see make sure it is a gynaecological surgeon, as according to Cancer research they have the best results compared to General surgeons.

Good luck with finding suitable treatment for your Mum. Lyn xx

[Hidden in reply to Hidden]

I don't believe debulking was ever under consideration as a first option. We were always told it would be 3 cycles of chemo followed by the op and then 3 more to "mop up."

I used to work for RMH so I'm familiar with them. I'll suggest the referral option to the family but I think it depends on things like case load and the availability of the surgical team, ICU beds, etc. Biggest concern right now is not being able to afford a delay as Mum's cancer is quite aggressive.

[jenny8c]

All I can say is that I had my debulking operation at Oxford and the surgeons were fantastic. They did have problems with resourcing intensive care as they have trouble recruiting and retaining nurses as the accommodation costs in Oxford are so high.

I had 6 rounds of chemo before my op because one op was cancelled at the last minute after 4 rounds due to no beds (ie nurses) available in ICU. I tried to get a 7th chemo to 'mop up any cells left behind' but my oncologist refused saying 6 was all my body can take. Well surprise surprise, within 6 months it is back with a vengeance. I will never know whether a 7th would have made a difference but I would have felt better if I had have had it. I could never understand the logic of saying you should have the debulking after round 3 or 4 then more chemo but if you have the debulking after 6 you don't need any more.

Good luck with your mum - I would fight for Oxford if you can. xxx

[Neona]

There is a video of a lecture on youtube biven by professor Gordon Jayson showing that the best results are from the major cancer centres i.e. Leeds, Manchester and London- UCLH/Royal Marsden. However I had an excellent surgeon in Cornwall and had a very successful operation. When the cancer came back during chemo I went for a second opinion privately at the London Clinic and was referred to UCLH.

[Maus123]

Hiya. I'd go for a big cancer center as well, for surgery. I'm not a medical expert but personally I believe it's not a big difference whether you have the surgery at the start, in the middle or the end of chemo.. as long as you are strong enough for it and it is possible from a disease spread perspective. Keep in mind the chemo drugs do not just poof and disappear, on the day of the last chemo. They last for weeks and months afterwards.

Your mom can have her tumour marker checked regularly.. if that is a good indicator for her.. and have scans as well, to confirm status as needed. Hopefully there is no need but should she recur, she can probably have chemo again. So I wouldn't worry too much about the order of treatment, just see that I'd get her surgery in a big c. center and not wait too long. Good luck and a successful chemo and surgery. Maus

[CharlotteSo_UK]

Hi. My mum had her debulking performed at Northampton, but this was 8 years ago next month. Mum had a great gynae onc at the time but I know she moved on not long after. Not helpful I know - sorry.

If I could offer some advice though, it’s to push for a leading centre. I’m sure we may have had more grace before recurrence if mum had of been referred to the marsden earlier. As it was, after mum not following the ‘usual path’, she was referred to the marsden as Northampton told her that ‘they didn’t really know what to do with her’.

Mum has been under the RM since 2011 and the quality of care far exceeds that you get at a local, generalist hospital. They have teams that specialise solely in gynae cancers, focussing on ovarian, and I think that alone gives you comfort that you are getting the best possible care.

Keep us all informed xx

[Seasun36-uk]

I’d go for JR at Oxford. Having said that, I have no complaints at all about my 2 Surgeons at Cheltenham General Hospital!

I wonder if soon....PARPs will be available after surgery/chemo? I hope so 🙂

Linda xoxo

[MissEd]

My mum had her debulking at northampton. They are well known for their gyne stuff. She also had 6 chemo then surgery and 2 more chemo after that, so maybe they will consider that.

[Lily-Anne]

I’m under Northampton General. They recently received a big injection of cash and have had the oncology unit updated and renamed to take into account their working relationship with Oxford and Leicester. The best oncologist is Professor Agarwal who lectures at Imperial every week, a researcher and a very nice man

I’d recommend him

LA xxx