Secondary surgery and Heated intraperitoneal chemotherapy

[Dollie22]

Dear all,

Unfortunately it looks like I’m facing a recurrence even though my CA125 is only 18. Lesion on peritonium near liver. I’m devastated but need to soldier on . I’m just looking for positive stories of second surgery and perhaps heated intraperitoneal chemotherapy. Are there any recommended centers in the UK? I’m young in my forties and fit so I feel I’d be able for this treatment . I’m awaiting a biopsy to confirm recurrence but it looks probable . I’d appreciate any advice.

D

[Manchesterlady]

Hi Dollie, so sorry you think you have a reoccurrence, the waiting for results is awful, it’s what everyone dreads I’m sure . They do the treatment your thinking of at the Christie hospital in Manchester and I think at Basingstoke. My friends daughter has just had it done . Try not to jump ahead of yourself, not easy , I know . I’m the worst for that . Wishing you the best of luck and sending love .

Sheila xxx

[Dollie22 in reply to Manchesterlady]

Thanks Sheila

[Coldethyl]

Sorry that you’re facing possible recurrence - lady I know had the Intraperitoneal chemo at Basingstoke for appendix cancer and it seems to be working

[Dollie22 in reply to Coldethyl]

Thanks

[Yoshbosh]

Hi Dollie,

Basingstoke offer that treatment, but not for ovarian cancer, only a very obscure form of appendix cancer. I was a patient there originally so I asked about it and was greeted with a blank look. Don’t know why we don’t have better access to it in the UK when other countries use it routinely.

Vicki x

[Dollie22 in reply to Yoshbosh]

I must research it a bit more . Thanks

[sticky3006]

Hello Dollie22. I did ask about IP chemo at a recent Ovacome day I attended. The oncologist I spoke to said the two main reasons it’s not used much are that it is very toxic, therefore lots of potential side effects and also there is no actual evidence that it works. From what I’ve read it seems to be used a lot in the U.S. and their results seem to be good!

[Dollie22 in reply to sticky3006]

Thanks for that. Will try research it a bit more

[Seasun36-uk in reply to Dollie22]

I asked about IP therapy at a Target Ovarian Cancer study day recently.

The Consultant I asked was from the St Mary’s, Manchester. He said it held promise but not available as yet. Some types of bowel Cancer are treated this way and, as one of the ladies said, is far more common in the USA. Lx

[Tesla_7US in reply to sticky3006]

I had IP chemo. It got me over 20 months remission.

[Hidden]

Hi Dollie, I just wonder could this lesion be treated by the radiotherapy I had during the summer at the Beacon, certainly ask your Oncologist regarding this. Its Stereotactic radiotherapy which is targeted and does not damage the surrounding tissues, I needed it because recurrence wasn't to far from my only functioning kidney. I will pm you the consultants name,

[Dollie22 in reply to Hidden]

Thanks Suzuki. The proposed plan is chemo then operation followed by more chemo. Was the stereotactic radiation a success? I’ve heard about it but didn’t think they used it for ovarian cancer. It sounds great.

[Hidden in reply to Dollie22]

They don't normally use it for OC you are right and that is why vhi wouldn't pay at first., My last scan was stable and I am back for review in November. I do have pain but since this is my second lot of rt in that area, it is probably not surprising. They wouldn't do the rt in Cork because the tumour was near my only good kidney so this was the option I was given. The stereotactic is more targeted so doesn't affect a lot of other tissue, though I would argue that with them. I was only in Beacon for treatment and sent back to my Oncologist here in Cork when finished.

[ruthg55]

Hi Dollie ... sorry to hear you might be facing recurrence. I know how devastating it is. I live in Australia so my input re intraperitoneal probably not relevant, but I did have 3 cycles IP/IV in June 2015 & then 3 of IV only. It wasn't heated. Only one place in Melbourne offered it - the oncologist told me for it to be beneficial tumour has to be less than 2cm or, as in my case, only microscopic cells showing. It is very toxic, but here in Australia the day it is administered you also spend a night in hospital getting litres & litres of fluid via a drip to flush out through your kidneys. (Constant peeing!) I had 3 days of treatment over a 2week period, 1 week off and then start again the cycle. It is do-able. You're young. I was 60yrs, but fit & healthy otherwise, so I tolerated it okay.

The second thing is - I've just had major abdominal surgery for recurrence (first) in one of the para-aortic lymph nodes. They offered surgery (even though it was in a very complex place) because there was only one tumour. Is that an option for you - surgery only? I'm not having chemo as oncologist says no long-term benefit in starting chemo when there is nothing visible & my CA125 is back to 12 (was 125 before surgery).

Really hope that this is not a recurrence - your CA125 is low. Thinking of you. Love, Ruth x

[Dollie22 in reply to ruthg55]

Thanks so much for your detailed reply. It sounds like you got very good treatment. Hope you continue to stay healthy for many many years. Take care D

[Lily-Anne]

I had three surgeries and do believe out is better than in. If you read the results of desktop 3 it may help your decision

I had a lesion on my liver identified last year but because of the low glucose uptake just outside of the normal range they said it can be fatty tissue and not cancer. So if you’re having the op I would want a biopsy

LA xx

[Bliney]

For secondary surgery you could try Queen Charlotte's Hammersmith in West London. I had secondary surgery there after a second opinion. For IP chemo, it is offered at the Mount Vernon Cancer Centre in North London.

[Dollie22 in reply to Bliney]

Thank you so much for taking the time to reply. I hope you are going well. D