Any ladies had cytoreductive surgery for recurrence?

[Towergirl]

lovely ladies,

Can anyone help me with decision between radical 10 hour surgery to remove Spleen and near by tumour also Liver scrap or just put my faith in Chemotherapy this time with Carly?

A year ago my cancer came back after over 4 years NED. I understood the CT scan had caught it early and went for Chemotherapy 6 cycles. CT scan, cleared all but a very small amount left on the Spleen.

From June started on Olaparib 600 g per day which should have reduced/kept at bay the cancer left. Just got CT scan results yesterday the cancer has grown over Spleen and a new tumour near stomach. PARP Olaparib hasn’t worked for me! I’m BRAC2 it should have done!

To decide again - operation or just Chemotherapy (this time will be with Caely).

How did your operation go ?

How have you managed without spleen? How did the operation change your quality of life?

My oncologist thinks that the operation is risky not convinced all cancer will be removed That Chemotherapy is the best but operation could be done?! I’m in good health age 76.

Hoping someone who has been in the same situation and chose to have the operation can help me. I would have the same surgeon who did my original debulk surgery who does this operation but I don’t know how the patients was afterwards.

[Itha]

Hi, I had a second radical cytoreduction (spleen not involved) for first recurrence and spend 10 days in hospital. I have had a second recurrence now and after discussion with my surgeon (who is a professor and specialised in OC), we agreed to a 3rd cytoreduction in 2024. Waiting for the tumour to grow bigger. I will have a CT scan in Feb to see progression of disease and if any other tumours are also visible. This will be followed by chemo (not sure which yet)

I am BRCA1+. Lynparza worked (18 months), but did not work after 1st recurrence. I did try it (self funded) for 3 months. The side effects was quite bad this second time.

My Prof (surgeon) does think surgery is still a good option for me. This time my tumour is pressing on my ureter (right side) and my kidney was being compromised. I had a stent placed in Nov which saved the kidney (without functional kidneys you can not have chemo)

I am still on Avastin generic (Bevamyl - better side effects for me and more reasonably priced) to slow down growth and so far my quality of live is good (improved significantly since I've been off the Lynparza)

I don't know if this helps, but my understanding was that the surgery does help (if operable). I asked the question about it to my Prof. She explained why but said it is my choice

[Towergirl in reply to Itha]

hi Itha, thank you for replying. It is my choice too and it’s hard to make, I went with just chemotherapy 1st recurrence. Wasn’t confident in the operation then,surgery could be successful but oncologist wasn’t sure and I’d have to live with no spleen. Same decision to make again because Lynparza didn’t work .

Best of luck with your operation in the new year. Have a Happy Christmas xx

[Itha in reply to Towergirl]

Hi, it is hard to make. I trust my surgeon (Prof) 100% thus I am guided by her. My oncologist keen to start treatment sooner but my Prof says the more we can delay the better. No proof AT ALL that earlier treatment leads to better results...you just use up your options quicker.

I guess the issue for you would be the impact of no spleen? And if you are strong enough to recover relatively quickly from the surgery?

[Towergirl in reply to Itha]

Hi Itha,

I am looking into paying for Avastin, nhs will not fund after initial treatment even if not given then. Looking to find how to go about this

My Oncologist says in my case it might be beneficial but my local trust will not allow oncology ward to be use for private IV. I’m running out of maintenance options, Olaparib totally failed and surgery not an option as spread to liver and spleen to complex.

I notice you’ve mentioned Avastin generic Bevamyl being cheaper, I would be grateful to know how you are getting this and who provides this service with idea of cost, hoping you would be kind enough to reply.

Hope you’re doing well and operation was successful. 🤗

[Itha in reply to Towergirl]

Hi. I am based in South Africa. I have no idea what the process in UK would be. Sorry!

[lesleysage]

Hello Towergirl, I had secondary cytoreductive surgery for tumour of clear cell recurring in the lymphatic system close to my aorta and renal artery. My oncologist told us it would be far too risky, chemo was the only option and then reconsider surgery, but she had previously agreed that carbo-taxol was not particularly effective on clear cell and, like you, I felt fit and well. I took a second opinion with Professor Christina Fotopoulou and within two weeks her team had successfully removed them both; no recurrence since and this surgery was in 2013. My 'story' is part of the Ovacome Information sheet on ssecondary cytoreductive surgery: ovacome.org.uk/secondary-su.... I was 67 years old at the time and in good health too.

Prof Fotopoulou is known to many on this site as her skill, with those of her team and top flight surgical facilities, are now world leaders. imperial.nhs.uk/consultant-....

Ovacome Support Team could be useful in guiding you to your best option for a second opinion as they are up to date...and I am, thankfully, now behind the times! Warmest wishes. x

[Towergirl in reply to lesleysage]

Many thanks for your reply and links a great help I do need to get more information. After what I thought was routine meeting with my consultant I was shocked hearing cancer had returned only 6 months after finishing chemotherapy, I now have so many questions. Prof Fotopoulou sounds amazing, Your story is inspiring thank you for sharing. Happy Christmas x

[Sybil71]

Hi Towergirl,

I had my spleen and gall bladder removed during my first OC diagnose back in 2021 when I was 50 years old (also some parts of colon, small part from my kidney and of course uterus an ovary removed). 10 hours of surgery; at the end HIPEC applied. 10 days in hospital. I had 6 cycles of chemo after the surgery. I didn't have any difficulty because of spleen removal.

2,5 years later I had to undergo a surgery again this time for the 70 cm removal of small instestines. Now I'm on chemo again. Once it is finished, I'll be continuing with Avastin. But what I understand if the tumor is removable, surgery is the best option instead of only chemo.

Best of luck to you whatever your decision is.

[Towergirl in reply to Sybil71]

Hi Sybil71,

I am 75 years old maybe that was why surgery was offered but not encouraged said, I would be fearful of coughs and colds without spleen! Don’t think it will be on offer again. I didn’t have Avastin when diagnosed 4 years later I wasn’t allowed it by NICE guidelines. This week I’ve left a message asked my oncologist to apply from the NHS England central fund, Fingers crossed. Hopefully both our chemotherapy will be successful. xx