Surgery not an option...

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Hello everyone, newbie here but have read through lots of threads

Apologies for the long story, but am posting in case anyone can share some insight, or experience, or words of wisdom.

My husband was diagnosed in October 24 with a 10cm tumour, completely unable to eat or drink and had spread to nearby node, cT3N1M0. The plan was 4 FLOT, surgery, 4 FLOT. Spent December in hospital due to being really weak and following issues during surgery to insert a jej to feed him.

He tried but was unable to complete CPET before chemo due to weakness, having barely eaten for weeks, but no issues were raised about his heart/lung function then.

Chemo started in January 25, severe diarrhoea put him back in hospital for a week, and 5FU was reduced slightly for the remaining 3 cycles with GCSF introduced. Cycle 4 floored him and subsequently spent weeks in bed with leg, knee, ankle pain - no known cause. This has been on-off since chemo finished - some days he can get up and come downstairs, most days he either can't or just won't, some days he just loses control of all his bodily functions. Post-chemo PET scan showed the tumour had shrunk, and he can now eat/swallow, which is very good news as the Nutricia feed through his jej makes him feel sick.

Because of the leg pain, he was unable to exercise or get fitter. His post-chemo CPET was 'shockingly poor' and we have now been told he is too high risk for surgery, given the results of both CPETs, so potentially looking at chemo or immunotherapy instead. We are still waiting to hear from the oncologist about next steps as it is now 3 months since cycle 4. My husband would prefer to risk surgery, but that is not an option.

He is no longer working (whole other story...) due to the looming surgery and post-op recovery which now isn't happening, and he currently isn't well enough to start another job, so has nothing to get up for.

I've been juggling caring for him, his meds and injections, driving to and from the hospital for appointments and daily lengthy visits when he's admitted, and still working full time - but I'm shattered now, as I am still recovering from my own cancer diagnosis and major surgery last year. Luckily I am pretty resilient and positive, but he will not do anything for himself or to help, never has.

So.... if anyone has been in a similar position of being unable to have surgery I'd be grateful for the heads up on what ongoing chemo or immunotherapy looks like, how often it is needed, positive stories, expectations, chances of being able to work etc.

Seeing how he was after the minor jej operation, I can't imagine how he would have coped with Ivor Lewis surgery - so perhaps the non-surgical route is a better option for him.

Thank you for taking the time to read all of that - big hug to everyone going through this.

JPM 2 months ago

So sorry you and your husband are going through all this .From my experience supporting my husband’s through his OC treatment and surgery journey I know how difficult it is to support a partner with cancer .Not just physically but psychologically too .It’s exhausting !

I can only comment regarding your husband’s joint pain during chemo .My husband experienced this too .He said all through his chemo that his joints , particularly his knees and hips were ‘taking a battering ‘ This continued after treatment ended .He had scans and X-rays which confirmed he had developed osteoarthritis in his knees , hips and the top of his spine .The cause isn’t known but as he was a fit and active man before his illness , it has been suggested it could be a consequence of the FLOT chemo .Two and a half years later and his mobility is affected to a certain degree and he is dependant on regular pain relief during the day .Whether this is the case with your husband can only be determined with the appropriate tests .

My husband was coming up to retirement age after treatment had ended so due to the physical demands of his job he didn’t return to work .He hadn’t planned to retire as he loved his job, but he had to admit defeat and that came with its own issues for him too !
I contacted our GP and explained he’d become overwhelmed with it all and he was put on medication which helped .I think he just needed time to accept and adapt to his new lifestyle .

It’s a difficult journey that’s for sure .but with the right help and support you can come through it .I would suggest contacting your husband’s Clinical Nurse Specialist or GP surgery to explain your situation .I’m sure they could help .There are other members on here too who I’m sure can advise you on the non surgical route .

Wishing you all the best

J x

SoldMySoul 2 months ago in reply to JPM

Hi, thank you. I hope your husband is doing well now, two and a half years later, and you both have a chance to just 'be'.

My husband is also coming up to retirement age, but had no plans to retire due to his financial situation. I have just been told I am being made redundant too, so life is peachy.

I thought the pain in his legs was likely to be arthritis, and have now asked for him to be referred to a physio as he is so unstable on his legs. His 2 x CNS are not very helpful at all, neither is the GP - I have told them all he is in a downward spiral due to the pain and surgery not being an option. I nursed my child through cancer for a very long time, so none of this is new to me - just feels never ending.

Have finally got an appointment with the oncologist though, so that's positive and hopefully things will start moving again and we will be able to put a plan in place.

Thank you so much for taking the time to reply - I wish you both well x

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