cancer surgery without anaesthetic

Hello eddiel

I am sorry to hear that you have cancer in your prostate, lymph, bladder,bowel and anus. Having a heart condition alongside this must make things more challenging. 

The best person to ask about this is your own doctor who has all your details however if you are looking for more of a general idea then you could give the Support Line a call and ask to speak to one of the nurses. They would be able to give you a general idea about the type of surgery that you may need and what the options are. The number is at the bottom of this and they are lovely on there.

An alternative is to post in the Ask an Expert section for the nurses. They would normally respond within 3 working days. I will pop a link below in case it is something you would like to do.

Ask a Nurse - Macmillan Online Community

Hope this helps a bit but if there is anything else you need please do ask.

Jane

hi jane2511 much appreciated a macmillan nurse  has been in touch and when i have every question i can think of ready will phone them. At GP tomorrow will ask them too and maybe call oncologist to get full results of my treatment .thanks again jane hope you are well. PS anal gland cancer not anus, that sounds awful, take care

Hi eddiel

Did you find any alternative option? 

Hi Rosalinda, had to re join the forum to answer you, but I don't mind, though major surgery was never an option, we were trying for chemo, had 4 minor Ops on my heart with nerve blocks which went well, but not quite well enough but my cardiologist and I haven't given up yet. Last years radiotherapy went better than hoped, All lymph node involvement has been reduced by at least 70% and bladder and bowel tumours are now NED and my anal/rectal tumour was nothing to do with my prostate cancer and benign, and had shrunk enough to be removed, though still terminal i have added 2-3 years on and still have plans B, C and D, and whatever new treatments which may come along, feel pretty well, grandkid number 8 due in a month and getting married in October, I hope you are also doing well, 

Eddie xx

Hi Eddie,

That is so kind of you... Thank you! It sounds as if your heart issues are different from mine – actually with me it is heart, lungs and history of anaphylaxis. The cardiologists are still investigating so am not sure which meds are contraindicated (given it depends on which potentially lethal arythymmia I might actually have – worst case scenario is overlap syndrome – and which may need an implantable loop to catch it with no result for couple of years!). Am under inherited cardiac following several TLOCs – driving license has gone on the back of all that and current heart symptoms – and sudden death of younger sibling (he also had rare genetic lung condition, but it was cardiac death not attributable to lung issue we now know).

Have never had GA previously and don't react well to meds generally including issues with locals. (A rare arythymmia would explain that.) So your post leapt out at me. Some of the spinal blocks might be okay, others not – if only cardiology could shine further light but tests take time and can be very risky in themselves. 

I really appreciate you taking the time to reply to me, Eddie and am delighted to hear that you are currently NED. I very much hope things stay that way for you.

As for me, to date I have only had to deal with pre-cancers (reactions to local anaesthetic worse each time) but now face surgery under GA for something that may or may not be cancer. My worry is that the surgery might be a waste of time and could kill me. It's not an easy choice to make because no one seems to have any experience of my particular set of health conditions – what you get when there are multiple rare issues at the root of things. I am sick of having 1 in 10,000 reactions to things – it's not just me though as same thing happened to daughters, who also have issues re anaphylaxis. 

I hope the wedding goes well and enjoy time with all those wonderful grandkids. Thank you again for replying. So lovely that someone would do that. Really appreciated!

Morning Rosalinda, I was happy to reply to you, though I am so sorry to hear about all your health issues, It's nice to talk to someone, who truly understands what having additional health problems with cancer really means. Rosalind I am so sorry to hear about your little brother, and that your daughters have anaphylaxis, losing family is so hard, I grew up in a family of 8 just me and little bother now. Re your arythymmia they will find out which one you have, I hope it' not scn5a, not being able to have GA started 10 years ago for me, I just wouldn't survive one now, so nerve blocks have been a blessing, you say you have never had a GA is that because you haven't needed one or due to risks it may come with, I do hope you get answers soon, I can relate to local anaesthetics, it would have to be life threatening to even be considered, I can't even have sleeping pills and the only pain relief i can have is paracetamol. this surgery you are having, they surely wouldn't do it unless they were pretty sure, would they?, your a braver person than me, don't think I would have a GA again, It's understandably a very difficult decision for you to make and the doctors lack of understanding must compound things, We do seem to have drawn the short straw regarding health issues, sending hugs and best wishes and will have everything crossed for you. I would be happy to talk anytime,

Eddie xx

Dear Eddie,

Yes, that is one of the things they are considering. The problem with Brugada is it doesn't always show on monitoring or genetically I am waiting to go back and discuss results of the genetic tests they ordered re my late sibling – but not sure if they did them or not as it was past the lab deadline for the sample and consultant wasn't sure it would be usable or not. The tests were for long QT and Brugada. Current DVLA guidelines are you can never drive if possible Brugada plus TLOCs and since my TLOC was sitting down in one instance (the other I smashed down onto the road) – cardiac consultant said almost certainly not normal syncope, but cardiac. Sadly, I can never drive again therefore. When I get the palpitations it is a very strange rhythm, but they are not frequent (thank goodness). Funny turns can be very funny turns indeed, but it is definitely not structural heart issue, rather the electrics that are awry.

I'm lucky I haven't needed a GA yet, have badly reacted to some meds I already tried which are on the exclusion list for scn5a (reactions so bad that now whenever I take a pill I haven't had before I always only take a quarter of a tablet!)

My family is now very small sadly and we lack males (got infant deaths higher up the chain re the boys, lot of miscarriages). 

It is very scary stuff especially with lung issues on top. (I get bad side effects with my inhalers, so only take them if no other option – again, they are on the list of culprits for the overlap.)

Sleeping pills and anti-anxiety meds caused massive problems in past – just one tiny pill, so my GP said "never again". Hence, my absolute terror of needing a GA because they have to give you those things I already know I can't tolerate. Like you, the only pain meds I can tolerate is paracetamol.

I've been told I will have to discuss everything fully with anaesthetist so I don't actually know whether I will be cleared for surgery or not. Possibly not. It's not a given by any means and I'm absolutely terrified of having one because of my past reactions. Where that leaves me now with the cancer scare I don't know. 

Yes, it is good that someone understands. Most people really don't. Though my daughters do because they can't take some of the same meds either. Lucky, none of them needed a GA yet with the crazy reactions we seem to get.

I meant to send hugs back too. So sorry you have to deal with stuff like this. It is a short straw re health. I found it initially very very scary not knowing if I would go out like a light again (when I had my sitting down TLOC I was sick and didn't feel it at all, no idea I had been unconscious as long as I was) and not come back. I have adjusted to it all now. I tell myself that I'm still here at least, when I might not have been. Try and just think myself lucky. I'm sorry you lost a lot of family too. 

Thanks for the hugs Rosalinda, but no need to apologise, you have got so much on your mind and some difficult decisions to make, I wish I could give you some useful advice, but I cant, I do have blackouts but have not been offered any diagnosis they only happen when I open my bowels, no constipation or pain, "I always bleed", and It's only occasionally. and not for long. Can I ask what cancer do they suspect and why and how can they possibly ask you to make such a decision on the chance they might find something, I do hope the genetic tests and talking to the anaesthetist help with making your decision, best wishes.

Eddie xx

It's gynae – I've got an appointment to discuss things further later this week. But, I also have FAMMM syndrome and have increasingly struggled with those surgeries (local anaesthesia). 

On the heart side of things, there is a possibility I have now developed AF or tachy-brady (sick sinus syndrome) also. That can go with scn5a. I noticed I had both Brady and tachycardia during the recent Holter monitoring – some quick pulse counts – but got to wait for full results. I get breathless and am having a lot of dizzy spells. There is also a familial history of clots (yet another surgery risk). 

Actually, writing all this down I don't think I'll get the surgery... It really has been extremely helpful writing this out. Thank you so, so much Eddie for helping me think aloud here.

I think I will just have to take a risk on the gynae front potentially – beg for further investigations without GA (though told last week it would be GA) – or try and wait a couple of months so there is a fuller picture re cardiology. It only makes sense to have GA if my life is clearly at risk!! It is silly to take such a big risk otherwise given the history of blackouts, etc. I also have volatile BP (can go with Brugada) which is just another complication. (Yes, a lot of very annoying complications, which are quite life-limiting overall)

Thank you so much for talking to me today. I am already feeling a lot calmer about things. I don't have family to discuss this with as my only sibling is an ostrich (decided that likely going to die before 60 and doesn't care as no children and no spouse). Most of my grandparents died around the age I am now or not much older – quite a few cancer deaths, heart, lung also. Parents did bit better though both had multiple serious/advanced cancers which they needed lot of treatment for. (But scn5a can skip generations, variable penetrance and impact).

Best thing is to enjoy every day. Tried my first outing with Age UK this week. Everyone thought I was helper not elderly person because I look relatively young but I was the only person who had insufficient stamina, had to beg to sit down because dizzy and spent the afternoon crashed out exhausted afterwards. I felt really embarrassed about it! But, that's life. 

Rose xx