Advice Please

Well, there is pros and cons to your granddad being his age.  The pros are that really nasty late onset side affects like ORN typically develop many years after treatment.  Your grandad may have passed on from other things before those develop.  The down side is that at his age,  healing and recovery will be slower and short term transient side affects my be worse.  I suppose he has to arm himself with as much info as possible, and take into account any symptoms he currently has and then decide whether to proceed with treatment,  or just opt for palliative care, and treat any symptoms as best as can.   I have a friend who knew a 75yo guy who was diagnosed with oral cancer.  They told him he would need bone and soft tissue cut out,  fibula free flap like I've had and radiation and chemo.  He just said no to everything.  No curative treatment at all.  He didn't really have any symptoms at the time,  just an ulcer on gum,  which didn't heal but wasn't giving him pain.  He just got on with life,  and took pain meds etc as symptoms developed.  In the end, he could only chew food on the other side of mouth to avoid making the lesion bleed, and he had his denture cut down so it didn't sit on it.  He had lumps in his neck, and pain in the joint of jaw,  But he said his pain was controlled well with meds.  Four and a half years after he refused treatment he died in his sleep at home,  from a stroke.  That was not long after he turned 80.  So one could say that for him,  he made the right choice.  He was a plumber,  and my mate had his own plumbing business,  and right up until a couple of weeks before he died,  he used to ring him and get him to go do small plumbing jobs that he didn't have time to do himself.  He always used to go do those jobs.  My friend said he never seen him in any obvious pain and he never stopped doing anything that he was doing before his diagnosis,  including drinking and smoking.   I thought his guy has got to be a total rarity though.  Apparently not.  Apparently 12.6% of people diagnosed with oral scc who opt for no treatment are still alive 5 years after diagnosis   I've had half my jaw cut out,  reconstruction with fibula free flap, and a large amount of soft tissue in mouth replaced with leg tissue, and am starting radiation and chemo soon,  and best odds they gave me was 45%.  So still more chance that I will die than not.  I'm 62, so I wouldn't consider going the no treatment option,  but if I was 75 or older,  I might.

Hello Looloolid

What a bummer. I’m really sorry to hear about your grandad.

It is impossible to offer advice in this situation. There are so many variables and everyone has a different perspective.   I can only approach it from what I have experienced and how I think I might have viewed things had I been your grandad’s age.  I was over 20 years younger and the treatment was very challenging….and reading other people’s experiences on this forum, I got off relatively lightly.  

I don’t think the medics do anyone any favours by not coming clean in advance about just how challenging radiotherapy is…and I make no apology for using ‘is’ rather than ‘can be’. I am a firm believer in telling it as it is, and trusting individuals to make their own decisions based on their circumstances, priorities….and to some extent beliefs, not least about quantity versus quality of life.  They get away with it by hiding behind the ‘everyone reacts differently’ mantra.  While this is absolutely true and a statement of the blindingly obvious, I think that the least they should offer you is a  personalised ‘balance of probabilities’ assessment.   I went into it as near blind as makes no odds.  I hadn’t found this forum at that point.

I don’t think it’s unfair to say that the treatment took over a year out of my and my husband’s life.  It wasn’t fun.  At my lowest point I asked myself ‘what have you done?’, which, given my normal ‘glass half full’ perspective was shocking .   We got out the other side and 18 months downstream, have pretty much adjusted to the new normal.  It hit us just how much of our social life revolved around food…the enjoyment of which is still for me a thing of the past.

I’ll be honest, I agonised, right up to the first session, about whether to accept radiotherapy.   Would I, knowing what I do now, have gone through with it? Possibly - given that I was a very fit 69 year old at the point of diagnosis and part of a strong partnership .  Would I had I been on my own and/or in my 80s or older?  Probably not. Actually, scrub that: definitely not. But, as I said earlier, we all have a different perspective on life the universe and everything.

It’s a horrible decision for your grandad to have to make, and for you to have to support him in making.   There are no right and wrong answers unfortunately.  I can only wish you all strength and send very best wishes whatever conclusion you come to.   More than happy to share/talk if it would help.

Liz 

Hello Looloolid, how is your grand dad, he must have started his treatment by now? Is he coping? How is the rest of the family? Hope you are coping and everything is going well. Hugs Mel  x

Sorry. I hadn’t picked up on the fact that your original post was a month ago. Must have missed it at the time.  Scrub my response.l
Liz

Thank you for all your replies and sorry for the delay in responding to you all. My grandad had a feeding tube fitted in his stomach two weeks ago which has not gone great. He cannot stomach one feed as it is leaving his bloated. The site is also not healing properly so he is attending the IPU everyday for cleaning. If anyone has any experiences with this kind of feeding tube and bloating or healing that would be great.

my grandad had his first session of radiotherapy today. I have read all your responses and they awful side effects but he was adamant he wants the treatment. I will keep you all updated over the next few weeks. Thanks again

I had a PEG feeding tube in place for about 6 months, acid reflux and bloating were  constant issues, slow overnight pump feeding helped, also sleeping upright with a support pillow, carers need to be on hand to help if pump stops due to blockages or feed finishing. Keeping the feed tube insertion site sterile is very important, I had a couple of issues with infections and needed antibiotics.

I had a lot of reflux and food rejection from the tube if fed by syringe. This was improved with a feeding pump overnight and a cocktail of anti sickness drugs. The pump allows the same type of food to be pumped in slowly (in my case 10 hours overnight). For the cleaning I haven't had problems but I use every day Prontosan to clean the insertion site. 

So sorry to hear that your granddad is having trouble with his feeding tube. What kind of feeding tube is it? My husband (still) has a PEG, a little hole going into the tummy below the diaphragm, he just needs to keep the skin underneath the security disk on the tummy clean,he had pretty much everything fed through this, we had a regular delivery of ABBOTT 'S ENSURES, which he needed to put through via a syringe, suggested amount was 6-7 bottles a day, he decided to come of them at some point and tried the HAUL liquid meals, to get the extra nutritions. It was the night feeding pump that gave him trouble, his body didn't tolerate that food, after each feed, he pretty much through it back up. It felt like having to get up during the night, feeding a new born. My husband did lose a lot of weight while he couldn't swallow food. It's still early, maybe your granddad's boddy is still adjusting to the 'change'. I am sure his medical team will look after him. Persevere and stay positive. Hugs Mel x