Husband - Tonsil Cancer and lymph nodes in left hand side HPV + Had MDT meeting yesterday with a much better outcome. Torn between surgery or CRT

Fry7b5361 said:

Will this make any difference to outcomes? 

Hardly, around 2% I believe. So not worth bothering about. 

Ok thank you. Also oncologist said that because he's only having one side of his neck/throat treated with radiotherapy, the side effects can be reduced so they don't fit a PEG in these patients as they usually don't need one and it will be last resort. Do you know much about that ?.Sorry for all the questions.

Fry7b5361 said:

Do you know much about that ?.Sorry for all the questions.

I do and please don’t apologise. 
You need to take the 

Fry7b5361 said:

they usually don't need one and it will be last resort.

With a very big pinch of salt 

His mouth is likely to get pretty sore and chemotherapy increases the effects of RT so make sure there is an option of a nasogastric tube. Make it clear that you won’t have him fighting to eat. If he can’t swallow he can’t get pain meds down either. Some people get away lightly but most don’t. I had an NG at the end of week three and it saved my life. 

I only had radiotherapy to one side of my face for jaw cancer.  I didn't know anything about PEGs or NG tubes and they weren't mentioned or offered.  I found that my mouth became extremely sore with ulcers and I had great difficulty eating although my swallow was not effected as the radiotherapy was aimed at my jaw. I ended up losing 10 k.g. It was not easy and I would have had an NG tube like a shot if I had known about it. The only way I got through i were strong painkillers and a mouth wash with Lidocaine in it that deadened my mouth for a few minutes so I could eat as much as I could before it wore off. Definitely discuss the option of an NG tube with your husband's specialist as it could make life a lot easier in the long run. Wish I had been better informed. 

Lyn

Thank you both. We both pressed on the issue, with my husband even saying I want one. And the oncologist was adamant he wasn't going to need one and if he did he was adamant it would be last resort. We expressed a few times in the meeting that it was our main concern but still he wouldn't budge. 

Fry7b5361 said:

We expressed a few times in the meeting that it was our main concern but still he wouldn't budge

Don’t panic. If he needs an NG to get fluid and pain relief down they can’t refuse. Just do your best. Stay with us 

Make sure you have CNS and dietician contact numbers. Make friends with them both ( chocolates never go amiss). 
Some oncologists just don’t have empathy. Their support staff usually do 

PS

the RT guys are the daily point of contact. I turned up on a Monday having crashed on the Friday before, unable to swallow anything,  and it was they who whisked me in for an NG after my session. 

I insisted on Carboplatin rather that Cisplatin and the effect is negligible.  Both are highly effective at what they do.  Carboplatin is marginally less effective but an easier drug to take so unlike Cisplatin where many don't complete the full course because of the side effects he will almost certainly do the full course.  One could argue that actually makes Carboplatin more effective!

There are some nasty side effects to all drugs.  I had a "cancer colleague" alongside me on Cisplatin and he was very sick.  I avoided that but found it difficult to eat a few days after having the infusion for around 24 hours.  Swings and roundabouts.

In the end I did get tinnitus, but almost certainly from the RT rather than the chemo.  Mine is a pulsating tinnitus probably caused by blood vessel damage rather than the ringing version.  I can live with that!

Personally I would have a PEG no matter what.  It is belt and braces.  I did have bilateral treatment as my tumour was just off midline.  I did not want an NG tube under any circumstances - personal preference.  I think consultants sometimes minimise the side effects - I can understand why - but it does not really help patients properly prepare for treatment.  It is not going to be a walk in the park, but he will get get through it and recover to a new normal.  Most of us get to a place where they are comfortable with their lives and are happy and fulfilled, but it will take a year+ to get there.

Thank you all for your responses. You have all honestly been a lifeline to us the last week. I think we'll raise our concerns over the feeding tube on our first session if not before.

Your husband can only see how he goes as he might be fine. I have had 2 lots of radiotherapy over time 2013 and 2019 and both times not offered an NG tube. I was better informed the second time although I was admitted to hospital with dehydration and I asked again about a feeding tube but was told that it was too late at that stage for a PEG as it involved an op. Still not offered a NG tube though. I was in hospital for a week and was taken to my radiotherapy treatment every day as it was in the same hospital. I did fare a little better that time and did not lose weight as the radiotherapy was more targeted.

I'm sure that my story does not reflect everyone's though so don't get in a panic. My surgeon was really lovely and supportive and he was the one to make the decisions and he did have loads of empathy. He just encouraged me to keep going and adjusted my pain meds which did make a difference.

Lyn