HPV16+ Tonsil / Base of Tongue Cancer - Pre-Treatment Questions

Hi, I had TORS surgery twice. The first operation went well but a scan showed the primary was a little deeper until the tonsils that had been removed. I had TORS again and it was removed with a good margin. My consultant managed to operate without needing to put a feeding tube in, and I didn’t lose any teeth. I didn’t need any chemotherapy or radiotherapy so cannot offer any advice on that, but you will have replies on here from others who can. I had to work hard to learn to swollow food and I did jaw exercises, there were times I felt low, and didn’t feel I was healing quick enough, but you will get there, and the support on here is phenomenal. I’m now back to cycling doing triathlons. Still having check ups but so far so good  x

Messina_Massala said:

• Several of you seemed to have feeding tubes fitted before beginning radiotherapy. What was the reason for this? Was it something done for everyone, or just your circumstances?
• Teeth. I think I’ll be lucky here - my dentist previously worked in an ENT speciality so gave me a good scan and an all clear.
• Neck lump. I had a really big, multi-node tennis ball appear on my neck in recent weeks. I mean, it was locking my jaw, impeding speech and generally very distracting. After surgery last week it has shrunk amazingly, back to something pingpong size in five days. Is this the steroids? (Oh, and those steroids are good. I’ll miss them!) I’ll ask the consultant obviously but I am really curious.
• Pre-habilitation - what do you wish you’d done more of before it all got hard. I’m pre-loading with good food but fear I am missing some balance here!
• I’d also love to know what questions i might forget to ask in the clinic follow up latest this week after the MDM. I’m taking a tenacious GP relative with me as brain / backup.

Hi and welcome...yo sound really prepared and taking a GP friend into your appointment is a stroke of genius. 

Feeding tubes are used because radiotherapy really messes with your mouth and throat...so much so that it's full of ulcers and it is really painful/impossible to swallow. Some centres place stomach tubes proactively, RIGs or PEGs, some reactively. I had a nasogastric tube placed in week 4 and had it in place for 8 weeks. There was no way I could even swallow water at one stage and I was pump fed high calorie high protein Fortisip at night. Feeding at night was a godsend. I could concentrate on keeping my mouth clean, pain relief and trying to get out and about without the endless chore of putting food up my nose.

Some people manage without tube feeding but not many.

Teeth...I got away without any extractions too

Is your lump a lymph node? then likely the cancer is there but the radiotherapy will take care of that. Yes steroids will shrink the inflammation round a cancer temporarily.

Prehab. Some centres run prehab clinics which is a good idea. I was fit before I started treatment but I just made sure I was as fit as could be. I didn't preload with food to gain weight. I was determined not to lose any and it worked for me. I kept on top of the pain no matter how much morphine `I needed and made sure enough "food" went down to keep my weight up. It's why I think I made a fairly uneventful recovery.

Questions. You seem to be pretty well informed over treatment so I can't think of any extra ones., except maybe how much RT and chemotherapy you're getting. I had no nodal spread so avoided chemo.

Just check how often you will have appointments with speech and language and with dieticians who keep an eye on how you are doing. You're likely to have maybe only one appointment with an oncologist while you are being treated and not see them again till six weeks after you've finished.

I'm sure others will chip with questions

Good luck and let us know how it goes

Oh and stick around. There’s masses of help here and no question is silly or out of place 

I would suggest leaving Google alone for now. Your best bet is here and of course your GP friend. 
Sadly many GP are pretty bad at recognising early oropharyngeal cancer symptoms which explains why so many patients are misdiagnosed for months on end. 
I hope your friend passes his knowledge on far and wide. We need to have our primary care properly informed. 

Thank you Debbie. Your blog has been invaluable, and I think it's really useful to hear from those who didn't go through the absolute worst of effects. My marathon running days are over but I have promised myself some more open water swimming next summer. 

Likewise thank you Dani. I'm curious about why it's decided that some people have the tube fitted by default before treatment - perhaps due to their existing health status? I know for sure there will be no regret in using one if needed, this is about getting through it. I'm pretty healthy at the moment. It's on the list of questions. 

My actual GP has been pretty good - I'd been in for a regular nurse's appointment and the GP was very quick to refer me after checking my neck lump. I had to do all the chasing of course, and I don't think I'd be where I am now if I hadn't stumped up for a private consult (after an inconclusive 2WW appointment with a registrar) with someone who turned out to be the regional head and neck lead surgeon, who in turn got me into his NHS biopsy clinic two days later. Getting on his radar has helped me, but I've always felt I was chasing for scan dates, instructions pre-surgery etc. Not ideal but so it goes. It pays to be a polite advocate for yourself.

I agree re: Google, aside from the trusted sites. I've stuck to whatever academic reading I can do to educate myself, so I feel quite well informed. My GP friend is actually my ex-father in law, retired a few years now, but previously a GP trainer and incredibly, incredibly tenacious (he contributed to the Shipman Inquiry). So overall I'm in good hands.

I will keep checking in. Thank you all.   

Messina_Massala said:

Likewise thank you Dani. I'm curious about why it's decided that some people have the tube fitted by default before treatment - perhaps due to their existing health status?

No it’s not that. It just comes down to centre policy. 

Hi, The reason people have a RIG or PEG feeding tube, is during chemo and radiotherapy, eating can become difficult or near on impossible. The feeding tube is used to make sure, you can get the nourishment, water and medication needed, during and after treatment. I would always advise people to have one, if it is offered.

Ray

You're doing everything right!

I haven't heard of 'prehab' before but I did try to put on weight beforehand. I was lucky not to lose any teeth. Also weirdly I did not get mouth ulcers or oral thrush, but my throat got extremely sore and my taste buds went so it was still very hard to eat or drink enough - and I hated Fortisips. My biggest problem though was vomiting, I ended up on every anti-emetic under the sun including I think a horse tranquilliser lol. I only had an NG tube from the end of treatment for about 5 weeks and it was a godsend, with overnight pump feeding. NG tubes seem to me much less intrusive than RIGs or PEGs.

One more thing, you mentioned open water swimming: I kept up my regular unheated lido swims until I got too sick and tired at the end of treatment, and I wonder if that's why I only got a sore neck at the very end (cooling effect on radiation burn?).

Wishing you all the very best with your treatment

Catriona

HinWelcome  from me can’t add much  to what the others have said. The feeding tubes are down to individual trusts policy. Mine was to fit retrospectively a ng tube if I needed it. I was fit and fairly slim at the start of treatment I kept up exercising gently in the lead up and once treatment started I make sure. Got out for a small walk daily. Plus did my jaw and swallow exercises which I still do daily even at post 5 years.
My ng tube was ny lifesaver I too credit it to me making a good recovery. Along with having a great team around me at the cancer centre and my support system at home primarily my husband did everything from ensuring I was fed and he did all the day ti day driving collecting meds and running the house. 

I had 7 lymph nodes affected so had to have chemo I had 2 of a planned 3 sessions which were 0 hour days in those day. Best advise take medication as directed if anti sickness don’t work keep on top of team by telling them they aren’t working. We’re all started on the cheapest one it seems in many cases. 
I too was HPV16 positive and my primary was found in my tonsillar crypt 

ask any questions in here someone will always get back to you. 
Hazel x

Welcome from me too. I had base of tongue & lymph node spread treated with 3 Induction Chemo and followed with Chemo (4/6) & Radiation (70 grays /30 days). You can see more detail on my profile. I'm now 3mths post Tr.

In relation to your questions;

I had a RIG tube fitted pre treatment - policy in my Cancer Center here in N.I. I'd have been lost without it but hope to have it out soon. I was told I could only have a shallow bath with water level below the puncture site, but showers are ok, so I'd check re swimming should you have one fitted.

Teeth - thought mine were fine, they said no, bone density wasn't good, 5 extractions. 

I wasn't on steroids but my lymph lump went down after the first Chemo & never returned

Food - I wish I'd eaten more of my favorite foods. Dieticians were all about "Calories & Protein" and "No weight loss". They didn't care what I ate and I was plagued with Chemo nausea, and ended up with ice cream & jelly couple of times per day.

Team Questions - would very much depend on what you already know & what gaps in knowledge you identify as you go along.

All the very best, Tina x