Hi, my partner was diagnosed with squamous cell carcnoma following an operation on what surgeons thought was a cyst mid July 2008. He then had a petct scan on August 13th when they identified a primary site - his right tonsil which was confirmed during a biopsy. He began 33 radio treatments to the tonsil and surroudning lyphnodes on September 29th and apart from being sick from Chemo is doing ok although he has lost about 21 pounds in 4 weeks.

I have been hugely worried throughout as it took ages to diagnose his case (he initially had a neck lump in August 2007) and there was such a long wait - seven weeks - between the scan and the start of treatment during which time I assume the cancer could have grown. I dont really understand why they did not do a full tonsillectomy or a radical neck dissection.

At the moment I am totally incredulous that noone has taken a look inside his mouth to see if theradio is hitting the right spot. Is it usual: for an onocologist to make a radio plan and then not monitor the patients response through a look in his/her mouth throughout treatment?

I am particularly concerned at the moment due to his weight loss and the fact that his mask is not as tight as it was. I feel that the staff at the centre who are lovely are a bit ambilvalent about my concerns and think I am being neurotic. Do you think I have cause for concern.

Thanks
Cathy

hi cathy
i am sorry to hear about your husband's tonsil cancer.the radiographers should be checking his mask every so often but if it meets with their guidlines when they measure for where the radiation goes and its all ok then i would not worry too much.regarding your husbands weightloss have you spoke to his oncologist?if he cannot eat they could fit him with a peg and liquid nutrients and water could be given to him this way.the nutrients as well as lots of vitamins also contain a lot of calories.we are all in the same boat here either carers or patients so any problems just shout and if we can help we will.take care love shirl xxx

Thanks Shirl,

The fustrating thing is that he can swallow but has been having gastric problems throughout therapy and I imagine those would still be an issue if he had a tube?

Do you not think its strange that onocologists or their reGistrars do not look at the area of radiation during treatment?

Best

cATHY

Hi! Cathy,
I too am sorry for your husband problems and can assure you this is the best site to get comfort for your husband and yourself, as for the weight loss I too lost quite a bit during my treatment and was also concerned over the fit of the mask but was reassured that it would fall within the guidelines and so it did and my treatment went along fine. As for the weight loss? I had a PEG fitted early in the treatment as I was having trouble swollaowing & the PEG allowed me to be fed with liquid nouricement, this continued for about 3 months after my treatment finished and as much as I hated the PEG I survived and retained some of my weight(if you are up to it you could read my history).
Also be assured the staff at the hospital know what they are about and I am sure that your husband is getting the best of care.
One of the most important things for both of you at this trying time is to support each other as you will both need a crutch to lean on and there is no one better than your friend, lover, husband or partner.
"Stay Strong"
Trev

Thanks Trev, we are doing well supporting each other it is just unfortunate that I am a real worrier and thus tend to fuel his anxiety. Its just I know its going to get increasingly more difficult for him to eat and I would love him to avoid a peg tube if possible.

Fortunately he was very overweight when treatment started so the weight loss is not a huge worry except for the mask fit.

Glad to hear you are doing well.

Cathy

hi cathy
when i was having my 35 sessions of radiotherapy i had regular meetings with oncologist so he could check the areas that were being dealt with.does your man not do this?either way the radiographers should also be checking on his progress.i too have gastric problems cathy but i have the peg and that has helped me enormously.take care shirl xxx

Thanks Shirl. No we saw the onocologist for 30 mins for an initial discussion about the treatment and havent been able to get an audience with him since! We have regular meetings with the chief radiographer but noone has looked into my partners mouth since 4 weeks before treatment, started i.e. 8 weeks, which I think is very peculiar. I think I shall make a fuss again this week and demand that an onocologist takes a peek.

How are you now? Where was your cancer and when did you finish your treatment?

Cathy

Cathy,

my onocologist took a look in my mouth every week if i recall correctly. wanting to look at the effects of radiation on my throat and mouth. so much of the patients throats look like raw hamburger meet as he described it to me.

needless to say, when one's throat starts to look like raw hamburget meat, it is PEG time.

later, pete

Thanks Pete, very helpful. Makes me feel more empowered to demand someone looks in his gob!

hi cathy
i has base tongue cancer i had chemo and radiotherapy and that all finished in april last year.i too was very overweight and 6 months before i was diagnosed with cancer i had a gastric bypass to lose weight.if i'd known what was around the corner i would not have had it done.anyway i am in remission but i still cannot eat due to the problems with my mouth from the radiotherapy.i live in gosport hants and i had all my treatments done at st marys hospital in portsmouth and i go to queen alexandra hospital to see my oncologist.i notice you are just up the road from me.look after yourself shirl xxx

Hi Cathy, please pass on my regards to your other half. I hope this will be of interest to you.
Weight loss on patients does appear to be a major concern here. It is.

I feel sure you would be a good cook though, just a matter of time for the wanting to eat again arrives, sure you have a great receipe to get there.

Regards

Nigel