Squamous Cell Carcinoma of the Tonsil and lymph node cncer in neck - anyone got any experience of it please?

[UniversallyChallenged]

Would appreciate anyone's experience

Thanks

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Can you be more specific ??

Title should say cancer not cncer, sorry.

It's a particular type of cancer that spreads quickly. DH has it and asked me to ask for anyone who has had it/knows someone who has.

All neck lymph nodes are being removed and cancerous tonsil

So sorry uc no experience of that type of cancer but bumping for you.
Can they remove the tonsil ?

don't have any experience but this is an excellent site

I had Castleman's disease, I had all my lymph nodes taken away. I had a month of radiotherapy and despite the scar on my neck, I have never looked back.

Good places to look for 'solid' information that is honest while not being alarmist is cancer bacup and macmillan

Not heard of it, but wishing your DH well.

This explains my problem,

I have never really looked back,the scar was horrific,(it is when you are 30) but I have grown into the scar. IYKWIM

The alternative was death, soooooooooooo no choice really.

He goes in this week for the op.In for 10 days or so. Then radiotherapy and possibly chemo. Was told he has months to live if he doesnt have the op . All has happened in last month so still so shocking

The cancerbackup site is great- Macmillan nurse said about that too.

Bree - has it made you more prone to illness or have any side effects?

UC how shocking for you wishing you and dh well

Thank you ajandjjmum

They are removing the tonsil yes lilyloo, as that is where the tumour is. No idea how/why it started there though

Thanks andiem x

BB -that's really helpful. Five years free, oh i so hope so for dh. I havent cried yet -odd and a bit worrying for me- but if i think of my boys if something happens to him.......no, must stop that

Oh UC just take it a day at a time and try not to think the worst.Wishing you strength and luck to dh to get through this.

When I get the lurgy, it takes longer to shift.

But in essence I am fine.

Mine was complicated by the fact that it was neither here nor there. It was not malignant, it was not benign, but it was on the turn.

But if it had turned it would have been through me in six weeks.

It didn't and I am still here.

It is a very steep curve you are both on and I feel for you both.

Much love

LGJ

XXX

Have just read your posts to dh and he thanks all for their comments xx

sorry to hear about your DH i don't know anything about that type of cancer.

have a look on the macmillian chat forum i am sure they will be able to help.

My father in law had this last new year. they removed his tonsil and tissue from his neck, the scar site is from the ear to neck down and from adams apple to shoulder. He had radiotherapy afterwards, he had a special face mask made so the Radiotherapy hit the right spot. He had lots of mouth ulcers and a VERY VERY dry mouth, the hospital gave him lots of strong jel for his mouth ulcers, he constantly chewed gum and carried a water bottle with him. He could only eat soft food and ended up loosing 2 stone, (hes 6'5 and weighed 17 stone so he is still well covered) dp step mother would make lots of soups and broths, jellys and very soft food. He is doing well, and talks well, he has a slight lisp, (a bit like someone who has new teeth). The only thing which is slightly strange is he has half a beard. His right side (where the cancer was) obviously had loads of radio therapy there, and the hairs never grew back. Now as he couldn't shave whilst having treatment (and I can not stress highly enough DO NOT SHAVE) he looked slightly weird to go around with half a beard growth. Any questions you have that I can find out for you CAT me. DP dad is a tough old bugger, 40 on the coal face and all that, he is really fit and healthy, goes out with his dogs and shooting or fishing every day. Christ he even drove him self to radiotherapy and back every day for the 6 weeks he had daily radio therapy.

Thanks OJ xx

Wow Triflenorks - you dont know how helpful that is. Will read it to DH. He was wondering about a dry mouth funnily enough as he had read it might leave him like that.
He is only about 14 stone now so better start feeding him up as i think he will lose weight too - and i like a beefy guy!Thanks as well about the scarring. Will be helpful to warn the dcs what he may look like. xx

I have just seen my fil (dh works nights and he came to visit) I had a good old look. His scar goes from behind the ear (about half way up) to collar bone and then across the neck like I described it before.
FIL said, his doctor had originally thought he had a thyroid problem, and when they finally felt a lump in his neck and he went to hospital, his was not just his tonsil but his lymph nodes to. They took out his lump, then about two weeks later (after they had made his mask and he had been to the dentist) they took his tonsil and 57 lymph nodes in his neck as well as his jugular vein. We went to see him after the op (without the kids) and it did look a trifle scary as he had drains coming from his neck, but he was not in hospital for long. (about a week iirc) He had had a load of teeth sorted before the op so they would not be effected by the radio therapy. FIl said if they had found it early enough he probably would not of needed such a drastic op, but it had spread to his neck. he was lucky in the end as they had told him he would need chemo as well as radiotherapy. In the end he did not have chemo. It took a long time for his new teeth to settle in (he is 65) and for his skin to stop looking stretched. Oh, by the way they do not stitch the neck, they used staples. FIl used some bio oil to moisturise the neck after the op, and I think he also had some stuff from the hospital. he is well now, although the op and the radiotherapy has left him with a under active thyroid and some bowel problems. But, he has also been told that could be due to age.
When he was in hospital we took him some thin soup, thin smoothies and thin puddings. the op had made everything tight so all his food had to be thin. sorry that s a bit garbled.

I meant to say the op made everything tight and he had problems swallowing at first thats why he had thin soup, smoothies etc.

DH read through your posts triflenorks and they were so helpful thanks

Would you mind asking him some questions from dh?

Which was the most painful part after the surgery? Did he panic with the drains being in when he woke up? From what day after the surgery did he start to feel better?

Thanks so much x