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Had results today from biopsy on tonsil and now know its cancer, its all been really quick what with scans and hospital visits so not really had time to think about it now it's just starting to sink in but I'm pretty positive, I'm told its spread to a lymph node has anyone else had this 

HiAli

I am sorry to hear your diagnosis, but the first thing I would say is there is always hope. Al my friend here has the same and is currently undergoing all the treatment. He is having a six week course of radiotherapy and chemotherapy over most of the week meaning daily trips. The first thing they have to do is make sure you have no teeth that will get corroded by treatment so need removing first,. They then measure you for the mask this apparently is quite comfortable. They then arrrange the neginnings of the treatment. It will not be easy so you will need a good support system around you - family, macmillans, friends especially when you have down days. Some people loose taste buds during treatment some can find swallowing hard but if you look back on our talks there are mouth exeercises to do. 

Find all the exciting food things you love that are highly flacoured and stock up you will need to keep your weight up and need things that are exciting to make you smile. 

good luck i am here is you want to talk. 

stay strong x

No, just the MRI but he had a PET scan 2 weeks before he started chemo because the CT scan showed 'highlighted' chest nodes! It scared us to death at the time but they were sure they were just reactive nodes and the PET scan confirmed this.
 I asked the consultant today if he would be having anymore scans and he said only if they had cause for concern.

im sure everything will be fine, it seems every hospital trust does things a little differently.  I'll keep everything crossed for you, let me know how it goes.

Good luck x

Hello everyone,

I just was going through this post to get some insight into tonsil cancer. My granda (74) has been diagnosed with tonsil cancer (hpv positive) with one lymph node involvement. No spread anywhere else and the doctors have seemed very positive they can cure this from radiotherapy alone.

My question is why is he only getting radiotherapy? A lot of members on this forum with a similar diagnosis are having surgery chemo and radiotherapy or at least more than radiotherapy anyway and they have the same diagnosis - tonsil cancer with no spread and lymph node involvement - I can see some members even had tonsils and infected lymph node surgically removed.

my granda has his first meeting with oncologist tomorrow so I want to go in prepared with questions. I know the consultant had said due to my grandas previous heart attack and need for stents 15+ years ago and *slight* poor kidney function from years ago they may just tackle this cancer with radiation.

he did go in for a tonsillectomy 2 weeks ago but instead decided to only take biopsies and leave the tonsil as it allows for more treatment options.

any advice would be so appreciated. Is their any questions I should ask tomorrow with my Granda?  
 

Thanks 

Hi, my husband had tonsil cancer with spread to several lymph nodes, he had four lots of chemo and 6 weeks radiotherapy, no surgery just a biopsy as it had spread into the soft palate slightly.  It's now 5 months since he finished treatment and yesterday we were told his scan is clear and there is no sign of any cancer.  
I think the reason your Grandad isn't having chemo is because of his other medical conditions, the chemotherapy can affect your heart and kidneys amongst other things, they do lots of checks on these before going ahead with chemo.  Maybe his age could be a factor too, it's a very brutal regime when it's combined chemo/radiation. HPV+ cancer is very treatable, if the oncologist thinks radiotherapy alone will be enough have confidence in them.

good luck tomorrow, let us know how he goes on and if you want to know anything else just ask, for some of us it's all still very fresh in our minds.

Judy

Hi Judy brilliant news about your hubby am so pleased. 

I am now undergoing TB treatment and it is nasty, they are hoping this is the cause of the necrotising granulomatous inflammation in my throat and neck. the medication makes me loose some taste, have difficulty swallowing, so have special mouth stuff, made my throat feel like it had swallowed paint stripper so on high dose preds and increased omepraxole - only 5 more months to go lol. 

glad though all is ok take care xx

Elona 

Hi Elona, so sorry to hear this but it's good that they finally got to the bottom of your problems.  Is the treatment all medication? The side effects sound as horrible as ever.  Did you ever hear how Dragonfinch went on, I think he's the only one ive not heard about since finishing his treatment?

Hope you're feeling better soon

X

Hi Judy

Yes all medication now for the time being at least. 

Dragonfinch is fine now thanks for asking he has moved home and seems to be ok from what i gather. he was given the all clear a few months ago now. so good news for all. 

bet you must be releived now and hopefullly you can settle now too has not been easy for you i expect nevr is when your loved ones ar eill. 

take care 

am waiting to feel a bit better so i can get back in garden lol x

Elona

Hi Elona

Hope you are ok and coping with the side effects of the medication they sound brutal, the Macmillan nurse chased up my pet scan results as I'm having a lot of pain in throat and ear and its shown something in throat she said we can be cautiously optimistic but feel like I'm not out of the woods yet. How are the hedgehogs doing is belvedene ok

Allison xx

Hi Judy

Hope you and hubby are well, the Macmillan nurse chased up my pet scan results and its flagged something in my throat she said it may be nothing but appt brought forward for another scope and possibly cameras down under anaesthetic, trying to be positive but my throats been so sore I can't help but worry

Allison x

Hi Alli

im sorry to hear you're still having problems, when is your next appt?  Your MRI was only 8 weeks ago and it was clear so although we all know only to well it's really hard, try not to worry too much.  
As I said previously my husbands PET scan showed suspicious activity and he had to have an EBUS which is basically a scope which goes down the throat to the lungs and takes a biopsy, fortunately these were found to just be reactive nodes but it was a very worrying time.  
I'll keep everything crossed for you, please keep in touch.

thinking of you, take care x

Judy

Hi Judy

I know its never ending my appt has been brought forward the 10th November with oncologist and i have appt with ent to so hopefully it's good news and I can stop worrying all the time

Take care 

Allison xx

Hi Judy

I know its never ending my appt has been brought forward the 10th November with oncologist and i have appt with ent to so hopefully it's good news and I can stop worrying all the time

Take care 

Allison xx

Hi Alli

Hubby has had a letter this morning from Oncology stating that because he has recently had chemo/radiotherapy for cancer he needs to have an extra third covid vaccination followed by his booster! 
He's already had his booster jab so we are a bit confused Lol, I'm going to ring them on Monday for clarification but just wondered if you had been given this information? 
 

Thanks

Hi Judy

No have not heard anything I had my second jab 21st of June so thought I would call gp tomorrow about booster, will let you know what they say  sounds hope its just the one lol

Have a good weekend

Allison xx

Hi Judy

Spoke to gp surgery and they asked if I'd had a letter about having third jab and booster so they are doing that to vulnerable people, I havnt had one so just booked booster, spoke to Macmillan nurse and they discussed me at mdt meeting and they don't know whether I still have residual disease going on Monday to see doctor I asked my options if it is and she said immunotherapy which is not a cure just prolongs so a bit scared now , trying not to over think it and stay positive

Take care

Allison xx

Oh Alli, I'm so sorry to read thisI I really hope they're wrong, did they say how they were going to clarify this?  It seems strange given that your MRI was clear.  Could it possibly still be radiotherapy changes?  
you'll probably get a letter eventually, I spoke to my husbands GP and because he's already had his booster they say he will be called for the 4th dose in 6 months time.

I will be thinking about you on Monday, everything will be crossed, good luck
 

love Judy x

Hi Alli

I really hope your k and the residual is just lymphadenopathy left over not actual cancer. keep positive we are routing for you. sending positive vibes and virtual hug xx

This week has not been easy so far but am coping am hurting a bit today otheriwse ok thanks prednisolone makes me a little emotional sometimes but have halved dose now so should settle down. still taking all anti sickness etc 25 tabs each morning lol. 

I wasnt aware there is 4 vaccinations? i had the booster and so did the other half as we are vulnerable too and immunosuppressed but had not heard about four vaccines will have to look that up. arms were a little stiff and sore to touch otherwise no side effects hubby was more of a baby!! hehe. 

take care 

hope your ok JUdy x

Hi Elona

I am good, thank you, very relieved that hubbys treatment has been successful but if I'm totally honest there's just a tiny worry that sits in the back of my mind and prods me every now and again asking if the cancer will return! but I imagine everyone who has been through this has the same fears!

25 tablets a day, WOW, that's a lot of meds to keep on top of, how are you feeling? Those steroids really are a *** for messing you up aren't they, did you manage to return to work in the end?

What's happening in the world of the mini mafia, are they still around?

Judy xx

Hi judy,

Lovely to hear from you and glad you are ok. Try not to worry about whethert something will come back enjoy the moment of cancer free. 

Am getting used to the regime now of the tablets took time because the TB tablets have to be on an empty stomach then your not allowed to eat for half an hour then the steroids and other gastro tablets and pain klillers are to have with food so i have to work out breakfast and tablets lol. I managed to go back to work this week finally has not been easy and tiring but at least i can pay the bills!!! i can honestly say i am also glad it is the weekend lol. 

Mini mafia have been little so and sos recently i discovered a mound in the veggie patch under my butter nut squash and they decided to try and push up the primulas in the front garden they said it was no fun not being allowed to play with the hedgehogs in the car port or the dog so they had to find alternative entrances !!! the poor rose by the car port alsmost did not have any soil by its roots this had to be rectified quickly. the mini mafias builders had been busy with their highways lol shame they dont know a no entrance or exit sign. :) 

keep in touch x

Hi Judy

Hope you and hubby are well, had appt yesterday and doctor thinks that its ulcerated scar tissue but to be on the safe side I'm going for day surgery next Wednesday to have cameras and biopsy he didn't seem to worried though so feel a lot better now

Take care

Allison xx

That's fantastic Alli, obviously something you could do without but at least not what you feared.  
I thought about you several times yesterday but didn't want to ask just in case it was bad news and you needed time to process everything.

I'll keep everything crossed for next week but I'm sure you will be fine, hopefully you can get a final positive conclusion in time for a great xmas.

Good luck

Judy xx

Brilliant Alli all the best for next wednesday and fingers crossed but looking positinve and thats brilliant. 

take care x