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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

Hi Alli, 

just wondered how you are doing Have you had your MRI scan yet?  The thread has gone quiet lately so not sure what's happening, I wonder about Dragonfinch too.

My husband has an appt with the consultant on 27th Sept and he's going to organise his scan then.  Fingers crossed we all get positive results.

take care

Morning Judy

Lovely to hear from you, I had my mri on 31st August and got the results while I was on holiday last week and it was clear there was no sign of the tumour so a great end to the holiday, I'm still having problems though mouth is finally starting to heal but now have lymphedema and awful heartburn but I guess it will settle eventually. How is your husband feeling hope your both ok, let me know how the scan goes ill keep everything crossed its clear but I'm sure it will be

Good luck and take care

Allison x

That's fantastic news, really pleased for you

hubby has lymphodema too in his neck, we're waiting for an appt with the lymph nurse.  He found a swelling just below his ear the other day which is tender and concerned him but it's gone down a bit now so hopefully it's nothing serious.  We did contact our CNS and she was going to speak to the consultant to see if he wants to bring his MRI forward so that he has the results for his appt on 27th but we've not heard back from her!  We only have this week then we go away for a week so I doubt we'll get the scan any earlier nowHe's eating and drinking fine but still having 3 ensures a day for the calories.  

Hi Judy

It's no fun all the waiting I had my mri earlier than expected as I only finished treatment 16th June, good news that your husband is eating normally and the ensures are great they are full of vitamins, I think recovery takes a bit longer when you get older I'm 53 and I was doing really well but I'm having problems now I noticed it was painful below my ears and jaw now I have swelling under my chin which is worse early hours and in morning and makes it difficult to swallow I'm going to the Maggie centre in clatterbrige on Tuesday so hopefully will get some advice about it I've also lost hearing in my right ear, I sound like I'm falling apart I'm supposed to be reassuring you lol I really do feel good in myself, try not to worry and have a lovely holiday

Take care 

Allison x

Snap! He has also got hearing loss in his right ear (the same side as the cancer) I've just made an appt for a hearing check with the audiologist, he says it's like they feel blocked.  He finished his treatment on 18th May but from what I gather from other peoples experience he's had more chemo, (2 cycles consisting of 6 hours of 2 drugs then 4 more days of continuous infusion via pump at home, 2 weeks off then same again. After that he had 2 more cycles on day 1 and 21 of radiotherapy.  He's loads better now and actually starting to get back to 'normal' but obviously we can't completely relax until we've had a positive scan. X

Hi Judy

That is a lot of chemo no wonder its took a longer time to get back to normal, I was supposed to have 2 rounds of carbaplatin but only had one on the first week because it made me so ill I was in the hospital for 5 days to get a flare of my ulcerative colitis under control the consultant thought it would just make me ill again so I just had the 1 and 30 rounds of radiation, I think in most cases the hearing loss is permanent so they will probably give him a hearing aid I've just had mine and its been a godsend I was driving the kids mad lol

Take care 

Allison x

Hi Judy

Hope it was good news when you went for appointment, how are you doing

Allison x

Hi Alli

we feel a lot more at ease after the appt, he had a couple of worrying issues, one was a lump/swelling on the same side as the cancer under the jawline and the other was a couple of small lesions at the back of his mouth but the consultant thinks the lump is a blocked saliva gland damaged by the radiotherapy and he wasn't concerned with lesions at all.  He had a good look down his throat with the camera and is happy, he says there's slight radiotherapy changes still there but even to me it looked healthy.  The deafness again is probably the chemo, he has an appt with audiologist next week.  He had his MRI yesterday too and we are going back for the results in 3 weeks, it would have been sooner but we are going to Malta in 10 days and I don't think they'll phone with results as we have always had face to face consultations with everyone from the start.  Thank you for asking, hopefully we will get the news we want xx

Hi Judy

That sounds promising and hopefully the swelling will go down soon, I'm the same I now have swelling below left ear which is painful on the same side as the cancer was I originally had it on the right but that went down and i still have a patch of what I think is Mucositis on left side of throat but doctor wasn't worried, I hope you have a lovely holiday try not to worry 

Take care

Allison x

hi everyone 

sorry to hear people are still having problems or effects from the treatment and I really hope you get sorted. it is such a long road for you guys for recovery. Judy enjoy your malta trip. 

take care 

x

hi everyone 

sorry to hear people are still having problems or effects from the treatment and I really hope you get sorted. it is such a long road for you guys for recovery. Judy enjoy your malta trip. 

take care 

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 Alli

So sorry you are still having problems let hope it is little and nothing just time taking because you had really bad lymphadma. fingers crossed let me know how you get on, will be thinking of you. 

thankfully anit emtics are helping stop me being sick and starting to eat again so thats good. the nausea is however an on going thing. Nurses hope once I get over the two months initial treatment and start the next lot i should not be so bad. 

Belvedine is doing really well bless her and the four babies are too they are nearly ready to go but am unsure whether to release or not at moment as they are still inexpereinced and young. 

keep faith girlie you can pull through this xx

Hi Elona

The medication your on sounds awful I really hope it gets easier soon, are you still having to work as well. I bet its easy to get attached to the baby hedgehogs I'd want to keep them lol so glad belvedines doing well. I'm trying not to worry I was so relieved after the mri, just taking each day at a time and trying to do lots of nice things with family and seeing friends which has been lovely

Take care of yourself

Allison xx

Hi Aliison

I think you are being amazingly brave and glad your able to keep yourself occupied as we have said many times the waiting is the worst. fingers crosed. 

have been off work but due to no money have to go back monday. dreading it. 

going to try and have some fun if possible thibnzs weekend but vaccines tomorrow booster covid and flu then dekivery  o we shall see. 

there is apparently a diet called inflammation diet - maybe somethging worth you looking at?? keep thinking of looking at too is supposed to help with our conditions. 

try to enjoy yourself this weekend xx

Morning Elona

Hope your having a good weekend its hard to be enthusiastic when you feel sick all the time hope it wears off soon, is there any benefits you could get so you could stay off until your better. I don't feel very brave but I'm still smiling just lol 

Allison xx