H

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 guys.

So, MRI went ahead on Wednesday. I had my results yesterday.

My treatment appears to of been successful and there is no sign of any Cancer.

Absolutely overjoyed. 

Keep your head high guys. This thing is beatable!!!!

Hi Sam

what lovely news, I'm so pleased for you. My hubby is 6 weeks behind you, he sees the consultant again on Monday and he is going to look into his throat with the camera as the last time we saw him a month ago he was still healing then hopefully he'll arrange his scan, keeping everything crossed.   His eating is very similar, he can manage most foods but has to have lots of water to help it go down, spicy food tho is out for now. We are going to ask for his Rig tube to be removed if his weight is stable although he still needs to drink one or two Ensures a day to top up the calories.  His only problem atm is tiredness, he gets tired really easily, do you?   Hope the others are doing ok and that we can all get the same fantastic results.

Take care

The fatigue went after about 4/5 weeks post completion. I feel as back to normal as I can in that respect. However I imagine we have an age gap and with me being 33 I think it's allowed me to recover from that a bit easier perhaps?

Diet wise, things are more or less normal... like you've said, spicy is a big no no!!! And I have to have a drink with what I eat.

Hi Sam

That's amazing news I'm so pleased for you, I have my mri on the 31st so fingers crossed

Alli x

Yes I imagine it is a bigger advantage, hubby's 60.

Hi 

Sam am over the moon that you are all clear that is fantastic! you certainly must be on cloud nine. 

Judy hope your hubbies scope goes well on monday but glad he seems to be doing ok. 

Glad your doing ok Alli. 

am now being sent through haematology because CT scan showed enlarged lymph nodes on both sides  so they want verification it is not lymphoma nut thankfully they are pretty sure it is not. they say I have now got latent TB so if haematology agree it means six months of treatment. so on the up. 

hope everyone is enjoyng the sun 

keep strong and keep smiling 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

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 Alli

hope you are doing ok just wanted to let you know hubby had his results today, they said he had a really good response to treatment, the MRI was clear and there is no sign of any cancer.  We are absolutely delighted.  The swelling I told you about below his ear has gone, they think it was a blocked saliva gland which is common due the radiotherapy damage.

Its fantastic that we've all had such positive results isn't it.

Take care

Judy x

Hi Judy

That's amazing news I'm so pleased, I had a pet scan last week so waiting for results I'm hoping its just precautionary did your husband have a pet scan as well as the mri

Allison 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