Morning Ant . Sorry you find yourself here . You will fine me and loads of others in the chat room under Radiotherapy for throat cancer . You will get loads of help support and advice there . Everyone is lovely and super helpful . Regard Ginny x x 

Hi Ginny, 

Thanks for your reply, I’ve been and had a nose around and have already found lots of useful information.

I appreciate you taking the time to point me in the right direction.

Anthony

Hi Anthony,

Me too. Although I had a modified neck dissection at the same time as tonsillectomies.
I finished treatment in mid January and appear to be out of the woods with regular check ups ahead of me.  It is a rough road but found all the advice invaluable. All the medical staff involved were excellent and feel lucky to have access to such modern treatment.
The prognosis for HPV+ tonsil cancer is VERY GOOD and responds very well to treatment. So well that there are 'de-escalation' studies trying to ascertain  the optimum level of treatment and try to reduce side effects. I was enrolled on a study but because they found a few rogue cells on my other tonsil was dropped.

I found some of the blogs handy:  'Vatch' that used to post on this forum has an excellent account of his journey:       gammaraygary.wordpress.com

But also there are a few threads on here well worth sifting through. ie www.cancerresearchuk.org/.../squamous-cell-carcinoma-of-the-tonsil 

That one helped me along the way.
  
Otherwise and as many say is best to avoid Google which all becomes a little scary and depressing with its overload of scattered information.

I hope all goes well.

Paul.

Hi Paul, 

Thanks for your message and it’s great that you’re past treatment and things sound like they’re going well for you. 

Without doubt, the 10 days after after my diagnosis seriously tested my mental health and I think o visited some very dark places. This may be because my only symptom was the neck lump and I wasn’t expecting it to be Cancer. I’m having some very long sessions of Chemotherapy (10 hours) and then wearing a pump for 5 days after and I found the nausea, diorrhea and vomiting to be challenging and pretty constant. 

Can I ask Paul about your experience of Radiotherapy? I’m starting mine in 3 weeks, I have 35 fractions scheduled although my HPV+ status was unknown when this was booked in. I am seeing my Oncologist today but I’m led to believe the treatment will remain the same regardless of HPV status. I would also love to know which side effects you are still having now that you’re 4 months post treatment?

I hope you continue to recover well and thank you for taking the time to respond to my post.

Anthony

Hi Anthony.
I had to review my daily diary I kept during my treatment and try to pinpoint the most significant side effects of the radiotherapy. I understand that individual responses are quite idiosyncratic and variable. I get the impression that I got off fairly lightly. However there were days when I was so unwell and tired that I was not even inclined to keep a written account. It certainly sent me into a 'bad place' and felt like an insurmountable task. However, and always at the back of my mind, I knew that it was just a matter of doing the time and that all would come good.
Main issues I suffered were tiredness, constipation and bloated feeling, poor fluid intake.. so dehydrated and disinclined to eat during the last weeks of treatment. As everyone stresses the worst side effects continue for a few weeks after therapy. Indeed and almost on cue things all started improving after that fortnight. Pain was never a big issue for me and only really needed paracetomol. I still maintain that recovering from the tonsillectomy and neck dissection was worse than the radiotherapy. However, and must emphasise, I only completed 2 sessions of chemo as my oncologist stopped that knowing that I had a low threshold for discontinuing anyhow.  The first chemo was a walk in the park. By the weekend after my second session I was as sick as a dog and imagined that this must be what it is like to have heavy metal poisoning! The oncologist never told me why they stopped it.

I understand why people seem to avoid discussing treatment effects. I would need to swear to get across how unpleasant it all is but the moderators on here take a dim view of such honest expression. In response to the radiation my throat produced huge volumes of nasty goo which kept me awake most nights. That continues for a good few weeks after therapy and is very unpleasant. But, and as I keep stressing, I think I did well and it really was very managable. I had a PEG (gastric tube) fitted early on the advice of the oncologist. That was a good call. They gave me a pump and I trickled in lots of fluid every night and used it for Huel.. a complete food solution. Consequently I maintained my weight ok. I lost a bit but not the huge amounts reported by others. I like the lower weight I appear to have settled at... :))    I asked for my PEG to be removed and that was done about a month after treatment.
 

Long term effects? Yeah well.. the loss of taste is a bit mad. I am still missing that. However sweetness has returned. After four months I can pretty much eat everything but have to avoid anything vaguely spicy. Think vindaloo +++ for the effect on the mouth. ;) Otherwise all is good. No meds. Just watching and waiting for the next appointment. The only thing I can think of is fatigue and a dry mouth/throat.  But, and all going well, hope that those will diminish as time goes by. 
I hope that all goes as well for you. I have nothing but praise for all those involved in my own care. With such great expertise it helps a lot to get through all this stuff.
Like you I had a lump. It did nothing and I ignored it for quite a while. On my wife's insistence I visited my GP and within a few weeks almost everything was planned out to get me through this... It was just a matter of doing the time. Now everything is on the up and up.
 
Any questions.. day or night drop me a message and very happy to respond.  

Best of luck.

Paul.

 

Hi Ant

Am sorry to hear of your diagnosis but also see you have had a look at the thread I started titled Radiotherpay for Throat Cancer.

Nice bunch of helpful people and we all pull together as you can see.
Happy if you wanted to friend request in case you wanted a one to one chat more openly about treatment and more importantly, reocvery.

I have also listed a link to my blog that is on the thread and that i kept from the get go and its a warts and all personal journey along with quite a few tips It will also give you some indication of recovery process you mentioned and I am still in recovery phase just now even though treatment stopped Nov last year. Mainly fatigue still, but although we are all different, in the main the side effects in blog are pretty much same for most.
Have a look and let me know if I can help in any way at all

radiotherapythroat.home.blog

regards
Ian

Hi Ant this is Hazsl I am 8 month post radiotherapy for tonsil cancer given all clear in January of this year with 5 years of ent consults .

i have written a blog from diagnosis to present day

www.radioactiveraz.wordpress.com

i has 35 radiotherapy sessions and 2out if 3 chemotherapy I was 61 when diagnosed if I can do it anyine can I assist I am a wimp who cried when I broke a nail previously  

treat,ent is hard but soabke recovery can be long but again we are all different .

hazel keep in touch good luck  ask any questions 

Hey Anthony,

how are you doing?

Hope all is going well with the treatment protocol.

Paul

Hi Paul,

Thanks for your message. I am finding treatment challenging but manageable, but I am only about to start Chemo 4 of 5 and Radiotherapy week 4 of 7, so still a bit to go.

The changes in my taste are severe. I cannot even have food in my mouth as it tastes so unpleasant so I have been feeding with the PEG only for a week now. This has resulted in a weight loss so far of about 8kg since the start of treatment.

i am also starting to get sores in my mouth and am now finding it necessary to have some pain relief for these.

Theres not much to like about treatment and I wish I could go to sleep for s month to speed things up a tad!!!

Kind Regards

Anthony