Im a 47 year old male, ex smoker (quit ten years+ ago but used NRT for ages) who was diagnosed with tonsil cancer in may, it has spread to my one lymph node- but the hpv16+ status is apparently a good thing.
Ive just finished my first week of chemo and radio and so far dont have many symptoms (dry mouth and mild discomfort in my neck)
But i know that things are set to get worse, and that the chemo might kill me (infection) that the radio might kill me (infection and necrosis of the jaw) and that even in a best case scenario ill end up with a feeding tube etc
All this scares the life out of me, to the point where i feel almost as if i would trade 'possibly' being cured with all the guaranteed problems and risk of sudden death, for a couple of good years making the most of the time i have.
Added to which i am constantly in fear of covid when i go to the hospital. I see patients and even the odd staff without masks every day i attend radio.
Has anyone considered this option? and how do they deal with family if so? I know how my family would react and it would not be good- but it is my body.
I know many probably think i am insane to even think of this, it is just the fear of sudden death that is terrifying me.
Hi TrevW, as Hazel has said it's better they have found this 3rd tumour now rather than later, it sounds as if you are in good hands. Treatment is so advanced nowadays and i know there are different drugs and treatment since i had my first encounter (2008 ) with cancer and the success rate is very good plus you will be treated by the best and very experienced N.H.S staff who do an amazing job. Try and put the negative thoughts into the back of your mind as i think Dr Google gives of false or misleading information. I'm sure your oncologist will be spot on with you at your next meeting giving you the advice you need. I'm so pleased you are feeling a lot better and clearer about it all compared to your first post, well done. We have a great bunch of people on here who will do their best to help you with this journey. Wishing you all the best.
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Hope you are feeling a little more positive about things.
However don’t discount your feelings and try to just put on a brave face to your family as you need back up from them.
With my first experience with cancer 6 years ago I tried to be stoic and did not ask for help and felt really isolated. I did get very down and it took me some time to get back on top of things. It wasn’t a good time for me.
This time around I spoke to my surgeon about my feelings of apprehension about my treatment and also that I was feeling very depressed about having to face the whole situation again.
He was so good and did not rush me on but listened to me and was so encouraging. He advised that I get some counselling and even some antidepressants if required. He got in touch with my GP and organized an appointment. My GP was also really great and listened to my concerns and I am afraid there were a few tears on my part. She said she could organize some counselling for me but I found that just having my concerns acknowledged by the professionals and them listening to me made such a huge difference.
I did ring a nurse from the Cancer Council which is the equivalent to MacMillans here in Australia. She also was a wonderful listening ear and gave me some good advice particularly about the radiotherapy which was what I was really dreading.
I did not go down the track of antidepressants as I found that talking about it had really helped. However that did not mean that it was a golden bullet. 4 weeks into radiotherapy I ran into some issues and became dehydrated and hospitalized. My surgeon was great he came to see me and when I said I was thinking of throwing the whole radiotherapy thing in he said to me he would not be a good friend if he agreed with me. He said that I had already come through 4 weeks of treatment and if I stopped now there would be no benefit to me so he highly recommended that I continue. He was so thoughtful that I agreed and finished the treatment. Sorry there were a few more tears involved.
Now here I am 9 months on and feeling really positive about things but not to say that there weren’t quite a few moments along the way that I had to deal with.
Best of luck to you and I am sending positive thoughts. Men are allowed to show their feelings as well and don’t have to be stoic about everything.
Lyn (AKA Sophie66)
Just a quick update to say the biopsy results of the parotid tumour came through today- and it is benign
The consultant said it may turn cancerous one day, but most likely in 20 years or so from now, so they are just going to monitor it.
Back to a 70% chance of complete cure according to the consultant.
HI TrevW,this is great news and must have taken a bit of worry and stress from you, 70% is a great starting figure as i know some are not as high as that. I hope you are feeling a lot more positive about it all. thanks for the update .all the best .
Trev that’s great news
Now you can move on and get fixed
While you have your consultant’s ear I might seriously consider asking him to sort the benign tumour out. Believe me 20 years passes all too quickly and you will not be an old man at 67. Just a thought
Good news Trev - I agree with beesuit - see if they can get rid of it now while you in the process of it all - best wishes
Good news onwards and upwards lots of us in here are living our life’s after treatment .
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com
i give a honest account of my experiences with tonsil cancer
T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions. Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can .Onwards and upwards to infinity and beyond.
Thanks for the replies all
Just got to get on with it.
Ive only had 8 radio, 2 chemo so far, and JUST starting to get some symptoms now, no sores yet- but my saliva is thickening and it took me forever to chew through my friday night treat- pizza
Still holding down a full time job between treatment though without too many problems.
I guess next couple of weeks will be the sores etc
As for the benign tumor, well apparently there were several reasons to leave, it would increase the radiation overall that i am getting, and apparently sometimes the tumor enlarges with radio at first, making the usual symptoms of treatment even worse (even less saliva)
I will ask about what will happen with parotid long term, but really i have to trust the team with their advice
After being misdiagnosed by walsall manor (and them cocking up a host of things) the QE does seem reassuringly competent
Lovely to hear that you have a better and more competent hospital looking after you TrevW, unfortunately, this does happen. I had similar with a lump on my neck, which is still there, the consultant said that its most probably better of left alone as it could cause more problems so thanks for this info.
You never know you might be one of the lucky ones and not suffer too bad with the side effects, let's hope so. Lol, when I could eat I used to think pizza was like chewing cardboard anyway, although they have vastly improved since 2008 . It pleasant reading when you say the chemo is going ok as sometimes people struggle with that, I also had both, 3 chemo and 30 zaps of radio and faired pretty well, so fingers crossed for you, best wishes.
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