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 Trev. I’m Dani. I’m 18 months out of radiotherapy for base of tongue cancer. RT is not pleasant but it’s doable. It’s true that your mouth and throat will get sore and it might be impossible to eat but it’s easy for your team to give you a nasogastric feeding tube. It’s painless and takes only a few minutes. But recovery does come one small step at a time. It was six months before I felt anywhere near normal but now apart from a manageable dry mouth and a taste that comes and goes I’m back to normal.
It’s a normal reaction but you are over thinking things. The effects of radiation are unpleasant but they won’t kill you. Osteoradionecrosis is rare.
The usual chemotherapy for SCC is Cisplatin. It’s not the sort of vigorous attack that leaves you with hair loss and practically bedridden. Some people sail through it and others have minor symptoms.
Cancer treatment units are Covid free. You will be safe
Please reconsider. You are a young man with a long life to live. I was 68 when I was diagnosed. I grabbed the chance to live with both hands and I would have caught tooth and nail to access treatment. Your HPV status is a bonus
Please get in touch with your GP who can give you some antidepressants and maybe something to help you sleep. Talk to your team about how you feel. Your dedicated nurses should be there to support you. We all feel poleaxed by this diagnosis as most of us are perfectly well at the time and this is often the reason why depression sets in and we feel that life is hopeless. It’s not.
I didn’t have Chemo but my best mate on here, Hazel, will be along shortly. She had exactly the same diagnosis as you and she is almost at two years. She cycles all over the place and spends a lot of her time walking in the beautiful countryside where she lives.
Give it a go Trev. Oh and stay off Google. It’s apparent to me that you have spent a little time there already. Don’t
There are lots of people here In this community who have journeyed a similar road and survived. I hope they will be along with advice for you. They are better than Dr Google
Ine final thing you might consider is that you won’t have two good years. You will have increasingly nasty symptoms to deal with and you will die bit by bit. I’m sorry to say this but it won’t be pleasant. Take care of yourself.
Well Dani has put it in a nutshell, there are many on here who have gone through this treatment and come out the other side to tell the tale, including myself. It is hard but doable and worth it. stay off Dr. Google he will scare you to death. Put those thoughts out of your head, you will be at the end of treatment before you know it.
This is Hazel aka RadioactiveRaz I was 61 when diagnosed I am a wimp I cry if I break a finger nail. But I too was an ex smoker 20 years plus I also used nicotine replacement gum My cancer was also h p v 16+ tonsil cancer with several effected lymph nodes Diagnosed T2N2Nm I had 35 radiotherapy sessions and two chemotherapy of 10 hours each and test 2 years on 31 August I am still here alive ride my bike 25 km yesterday and has a rare rib eye for teanit bad going for going for someone’s who was convinced she was going to die. I also had a nasal feeding tube for 46 days and struggled to swallow from week 3. So the gist of what I am saying yes it’s tough buts like @Beesuit and @old biker say it’s doable and better than the alternative.Ok I didn’t have covid to deals with but the cancer units area covid clean spaces so buck yiur ideas uo and get in with it. If yiu need anti depressant s contact yiur Doctor I never needed them as I am a glassy half full,person but know many who have had them. Chemo cisplatin you don’t end up like a feeble gibberish wreck, take the tablets as instructed and painkillers take as much as yiu need. I have a blog with links to other pop on it might help you. www.radioactiveraz.worrdpress.com.
Plus if you hover above our photos that takes you that persons profiles which gives more info on us .
rant on her we will pull you through or send friend request
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.
Sorry that you are in negative space at the moment.
Dani makes so much sense and I agree totally with her.
I did contemplate not having treatment for my second bout of mouth cancer as I found the radiotherapy the first time around really hard
I had to face my mortality but with encouragement from my family decided to give the radiotherapy a chance. Although it was still tough I did not find it as hard as the first time and here I am 9 months later feeling really well and glad that I did not give up.
When you are in a negative space it is hard to think rationally and I was more concerned about the short term pain and not the long term gain.
I am now so glad I completed my treatment and am looking forward to a good few more years of doing the things I enjoy.
Get a referral for some counselling as discussing your concerns with someone who is neutral can really help.
Hang in there as things do improve, you just have to take one day at a time.
Lyn (AKA Sophie66)
Hi Trev, I’ve just turned 45 and literally had the same diagnosis last month. I’m awaiting my tonsillectomy and treatment plan after that. I don’t know my HPV status yet until they test my tonsils and see if the primary is there as can’t see any cancer on all my scans. Only seen in my lymph node in my neck that popped up in May. I understand how you are feeling as I’m swinging from one emotion to another right now and am not my usually sunny self. This forum has helped immensely and I’m trying to keep positive and work my way through what is going to be an uphill battle but one that I must face as my kids and family need me to be around. I’m currently having to self isolate for 14 days before they can do my op. Had a COVID free test last week and need another one before I get the green light for the op. Apparently the ward that I will be going on is a ‘green’ Ward which means everyone has had to self isolate for the two weeks and COVID free before they are allowed in. It’s a day case only op - in and out in the same day so no hanging around in hospital. I also got an MRSA test last week to which is also negative. The bottom has just dropped out of your world as has mine but people keep telling me it’s doable and I can handle it and the word ‘cure’ has been said a lot so that’s what I am clinging onto right now. Here if you need to talk more.
So sorry to hear that,I finished my radiotherapy 11 weeks ago but sure it's still in my mouth,got my pet CT scan on Wednesday results on the 13th .I had daily radiotherapy each day for 12 weeks.
Treatment is very tough but it’s doable.
My hubby had 30 radio and 6 chemo and finished treatment mid Jan 2020.
We had a rough ride but it was totally worth it. He’s 57 and has so much to live for. We’ve just got back from a mini break at the coast and have booked for Corfu in September. The treatment made these things possible.
Yes he had a feeding tube for a while and yes his neck got badly burned and yes the chemo made him sick. BUT it was a means to an end. I don’t know of anyone who has died from having treatment, although I appreciate hubby finished his treatment before Covid-19 arrived.
Please just concentrate on having the treatment and getting better.
Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20
Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20
I just wanted to thank you all for your non judgmental responses, i really appreciate it. Its good to hear from people who made it out the other side. I have to put on a really 'positive' front with friends and family it feels, and cant let them see any negative thoughts (thats an issue of mine). Unfortunately my treatment has hit a hitch...they discovered a 3rd tumour (parotid) so my treatment has got to be 'reset' to incorporate it. As far as i am aware though it is still curable (i will ask oncologist about that at next meeting).
It is reassuring to hear few die from the treatment too, i agree google is not always a force for good! and i should probably avoid it
Thanks again all, and i hope to be one of the ones providing support at some point.
So glad you are feeling a little better about it. You don’t have to be strong you know. It’s ok to wobble. I did plenty of that but I leaned on my husband. Good luck with your next meeting.
Hi Trev. Better to have found the parotid one now just means an extra blast in that area .Wobbles are ok our families as much as they try don’t understand totally these forums are good to blow off steam. My hubby was a typical Yorkshire man right ok we’ve got a problem let’s get on with it he did anything I asked him. Apart from answer to a bellmonky suggest in case I list my voice. Hope that made yiu laugh. Good luck with next meeting Hazel x
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