Discovered a lump on my neck in August, had MRI which didn't show any thing then had pet scan which showed a little light on my right tonsil but was not clear, I had 3 biopsies which 2 confirmed HPV 16. On 7th Nov, 3 wees ago I had robotic surgery and found the cancer in my right tonsil and now been given an option to have radiotherapy, or surgery to remove tissue under the tonsil and Neck Dissection to remove lymph nodes and have them tested, then it depends on the results from the pathologist if I will be having any radiotherapy or not. I think I will have RT, the biopsy of the lump showed cancer cells. I'm dreading to have this surgery, there's a trail going on at the moment to test if reduced therapy does work, its an international trial and you need to be having the surgery to be in this trial, its called PATHOS. I'm not really interested in the trial but I wish it was not on the scene though its my choice if I want to be in it or not. My surgeon who is in charge of this trial did explain to me that surgery is better but still its my choice, which makes it difficult for me to make a choice and which one is best for me. Not much was explained about the radiotherapy but I read that its very invasive and you can get long life effects. The way I see is that I would probably need RT after the surgery so I will get side effects from both the surgery and RT, but my surgeon did explain that if there are no cancer cells on the margin from the tonsil I will probably won't need RT in that area and only have RT on my neck. The risk of this surgery the Neck Dissension is very scary you will have problems swallowing which might last for a long time and problems with moving your arm and so on.....The surgery booked for 5th Dec that's next Monday and I still don't know if its the right decision, by the way I'm 71, and the surgeon said that chemo is not safe for over 70, I'm fit, active and eat well, beside this thing going on that is driving me into a big depression and making me very unhappy. Has anyone had a neck dissection or any other treatment for a right tonsil cancer and a lump on the neck?
Hi Serenata. I had exactly the same thing and faced the same choices. In the end I had The Full Monty - tonsillectomy, neck dissection followed by chemoradiation. (I chose to join Pathos and, as a result of being in the middle group after TORS, was ‘randomised’ for the chemotherapy on top of the RT.)
It’s a lot to take in and will be a difficult journey at times but the chances of a good outcome are excellent. Two years on I’m living a totally normal life, albeit with a bit of a stiff neck and a mild phobia of a repeat performance. If you want to see what I experienced there is a ridiculously long diary of my journey to date if you click on my profile.
At the end of the day only you can make the choices but do be guided by the advice of your team. I wish you all the best at this difficult time. All the best, M
Hi Serenata. I had exactly the same thing and faced the same choices. In the end I had The Full Monty - tonsillectomy, neck dissection followed by chemoradiation. (I chose to join Pathos and, as a result of being in the middle group after TORS, was ‘randomised’ for the chemotherapy on top of the RT.)
It’s a lot to take in and will be a difficult journey at times but the chances of a good outcome are excellent. Two years on I’m living an almost totally normal life, albeit with a bit of a stiff neck and a mild phobia of a repeat performance. If you want to see what I experienced there is a ridiculously long diary of my journey to date if you click on my profile.
At the end of the day only you can make the choices but do be guided by the advice of your team. I wish you all the best at this difficult time. All the best, M
Thanks for the reply, did you have much discomfort after the neck dissection, they mentioned having problems swallowing after the surgery and how long did you wait to start the treatment?
Hi Serenata. Welcome to the club that none of us want to join. I’m just over four years now post chemo and radiotherapy for tonsil cancer with several effected of lymph nodes. I wasn’t a candidate for the pathos trial due to one of the lymph nodes being quite close to my spine. Therefore I couldn’t have dissection either I had the traditional gold standard route of chemo radiation radiotherapy Chemo isn’t necessary it’s a top uo I was 61 when diagnosed now hope happily live in my life. Yes there’s a few side-effects dry mouth be in the main one, it’s a difficult decision for you to me. I hope we can help you get through the treatment. My oncologists said he would amount to kill me which he did. He also said he would take a year out of my life with treatment which in a way you did and that yeah I still managed to travel to Spain. Radiotherapy is hard but it is doable. As long as you take the pain medication when you need it and then issues you tell your radiotherapy team straightaway it can be done and can have come out with a good life at the end of it. Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
I have had a double neck dissection alongside tongue cancer which surgery sorted but ultimately the tests showed some spread into neck so limited chemo and 30 rt sessions to follow. The neck part requires discipline on exercises and you can get a case of lymphoedema (swelling) which can be a nuisance to manage. I have not had too many swallowing issues but not tonsil related so not a fair comparison. I made a personal choice that if I went through all that surgery to not mop up would be a bit short sighted in my case. Hope it goes well whatever path you take. Great people on here will help you.
It was sore but not unbearably so and quickly healed. I did my exercises and recovered more quickly than I was expecting to. I was happily eating fish and chip takeaways within about 3 weeks. It’s the RT that makes it sore as that gradually builds up. As for timings, I was operated on on 8th October (tonsillectomy and neck dissection) and started chemoradiation on November 23rd. Treatment all ended January 2nd.
Hi you will be. It’s amazing where we get our strength from when it’s needed. Now you’ve found us on here we will all try to help you. hugs Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
