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My husband is 6 weeks post radiotherapy for L tonsil cancer spread to lymph node T2N1M0. He is doing really well, RIG out, eating improving. His lymph node has shrunk a great deal but there is still a small swelling if you feel around. I have read that some people's lumps disappeared completely either during treatment or soon after and I'm a bit worried that it hasn't gone completely. PET scan is end November. Has anyone experienced this and had a clear scan result at 12 weeks? Needing reassurance! Thanks
Hi Madaboutmutts. Yes I can reassure you! I definitely had a lump still present (albeit much smaller) 4 weeks after chemoradio finished. It disappeared soon after that. Bizarrely I was’nt woried about it at all - strange,because I worried about a great many other things. My PET scan at 13 weeks was clear. (MRI at 12 weeks was not - uptake of contrast couldn’t rule out residual disease. So I then had a PET scan)Hopefully your husband will have PET straight away, if not and he has MRI, be prepared for an “indeterminate scan” and a fair bit of stress waiting for PET. I believe it is fairly common for a lymph node or lump to persist for a while especially with HPV cancers.
Sounds like he is doing really well. Recovery does take a bit of time, so patience may still be needed.
Hi madaboutmutts , this can be the trouble when you read things on google, i never do but my wife does. Im sure as Hilary said that its quite normal to still have a lump or swelling as its still early days yet. I still have a lump that has never disappeared ( it was tested and came back clear ), it does not show up on the neck but i can feel it i think its just a little reminder of my dealings with cancer. I hope this has helped to reassure you, all the best, take care.
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Thank you so much!!! I really appreciate your replies and I hope you are doing well yourselves. He is having a PET at 12 weeks and of course we are suffering scanxiety. He was diagnosed P16 positive and had radio only for 6 weeks. Your reassurance is so much appreciated at this scary time
Thank you so so much. He is having PET at 12 weeks and we are both very anxious. I hope you are doing well too. His is a P16 positive cancer so maybe that's why is taking a while. It is about an 8th of it's original size. I really appreciate your kind responses. B
Hi madaboutmutts, please don't get over-anxious as i find it can make things worse, try and keep the subject off-topic and find something that will keep you both busy, otherwise you could stress each other out. This is the main reason i take things a day at a time and deal with the problem when needed. I know we are all different, but please try and relax a bit you will better for it. Take care .
Hi like everyine says don’t stress we are all different , mine went 5 weeks into treatment one moor it was there there next day gone , I know others whose lump shrunk but were still able to feel it and they git the all clear. I had faith in my oncologist totally like he said h p v 16+ was an excellent indicator to all clear being the result. So don’t stress please yiuve comes this far , if it’s a ct scan as opposed to a pet ct scan like others have said there’s always the possibility of residuhit spots necessitated a further scan. I was lucky I had a pet cat scan but we in conjunction with oncologist decided to wait until after Xmas as I wasn’t stressed so it was 17 weeks for my scan.
Niw am 14 month since last treatment and doing ok , yep have issues with dry mouth and miss eating as much variety as I am used to but hey ho .,
once again don’t read google please
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
Hi Hazel and thanks for replying. It's a rollercoaster and that's for sure! As well as some lymphoedema my husband has a very very sore throat. It comes and goes - last week he felt really good, but the razor throat reappeared some days ago. He is 6 and a half weeks post radiotherapy and last week he thought the painful throat was on the way out. He is managing to eat very soft food plus Fortisips but is getting pretty down with it all, we have had an awful year as he had a major RTA last December with massive head injury and all facial bones broken ( not his fault), was in a coma for 2 weeks followed by major surgery and was only just recovering when the tonsil cancer struck in May. So he is definitely due a bit of good luck!! Re Google- I never look at it and only rely on posts here or the cancer research site. Thanks again B
Hi Madaboutmutts, my husband had chemo and radiotherapy back in 2014/early 2015
One lymph node didn't disappear during treatment
The 3 month scan showed some take up which our medical team believed was due to scarring. To be certain they did a neck dissection and removed the swollen node and some others
It sounds as if you've had an awful couple of years
Talk to the hospital team for their advice but it happened to us so please try not to worry
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