Radiation necessary if lymph nodes clear and all margins clear in the mouth?

Hi mini2011, 16 months ago I was in the same situation I had neck disection , tonsillectomy and base of tongue removal and everything came back clear, I had an unknown primary,  I was offered radiotherapy and I decided against it and my consultant was in agreement,  I'm here again now with cancer returned still with an unknown primary and I'm now starting radiotherapy and chemo next week, I wish I had done it last year but I was just probably unlucky , you will be kept a close eye on if you decide not to have it and whatever you decide I wish you well and hope you have beat this, I know how it feels loosing teeth ivevalso lost mine and I feel ugly through it but I know at the end it will all be worthwhile and I'll have those teeth replaced xx

Hi Nana 66

its a difficult one isn’t it, I didn’t need anything other than surgery in 2011 but I do suffer from oral lichen planus unfortunately. 
I think I’ll need pretty convincing that I definitely will need radiotherapy because i am only 49 and don’t want it to damage anymore of my mouth!

I’ve been under surveillance ever since e my first diagnosis and feel very confident they will continue to monitor me.

I guess I’ll just wait and see what the head and neck team think!

thank you for your comments though, I’m very sorry you’re now back having to go through more treatment, I am crossing my finger’s it all goes well for you x

Hi Mini

In 2019 was told i have a huge tumour in and under the base of my Tonge. The oncologist was very good and explained my options and i went with his answer which was 6 weeks of radiography and Chemo. The Treatment was a bit scary at first as i did not know what to expect. but i was surprised that there was very little pain and side effects.

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Hi Min2011

Rather than retype my response to another lady yesterday I've just cut and paste my story.  Hope it helps

"Hi Chrissie and a welcome from me.  I was/am similar to your mother.  Cancer in the lymph but no primary.  Scans indicated tongue, tonsils or nasal passage.  In my case I had various biopsies - tongue and tonsils, full tonsillectomy and all the lymph nodes around the cancerous one removed.  No cancer detected anywhere.  My clinical team agreed with me that there was no value in the trauma of bilateral radiotherapy with no target.  I went onto what is called watchful waiting.  After 15 months they observed a very slight abnormality in my tongue.  Biopsy, and it was a tiny tumour.  A few weeks later I went for a partial glossectomy and the tumour had gone.  Again we decided on no further treatment.  I am not 18 months past that decision and feel absolutely fine, but am followed up religiously.

To have, or not have, further treatment after inconclusive surgery is a very personal decision.  I am comfortable with my choice and the care I am now receiving.  Only your mother can make that decision based on the facts of her individual case.  After the first CUP I was given a 60% chance of a return, but still opted to go without radiotherapy.  As I have said it did return - or at least make itself known for a short period.

I am really well off the well trodden treatment pathway so don't take my story as the safest or best way forward for your mother.  I am not advocating any option, but I think you are doing the right thing to examine the options and potential quality of life post treatment. Happy to have a further discussion if that helps via private message."

Hi, I had a very similar situation to yours. Stage 2 HPV tumour in my right tonsil. I had a suspicious-looking node also on the right side. I was given the choice between chemoradiation or surgery with potential adjuvant therapy. I opted for surgery (TORS and neck dissection, right side only). They got clean but close margins (2mm), and none of the 19 nodes removed were cancerous. I was then given the choice whether to 'watch and wait' or have radiation to 'clean up' around the close margins. I opted for the radiation to be on the safe side, as I couldn't bear the idea of dealing with a recurrence knowing I had taken the risk. I was told it decreases the chance of recurrence by 5-10% which isn't much overall but it was enough for me. My radiotherapy was targeted to the right tonsil bed only, they didn't do the neck. I am 8 days out and am doing okay so far. I am 47. It is such a tough decision to make and you will never know if you have made the right one, but I view radiotherapy as a short time in my whole life, I've got my head down for winter and I hope to emerge in spring feeling better! Do you know where they would target the radiation if you decide to go ahead? I think the fact that mine was one side made the whole thing more manageable. Good luck with your decision. 

I wonder will I have to make a  hard decision soon as suspect could be a lymph node problem again 

Hi

i was told will only need surgery. Had wide excision to start with (as biopsy was benign ). This went for a second opinion to a different hospital! Found to be ACC. I then went for more radical surgery and was told that was it. 
then the specialist met at their MDT meeting and said I should be offerred radiotherapy because i had perineural invasion on the wide excision, which i wasnt aware of at the time. The radical surgery i had was clear. The surgeon said if youre oferred to have it, they dont offer it lightly. I found it a very difficult decision! Id sooner them not offer but recommend!! They were very much its my decision. 
Hindsight is a wonderful thing and were all unique but i wish i hadnt had radiotherapy tbh especially given the 2nd surgery was clear. Having said that, its east to say that now but had i had a recurrence i may think differently.
good luck with whatever decision you make and what you are offered!
elaine x 

Thanks Elaine  I appreciate that and hope you are on the mend  . Well I had been fine during and after treatment but have since developed heart failure which apparently can be caused by the drugs used for chemo. Well I have had 30 radio and  4 chemo . So is the only option surgery do you know ? Obviously i would prefer an all clear but have to be realistic and have a belt and braces approach 

Sorry To hear that you have developed heart failure secondary to your treatment. Hope your symptoms are not too debilitating. 
im not sure about Surgery to be honest?

fingers cross You get the all clear xxx

Thanks Elaine Well it could have been much worse at least I am here able to write about it  lol . To be honest my chest was killing me literally as I had got used to the pain. I think I need to take a serious look at enjoying life more for starters. Yes all clear would be fab All the best regards Marc