Tonsillar SCC With Neck Nodes

Sorry mark my pain after tonsil biopsy was fine I took codeine for a few days. I didn’t have tonsillectomy as I had slight spread to soft  palate so it was decided to let  the radiotherapy deal with  everything. I went ti theatre 1300 snd was at home by 7 pm eating soup. Personally my pain levels we’re fine. But as we all say we are all different. As for consultant not seeing mine wasn’t visable there was nothing on outside .
Hazel 

Unknown said:

could i ask the group, how did you feel after the biopsy, i know if the tonsils are removed that will be sore, but should i expect pain everywhere.

As ive mentioned before ref the cancer and its ability to spread, my fears are more to do with the fact that 2-3 weeks ago i had a specialist examined me and announced he couldnt see any problems yet a week ago i could see a hard blister like lump on my tonsils after being told by another specialist it was there.

My conclusion is if it can spread that fast whats to stop it spreading to other areas before my RT

Mark, I know it's hard but please try not to overthink things. This cancer is aggressive but it doesn't spread like wildfire which is what you are imagining.

Your conclusions are wrong....honest.

My tongue tumour couldn't be seen on endoscopy either but the MRI picked it up.

I had a panendoscopy where the whole aerodigestive tract is examined and biopsied. I had a sore throat and a bruised tongue for a few days and felt wobbly from the anaesthetic.

Hi Mark, in answer to your question, once I’d opted for surgery I was invited to join the PATHOS project where, following TORS, you are ‘randomised’ into one of three categories depending on the outcome of the operation. I was hoping to go into the ‘Just Keep an Eye on It’ category but my margins weren’t good enough so I was randomised onto the full monty. I have to say that I was upset about it at the time but my surgeon told me it would be her preferred option as as little is left to chance as possible.

By way of explanation - at least how I understand it anyway -  after my surgery they told me that they had got all of the tumour out but since the lower margin was only 1mm, due to its being so close to the carotid artery, they recommended chemoradiation as my adjunctive path. (I also have a friend who had the same thing two years prior to me. He had good margins all round and was still strongly advised to have RT to mop up any microscopic cells which may have escaped. He is doing really well nearly three years on.)

There are several ways of dealing with this disease and different hospitals seem to have different preferences. Me, I opted for surgery first because psychologically I wanted the damn thing out, especially after I’d seen it nestling in my tonsil during my nasendoscopy! Yuk! (I’m still not sure why they excised only the one tonsil since most people seem to have both out.)  I was fully expecting to have to have RT due to my friend’s experience but I was upset to need the chemo too. Now, however, I’m glad I had both.

Only time will tell whether the choices were the right ones but I have every faith in my team that they did what they considered to be best for me. 

I hope this helps. Feel free to pm me for any further info.

M

Hi mark your diagnosis is similar to mine...it took 10 weeks to get to the bottom of mine as it's incredibly difficult to spot...I did not have my tonsils removed as the tumor was larger than the tonsil itself... decision was made to treat it in situ...I like you was concerned by this but actually proved the right decision...I'm 31 months post treatment and living an active and healthy life.

Hopefully the treatment goes well for you

Chas

Hi Mark my husband sounds very similar lump in neck found April 20th...all tests could not find primary only once they removed tonsils was it found..treatment starts in 2 weeks..we are struggling to get proper diagnosis ie the TNM figures doctors seem to be beating around the Bush a bit, seems a lot to take in so quickly i know 

Thank you for the replies and advice everyone, so this week I have a covid test, dental check and then the biopsy on Friday, the CT scan showed a 2cm lesion in my liver so I'm having an MRI scan next week, that's concerning.

I've no idea what I'll have or won't have after the biopsy, I'm not sure I can live with this mass in my neck or the tonsil tumor for another two months.

I have bupa insurance, they are basically useless, I've switched back to the nhs as they are quicker for the biopsy.

I've shut down my business from today which is soul destroying as its taken me years to build it but needs must I suppose. 

On a positive note I've made very quick progress through the mental stages of my diagnosis, shock, denial, bargaining, anger, depression all completed in record time and I'm now well into the acceptance stage, if only bupa were as efficient :) 

If I can give you one peice of advise stick with NHS, we had a lot of people pushing us towards private for 'quicker' care but since being put on the cancer pathway we feel like the oncology team are a complete different kettle of fish very efficient and nothings too much trouble, and some one said to us recently private health care cares for you until the money runs out...NHS have a duty of care till end of life, and when u run your own business or self employed like ourselves money is a stress you really don't need at this time....Good luck keep us updated

Couldn’t agree more about NHS. The private sector isn’t bad for chemotherapy which you can have in the comfort of your own home. One of my friends did just that. 
If you need proton then  that’s available on the nhs only in trials but privately The Rutherford offers it. 

Mark 

I had full medical insurance but basically put my trust in the NHS ... honestly it was my best decision...I love your race through the change curve...shock.. denial etc  I did that in the first weekend...to prevent months of beating myself up .. again another great decision... hopefully you will motor on from now on

Chas

Unknown said:

I've shut down my business from today which is soul destroying as its taken me years to build it but needs must I suppose. 

Oh Mark I’m so sorry to hear that. You must feel so broken. I would have had to do that but thankfully (sic) I got cancer after I retired. 
Best of luck and let us know how it goes.