Tonsil & Lymph node cancer

I was at this exact crossroads last August. I had meetings with both my surgeons and an oncologist and both sides were getting their point across, they would likely resolve the cancer issue. It was very challenging and difficult for me and I had a very hard weekend of trying to work out what to do. 

ultimately, I met again with my surgeons and they explained why surgery was what they would recommend for me over chemotherapy. I can’t tell you what to do, it’s entirely your choice but from my standpoint I decided to go down the surgery route.

My surgeon explained that I was young and likely to recovery well from surgeries and there would be a chance that this would be supplemented with radiotherapy (it was - 6 weeks). My surgeon explained that Chemotherapy was very hard on the body and her recommendation was surgery with TORS and a neck dissection first. 

The surgeon did say that having gone down this route it would mean that I would have a higher chance of needing Chemotherapy in the event of a recurrence. 

Im not against chemotherapy, far from it. I just opted not to go down this route to begin with. People have had combinations of therapies. In that difficult weekend that I mentioned, I sat down with my wife and wrote a list of questions and sent them to my cancer nurse. I got a call on the Monday asking me to come in for a chat and I got all of my questions answered and made my decision there and then. 

I was lost at the time and I sense that’s where you are now. I would suggest contacting your nurse/consultant to discuss it further. Whatever you choose, I believe the outlook on this type of cancer to be very good.  

1. Hi.I was diagnosed with tonsil cancer last November. Had 6 weeks of radiotherapy and chemotherapy.30 rounds if radiotherapy and 6 of chemotherapy. My treatment started back in Feb this year and finished 1 April.The treatment was tough.Had to take anti sickness and morphine. My throat for a few weeks was like a razor blade but I got through it.Im back at work 8 weeks now.I have put a blog on here on this forum.worth a read if it helps.Its under Eliza64

Hello

It’s really hard being in a position of having to make choices like this.  You’re hit with a diagnosis which is scary enough in itself and then, if anything like me, from a position of ignorance, asked to decide how you want it treated.    I was in this position with a tumour at the base of my tongue which had spread to (only one, fortunately) the lymph node. It was the lymph node which acted as the whistleblower for the existence of the cancer..

 I decided to go for surgery …for no more scientific or logical reason than a gut feeling that I just wanted rid of it.  I so nearly got away with ‘just’ having the surgery. Unfortunately the margins achieved were fractionally too small, so I was hit with adjuvant radiotherapy.  For me this was a far more devastating blow than the original diagnosis…..particularly as it was delivered by my surgeon’s Registrar, with no preparation, in the same breath at the end of a sentence which started ‘good news we got all the cancer’. Water under the bridge…but sometimes I wish someone would sit some of these young medics down during their training and open their eyes to the effect their choice of words …and the way they deliver them…on those receiving them….

Maybe this will sound odd….but I agonised far more, right up to the day my treatment started, over whether or not to accept the radiotherapy than whether to take the surgical route.

I don’t imagine for a moment that this helps much!  It’s a difficult decision.  

Good luck with your treatment whatever you decide to do.

Liz 

Hi Not an easy  choice. I was diagnosed in March with tonsil cancer. Was told that my tumour was small and I was a prime candidate  for robotic surgery but was  given the choice to have RT. I was adamant that I was not having surgery. I went away and did research.  In the end I changed my mind I was told I had a 85-90% cure rate and might not need RT after. 

I had neck dissection  first then tors robotic surgery week later. Neck dissection  was OK,  was home 2 days after op and scar has healed really well. Surgery went well but I did then haemorrhage  few days later ( I was warned  it could happen, just bad luck). I was given emergency surgery to stop the bleed.

I'm now 3 months post op. It has been difficult  at times. Had  support  from dietician and speech and language therapist. Had to learn  to swallow and eat. was on the dreaded fortisip drinks. Also learnt how to  talk again,  still talking bit like I'm deaf but it is improving.

Happy to answer  any questions  if I can.

Good luck

Lins x

Dear Vessel6

I have only just joined this forum, having only just completed thirty days of radiotherapy myself, for what sounds a parallel and similar diagnosis:- no two are identical ( something else I have learnt in this whirlwind of new things and experiences I have had in the last six months...).

From the dates you give, I assume you have made this difficult decision, one which I have faced very recently. I had initial surgery on the tonsil and some lymph nodes in January, then I opted for more extensive surgery ( a neck dissection ton remove lymph nodes)in April, and was told that as there had been no sign of any further  spread I would not need chemo - but the 30 days of radiotherapy.

I opted this way after careful discussion with my consultant - while aware that he is indeed a surgeon! However, I asked him to be absolutely frank and say what he would do if in my shoes, and in my case he said to go for the surgery, as he thought I would handle it, and the radiotherapy, well. That seems to have been right. It wasn't fun, and quite tough, and I am still impatient for the after-effects of the radiotherapy to wear off - but it is only a week and I am always impatient...

Whatever path you have chosen I hope you too have had good advice, and I wish you every success in your recovery.

With my very best wishes,

Georgeiv. ( not my real name, as advised, and I am not really royal, but I do rather admire George iv,  a better king than he is often regarded...)

A week?  That is super impatient…but good on you.  I got worse for a good couple of weeks post treatment.

Your post made me smile.  I asked my surgeon what he would have recommended had I been his mother.  His first quip was that he’d have referred her to someone else…

It certainly wasn’t fun.  The surgery was fine after the initial trauma healed.  The radiotherapy was very much more challenging.  I wish I had found this forum earlier. I would then perhaps not have gone into it as unprepared as I did.  Better late than never. I’ve had some good advice here.

Good luck with the recovery.  Royal banquet in a fortnight?!

Liz

Dear Liz, I too wish I had found this forum earlier. Thank you for your good wishes, and for your very parallel account, which rather matches mine.  I must try harder to not be so impatient! And every good wish to you too...I am not sure whether the royal banquet will be manageable, as I am eating so slowly at the moment, but the entertainment might be worth it and take my mind off things...

George iv

Yes, but the advantage of being the King is that you can dictate the pace!