Surgery or Radiotherapy ? Help me choose??

Hi. I had surgery ( bilateral tonsillectomy & part of tongue removed), chemo & radio for tonsil & lymph node hpv16. 
30x radio & 6x chemo. This was my consultant’s decision -  ‘belts & braces’ approach I was told. 

Hi I had 35 radiotherapy sessions and 2 of a planned 3 chemo. I couldn’t have surgery as one if my affected lymph nodes was too close to my spine. Treatment is hard but the end results are excellent . Has HPV been  mentioned. 
My blog below may help remember we are all different. 

wait ti see what  your biopsy results are talk it over with you  consultant. 
the usual route is chemo radiotherapy where no nodal involvement is found but different trusts have different policies. Many only have radiotherapy. A lot will depend upon your biopsy and if you have a pet ct scan. 

Hazel x

My experience. My tongue cancer was inoperable as it was too far back in the area that has tonsil tissue (there are small tonsils at the back of the tongue just like the ones in the throat) Even if surgery had been possible I would have had to have  radiotherapy as well anyway. I had the cancer and the lymph nodes in my neck targeted. I'm glad they left my neck nodes alone. We hear some troublesome stories about long term side effects of neck dissection.

As it turned out my lymph nodes were clear so I had no chemotherapy

I had a right hand side tonsillectomy plus neck dissection followed by  5xchemo and 30xradio. The Full Monty!  The tonsillectomy had healed very nicely before they started chemoradiation, which was tough, but I’m glad now that I chose to have it all even though it was hard going towards the end.

2 years on and the site where my tonsil was (the glossotonsillar sulcus) still gets raw, exacerbated by certain foods and drinks, but there is no pain and eating is almost back to normal.  My neck still gets a little stiff and burns easily in the sun if I’m not careful, but my feeling is that as long as it’s made me better it’s been worth it.

We rarely get back to normal, either physically or psychologically, but the cure rate is excellent. 

Hi, 

sorry to hear about your cancer, i had base of tongue cancer (6 months post treatment), which was spread at lymph node. My team decided not to take out my lymph node as will have to have RT anyway. I had 30 RT and 2 CT. 
My surgeon said how lymph nodes will be under radiotherapy, and after few operation (robotic and extraction), better not.

i think is probably best to talk to your team and they can tell you what is better for you even after the treatment i am sure they should know better then asked you what you wish to do?! 

good luck with all, and this forum is brilliant to be as people are amazingly helpful,

love from Marta x

Hello Misscjayne,

I am sorry but nobody can help you choose and I would not advocate one option over another.  It is a very personal decision based on what you see as the risks and benefits from the options.  That said I can tell you my experience and this may help you see a wider picture.

In my case they thought I had cancer in my tonsils based on scans and a positive biopsy of a lymph node.  There again it could have been at the back of my nasal passage or in my tongue.  Sometimes, with all the technology we have at our disposal, this is still an educated guess based on experience!  In round one I elected for surgery.  bilateral tonsillectomy and removal of the lymph nodes on the side where they dissected to find the cancerous one (initially the needle biopsy on that node was negative).

In all the material removed the pathology was negative and during the operation I had 3 different consultants looking for the tumour!  The thinking was that my body had dealt with the tumour.  On that basis I elected not to have radiotherapy, but go onto watchful waiting with a 60-70% chance of a reoccurrence.  All was OK for a year then my consultant noticed a tiny imperfection in my tongue and brought me in for another biopsy.  That was confirmed as an HPV+ SCC.  Planning scans could not detect the tumour.  6 weeks later I went for a partial glossectomy and the tumour had gone once again.  Once again I elected for no further treatment (each time the MDT agreed with and supported my decision).

Fast forward 18 months to November and once again I was under the knife, but this time it was a negative result.

I have still elected not to have radiotherapy, but I am keeping it in reserve in case of a further return and surgery is not successful, or needs some help.  I live, in essence, being Cancer of Unknown Primary and get checked every 2 - 3 months.  I have a great quality of life and am comfortable with my decisions.  They work for my appetite for risk and understanding of the mechanics of this cancer in my specific case.

Presented with the same or a very similar situation I would go down the same route without hesitation.

I am undoubtably "different" in my cancer presentation and unusual in my treatment pathway.  It seems acceptable to be CUP or to loose the cancer once, but twice is a medical rarity.   Remember this is your personal decision and your consultant will be offering best advice based on the science and experience.

Going into surgery is no less traumatic than the other treatment options and also has longer term consequences just as radiotherapy has, but often different issues.  In most cases these are not necessarily life limiting, but may cause you to approach things slightly differently in future.  Whatever route you take come back and let us know and we can offer you some advice on how to prepare and cope base on our own experiences.

Thank you for taking the time to tell me your story, I will certainly be back to tell you all and for loads of advice and help