Not operable, saying radiotherapy plus maybe chemo?

Hi Bluebird

I also had base of tongue cancer and had the tumour removed by robot a year ago.

There are several hospitals in the country that have robots for this type of surgery -  TORS - Transoral Robotic Surgery.  I had my op as part of the Pathos trial which is looking into successful treatments for HPV driven cancer.  Various hospitals around the country are part of the trial.  It may be worth investigating for your husband.

Good luck with it all.

Linda

Hi Bluebird6

I had a base of tongue tumour in 2013.  I was told mine couldn't be operated on but they didn't seem to think that was a problem as it could be treated with radiotherapy and chemotherapy.  I had a neck lump too which was removed with a neck dissection. 

I didn't always see the senior people in my MDT but I was always reassured by knowing they had been fully involved in my treatment plan and care decisions.  You and your husband have to be completely happy though and this is such an important and personal decision.  So if you have any doubts whatsoever I don't see why you shouldn't ask for a second opinion, and look into whether newer treatments are available elsewhere. 

I never wanted to be anywhere but at my nearest cancer hospital.  However a good friend, with a completely different type of cancer, was absolutely determined to go to one of the big London hospitals so that was where she went.  It meant renting accommodation for the duration but it was what she definitely wanted.  So I think it's a very individual choice.  The important thing is that we were both completely happy that we were in the best possible hands and we're both doing very well.  

Good luck for whatever you decide. xx

Hi I also had base of tongue cancer from HPV with enlarged lymph nodes in my neck. I only had chemotherapy and radiotherapy, no surgery. Should hear on Tuesday whether this has been successful in treating them. 

Treatment is designed to be very personal and fit with individual circumstances. You need to have confidence in your medical team though. 

Best wishes to you 

Hi Gareth

thank you for  sharing that , I hope all goes well on Tuesday and it has been successful, just wondered if it’s ok to ask, apologies if you don’t want to post any further detail I completely understand, what the reason was that they gave you for choosing that treatment option ? They said it may possibly be either just radiotherapy or both radio and chemo.

thank you

L 

Hi

thank you that’s really helpful to know, my hubby also has a neck lump which is quite large and I thought they might have said they would remove that at least but that wasn’t mentioned. I hope all went well with your treatment and things are good in that regard for you now? 

Will definetly look into the second opinion just to be sure we have got the right approach I think.

L

Hi Linda

thank you for the info, I have read about the robot surgery and wonder if he is a candidate for this do wil look into it, hopefully all went well fir you and still is?

best Wishes 

L

I will look into criteria but just wondered if yours was caught quite early or if they had to do anything re lymph nodes,?

Hi Bluebird. Please worry that your husband is being offered any lesser treatment. He’s not. Many people have solely radio and chemotherapy for Head & neck cancers - with every aim to cure the disease. Of course everyone and their disease is different - some best with surgery and radio, some surgery alone, some radio and chemo only etcetc. And hospitals vary a bit too in their preferences, but no one will be offered a limited choice of treatment where they need more, just because the hospital is smaller. 

I had a biggish neck lump (seemed big to me) and it proved to be SCC arising from my tonsil (no symptoms at all). They advised radiochemo only - I asked about surgery which they would have done if I’d insisted, but they were concerned that I would have needed some radio after surgery anyway and then if I’d had a recurrence there were no options left. It won’t be just “a bit of radio and chemo” that your husband will get - it would be what is called Radical Chemoradiotherapy - highly successful particularly with HPV driven cancers.

However - you need to ask some questions of your team - definitely worth asking if you can see a Consultant - ask about surgical options and also the likely outcomes of surgery versus chemoradio. If in doubt of course you should get another opinion - but listen to your own team first. And don’t worry - its not a second rate treatment! It will be tailored to your husband and entirely appropriate to his disease.

best wishes,

Hilary

Sorry Bluebird my reply should read "please DON'T worry". Typo!

I must admit I didn’t ask and accepted what they advised. To a certain extent I was just grateful there was no surgery involved. If I was in the same situation now I would have probably asked more questions.