Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Not operable, saying radiotherapy plus maybe chemo?

Bluebird6
Posted by

my husband had biopsies yesterday for base of tongue tumour suspected scc plus he has large lump in neck which they’ve said will be the same thing although they didn’t look at that specifically so far. They said yesterday an op to remove the tumour won’t be possible due to where it is and size and that it’s likely he will be offered radiotherapy with possibly chemo as well. 

I just wondered if anyone else has had a similar scenario and also if he was at a bigger more specialist centre would they maybe have a different view, our local hospital is more of a general hospital that is developing it’s specialist  services rather than it being a big teaching hospital. We still haven’t seen the consultant yet which concerns me a bit as this is obviously a serious problem.

any thoughts please?

L

LindaWT
Posted by

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

Margaret853
Posted by

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

"Life might not be the party we were expecting but while we are here we should dance."

PathHill
Posted by

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 

Gareth
Bluebird6
Posted by

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

Bluebird6
Posted by

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

Bluebird6
Posted by

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

Bluebird6
Posted by

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

Hellebore1
Posted by

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

Hellebore1
Posted by

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

PathHill
Posted by

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. 

Gareth
Bluebird6
Posted by

Hi Hilary

thank you for all this , it’s reassuring to hear that this is a treatment pathway that is well established for this I suppose I had hoped it could be completely removed and then have some radio or something afterwards to make sure but I guess we are not in that catagory. I think from what he said the side effects would make surgery not an option in his case but they havent had the full info and meeting yet we have to wait two weeks to get the full outcome of all the tests. Can the tumour actually dissolve and disappear with radiation and chemo, it seems so solid it’s hard to imagine I had thought they would at least take his neck one out. 

How are are you doing now? Hopefully all is well with you after your treatment?

will definitely be asking the questions you highlighted planning to write a list but last time the list just got forgotten in the shock of seeing that tumour.

thank you fir help much appreciated 

best Wishes 

L

Bluebird6
Posted by

My husband is a bit like that and would be happy I think to go along with what they say I just want to be sure it’s all been fully explored before decisions are made so I’m going to be asking some questions for sure. 

Thank you it’s helpful to get your perspective 

best wishes

L

Bluebird6
Posted by

Hi Hilary

just read In your profile re the recent update and your experience hope all is still going well albeit it sounds as if the side effects are ongoing for you which I’m sorry to hear and hope they resolve for you soon.

just wondered which part of the country you had treatment? 

We are in the East Midlands so not referred to a big teaching hospital which has made me a bit nervous but I take on board what you’ve said and really hope we are getting comparable care, no pet scan here though!

best wishes 

L

Hellebore1
Posted by

Hi Bluebird. Yes to the lump just disappearing with chemoradio! As many on this site will confirm - a cancerous neck lump just seems to melt away as treatment goes on. Yes there are side-effects and yes they seem to go on and on, but I’m still here, disease free as far as I know and doing what I want to do each day - albeit accompanied by my bottle of water, chewing gum, batteries for my hearing aids and a toothbrush!!

I live in the South West and was treated at Taunton hospital - defo on the smaller side, but my treatment seems to have been identical to many others.

Your husband will get his treatment plan confirmed once his Team have all the info they need and have had a chance to discuss what is the right treatment for him. You should get every opportunity to ask questions and I’m sure you will. Until then - try to get on with your lives - your husband will be well looked after.

Best wishes,

Hilary