Tongue tumour

Hi Joel and welcome.

The person to contact is your CNS who should explain things to you

Generally if cancer is found in the lymph nodes you get RT or CRT but not always. If the dissection is clear of cancer you might well be just on watch and wait. 

Thanks, that is helpful to know. The clinical response has been amazing. Information flow, less so.  

What is a CNS?  

Your clinical nurse specialist. Everybody with  cancer diagnosis is allocated one. Often they are Macmillan nurses too. You should have their number somewhere in all your paperwork and have probably already been introduced. 

No. Nothing like that. The only paperwork I have is the appointment letters. I have the number of the unit though. And a pre surgery assessment next week so will ask about that. Thank you. 

Hi Joel and a warm welcome from me.  It is great that you have clear margins in your tongue.

Not sure what your neck biopsy was - fine needle or dissection. Sounds like they now want to do a neck dissection - I had similar and they removed most of my lymph nodes on one side of my neck to look for cancer - at that stage they did not find anything untoward.  I guess your route forward will be defined by the histology as to leaving it and being regularly checked over the years to see what happens or moving on to RT with/without chemo.

It can be frustrating waiting for all the tests etc but the more information they get the better they can define the way forward.

Hopefully you can get the info you need - especially who your CNS is - 

Thanks. The biopsy was taking out the first lymph node at the same time as operating on my tongue. Had not expected it to be quite so uncomfortable so bracing myself to have it all done again - but at least I won't have two things to deal with. 

I found the dissections much easier to manage than my tonsillectomies!!  I had 2 different but equally good surgeons working on my dissections and they did a great job.  The scars barely show and the long term side effects are minimal in the grand scheme of things. 

Have a look at my profile/journey.  It is unusual, but gives you an idea of options I chose when there was not good evidence of cancer present.

I did read your profile. Puzzling as you did not seem to have cancer but still opted for lots of treatment. The radiotherapy sounds awful but online advice seems to say it is not too bad. Is it because it targeted your throat that you needed a PEG?  

Re the neck biopsy, maybe I was just unprepared. I'm thinking a tiny cut to take out a node the size of a baked bean and wake to find a swelling the size of a goose egg and two inches of stitching. And annoying earache. At least it is winter and no-one is questioning my new love of scarves and hats!  

It was more than three weeks ago though and is much better. My tongue is still a little bit tingly and numb and I have not tried a packet of crisps yet but apart from that, pretty normal. In the days of yogurt and mashed potatoes, I craved fish and chips so that is my next goal. 

Glad to see you are coping well. You've been through a lot. So far, I do feel I have been fortunate. Especially as the lump on my tongue has been there a while. I thought it was a chipped tooth catching the side of my tongue - so did the dentist. It was only a random thought of 'I suppose I should just check with the GP as it has not gone away' months later that catapulted me into biopsies, scans and surgeries. 

I definitely did have cancer.  2019 it was found in a lymph node and indicative of HPV+ SCC.  However having had scans and further surgery to locate the primary nothing was found and I opted for "watchful waiting" rather than CRT.  A year later a tumour was positively biopsied in my base of tongue but 6 week later it had gone when the came to do a partial glossectomy.  I went back onto watchful waiting.  Working theory was that my immune system was dealing with the cancer.  On a fairly regular basis I had panendocopies when there were indications of a tumour, but for a number of years these were false alarms.  Then a routing ENT check found something that was more serious and worth expending my one shot of CRT on.

I was lucky.  My dissection scar is around 10cm and I never had a significant swelling with it.  Long term stiffness and medium term issues with my arm (all long gone now).

Safe avoidance of CRT brings lots of benefits.  Surgery has its own issues but CRT is more problematic for many in terms of dealing with the side effects.

I find ridge crips good, but not highly flavoured ones.  When I am out fish and chips is always a safe bet.  You'll get there in time.

Strangely one of my false alarms was my tongue rubbing on a rough tooth, but within 24 hours of me raising it the hospital had checked and reassured me.

Good luck going forwards and ask any questions you may have.