Squamous cell base of tongue cancer

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Hi, I’m Cozzy1 and I’ve recently been diagnosed with squamous cell HPV cancer base of tongue.

I hadn’t been to the dentist for a few years and I had at least 2 appointments cancelled by the Dentist and I took ages to phone up for a re-booked appointment so I am very surprised the Dentist has spotted it very early seeing a suspicious lesion on the left side base of tongue.

There’s no CT/MRI evidence of spread to lymph nodes and it looks as though I’m gonna have an operation in 2 weeks for partial removal of of side of tongue and neck dissection selective lymph nodes removal just in case it has spread microscopically to lymph nodes (which wouldn’t show on scans).

I’ve been told it is unlikely that I’d need radio and chemo afterwards but that depends upon examination of the ‘good tissue margins’ of the partial tongue removal. The piece the Surgeon removes is to be tested to ascertain the GRADE of the cancer and if it is an aggressive type. This is where I’m confused coz if the margins prove clear BUT the grade is a bad type, will this change the situation?

I’ve no symptoms and after the biopsy the lesion is now nearly healed after 2 weeks (visually); but it has a rough feel to it and I’ve been told it is 1-2cm underneath, I can feel a small lump but the lump is diminishing each day.

I’m also confused coz It says oral cancer squamous cell spreads and grows quickly. It has been 6 weeks since diagnosis and 7 weeks ago when I went to the dentist the lesion was well developed and had tissue missing and red and white edges.

It just looks like a pin-prick now. How can this be?

I was not gonna have a radical neck dissection and flap and with radio/chemo etc and I would have died probably within 1 year... but as it stands I’m gonna go for the lesser neck dissection selective lymph node removal with about 6 square cm of tongue removed and hope that’s it!

The results are: T2 N0 M0

I wish I was a Wizard and could help all of you.

I’ve been a professional singer in the past and probably would have gotten somewhere if I’d not ‘started’ late at the age of 38; but if I get over this, after recovered well enough I’m going to the studio to record an album and sell the albums for Macmillan.

I could record the album this weekend but I’m not gonna do.
I will record it post-op with all or any problems at that time.

Cozzy1

Cozzy1 over 3 years ago

Forgot to say; the tongue lesion is gona be cut out via mouth not via the neck dissection.

I would not have gone for the latter, so still can’t believe it’s been caught early, the odds if that are astro.

Good luck to all.....

Cozzy1

RadioactiveRaz over 3 years ago in reply to Cozzy1

Hi Cozzy 1

welcome to the club none of us want to join but here you are. We’re a small community whi help each other out. I was T2N2NM I didn’t have neck dissection as one if my lymph nodes was close to spine for operation. I went down the chemotherapy radiotherapy route. HPV tumours respond well to treatment so wait until the op and histology has come bsck. From diagnosis ti treatment starting I was 63 days plus with hindsight I probably had had it for 3 months previously so don’t stress please. Trust your team. Any questions just ask if we can help we will

Hazel

Hazel aka RadioactiveRaz

My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

2 videos I’ve been involved with raising awareness of HNC and HPV cancers

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

PFJTHS over 3 years ago

Hi Cozzy1

Welcome and I am sorry you find yourself here.

Thus far I have been down the surgical route, but I am not afraid to bring in the big guns of radio/chemo if and when they may be needed.

For context I've had 2 neck dissections, tonsils removed and an aborted TOLS on the base of tongue.

Cancers can do funny things and at the moment I am the king of that on here!!! Many H&N cancers are small and relatively slow growing. The majority are survivable post treatment with a good quality of life as will be attested to by many regulars on here.

To save me repeating my story have a read of my bio which currently deals with the first 6 months of a 18 month+ journey, but will probably give you an idea of what may happen in your case.

Honestly, in my case the surgery sounded worse than it actually was. You virtually cannot see the scars on my neck and over the 18 months I've regained much of what I lost from the side effects of the surgery. You will probably find a lack of saliva (depending on what they do in the dissection) and maybe swallowing becomes a little more difficult. A bottle of water by your side will be you new best friend!

I was up and out walking the dog again within a few days of the surgery. It may be a little longer for you due to the to successful tongue surgery and if you need to be temporarily tube fed. Very few do. I was due to have around 5x5 cm of tongue removed and slated for 2 nights in hospital.

Good luck and ask any questions you want to. If you don't want to ask openly feel free to private message me.

Peter

See my profile for more details of my convoluted journey

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Squamous cell base of tongue cancer