Flap or no flap? And neck dissection or not?

Hi Helen. 
most if us here have/are dealing with throat cancer but there are a few members who found themselves in the same predicament. 
I’ll tag a friend who had a flap and a dissection. Hopefully you can chat 

 Panch can you help? 
There are a couple of useful threads here too 

https://community.macmillan.org.uk/search?q=Flap#serpq=Flap&serp=1&serptag='head%20and%20neck%20cancer'

You could also look at joining Young Tongues and the Mouth Cancer Foundation social media pages 

https://www.youngtonguesglobal.com/

https://www.mouthcancerfoundation.org/

 Hello Helen.

I’m 4 years out of surgery for Tongue cancer (thought to be Stage 2 but turned out to be stage 3).

Like you my lymph nodes were clear following a biopsy, and fortunately, they indeed turned out to be, but it is the site where any metastasis most often manifests itself.

I BELIEVE that increasingly surgeons avoid it if they’re able, but they will have assessed all sorts of things, like the analysis of the main tumour and it’s precise location. Leaving them there is obviously that bit riskier.

Flap or no flap?

I lost just over half my tongue, but luckily kept the “tip”.

Unusually, my surgeon took my “flap” from my calf. While I had some trouble with it (I managed to rip it open a few days after I got home - and it got infected. ENTIRELY my fault!). 

Pro - out of sight and the skin can just be pulled together.

Cons - it’s tricker to remove the skin as the blood vessels are smaller. Therefore there’s a slightly higher risk that the flap might fail and it makes your operation a bit longer

Otherwise it’s usually from your inner arm.

Cons - Some people find it aesthetically problematic.
If that piece of skin isn’t wide enough, you might need a second one. You may well need it patched from elsewhere as it’s not as stretchy 

However very few surgeons offer the calf 

No flap? Most of the people I’m aware of without a flap have just had a “partial” glossectomy” - ie just a slice 

Otherwise it’s because of flap failure - ie the blood supply has failed. 

i think it can be difficult for a while - especially managing the choking risk, but people seem to manage to adapt. Personally I’d ask in the groups that Dani mentioned Beesuit 

At Stage 2 I’m surprised it’s being offered - they will definitely want  you to be prepared for a flap as there’s no real knowing what they’ll find once they go in. Mine was deeper than anticipated - which was why it was upgraded to Stage 3 (4.3 cm).

Feel free to reach out directly if you like - no question is too daft.

Btw, where are you located?

Stephanie x

Thank you so much! I think my issue is that if it’s 20% or less tongue removal then no flap. 40% or more flap. But they think mine is a third so 33% I fit right bang in the middle. 

so you had neck dissection too? How was that? 

thank you again. I’m sorry you had to go through that. 

In all honesty the whole process is something you’d not wish on your worst enemy. With a 9/10 I’d put child birth a 3 and a hysterectomy at a 5 (sorry).

IF a partial is more likely, then that cuts down on a lot of other processes.

Compared to the actual tongue excision, the neck dissection feels like nothing. HOWEVER it is through that neck incision that they have access for any flap to be “plumbed into” your blood vessels in your neck.

What I would say, especially if you’ve already had a second opinion, is to waste no time in getting it out. It’s an aggressive cancer, and wasVERY painful by the time of my surgery.

I have made a document about the process of this surgery (as well as some photos). I hold nothing back. It’s up to you whether or not you want to read it.

I’m not wanting to scare you, but personally I’d rather know.

Hi Helen Ann

I was scheduled to have tongue surgery and my surgeon said I would not need a flap.  He was planning on removing around 3cm.  However when they opened my up the tumor had gone and so they abandoned the surgery.  So I can't really help more than that.

I've had 2 neck dissections and initially recovered quite quickly from both.  Depending on what they do the shoulder and possibly some facial muscles may be impacted, normally temporarily.  In my case I had no problems washing my hair etc but I did have problems reaching out to pick something up at arms length.  That lasted around 18 months, gradually getting better.

The main issue is likely to be moving the accessory nerve.  This controls the shoulder and takes some time to recover from the bruising.

We are all different and have different surgeons so the outcomes and timeframes are unpredictable. 

Wow, how did it disappear? How long was that after the scan showed it was 3cm? If you were following an unconventional protocol and don’t want to share here then would you mind messaging me to tell me? I’m already trying something so I’m very open. 

You are a miracle. 

Helen Ann said:

You are a miracle. 

Peter was lucky,  then unlucky. Have a read of his profile. He presented as cancer of the unknown primary. 
If I remember correctly his cancer was found in the tonsil tissue at the back of his tongue, like mine but I’m happy to be corrected. 
Is your cancer HPV positive, Helen? Do you know? 

I must say that knowing Stephanie as a friend her counsel is sound. 

Hi Helen

I had a T1 SCC, diagnlosed a year ago.

My surgeon briefly mentipned neck dissection, but didn't formally offer it. He told me I was having about 25% of my tongue cut out. He never mentioned the possibility of a flap. All scans prior to surgery were clear, and I was at early stages.

However at my 6 month follow up appt, he was discussing with a junior colleague in the room how he believes too many surgeons automatically go for a flap when therw is no need, and cited me as an example of the "no need".

Incidentally the neck dissection gave me no shoulder issues, tho my neck can get tight.