I was diagnosed with a sarcoma under my tongue in 2015, during tests for another medical inquiry, so was very lucky it was picked up relatively early.
However when I tried to find out more information I was very frustrated, there’s very little out there as this is only recently recognised as a distinct sarcoma, so this is what I think I know but it’s not gospel and you need to cross question your specialist!
It is a rare sarcoma with less than 100 cases recorded – whether this is worldwide, UK only or USA only I don’t know. The most common site is the head and neck (tongue and oral cavity) but it can appear elsewhere.
It has a high local recurrence rate of around 40-50%, but this is directly influenced by the margins surgeons are able to take. It has a low recurrence rate of metastases of 14-15%, mostly in the lungs but also the limbs and abdominal cavity. Recurrence seems to mostly happen in the first 36 to 48 months, though one paper states 6 months to 4 years. Recurrent sarcomas are often of a higher grade.
Like a lot of cancers, cause is unknown but there seem to be 3 suspects;
- Previous trauma
- Silver clips – whether these are dental or medical clips, I can’t discover, but dental seems most likely.
- Auto immune problems
I have vitiligo, and previously suffered from mild psoriasis type rashes and chronic rhinitis (strangely these disappeared after chemotherapy some years ago!), so #3 would seem to be implicated if there is truth in the suspicions.
I had a hemiglossectomy and free SCIP flap recostruction in April of last year losing the front right side to the mid line; it is a long operation and recovery times vary but I was only in hospital for a week, drip fed for 6 days and able to eat most foods by mid July, though some foods are no longer worth the effort and I have to remember to take smaller bites! My speech is affected but I can make myself understood and my family is highly amused by the fact that I sound mildly drunk after a few minutes conversation. I am now about to undergo a further operation to reduce the bulk of the SCIP flap, in hopes that my eating and speech functions will be improved.
I hope this will be of help to anyone faced with a similar situation.