Informed today I have a squamous cell carcinoma (SCC)
- stage 2 2.1cm x 8mm - the medical term being T2 N0 M0 (I think I wrote that down correctly)and in terms of grade 'moderately differentiated'.
I'm having my operation next week and will have around 1cm around the ulcer removed - a third of my visible tongue. I'll also be having a saliva gland removed and a neck dissection for the removal of my lymph nodes on one side.
Nothing particularly untoward came up on my CT or MRI scan that wasn't already obvious - but still it's a lot to take in, though I appreciate it could have been worse.
Three and a half hours in theatre and then up to a week in hospital being fed via a nasal gastric tube.
May need radiotherapy, but apparently I will not know this until the pathology reports 10 days after my operation.
Seeing the head/neck specialist nurse in a couple of days when I'll know more about after care re. swelling,restricted movement in my neck/shoulder speech problems etc.
Told that it's very unlikely I have HPV as this is not prevalent in tongue cancers such as mine - more likely in those of the throat etc.
Any observations welcome.

Sounds exactly like my cancer though my tumor was a little deeper - 1.4 cm. BRING SOMETHING TO WRITE WITH. Have someone at the hospital to advocate for you. I am not sure what its like in hospitals in england... but the nurses here were brutal, and communication was impossible without a pen for the first few days. For me the worst part about the surgery was the trache. Pain wise I was okay. Are they rebuilding your tongue too...

The surgery is long but you will get through it okay. If it comes back that you dont need rads and chemo, then keep a very very close eye on your neck and mouth, because even though they remove the nodes and stuff there could still be some there on a microscopic level. So if something does pop up high tail it back to your ENT Pronto... do not leave it!

If you have any questions about my surgery, please PM me Ill gladly answer... its still fresh in my brain! there are a few people here who what had this operation I am sure they'll share. Take care and good luck

Probably spot on about the HPV prediction. We are seeing 3 groups of OC patients now, 1. Tobacco related, 2. HPV+, primarily base of tongue or tonsil primary and 3. Neither tobacco related nor HPV+ and the cancer responds to Tx similar to #1 above.

The only thing I might question if I were you is why the need to take a saliva gland and why the need to do a ND?

Good luck and we will be here 24/7 for you.

I agree with David. Why the ND and the removal of the saliva gland? Unless the gland has cancer, do NOT let them remove the saliva gland. They used to do this on a routine basis because they assumed it would not funtion anyway after radiation. This is no longer standard protocol. Defintely question them on this. You'll need all the saliva you can get.

I wish you luck on your upcoming surgery.

Take care,
Eileen

Hi, Brendan,
I had a similar surgery to yours, and I also had a similar diagnosis, although my lesion was not as big. It did metastasize very early, there are theories why that happened, but none proven. Tongue cancer (David's catagory 3 that we fall into) is very aggressive and tricky. But treated in ways that employ surgery first and radiation where needed, some studies have shown the results/prognosis can be very good. My submandibular gland was also removed. Prior to my surgery I was having some trouble with my submandibular functioning correctly because of where the duct came out and my first tongue surgery. My parotids were spared. I had saliva throughout my treatment, vanished although not totally for a while, and is coming back now. If you have a choice, keep your parotids, they are the best.

My cancer was also moderately well diff. So that means it is more likely to metastasize than well diff. There is a lot of controversy about neck dissection. If you don't have it and then have a metastasis, then you could possibly think, "I wish I had done it." If you do have it and get along great except for the problems associated w/the surgery, then you might think, "I wish I had not done it." But having said that, the same person may say "I'd rather be safe than sorry." Scans are only accurate to a point. I had a CT one week that showed no involved nodes, then 4 weeks later was back with one.

Probably what I would suggest is to visit with your doctor about the neck dissection, and why he or she recommends it. I have seen studies where they look at the odds for Stage 2 oral tongue cancer and what determines whether or not they do the dissection is the depth of the lesion, or aggressiveness/histology of it--we are talking about the differentiation, or whether or not the margins were wide. So that might be a why.

Best to you,
Anne