Hey there! Am new to this site and after just skimming through a small part of it have found several answers to some burning questions (so to speak) but more importantly a place to go that one can share experiences and feel like they’re part of a club. Not a club that anyone particularly wants to be in, but nonetheless a shared experience club.
I am a 52 year old guy from Western Canada have just had surgery to remove a squamous cell tumour from the left side of my tongue and 14 lymph nodes removed from the same side. One of the lymph nodes was invaded and I now await radiation therapy. Approximately 20% of my tongue was removed so my speech is slightly affected but getting better slowly. Area where lymph glands were removed still swollen after a month post op. This was a recurrence of a tiny spot that was removed around 4 years ago. How it got to get to the size it was is a whole other story.
I guess I have as many questions going in to radiation therapy as I did going into surgery. What to expect when it is all done. What will I be left with or without? How is this going to affect me long term? Any input or suggestions etc will be much appreciated. I look forward to participating on this site. This is a totally new thing for this techno dork to do!

Welcome to OCF, Al! We can help you with info and support to get you thru whatever paths you will be taking to eliminate the cancer. As you read thru posts, just remember everyone is different and can have vastly different experiences with treatment, recovery, etc. By reading and learning about your illness, it makes you a strong advocate for yourself. Knowledge is power! Theres also the main OCF stie with page after page of info too. Click on OCF website on the bottom left of any page to go to the main OCF site. We also have a newsfeed that sends emails with all the current news about OC, treatments, studies, OCF, etc. That should automatically pop up when you first go to the main OCF site.

Hey Big Al, I too am post surgery and pre-chemo/radiation. Mine was found in my tonsil, 2 lymph nodes and creeped outside one of the nodes. I am curious since your lymph node was involved, why they aren't suggesting chemo ? The frustrating part of this diagnosis that I have found, is the lack of information on lower dose treatments for the radiation & Chemo for the HPV-positive diagnosis. I know the long term prognosis seems to be a little better for the HPV folks, no information is trickling out from any of the ongoing studies. Good luck with your treatment...

Welcome Big Al!

Radiation causes short and long term side effects. Short term, like rope mucus neck burns, tiredness can last up to three months, and long term effects last longer than three months, even years, and sometimes showing up years later like fibrosis, dry mouth, etc.

Radiation toxicities are also dependent on the area (s) radiated, type of radiation, the dosage amount in Grays, the frequency in Fractions, if prior radiation, surgery, ipsilateral or bilateral sides radiated, other co-morbidities, general health and age, even experience of the radiation oncologist and center.

For me, my first chemo was worse than any radiation I had, and did it 5 times, three different types, so everyone is different.

How many nodes were found cancerous?

As suggested, the main site has plenty of information. Good luck!

Hey Paul!
Sounds like you really know your stuff and been through a lot of stuff! They only found cancer had invaded one of the lymph node‘s. I guess the surgeon decided to take out the lymph nodes as a precaution because nothing showed up on the CT scan but because the tumour was thicker than 6 cm it had a 20 to 30% chance of spreading to the lymph nodes. I’m glad he made that decision.

Hey Pgrady, All of the doctors that I’ve talk to seem to agree that radiation is the way to go on this. Maybe it’s just because the lymph nodes were lightly touched and this is more of a precautionary maneuver. As for HPV, I know nothing about it. My cancer was caused from years of smoking and drinking combined with some susceptible genetics. Heck of a way to quit smoking! Good luck to you too! May the radiation be gentle to both of us 👍

I agree, as far as radiation. I once heard, the key to survival is controlling the nodes, besides the primary. The reason I asked how many nodes were involved is that it can determine the treatment and prognosis. The least nodes involved the merrier in this case. Recently they like to see more nodes removed, I think like 16 or 23, as minimum, as I read two different articles, and the more the better, but do know everyone is different in numbers, and location, so I don't know how that factors in. As far as being HPV related, that's usually with oropharynx cancers like Base of Tongue, and Tonsils. Even if so, it doesn't change matters with cancers outside the oropharynx, which is of different biology, recently deescalation of treatment, and favorable prognosis.