I was diagnosed with stage 1 oral cancer back in June. Cancer was on back left side of tongue. Got pet scan, nodes looked ok. Did surgery, dr able to get clean margin, did modified lymph node disection.

Started radiation beginning of Oct. They are doing sall dos of radiation because there was evidence of perinural invasion.

Couple of questions:

I am scheduled for 5 dys a week, 7 weeks of treatment. Anyone gone with less than that, and what the outcome.

My toungue still feels like pins and needles, normal? If yes, how long after surgery did it take to go away (or does it remain?)

Same question regarding neck scar, real tough shaving. Any advice and does this get beeter over
time.

Anyone gone through radiation without experiencing side affects?


Thanks and God Bless

Tom

The usual treatment schedule for radiation is 33-35 days, for a total of 66-70 Gy (gray), so it sounds as if you are getting about the usual amount. Is it IMRT radiation?

It is almost impossible to get through radiation treatment for oral cancer without side-effects; if fortunate, most will eventually resolve. The Oral Cancer Foundation website has a *wealth* of information on side-effects, from mucositis, thrush, trismus, skin burns, dry mouth etc. and advice on ameliorating or treating these problems. Go to the side-bar and click on "treatment." Also, folks on the forum have lots of good advice based on their own experience.

Gail

not imrt radiation, dr said given the dose of radiation I would be getting no difference between IMRT and radiation treatment I'd be getting

Regards

tom

Whoa! You might question him/her again on that one! Are you being treated at a major cancer center? As far as I can see, IMRT seems to be becoming the standard for head & neck cancers to help salvage spit glands. Get another opinion. I had 37 IMRT treatments & as far as side effects, there is no avoiding them. The good news is they are mostly temporary. That being said however, XRT radiation will permanently affect your spit glands as anyone here that had that type of rad can tell you. As far as all your other symptoms, they seem pretty normal. Shaving? After a while you won't have to shave because the whiskers will stop growing & start falling out. A nice clean shave! The beard does come back mostly. Not trying to scare you but, I have recovered almost all of my saliva production to date & most here who wer'e treated with IMRT have had the same experience. Keep us posted, Erik

Hello Tom.

Welcome to the Oral Cancer Foundation! You won't find a more informative site on the web for this diaease.
I received 33 treatments of IMRT radiation eight weeks after surgery for a stage 4, poorly differentated SSC tumor on my right tonsil. (stage 4) I had a pech flap.
I was one of the lucky ones that had almost no side efects others have experienced from IMRT. I was tired more than normal but I think I would have been anyway. Going thru a 17 hour operation will do that.
At times I wondered if the maxhine was on? No burns, thrush, mouth sores, nothing at all!!
Hoping you can sail through like I did. There is plenty of info if you use the search engine at the top of the page. You want to have all needed
meds and supplies ahead of time if you suffer alot of side effects.

All My Best, Danny Boy

Hi Tom, I'm a stage II tongue cancer survivor who also had perineural invasion and thus radiation (and in my case I chose to have chemo as well to be sure the rad. was as effective as possible). I had IMRT and my understanding is it should help to save most of one big salivary gland--though right now, 4 months out, I'm having pretty severe drymouth (but it can take up to a year for salivation to return). I had 33 days of rad--66 Gy. I think this is pretty standard these days.

This is a great place to get support as you go through rad--everyone's experience of it is different but no one will tell you it's a walk in the park. Nonetheless, it's do-able with the support you'll find here.

Nelie

Thanks for the feedback. I am being treated at Moffit in Tampa.

Regards

Tom

Hi Tom, Yes, there are side effects. I'm 15 years
out from my radiation and chemo. Still having
side effects and Neck pain.
Cathy

Tom --

Our Hopkins radiation oncologist and our radiation physicist both said that there is no advantage to using conventional radiation as they are actually getting better results from IMRT (re cancer control) -- more radiation delivered to target and less to non-target -- and that the dry mouth from conventional radiation is pretty bad. Thus at Hopkins all HNC patients are now on tomo-IMRT or regular IMRT. Having said that, you should ask about using amiphostine to protect parotid (large salivary) glands -- not an easy drug to take but it does work. However I would also ask seriously "why not IMRT" -- assume they have it, Moffit is a large center, and even our local hospitals have it now. My husband had to have his last 3 treatments on conventional radiation (3-D conformal) when tomo-IMRT went down for a week and those three treatments caused more inflammation in front of mouth and tongue than 30 days of tomo-therapy. The radiation tech said a lot of their IMRT patients made the same observation. Fortunately that soreness went away rather quickly (gone now 2 weeks' out) and he is left dealing with the results of 33 days' on the base of tongue and tonsil bed -- primary target area -- but even that is starting to clear up.

One thing we were advised -- by a breast cancer oncology nurse -- is to pre-condition the skin with Biafine and Radicare Gel (obtain these from your hospital) as soon as you know you are having radiation. Both of these product's directions say the same thing, start using before treatment starts. Barry did it for about 2 weeks before and I think it really helped as his skin never got really broken, just slightly reddened like a mild sunburn. Keep using these materials throughout treatment and until skin heals.

You will also need to consult a dentist (who has experience with radiation effects on teeth and jaw) to see if any dental work needs to be done, and to get fluoride trays made which you will use for years if not forever. Ask him about exercises to reduce the risk of trismus.

Again, all of this is on the OCF web site...

Gail

Tom, My husband was also treated at Moffitt and they also tried to give him conventional radiation. We did a lot of research in a very short period of time (about a week was all we had) and discovered that IMRT produced far fewer side effects and we were particularly concerned about the risk of permanent dry mouth. My husband almost jumped ship over to MD Anderson center in Orlando or St. Josephs in Tampa, but the R.O. decided to give him the IMRT treatment so he was treated at Moffitt. At the time, the R.O. told us they only used IMRT for patients who do not have surgery as well. Getting amiphistone at Moffitt is problematic also unless you're signed up in a clinical trial (or at least that is what my husband was told).

Connie