Bonnie,

I was 39 when I was diagnosed (17 years ago). I had never smoked and was a social drinker and otherwise in good health. Several doctors failed (over a period of more than a year) to diagnose my tongue lesion as cancerous. Once it finally was determined that I had SCC, my cancer team felt I needed to have a modified radical neck dissection, followed by radiation. The surgery included removal of many lymph nodes, all of which were clear, but the tumor was determined to be poorly differentiated, so my doctors were obviously concerned about possible aggressiveness.

I had standard XRT radiation, as IMRT wasn't even available back then. While I had many of the common side effects of radiation for months afterward, I have recovered substantially over a period of time. ALL of my taste sensations returned after several months, my dry mouth problems subsided quite a bit (with the help of medication), and I can eat just about anything I want to. The surgery scars healed fairly quickly and left almost no evidence of what I had to have done. Most people who have met me since my treatment have no idea (from my speech or my appearance) that I ever had surgery or radiation.

I say all this to emphasize that some of the extreme after-effects you are hearing about are likely the "worst-case" scenarios your daughter's doctors are required to describe in advance. Since she is being seen at a major CCC, it sounds like she has a very experienced team who can do their best to minimize the long-term impact while still doing what is necessary to get rid of her cancer.

Please keep us posted on how she is doing.

Cathy

Just so you know, you don't have to search the "web" to find out about neck dissections. New posters here forget we have hundreds of pages of information, and this message board is only one part of the site. So you are informed about the different types of neck surgeries go here http://www.oralcancerfoundation.org/facts/neck_dissections.htm At the bottom of every message board page is a link to the home page of the main OCF site.

Actually the current rate for non-smokers to have SCC (per Johns Hopkins data) is 50% or more. At Hopkins they are finding 70% of their new HNC patients are HPV (human papilloma virus-16) positive (some of these are also smokers). These cancers present first in tonsil and base of tongue, almost none are oral (outer or lateral) tongue cancers. Most of these folks are also a lot younger than the "traditional" oral cancer patients, who also tended to be smokers. This changing demographic is pretty well documented throughout the country -- our ENT (in private practice now) says about 50% of her patients are in their 20s and 30s. And most never smoked.

The usual treatment protocol is chemoradiation, hopefully (as noted) with IMRT and then, if necessary, a planned neck dissection post-treatment. If your daughter has a base-of-tongue cancer she really should not have surgery beforehand, this can lead to a lot of permanent speech and swallowing problems and is not done by doctors at the top 3 CCCs, e.g. MDAnderson, Sloan-Kettering and Johns Hopkins. Whether she would need a ND afterwards depends on how well she gets through the chemoradiation, which is no walk in the park by any means but is very effective in controlling the cancer. My husband did not have a ND, it was not recommended by his medical or radiation oncologists, or his ENT surgeon, based on many tests after the end of treatment. He is now exactly one year from end of treatment and is doing great!

If your daughter has a base of tongue tumor, you can have a sample sent to Hopkins for HPV-16 testing -- http://pathology.jhu.edu/labservices/hpv.cfm
--this is of importance only because HPV+ cancer tend to be more responsive to radiation and far less likely to recur. (It will not affect the initial treatment protocol.) Our dental oncologist, who is on OCF board, told my husband last week he has never seen or head of one spreading beyond the cervical lymph nodes (e.g. to lungs) although this is still montitored carefully by our hospital as they are super-conservative.

Hopkins is now testing a new therapuetic HPV-16 vaccine, and my hisband just entered the trial. If effective, in years to come we may have another weapon in the arsenal against this nasty disease.

And yes, you should go through the OCF web pages as they are about the best I have ever seen (for comprehensivenes) on any cancer site.

Gail

A p.s. -- most HPV+ SCC of the tongue and tonsil is "poorly differentiated" which is strange -- as this is usually a bad finding for cancer -- but in this case, typical. My husband's was "moderately well-differentated" and he was initially told that this might mean it was not HPV-induced -- but his tumor was strongly HPV+.

Have to remember, "typical" in medicine does NOT mean "always."

Gail

Bonnie,
My tumor was in my left tonsil. My was "well differentiated" though. As for your concerns about losing the salivary glands; I had IMRT radiation and they warned me that I could lose some glands on the left side. I finished rad treatments about three months ago and I was setting here eating salty chips when I start reading this thread. I do have some loss of saliva, but I can still get by.

IMRT can spare a lot of the good tissue so you may want your daughter to look into it.

Bonnie, I also had IMRT rad. The facility not only has to have the machine but they need to employee the people that know how to use it. I feel that I am way ahead of the curve in recovery because of the IMRT. Believe me it's still nothing I would want to go through but I believe it's the best way to go.

David

All, Went to Teri's Radiation Oncologist with her yesterday & was pleased to find that they do indeed use IMRT. They assured us that all precautions will be taken to spare the salivaries. The RO recommended an injection of flouro.... something at each treatment which is supposed to further protect tissues other than the cancer cells. Is anyone familiar with this? This center just opened about 6 months ago so they have the latest equipment & the RO comes highly recommended from the hospital. It's interesting that they only tell you the highlights of side effects in the beginning, I guess so they don't scare you away! Fortunately I've got this board! Bonnie

Never heard of a Flouro shot. The only thing close to that was my dentist told me to use a daily flouride treatment for my teeth which I did and still do each am. I assume the flouro shot is completely different so I want to hear about it as well. Any more on the Dissection?

Oh yes, thank goodness it's a 'Modified' ND!

OOPS, the shot is Amofostine (not even close to flouro...)