Hey katie,

Regarding your taste - this was one of my biggest concerns when I found out about the treatment I would have to do; I may be small but I am a big eater

Luckiy, my taste is back nearly 100% now, and I am able to enjoy all of the foods I enjoyed before. It takes me longer to eat, but i pretty much don't have anything i cant eat, other than spicy food (and sometimes giant sandwiches)!

A peice of advice though - don't eat your favorite foods past like the first week of radiation, stick to blander foods. sushi is my favorite food, and i tried to eat it once during radiation and almost threw up. i just recently started to like it again within the last few months.

I heard of him, and is well known, author of several books, studies. He is Chief Surgeon at MSKCC for H&N in NYC since the 90's. Probably goes to NJ once a week. You can see a few videos of Dr. Shah and Dr. Lee, Radiation Oncologist, on their web page, and youtube, talking about H&N cancer treatment. Dr. Lee didn't want to consult witn me lol, but that's ok since I went to thier former Chief of Radiation Oncology elsewhere, but MSKCC is one of the best.

Am glad you had your dental work before beginning radiation, that is usually important as having radiation can interfere with healing subsequently. See all the docs you can--the more brains considering the problem the better, but just make sure they are talking to each other and coordinating your care, not competing to determine your care.

My readings and my docs all indicate that chemo can make the tumors more susceptible to radiation in some forms of oral cancer, and it may be recommended for that reason as well.

The truth is that treatment will likely be tough, but it affects everybody differently and after a difficult few months it does begin to get better for most of us. I second the advice about avoiding your favorite foods during treatment (and for a few weeks after tx ends, as the radiation continues to affect you for weeks after the last tx); you definitely do not want your favorite foods to be associated with the tough times of treatment or with side effects such as distorted taste, nausea, etc.

Do read about your cancer and its treatment, and ask all the questions that occur to you: what are the options, what are the advantages and disadvantages of each, what will happen if I choose A over B, what should I expect and for how long, what changes might be permanent and can the risks be reduced, etc, etc. Sometimes treatment preferences are based on individual doc's experiences and preferences and not necessarily on the latest research, so make your doctor defend his choice above and beyond "in my experience"... or "that is the standard treatment protocol".

Good luck, and do use this site--I have found it to be very helpful both for information and support.

Dr. Lee is who I saw at MSKCC so if you see her let me know although I am not sure she goes to NJ. Good luck!

Finally, a good report. The cancer has not spread to my left lymph nodes nor my lungs. I was certain it had at least gone over to the left lymph nodes. The report says " hypermetabolic focus at base of tongue to left of midline of uncertain significance". I spoke to the nurse and not the radiation oncologist. She said that he still recommends radiation and chemo. I will find out what he still wants to radiate, but my question is, why radiate the left side? Is it necessary at this point?

Have any of you had both sides of your tongue/neck radiated? Have you lost all sense of taste/salivary function? Of course I want to treat this thing aggressively to stay alive until I'm 90 or 100 but I do want to be able to enjoy eating again.

I meet with the medical oncologist on Thursday. I will go over past posts about questions to ask.

I am still waiting to get a 2nd opinion from Dr. Shah at MSK. Wish me luck in getting in this week!

I was only confirmed with 2 positive nodes on my left side and BOT and I had both sides as well as my BOT area radiated with IMRT over 6 years ago at Moffitt. If I remeber correctly the rad machine made appx 6 stops from right to left each session. I imagine I received less radiation to the right neck area because the machine stopped pointing to that side appx 2 weeks before my rad sessions ended.

It took all of 2 years post Tx for my recovery and I think I am at appx 90% pre Tx levels in both taste and saliva. It's impossible to put an accurate percentage number to post vs pre Tx levels since you quickly forget what 100% was like. All you do know is that you are not what you used to be like.

Congrats on the good, i.e. FANTASTIC report!

The hypermetabolic activity for BOT, midline, is uncertain, according to the PET, so only a biopsy can tell if it is cancer, high SUV is a strong indicator too. If there were two or more lymph nodes involved they would do chemo, and also depends on the thickness of the tumor, grade. BOT involvement can go to bilateral sides, and anything midline on the tongue also. Lymph nodes for orophargeal..BOT usually go to level II first, and oral..tongue cancer in level I, but there can be skip Metasteses.

I forgot you had root canal the same week as the PET, which can show hyperactivity in the mouth. Anyway, you are in good hands with Dr, Shah, and read of him, his work, the last few years. Good luck!

Paul, what number is considered a high SUV? Just wondering for the 6 month PET scan next week.

I was told that a SUV (Standardized Uptake Valuation) above a 3.0 is to be considered cancerous activity but remember the SUV calculation is not totally reliable as an indicator and many other factors can come into play when determining the cause of the reading itself. I also believe a SUV of 15 is the highest given.

Thanks David.