Hi Katie,
I had PNI but it was not in my nodes so I had just radiation, but it was done aggressively and both sides were radiated. I did go to Sloan in NYC. Rather than contacting Basking Ridge, I would contact the NYC office. Make sure to have all your info at the ready (slides, files from docs office, etc.). Feel free to PM me if you have any questions.

I did not have perineural invasion or extracapsular extension in the lymph nodes. I am T2N2BM0. The radiation oncologist recommended a pet scan ASAP to determine if there is lymph node involvement on the left side and to check my lungs. He said he would refer me to an MO to discuss chemo which he said 50% of people choose to do. I guess finding out the results of the pet scan will determine what I decide to do re: chemo.

I was really unprepared for the long term side effects of this treatment. I had no idea that I could permanently lose my taste buds, that I would have all of these problems eating because of that. I have chosen the willfully ignorant means of coping just to keep my sanity. The losing the teeth prospect seems likely only because my teeth already are soft and I have had root canals and the like on some of my molars.

He said that I will feel like I have the worst sore throat of my life and that food will taste like cardboard and/or metallic/iron for a while. How fun! I am running out to have all of the most delicious foods I can now! I will need pain meds for the sores in my mouth. Good grief! I really wasn't prepared to hear that.

Just going through the alternative to living which is death, you have to gain perspective on what you potentially will be left without; loss of teeth, loss of pleasure of eating, loss of ability to chew due to lack of saliva, recurrence. I'm sure there's more crappy things to look forward to.

He recommended I see the heads of head and neck surgery at Mount Sinai Hospital, Cornell NY Presbyterian, and Sloan Kettering. Is this standard? Why wouldn't I see a radiation oncologist to get another opinion? Not sure what I should do in this instance.

I will have more time on my hands now that I'll be in treatment and my kids will have to be in school full time with possible extended care. That will give me more time since I am a stay-at-home mom to fully research. This website has been EXTREMELY helpful and I again thank you all for pointing me in the right directions.

Can I just reiterate that although my prognosis seems positive, i.e. not dying, the thought of not being able to taste food or salivate is truly depressing. I am receiving psychiatric counseling, so no dark dark feelings are coming to light. But still, this really really sucks.

I am not a doctor and folks on here might give you better suggestions but in my opinion, you should get another opinion from a RO. You already had a neck dissection correct? What did your surgeon say? Did you have a PET scan prior to surgery? Also, many times the RO can avoid one or 2 salivary glands depending on where the cancer was located and many people will regain taste a bit after radiation is completed (read through posts throughout this site). I guess I am not sure why the RO would tell you to see another surgeon. Hang in there.

Katie,

I just want you to know that my husband lost his taste and salivary glands as well when he went through rad and chemo in 2007. He says not everything tastes like cardboard, and some things he can taste. He gets along just fine. He sticks to foods he likes and remembers what they used to taste like and that helps. After the lary surgery in 2010 he actually regained alot more saliva. Really don't know why. It really is manageable. You will learn to adjust. He did. Hope that helps.

Hi - most of your taste will likely come back and saliva possibly too. Not entirely but some hopefully. I would still do the chemo. Better safe than sorry.

Everyone responds to treatment differently Katie and I recommend you read the stories on this forum to get an idea as to what to expect.

This does not mean you will actually experience these symptoms but it does allow you to keep calm if they do occur.

My tip to you is to bulk up as much weight as possible STARTING NOW as stocking up and making sure you get enough nutrition is the #1 most important part of going through treatment.

The next is to keep your emotions in check and stay vigilant and strong as unlike surgery, treatment spans over many many weeks and often takes the better of you not only physically but mentally and spiritually as well.

Wishing you all the best with your journey ahead

Thanks everyone. That helps to hear that he appears to have told me the worst possible side effects. I know that each case is different.

The other side effect I absolutely was not prepared for was the potential damage to my vocal chords. I am a singer, and although I don't make a living from it, it is a joy in my life. Anyone here have an altered voice permanently? Getting my mind around that is scary.

I am about 20 pounds overweight. I have always been heavy, and have lost 25 pounds since my diagnosis, from the stress and the diet. I know I'm not supposed to lose any more during treatment, but I think it is inevitable. So now I am going to have those luxurious dinners I don't: steak, lobster, shrimp, chocolate mouse, you get the idea. Why the f not, right? They may never taste the same to me again. Gulp.

I'm going to attend a local support group for head and neck cancers. I'm sure that will be beneficial as well.

Thanks for reading.

Katie

Katie,

Yep, eat all the good stuff. I was more than 40 pounds to the good when I was diagnosed, and just from the pain of the tumour causing difficulty eating I lost 30 pounds. My surgeon was very worried that I not lose any more weight and prescribed me paid meds to help eat.

Since surgery I have been eating solid food (from 3 days after hospital release), but it takes a while and I drink water, so I get full faster. I have lost an additional 2-3 lbs since right before my surgery even though I have dessert every night which I never did before. I'm still getting lectured.

Eat all now! To hell with calories.

Katie I had similar surgery to you chemo and rads bilaterally to my neck - my voice has not changed - it took a while to get back to normal but I can still sing... (mucous pain etc) There is someone else on the forum who also has had a similar cancer is cancer free and is a professional vocalist, AnneO is a vocal teacher and she is also doing well. Hugs! And eat up. I was 40 lbs over weight - despite not using th peg I only lost 22 lbs - then post treatment I gave up bread and sugar - lost another 20 - I'm at my perfect weight right now. (the sugar and bread Is a therapeudic omission.)

Katie, I'm not a singer but I am a former musician. About a year or two out from surgery and rads, over about a month I suddenly GAINED a perfect fourth at the bottom of my vocal range. Just like that I went from being a normal baritone to a bass. Not that you'd want to hear me sing of course.

My point though is that we're all so different that it's virtually impossible to predict what will happen.

Also, although I didn't have tongue surgery, I found that my taste gradually did come back, as did much of my saliva. Taste is still and likely never will be 100% because of surgical nerve damage, but it's something I can live with.

So please hang in there. Getting more opinions, especially from people at the great hospitals you mention, can only hope.

Keep us posted please.