I have posted a couple times and everyone has responded! Thank you. Once again I am 30, very healthy non-smoker and continually now making myself healthier! I am 2 weeks out of my neck dissection. Had surgery on the 20th out of hospital on the 21st had the drain tube removed the 22nd and was at work on the 26th. I have a lot of pain when I move my neck and left shoulder...fells very tight. I have been riding my bike 5 miles a day and doing a lot of arm exercising and continually turning my head. Here is my problem....I have been to 2 radiation oncologists and neither 1 of them can give me a straight answer or course of treatment that they are comfortable with doing to me. Both basically are asking me what I want to do or telling me that I might need to go to a huge cancer center like moffitt. At this time I have no cancer in my body at all, however the node they removed has extra capsular spread so my ENT wants me to have the radiation. They are having a hard time figuring out which type to give me and how to attack it since I am 30. It is up in the air if I should just have my left neck done, have my left neck and right neck done or have my left, right and my tongue all done. Obviously the tongue is the worst but was also the primary sourse of the cancer. I had the tumor removed 3 months ago. I have contacted the moffitt center in tampa and most likely will be heading over there for a consult. I have a appt today with a oral surgeon to hopefully get a clean bill to accept radiation! I dont want to do to little on the other hand I do not want to have all the side effects down the road. I was saying do the radiation on the left side and we will monitor closely my tongue and right side if anything occurs down the road then we handle it then....Cancer is crazy, nobody can give me a reason that I have it so who is to say that it will ever come back now that I have had 2 surgeries. I hear all your horror stories about radiation and how just getting out of bed is virtually impossible....they keep telling me that at my age I should be able to take as much as they can give me but they are also saying on the other hand what is that much radiation going to do to me down the road. I dont know what I am exactly looking for here maybe someone here has had the same problem or knows somebody. Head and Neck cancer is crazy thats for sure something so small on my tongue has now turned into a monster. 1 tiny little node enlarged now I have a huge scar and limited movement! I have also talked to quite a few people that are totally against radiation saying do chemo and start building up your immune system to the highlest level possible and that is your best defense. Anybody just flat out skip the Rads after having surgery??? Please help

Jim,

I feel for you as I met many unanswered questions before I finally settled on Moffitt's recommendations. See what Moffitt says. Write down all your questions so you will have them in front of you before you go. Let me know who you are going to see at Moffitt.

I have seen a lot of recent people (both male and female) coming to this site who fit your profile, i.e., really young, non tobacco users, HPV-, with the primary some other place than the Oropharynx Region (BOT or Tonsils) and I have also observed that their cancer is just as aggressive as non HPV+ SCC seems to be as compared to HPV+ SCC meaning to me that you really need to consider radiation and chemo now as opposed to "saving" it. One thing I think you need to realize is that with a confirmed positive node that you are not a Stage I.

Hope you get the answers you are seeking and if I can be of any help at Moffitt just let me know.

I wish I had answers for you. I am just beginning down this road to. However, I have yet to meet with any oncologists. I have not had a PET scan or anything like that to determine if I still have cancer. Once I have that then I will make my decision on whether to do rads and chemo. I like you have no known risk factors. I am only 31 and have never smoked and do not drink but once a year. I am also working on building my immune system and eating healthier. This has been a big wake up call for me. I wish i could be of assistance. As I have many of the same questions you do.

Just to put this into some perspective....3 years ago I was considered a youngster for oral cancer and linking HPV to my cancer was tantamount to winning the Lottery.

Jim, my sister is currently facing a similar decision. We are at a large cancer center in TX. We were first told by the surgeon no radiation was needed because the final path report from surgery was so great. We were elated at this news. The next day we were told by the MO that radiation should be considered. We are meeting with the RO tomorrow afternoon, but basically at this point the recommendation seems to be do the radiation. She is 24 and we are also very concerned about long term side effects. She had the tongue stint made for radiation today, but we won't get the official word until tomorrow. The dental oncologist called tongue cancer a 'devious criminal' today, noting that finding and managing the microscopic disease is very difficult. Thus, the radiation recommendation for us.

Your best decision is to go to the cancer center and be seen by a team of cancer specialists. Chemo is not normally given alone unless is only for pallitive treatment. Chemo boosts radiation's effectiveness.

Only you along with yoru team of doctors can make this decision. Most radiation patients only go thru it once. Recently there have been several OC patients who have been undergoing a second round of radiation.

You are correct in reading its difficult going thru radiation. It can be done. If that is the path you choose, then just know yor age will help you get thru it much easier than others. It seems that the younger patients dont struggle as much. Dont forget the old saying we have around here "everybody is different". That phrase goes for treatments, recovery times, side effects and of course exactly where someone's OC was in their mouth or throat etc.

Best of luck.

Thanks guys! I have to say that I am feeling a little better today. 1st I sent an email to Dr Andy Trotti at Moffitt and he emailed me back in 30 mins followed by a phone call by his secretary scheduling me to see him next wed. I was very impressed on how fast somebody of his stature responded to my email personally! It seems that he is eager and my situation excites him not makes him scared and nervous which is making me feel a lot better. I had my appt with the oral surgeon and for the first time finally had a good report that my teeth are absolutely perfect. I will be going in for a deep cleaning and getting the flouride trays next week. I am at ease with just going by whatever this specialist has and wants me to do. Anybody with his credentials has to know better than anyone on this earth. Basically get it done, eat better, live healthier, be positve and strong is my new way of life which is going to be a better defense than any treatment. I am going to try and work thru this without taking the feeding tube. I can spare to lose some weight....lol! If it gets to the point that its that bad then I will have it put in. Thank you guys for all your answers and input....Usually I dont get on stuff like this and I have so far basically wanted to be in the dark. I told my ENT just do whatever you think is right, with my neck dissection I told him I dont want to hear anything about it just do it. I was reading about my glossectomy and was totally convinced that I wasnt going to be able to talk, swallow or eat ever again normally. Which it was tough at first now I am perfect...well I cant whistle or do some little things that mean nothing. I do however wish he didnt have to sacrafice the nerves and take out the muscle when he did the neck dissection but he got it all out that was the important thing. Now I have to deal with numbness and pretty bad pain and stiffness for who knows how long. Anybody have any suggestions on exercises or therapy for the neck dissection. Should I be rubbing the scar tissue or doing any kind of neck movement? I have been putting mederma on my scar 3 times a day and it looks great! Nobody can believe that it has only been 2 weeks! If I didnt have an alergic reaction to the staples it would look a lot better. As far as whoever said I have to realize that its not stage 1 anymore since I had an infected node....not to be rude but I could care less if its stage 1 or 5 I just want to beat this damn thing...All I now is that it was still very small and only 1 node was infected however it showed extra capsular spread so that is why I am having the radiation! To the person that had treatment at moffitt who was your doctor??? Thanks again to everyone I will keep you updated....

Jim,

You'll be in good hands at Moffitt. My neck is also stiff I move my head from one side to the other it feels better I just started doing it.

You're lucky you got in to see a doctor at Moffitt so soon, it took me a month. It's the place for you to be.

My doctor is Thomas McCaffrey I'm pleased.

Good Luck!!!!

Connie

I also am a patient at Moffitt and was 31 when I went thru radiation and chemo last year. Dr. Trotti was my radiation oncologist and I can definitely vouch for the fact that he is a brilliant doctor and his staff are tops. Treatment was hell, but I got thru it, and it is all pretty much a blur now. Even though they say us younger folks can withstand more, that may be true, but I couldn't of said that for sure at the time.
I could never have even thought about driving myself to treatments, and I live only a few miles away. As for the feeding tube, even though it was always in my plans, they did not think I'd need it until a week or so in. But because of my cancer it was already hard to eat so by the time it was scheduled to be put in I was desperate and was eager to get some nutrition and hydration. If I had to to it over again, I would put more effort into staying hydrated, taking the anti-constipation pills regularly, and better nutrition.

Jim,

My RO was/is Trotti and I know him well. He even invites me to co teach a N & N seminar at Moffitt once a year with him and we correspond often. He is one great Dr and I am very happy that you have him guiding your ship from now on. Karen, his nurse, is a real talker and loves to laugh. Moffitt is a great center as well. I love the place and anytime you want company, PM me and I'll go with you. Mention my name to Trotti and Karen and maybe he'll give you some extra radiation. lol Are you seeing anyone else at Moffitt?

Re the Peg, I also didn't get one and this site discusses this topic often. Trotti didn't push me but believe me there was a time when I could have used it and by that time we, the patients, are to sick and weak, etc to have the Peg installed. Discuss this with Trotti.

My sister was given 'induction chemotherapy' which is chemotherapy given to reduce the size of tumors before a surgery and to treat the body systemically. Its a somewhat new use of chemo. She had 6 weeks of it, then the big surgery. The responded remarkably well to the chemo. The pathology report was 'negative for tumor' in every category.

Hi Courtny:
I also have had Induction therapy. No, it is not new, but 2 very large studies have been published which reported a significant increase in the length of time before reoccurance, and other positive outcomes. You can check out the most recent study in the OC Foundation Recent News section. This study actually reiterates the finds of the 1st study called the TAX 324. (The TAX 324-325 study includes participation by Georgetown Lombardi Cancer Center).

I've also had an extremely favorable response to Induction Therapy. I had 3 cycles of Cisplatin, 5-Fu and Textera. I treatment every 3 weeks, but I am also in the process of doing Carboplatin and radiation therapy for 7 weeks.

Induction Therapy is a very aggressive treatment plus, if you're going to do radiation, it takes more time in treatment. But,in my humble opinion. it's a smart move.

If you have any more questions, please let me know.
Sandyst


Sandyst

Hi Jim,
I don't know about the Moffit (ocean seperating us from where you are). We ended up going for IMRT radiation, it seemed the most comprehensive we were given a choice but as Martin's SCC was of unknow primary it seemed the best course of action to radiate everywhere just in case.
As for exercises, I think the best is to ask your doctor and he will have the best exercises for you. I do scar massage for martin every day and muscle massage with E45 cream. I need to massage in little circles never ever massage up, always circles.
As we moved house 2 weeks post tx, and the house was a throw back from the 60s were a 96 year old lady had lived it needed a lot of work done (and still does). Martin has been working on the house a couple of hours a day, tiling, plastering... And his physio is very impressed with his range of movement, he has exercises that she gave him, but she said carry on what you are doing.
If you go for TX make sure that as soon as you feel up to it, you go for walks, it will help with the cardio vascular.
Whatever the next course of treatment is, good luck
Cecilia

Jim,

You should be seeing a physical therapist and have a complete evaluation as to which exercises you should be doing. And you SHOULD be doing proper exercises if you want to get back to normal.

I went to a therapist at the cancer center where I was treated where they worked with me and gave me exercises to do at home. I was faithful with both and went from not being able to lift my arm more than straight out to being back to full range of motion within 3 months.

I bought a pulley that I hung on the top my door and found this to be the best thing for getting full range of motion back. my neck is still numb, but that's a small price to pay for being cancer free.

Good luck at Moffit and maybe you can hook up with a therapist there.

Jerry

Jerry,
It has been exactly 3 weeks since my surgery. I started back to work 6/1/09 and put in 55 hrs last week. I have been riding my bike 5-10 miles a day which has GREATLY improved the movement of my left arm and neck! It still hurt and tightens up but what a difference a week makes when you just basically ignore the pain and try to function normally! What hurt the most was my throat swelling from talking and laughing so much at work! I had my Appt. at Moffitt yesterday and I have to say I FINALLY came to terms with myself on the treatment I am going to pursue! It took all you guys ripping me, 2 local RO's and a guy by the name of Dr. Trotti! So I am going to have the radiation full blown to the left side neck, tongue and right side! Also throwing around doing Cisplatin X 3 or as some recommends on here smaller doses! I havent yet totally decided on the chemo or not! I am gonna listen to the specialist and answer to the man above for my treatment! This is very humbling and exhausting but I slept so much better lastnight just accepting my future!

Sounds like you are doing well and although there is a rough road ahead, I'm sure that your determination will help you conquer it all.

Good luck with your treatment and keep us posted.

Jerry

When they talked about that treament to my husband we were scared. We didn't want to do any of the treatment. He had squamish cell cancer in his lymph node and had it removed routine surgery we thought for cycst. Anyway when we spoke with the medical oncologist he told us that if we didn't do anything about it the cancer would grow and shut off his throat. We decided to do some research and went forward with treatment.
We are 9 treatments away from being done with the radiation. We will have probably three chemos.
Good luck iwht your treatment let us know how you do.
Pat

Did you have any radiation? How old were you at dx?