Hi everybody,

My name is Fred im a 54 year old male whos was diagnosed last July with stage 3 tonsil cancer. I went thru 2 treatments of chemo using the drug Cisplatin, and 40 treatments of radiation. Of course, I'm the type ofperson that is a drug or something has a possible side effect, I have about a 95% of ending up with it no matter how slight the chances of getting it are. I had a terrible time with the treatment and the pain killers. I was totally out of it almost from day 1 and spent most of the 2 months in the hospital as they doctors werent sure if my problems were from the treatment and meds or if the cancer had found its way to my brain. On top of all this since I was out of work, my insurance lapsed as I couldnt afford the COBRA payments.

Ive been out of treatment since the end of October and am just starrting to feel myself. The doctor had been talking about my having the neck surgery as a precaustion, as with no insurance I was unable to get the cat scan the doctor ordered for me. Well, Im finally back at work and again have insurance and finally got my cat scan...onlyto be told that the lymphnodes still dont look right and I am now scheduled to have a Modified Radical Neck Dissection.

To be totally honest with you, I am scared s--tless and really do not want to have the surgery. I totally understand that I really must have it in order to make sure that I am cancer free. But everything, I read about it and hear about it scares me.

Is there anyone out there that has had this surgery and can talk with me or tell me a little about it to help ease some of my fears? I can be reached at [email protected] and thank each and veryone of you. Hope to hear from someone soon.

Thanks
Fred

Fred:
Im sorry I dont have much advice about surgery. Can only tell you that if its necessary to have then you need to have it.
There are alot of people on here who have had the neck dissection operations. Best of luck to you.

Hi Fred,
You've been through so much, it's no wonder that this pending surgery is overwhelming you. I could go on and on about the injustice of our insurance system in this country, and my heart goes out to you that you had to be concerned about that at all while you were in treatment. My dad had the RND, and though it looked scary at first, I came here, posted my fears, got the knowledge I needed, and those who've had it that talked to me, really did let me know that it looks worse than it is. They were right, the drains came out within a few days, the scars melted away, and I can hardly tell he had it now. He does say that there is some numbness, but he has good mobility in his arm and continues to get better and that it was a life saving procedure that he's glad he had and that it was not the worst part of his treatment. I hope that they understand your metabolism now, and can manage any pain that you have better.
My best to you,
Deb

Hi Fred,

I had a Modified Radical Neck Disection for tonsil cancer. I had the surgery in August, 2006 (doesn't seem like that long ago).

My doctor was especially careful not to damage the nerve which allows the shoulder muscles to be controlled, and this was a major point that he impressed on me.

The surgery was not nearly as bad as the tonsillectomy. I have recovered quite nicely.

I started doing neck stretches and shoulder stretches (of various kinds) daily a couple of weeks after surgery - I still do them every day. These have kept my neck pretty flexible. I also put vitamin E cream on the scar daily (on the radiation burns too, for that matter), which has helped immensely in blending in the scar.

I am quite pleased with the results. I still have some numbness and some occassional tingling (although I get more tinglng when I do some of my neck stretches). My wife says the scar isn't so bad, and she doesn't notice the flesh is missing from that side of my neck (where 40 lymph nodes were removed for biopsy). Of course I notice these things, but they really aren't too bad.

Anyway, good luck and best wishes,

Chris

Fred:
I went through a Modified Radical Neck Dissection. It was a piece of cake compared to Rad. I had surgery on Thur and back at home Friday afternoon and worked some on Monday. Limitation was I could not lift anything heavier than 10 lbs and not drive for maybe 2 weeks. It was of course very sore for a while and I do have some numbness. With all you have been through I suspect this will be easier than you think. No need to be frighten of this one.

Hi, Fred, just want to reinforce the above- my husband had a radical neck dissection- looked awful for a few weeks afterward [with the staples, swelling, etc.] but his neck healed quickly and the scars were pretty much gone after a few months. He did have some residual shoulder and neck stiffness so that is something to address ahead of time with the surgeon. It is a surgery that usually can be recovered from fairly quickly. Amy in the Ozarks

I will echo many of the comments made above. See my blog (Journey To Cancer Free --Day Zero) in the OCF Cancer Blogs forum here to get a "real time" account of my MRND and recovery. Today I have some shoulder and neck tenderness and tightness, and perhaps some weakness of my shoulders when doing something over my head, but otherwise things are fine. The "turkey neck" has pretty much gone away, and I am the only one who notices the scar on my neck.

Yesterday I played 18 holes of golf in the morning, spent the rest of the day at work, then played 9 more holes with my wife, so I am not really very disabled. ;-) I can still get home in 2 on most par 5's.

The surgery is really the easiest part of treatment. While I really, really understand the fear, take heart!!!

My husband had it on a Tuesday and he hurt and looked like a mummy that night with the bandages, but the next day we left the hospital and I drove him to work for a little while. The drains were an annoyance for a few days, but that was it. The scar looks great and has from the beggining - he had it done in Feb. and you really can't even tell. This was honestly one of those with more bark than bite. Not a big deal at all and compared to radiation and chemo - my husband would have 5 more neck dissections and be happier than 5 more radiation treatments.

Good luck to you with all of this and please keep us posted so we can try to support you.

Hi Everybody,

Thanks so much for all the kind words and good things about this surgery. Prior to your responses, all I had read were pretty much horror stories. From lack of movement due to the nerve damage in the shoulder to total disfigurement of the jaw and neck areas. Its been a hell of a long road and my decision is made one way or the other to have the surgery so thatI can get on with my life.

I am getting into the positive mode about the surgery and know by the time I get there, I'll be ready to tackle the surgery and anyother thing thrown my way again. I have plans to continue playing golf and enjoying my life, so I guess this just be another bump in my road. life goes on, good or bad and its what we do with the bad, that makes the good that much better.

I thank G-d every day for the support system that he's given me. My son, 23, moved back home when i was first diagnosed so that he could be here to help with support and monetary support if it was necessary. My daughter and wife, and dog have been by my side thru this whole ordeal and sometimes I think that they have ha the worst of it. Seeing me in the hospital when I had no idea who I was or even who they were.

Again, thanks for your response. I will keep you all abreast of how things go. I will then be on the other side with the ability to offer help and prayers.

Fred

I had the surgery five years ago and while my neck is hard and woody feeling, and is quite stiff, it's amazing how quickly we can adjust to it. I notice it most when I'm tired. If I'm busy, I don't notice it at all. Make sure to have PT after, I didn't and I think that was a big mistake on my part.

Minnie