I was diagnosed in April with mucosal epedermoid carcinoma of the lip which was removed. It had spread to my lymph nodes and on July 11th, I had a right neck disection removing 45 lymph nodes and half of my thyroid. I am going to be starting radiation and chemotherapy in a few weeks.
I have a few questions........ My neck is as hard as a rock. Is that normal? Secondly, my shoulder is getting worse everyday, not better. I started surgery, but the pain directly under my collar bone is excruciating, causing me to double over in tears in the morning. The pain pills don't help. Is this normal?

I would appreciate any comments or feedback. Thank you!

Hi Deb,
Welcome. I'm relatively new to the site too,although my cancer started over a year ago.I had a right neck dissection in Nov. and my neck is still hard and numb - not quite as bad though as earlier. I didn't have much shoulder pain but my surgery didn't include the thyroid so I'm not much help there. I'm sure you'll get a response soon from someone with a similar experience. One thing I have learned this year though is don't suffer in pain. Let your Dr. know that the meds aren't working. Maybe they can give you something else. Hang in there!

Welcome Deb!

I too am new, just diagnosed on 7/15/2008. At this point I can't offer much more than a welcome message.

I'm hoping and sure the the breadth of experience on this forum will quickly get you the comments and feedback you're seeking.

-Stephen

Deb, Hi!! If your meds. are not helping you. You need to tell your Dr. Yes, your neck will feel stiff and hard. In time it will get better. You can not expect it to be healed in such a short time.

You can slowly start moving your head side to side and up and down to start stretching the muscle. But I would get your pain meds. up to wear they should be. Part of recovery is rest, and you can not get much rest when you are in pain. Hope some of this was helpful,

Welcome to OCF, there are many here that will be able to help you as you go into the rest of your treatments.

Take care ..Diane

Thanks to those of you who responded. I truly appreciate it. I'm soon going to be having radiation treatment to my neck and am frightened to death. The horror stories makes me almost not want to go through with this. I don't know if it's better to take the risk of the cancer coming back or spreading, or to have the radiation and all that happens afterwards. I am not sure about dry mouth. Is this totally unbearable? Are you all saying I won't be able to swallow at all because the mouth is so dry? I'm not sure I can live the rest of my life without producing saliva. Someone who has had this done, please respond. I read a few stories on here and people appear to be worse off after the radiation. I'm so scared.

So take this with a grain of sand, I'm only 23 so that has probably helped me fair better than most people. I'm 6 weeks in to my chemo and radiation and I will be done on July 31, this Thursday. Things for me didn't start becoming a problem until this past week (wk 6). I don't really have dry mouth right now except at night but I do have a ton of excess mucus and saliva that I can constantly spitting out and trying not to gag on day and night. I have mouth ulcers, and I've had those off and on throughout the whole ordeal. It used to be one or two at a time and now I think I can count 6, along with very tender gums, and they're perfectly spread out to where it makes eating painful! The skin on my neck was great until this past week as well. It started getting splotchy and on Thursday it started peeling and has continued to do so and is starting to hurt. So if I'm laying down I take my pain pills and forget about the pain! Also, you might want to ask your doctor about some anxiety medicine. It will help make things a little less stressful. I take it in the morning before my treatment, because there is nothing pleasant about being strapped down in your mask for 30 minutes! It is not totally unbearable. There are tons of people who go through it, it's not pleasant, but you can do it! My best piece of advice is to not lose any weight. It will help make recovery faster (supposively, I'm not there yet)and it will make the side effects easier overall. And before you know it, you'll be done, just keep marking those days off the calendar!

As far as the stiff neck, my only recommendation is to get a good physical therapist. My ENT sent me to one 4 weeks out from my surgery and I've noticed a huge difference. I had to stop after week 5 of my radiation because my neck was getting too bad but I plan on going back as soon as I can to finish up. I had a bilateral neck dissection and the stiffness in my neck was annoying and I constantly felt like I was being choked. Also, my shoulders were really weak and I could not lift them out to the sides and that is getting better as well. It just takes time and working at it.

Deb,

I have had radiation and feel very lucky at how well my body is healing itself. There is some saliva production, enough so that I don't carry around Biotene spray or water with me everywhere anymore! And this is at only 3 months out. Remember, healing from radiation is different for each individual.

I definitely still have some side effects like taste impacts and some tightness of the jaw and some soreness of the throat but I am very grateful for what I consider to be a quick recovery. While I appreciate and understand your reticence to undergo the radiation treatments I would implore you to proceed with the recommendations of your doctors. Radiation treatment sucks. However I not only survived, but am now thriving. I am getting better and stronger every day. Life is good.

When do you get fitted for the mask? Are you going to receive your treatment at a comprehensive cancer center? I assume it will be IMRT? As a tip, my Radiation Oncologist at Stanford suggested I have the metal fillings in my lower jaw replaced with resin prior to radiation treatments in order to stop refraction of the beams and resulting damage to the tongue and mouth. While not permanent, apparently this additional damage can greatly contribute to discomfort during treatment. I was lucky and did not have mouth/tongue sores and think this is at least partially attributable to the filling replacement. Also, I subsisted on Skandi shakes almost exclusively during the hard phase of treatment. This is a brand name that I blended with protein powder, strawberries and yogurt in order to increase the calorie count. I would then plug my nose and force myself to get the calories in my body. Again, the hardest part of treatment only last a number of weeks. Please know and believe that you can get through to the other side. I am an example and I have made several acquaintances that live near me who have also finished the treatment and are living full, happy, normal lives.

It is natural to be afraid but hang in there.

Deb --

The fear of the unknow can sometimes seem overwhelming, and for some reason as we review the posts here and elsewhere on the internet, we tend to grab on to the most negative things.


I am just over a year out from the completion of treatment, and just got off the golf course after playing 18 holes with my wife. We played 18 yesterday and the day before as well! I have greatly diminished saliva, so drink lots of water and use the Biotene products. Some days are better than others, but it is something you learn to live with and really is not as horrible as it may sound right now. More of an annoyance, as is the neck and shoulder stiffness from radiation and surgery.

None of the residual effects are going to kill me, but the cancer was trying to. I selected the most aggressive treatment course, understanding that there would be side effects involved. Side effects are OK, in my book, compared to the risk of the cancer coming back.

The rock hard neck and the shoulder pain are both common after neck dissection. Your neck and shoulders will go through lots of different sensations over the coming months and beyond. Just communicate with your doctors, ask questions, do stretching exercices, and keep a positive attitude. You can do this!

Thank you to all who have posted. I am feeling much better, and Jeff, your comments put all of this back into perspective. I certainly do not want cancer.
I do have another question if anyone thinks they can help me here. I have health insurance but do not have dental. My oncologist told me I need to have dental xrays taken and anything regarding my teeth need to be taken care of first. I too have metal fillings, so that would mean they need removed (I think). I am just wondering if my health insurance would pick up this cost since it is all part of my treatment? Anyone know?

Deb, thr hardness of the neck to me is normal. I still have it and it will be a year for this surgery Aug 3rd. I have pain in my shoulder that sure gets and keeps my attention. The Dr has just done a PetScan on my shoulder but it doesn't show cancer. He has no idea what it is, but there is a visble lump on my right shoulder right on the muscle into the neck. Welcome to the site where people understand each other and the advice is most of the time right on. Good luck and keep us informed. Jim