My husband was diagonsed in October with Adenosquamous carcinoma of the vocal fold, a very rare agressive cancer, less than 50 sited cases. He had the right vocal fold removed in Nov which left his voice just a hoarse whisper, no real volume. In Jan he had a neck dissection on 1 side which showed cancer in 1 out of 23 nodes so now we are starting down the road of radiation. I didn't have a clue what what involved with getting ready for radiation with just the dentist. Had 2 wisdom teeth removed. Hearing all the side effects of radiation I don't see how I can watch him go through it. Just the pain from his shoulder after the dissection, the sore incision and now the teeth is more than enough for me. How bad will it get, will he feel like traveling 3 hours home for the week-end? He already lost 20 pounds (due to stress and the healthy diet I have him on)and I don't want him to lose more during radiation.

welcome to OCF. Im so glad you have found us so we can help you. Dont worry we will be with you both to help you with info and support. There is so much to do to prepared for radiation. I hope lots of people have come forward and offered their help. Write down everyones name and number so you can call them when you really need a hand. Just tell everyone who asks that when the time comes you will let them know. There are all kinds of things friends and relatives can do to help.

Im glad to hear your husband has gotten his teeth taken care of. He should also have flouride trays made. This is very important to take good care of his teeth as radiation will do a number on his teeth.

He should get a hearing test and a complete blood count including thyroid. It might be a good idea to see a nutritionist. Since your husband has already lost weight, a feeding tube could be something he will need. This has been discussed and debated many times over the years. For some people it is a wonderful tool to help keep them hydrated and with enough calories. Others sail right thru without needing it. I had one for my chemo/rads and still lost 65 pounds. Have your husband eat all he can now. Make sure he has all of his favorites so he wont have cravings and regrets later. Radiation will change his ability to taste and swallow so for a while it might get difficult for him. Every single day he should get 2500+ calories and 48+ oz of water. Make sure as the caregiver to keep careful track of this as it is vital to how easily he gets thru this. Even one day he cant skimp figuring to make it up the next, it doesnt work like that. He MUST get proper nutrition and hydration every single day. I cant stress this enough. I went thru heck and would stay in bed sleeping instead of taking enough in and I ended up hospitalized for malnutrition and dehydration. Of course we are all different, I wasnt lucky enough to have a caregiver so I struggled.

Make sure your husband always has someone with him at appointments. Write down all the questions and the answers. Another set of ears is important as there is so much to take in its easy to overlook something important. Some members have tape recorder their doctor sessions so they can play it back later.

I hope you have sought out a second opinion especially since the cancer your husband has is so rare. A cancer center is usually the best choice for treatments as they are most experienced and a whole team would be discussing your husbands case and all working together to heal him.

Please feel free to ask any questions. There is also tons of important info on the main OCF pages.

Best wishes with everything!

Hi there! Sorry you're going through this, a lot of us here have done the radiation thing.. NOT FUN, but doable, it's a day by day chore and generally doesn't get too bad until week three. Will he want to come home on Weekends...? Probably up until the last few weeks. I drove myself to and from rads, everyday up until the end... This was up to a 45 minute drive each way, and at least a 2 hour time investment. Then I would crash. Im thinking he would probably just want to be home to be normal. They will probably peg him for nutrition, but right now try upping his protein intake. A dietitian can tell you how much he needs for healing. I managed to maintain the right amount guzzling ensure, and adding vegetarian protein powder to it. This will help with the surgical healing too. Neck dissections aren't too bad... It does mess with your shoulder and neck of course but physio should help at some point... Even passive physio. The teeth will heal. I know it's hard to watch just take your cues from him, and dig your heals in when it comes to eating. hugs and welcome.

Hi Terri. You've already heard from 2 very knowledgeable people and there are a lot more on here who really have good advice. I just want to welcome you to the forum and trll you that these people really helped get me through some very rough times. I used the feeding tube and still went from 203 lbs to 150. That was before I found all the great advice here, so you already have a head start on this thing.

My biggest question?? What are the chances of my husband ending up on a feeding tube? Does this happen to most? Not sure what a peg is? I am determined to keep his weight up even though he lost 20 pounds (from stress and healthy eating) that he always wanted to. After removal of right vocal cord he has had no problem eating, thankfully. Wasn't really fair when he packed for our cruise in Dec that his problem was his clothes being too big when I had lost 17 pounds and still wondered if mine would fit after 10 days of cruising, I love to eat!! He has felt great till the neck dissection so other than the loss of some of his voice he just doesn't seem sick. Thankfully we have found the Hope Lodge in Minneapolis where we can stay rather than commute 3 hours daily for radiation. It is a wonderful place but reality still hasn't hit us yet, we don't feel like we belong there. It seems more like a get-away from work, spending time together, eating out and doing a few dr. oppointments. Maybe it will always seem so surreal. Without doing chemo along with radiation will radiation alone be a little more tolerable?

"PEG" stands for "Percutaneous Endoscopic Gastronomy (tube feeding)". Lots of people have had feeding tubes for varying lengths of time and with different opinions on them. My son did not have a feeding tube and had a really rough time with losing weight and problems swallowing with his throat being so raw and painful from the radiation. Everyone is different, though - and some have a much easier time of it. As a caregiver, you really have to be persistent in getting your husband to take in the proper amount of nutrition and water each day. It helps to keep records of everything that goes in his body and comes out, too. My son did not have Chemo, just radiation. It just depends on what the doctors feel is appropriate for the particular patient's needs. It sounds like you have a nice place to stay and can avoid the long trip each day. I hope everything goes smoothly. Stay in touch with us here and let us know how it goes.

Hi, Terri.

I'm sorry for what you and your husband have already gone through and what you are currently facing. I did not have rads/chemo, but I did have a neck dissection. I am a physical therapist and I recently made a post to someone who was having neck/shoulder issues. I will attache the post for you to read. Also, when the time is appropriate (per his MD), speech therapy may help him voice volume, etc. My surgeon always stresses that the first thing is to save his life, second thing is to address function, and third is to address cosmetics, if that is an issue.

Best of luck in this whole process. I hope he has the best possible outcome. Please keep coming back here for support whenever you need anything at all!

With care,
Kerri

"I am an orthopedic physical therapist and also a patient/survivor that had/has neck issues. After a neck dissection, your soft tissue anatomy is never quite the same. When you have soft tissue changes (muscle, tendon, fascia, ligaments, etc.), the joints stiffen up as well. You can also have referred pain from your cervical spinal nerves as well as your spinal accessory nerve, which must be physically moved out of the way during your neck dissection. Nerves are highly sensitive and they tend to hold a grudge when mess with them, no matter how gently.

Personally, I went to PT when I was about 2 months out of surgery. It's important to allow time for healing of the tissues before you start PT. In that time, one can certainly develop secondary issues, though. The swelling in the area can also contribute to the radicular pain (radiating pain in neck and shoulder). Since the pain is originating from your neck, doing the arm rotations will not do much. Be easy on yourself because you are so early into your recover. It's good to keep moving and to gently stretch, but nothing even close to vigorous. You could cause complications with your neck dissection that will only prolong your recovery. I would suggest GENTLE neck range of motion exercises."

" I did a youtube search and found these videos which are wonderful. In fact, I am going to make a handout with these links to give to my neck patients. He basically explains everything very well and uses all the techniques/educational components that I use every day.

I'm not sure of his credentials, but it sounds like he is a physical therapist. He is explaining The McKenzie Method, which is highly effective in treating spinal problems. It's especially helpful in that it teaches the patient how to treat themselves, which is exactly what we need to do to keep pain at bay for a lifetime. Even though he is talking about herniated disks/pinched nerves, etc., don't get hung up on the diagnoses. The techniques should work for you if you do them as prescribed. If they don't, please let me know ASAP. This works on the vast majority of patients, but remember that you had major surgery to the soft tissues around your spine and spinal nerves. You have to be VERY GENTLE! Your body needs to form scar tissue and let the tissues heal/sutures to hold, etc. Early mobilization/stretching is good, with caution. Discomfort (mild) with the stretching/range of motion is expected, but pain is a signal to stop. I would advise you to keep icing as well. Ten to fifteen minutes every couple of hours as needed. You have to let the blood flow back into the area for nutrition/oxygenation, so if you keep ice on it constantly, you will deprive the tissues of these things. Also, if the ice pack becomes room temp or warm, you are actually now heating the swollen area by keeping it on too long, which you don't want to do in the case of swelling.

Enough of my blabbing. Here are the youtube links. If they don't work for you for any reason, either technical or by your learning style, let me know and I will make adjustments. He has about 36 videos in his series. I tried to put them in an order that made sense. Let me know how it goes. Best of luck and I'd be more than happy to answer any questions!"


Step 1

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Best of luck and please don't hesitate to ask any questions.
~Kerri