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Joined: Mar 2005
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cclark Offline OP
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Hi, this is my first post on this forum. My husband (age 55) was diagnosed with cancer at the base of the tongue and the uvula in January, 2005. He also had a swollen lymph node on his right neck. He had surgery on Feb 11th. The cancer on the tongue and uvula were both small and the surgery hasn't caused him any real problems there, but they went from a selective neck dissection to a modified radical neck dissection and took out 15 lymph nodes, along 2 paths on the neck. 4 had cancer. He had been seeing a physical therapist and has good neck movement, but his biggest problem is that he feels like he has a "tight noose" around his neck all the time (unless he takes Roxicet, a pain medicine). He is on Day 5 of 31 radiation treatments, and they tell him it will get worse during radiation. Yesterday, his nurse said over time, that will improve and/or go away (the noose feeling). She indicated he probably still had inflammation from the surgery and that would improve over the next 3-6 months. However, his doctor came in (while the nurse was out of the room) and made it sound like it could be permanent. He is very disturbed by this, almost to the point of wanting to quit radiation treatments so it won't get worse. Anyone else had this problem or have any words of encouragement about this or what to look forward to? I did find an article on the internet suggesting that time does improve the feeling of tightness quite a bit.


Wife of Jerry - Dx. Jan '05. SCC BOT T1N2BM0 + Uvula T0N0M0. Stg IV, Surg on BOT and Uvula + Mod Rad Neck Diss.(15 rmvd, 4 w/cancer), IMRT 33x. Cmpltd 5/9/05.
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PT should help improve this feeling. Is the PT massaging the scar on neck area besides trying to build up strength in the arm. Have him explain to the PT what he is feeling and they should be able to help. The frist part of my PT session kept my neck and shoulders wrapped in warm moist heat. The he massaged and stretched the neck and facial areas. Then I went on to exercises to build arm, followed by more massage. While I still have some tightness on the right side, my left side has no tightness at all.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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cclark Offline OP
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Eileen,

Thanks for the quick reply. My husband's PT isn't doing the warm moist heat thing you described but is doing the massage and working on arm exercises. How long does it take before he should start noticing an improvement? Months? Years? The PT is pretty noncommital about it. My husband says it feels pretty good for a short while after the PT works on it, but quickly gets back to the noose feeling. He has 2 sessions per week. He is doing the IMRT type radiation by the way. He seems to be in a little better spirits today about the neck problem, but the whole surgery/treatment process has been a real roller-coaster emotionally for him.

Thanks again for the info,
Connie


Wife of Jerry - Dx. Jan '05. SCC BOT T1N2BM0 + Uvula T0N0M0. Stg IV, Surg on BOT and Uvula + Mod Rad Neck Diss.(15 rmvd, 4 w/cancer), IMRT 33x. Cmpltd 5/9/05.
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Hi Connie,

Welcome to the forum, and as they say, the Club that no one wants to join! You are going to find a Ton of information here as well as a lot of support. My husband did not have surgery, so I don't feel qualified to answer your question about the exercises, but my husband did go through 35 radiation treatments.

For my husband, the radiation was pretty brutal, I'm not going to sugar coat it, but he made it through! He got very quiet and withdrawn as treatments progressed, he too was on an emotional roller coaster ride. So if your husband gets edgy, don't take it personally. They are in the fight to kill this cancer, and it takes a lot of energy to be in this fight.

Make sure to take time for yourself, be good to yourself. We as caregivers tend to put our needs on "hold" to help those we love. You are probably going to have more questions as time goes on. There are so many wonderful people on this forum that have the answers. I have learned so much from them myself. Best of luck, and keep us posted on how you and your husband are doing. We care.

Shelley


Caregiver to husband, Ron. Throat cancer, Stage II. No Chemo or Surgery. Completed 35 Radiation Treatments in November 2004.
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Connie, welcome to the site. Sorry you needed to find us. I had rad/chemo then modified radical neck dissection. Had 35 lymph nodes removed along with about 10 oz. of surrounding tissue. I had 62 therapy sessions (that's all my insurance covered) and it did a lot to restore my motion and strength. It at least put me in the mode that I was able to return to yard work and stuff which has allowed me to continue strengthening the arm/shoulder. I can now do 20 pushups at once without too much problem.

My PT guy worked my shoulder with massage. No heat. And did the exercise thing as well. I didn't have a noose around the neck feeling, but I did (and do) had a very tight back/shoulder muscle. It is like a knot and requires very hard massage to help it. The massage hurt at first but a soft massage didn't even touch it. So my PT guy really bore down. My wife can't massage it as hard as it needs to be done, she isn't strong enough, so I basically work it out around the yard by digging with the shovel and I bought a chain saw recently and will start cutting down a couple of trees that need to go to keep building the muscles.

Hopefully, this will help your husband. Let him know that as Shelley mentioned, the rad is the worst part of treatment and though it seems easy now, it is cumulative and gets more difficult as time goes on. He can get through it, though. Does he have a peg (feeding tube)? I recommend them as I had a peg and still lost 25% of my body weight (50 pounds) during treatment and proper hydration and nutrition is critical to a good recovery. God bless.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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I had my Tx in the reverse order, rad then surgery 4mos later, but like your husband I have that noose around the neck feeling on a pretty regular basis.The PT tells me it is fibrosis of the muscle tissue after rads. The surgical side is much more tight than the side that just took the rads. Physio definitely helps, I am having it now, but it has been 2 months and I'm not out of the woods yet. That choking feeling can be both frightening and painful. It also sounds like he may need some stronger meds. Now is not the time to hold back on pain medication. There is enough built-in discomfort through the treatment process that we should never feel it necessary to "tough it out" with pain of any kind.
Bother the docs as much as you need to, working with cancer patients is their chosen field...they need to hear how he is doing.
All the best to you and your husband.
Fran


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
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Hi Connie,
Now that I am thinking baout it, I had two different PTs. I don't think the one I had during radiation gave me the moist heat treatment. It may be that they cannot do that while you are having radiation. You would have to ask the radiologist. I know a hair dresser ran water that was too hot at the back of neck and a whole section of hair fell out.

Anyway, I was with the first PT for about 4 months including the 6 week period during rads. I had a badly winged scapula and did not make a whole lot of progress until I changed PTs. The second one did the heat treatments and the marvelous massages and got my shoulder realigned. I think I saw him 2x a week for about 5 months. When I had the second neck dissection 4 years later, I started PT immediately with my second guy, and was only there about 2 months. I have no stiffness on that side. Right side still somewhat tight and I need to go in for a tune up if I ever get the time. You can figure he will be in PT atleast 4 months.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Mar 2005
Posts: 109
cclark Offline OP
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Joined: Mar 2005
Posts: 109
Thanks to all of you for the great information. This has been really helpful and it sounds like the PT can make a big difference with his neck tightness. He really hasn't been taking that much pain medication, and it does seem to really help that noose feeling when he does. He hasn't mentioned it today and I think its because he took the pain meds.

Shelley, thanks for the encouragement. I've been acting as Jerry's patient advocate and going to all his main appointments, etc. with him. I've done a lot of research, try to make sure we understand treatment options, and that he's getting the best kind of treatment. We've become closer than ever through this experience.

Kirk, he did get the peg a week before the radiation started. Its only a week and a half into radiation. So far, all he is experiencing regarding radiation is a little queasiness. No one had mentioned that would be a problem so we were a little surprised by that. They told us about all the other stuff yet to come, but not that.

Fran, it looks like you and my husband had surgery at about the same time. Hope everything continues to improve for you.


Sincerely,
Connie


Wife of Jerry - Dx. Jan '05. SCC BOT T1N2BM0 + Uvula T0N0M0. Stg IV, Surg on BOT and Uvula + Mod Rad Neck Diss.(15 rmvd, 4 w/cancer), IMRT 33x. Cmpltd 5/9/05.
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Connie,
I threw up a few times before they put me on a daily med to control it. Ask his doctor for something as it is no fun to vomit with a burned throat and mouth.
Also, I remember being so depressed about how tight my neck was back when I was recovering. It's still tight but I just don't notice it as much. I've adjusted to it.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.

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