So Michael is getting close to 4 years post treatment (12/05/06 � last treatment date). His scans have been good except for various abnormalities they see re: cysts, neck problems - probably arthtis, etc. But not cancer. Biggest on-going issues are getting tired way earlier in the day than he ever used to be pre-cancer and head, neck and face swelling. He has gone for lymphedema treatments and was doing his massage and exercises regularly for a while, stopped doing them and has now started again, and some dental issues � he has had several deep cleanings, gotten a crown , teeth and gums supposedly look good now, but he still complains about swelling in his neck and face. Is there anything more we should do about it? I think he should have been continuing regularly with the exercises and massages, but it was hard to convince him of that. He decided it didn�t help at one point after one of the dental cleanings really seemed to help the swelling and he stopped the exercises and massage and it came back. Is it something he will have to live with? Thank you.

Hi Barbara,

I was told the swelling in my cheek was probably permanent. One of the **wonderful** effects of radiation.

Has Michael spoken to his radiologist about it?

- Margaret

Thanks for your response. Yes, he has talked with the oncologist. He did the referral for the lymphadema therapy that he went for many months ago. Michael sees him next in Sept and doesn't want to call him sooner - thinks that they might want to do some new test or scan. He has seen his peridontist who did the deep cleaning and who says his gums look good and he has also now seen a new dentist since he decided the one who has been seeing him and who made his crown recently hurt him too much. The new dentist told him his teeth didn't need anything new at this point. So many long term side effects from radiation. I guess neither of us fully realized that going in, but then the alternatives aren't that great either.

I would suggest contacting the lymph therapist to discuss this too. My mom's therapist, who I spent some time with, suggests to get a hold of it as soon as you can, even if it is years out from post rt and such. it wouldn't hurt to call and discuss this. my mom has been having other issues with her jaw and draining from bx...she can't have mld tx's right now and her lymphedema is worsening.
good luck.

We know the lymphadema therapist who treated him has left that agency and we don�t know where she is now, plus I think that my husband wouldn�t want to confess he stopped doing the exercises and massage for a while when he was supposed to keep them up forever. Since he has started with them again he isn�t complaining as much � only when I ask he says it still bothers him some so I am even hesitant to ask him. I think that the exercises and massage are again helping him a bit; he just doesn�t want to admit they do help and really doesn�t want to have to do them forever. I am never exactly sure how much, how often to ask him how he is feeling. Good luck with your mom. I am sorry she is having more issues. Thank you.

There are actually lymphedema therapists???
I asked about Gordon's lymphedema at the clinic we go to and no one seemed to have a clue or any knowledge of this kind of therapy. And this is at what is reputedly the best cancer clinic in Canada! A nurse asked us vaguely if Gordon had any trouble swallowing or breathing. When I said no, that was that.
Anne

Yes, there are lymphadema therapists. I believe they are generally either Occupational or Physical therapists. We live on the Mississippi Gulf Coast where are many limitations with the availability of specialized medical care. Fortunately I work in health care myself so I had a few contacts. His oncologist, who is in Mobile, only knew of one in the Mobile area and out of our insurance network, but we found one in Biloxi, MS. There are lymphadema specialists, who work only with the extremities and working with the face and neck are is even more specialized area of experience and training for them.. The girl who saw my husband was an Occupational Therapist at a local regional medical center. She was young and had limited experience with head and neck lymphadema, but she seemed pretty decent. Unfortunately she is now gone so we are on our own. My husband went for about 2.5 months initially three times per week. .I went with him several times to learn how to do the massage part for him although he can do most of it himself