Wanting to know if scar tissue from rx can cause severe pain 2 years after treatment? How can you tell if it's scar tissue or recurrance? Or can only the oncologist tell.....???

I think scar tissue can cause pain especially if it's tightened up over time - our bodies are a mysterious place after rads. Hopin it's nothing! Fingers crossed for you and prayers said!!

Scar tissue can cause sever pain. I have had several bouts of sever pain on the right side of my tongue. Gte it biopsied and it is "scar tissue." My RO and ENT said that scar tissue can cause sever pain and that is one of the side effects of radiation. They were warning me because of all the problems I did have.

Yes scar tissue can hurt. Only by doing a biopsy will a doctor be able to distinguish the difference between scar tissue and a recurrence.

Best wishes for it only to be scar tissue pains.

what everyone else said. I have a lot of scarring in my face, neck and shoulder from surgery and rads, and am in fairly constant pain from it. Early on ( 6-8 months post surgery), I talked to the surgeons about the possibility of pain relief through removing some of the existing scar tissue and was told that it "might" help in the short term, but it would simply relocate the problem to a new area.
It is real, it is painful, and it is difficult to manage, especially since often the extensive surgery that we've undergone results in widespread scarring that's further comrpmised with the effects of radiation

It is interesting for me to read these posts as Emmett has a lot of scarring on his face and neck area too. Good friends who are theraputic massage therapists visited this weekend and were concerned about his scar condition and the tightness in his shoulder area (shoulders hurt every evening). They said the scar areas need to be lightly massaged daily to keep soft and to "break them up" or it would be painful in the future. They both worked on him several times a day and his PT noticed a big difference Monday. I will take their advise more seriously after reading your posts. Any less pain Emmett can have is worth my time and this is something real I can do to help him. I am always learning on this site!

Yes - actually I was going to post on this - I am not sure why after we go through such brutal surgeries and treatments we aren't told to go get physio, massage, acupuncture, lymphedema decongesting....?
This all helps post op. And post treatment. I started physio for my shoulder and neck 3 weeks into radiation. I went here they gave me exercises I went home and throughout my rads I did them except for maybe one week. These exercises have helped me get 90% function back on my shoulder and neck. I not go to physio weekly where they tweak what I am doing. My neck still stffens up if it's in the same position for an extended period of time but it loosens up quickly. Also once a week for the past 6 weeks I've been going to acupuncture - he is helping me with my taste which has returned fairly well though some things still taste off and my sweet just came back his evening... I think - I'll know for sure tomorrow. The acupuncture has also really relaxed my neck muscles, and helps with the feeling in it, and improved my range of motion. it's amazing the difference and today he got a dab of blood when he pulled the needle out - he says it's good because it means blood flow is returning to the area which helps you heal. Up to today there was none. I also go for a weekly lymphatic draining. Sounds gross but it's a gentle massage to the affected nodes, to help decrease the swelling and build new pathways where the nodes have been removed. Doing this during the first year post rads and surgery helps lessen your fibrosis. So basically he tools are available to help us but no one suggests it unless you know to ask.I know they wont solve all problems but they will help! Have a great day!

Well I've said sort of the same thing about getting PT, acupuncture, and lymphedema therapy. I think docs just want you cured, sure we all want that, and it is most important. So then you better ask someone else about quality of life issues.

I was told by my RO that the most important year to do the various exercises we were given was the first year. Ok, so I was not as good as Cheryl was during treatment getting to that. I have been faithful with it since that time. I have my neck stiffness issues. It was pointed out to me when I was getting lymphedema therapy pointers last week that I need to make sure when I do the exercises that I use the muscles correctly, that is not "help out" with my shoulder, even just a little bit, when bending my neck down towards it. Also relaxed and slower is better on them, so no just getting through it to say I did them!

Lymphedema. I don't have tons of it, but my neck is thin, and some people don't realize that it is swollen I guess. Anyway, it is difficult to find therapists that are fully qualified in head and neck. I was seeing a therapist who had the class work, but really not the experience. When I saw someone who did have the experience last week at MD Anderson, I learned (and unlearned) a lot. According to all parties, moving the lymphatic fluid helps a lot with circulation and that will reduce fibrosis. BUT you have to be careful you are moving it the right way, and not using too much pressure or you can create scar tissue. In one week of doing my routine according to their suggestions, I have noticed a difference.

I also have fibrotic areas that I was told would benefit from physical therapy myofascial release. It is actually a form of the classical myofascial release designed for radiation patients. Finding someone qualified there who has experience with head and neck patients at least in my state might not be so easy. I may wait until my regular check up in the fall to do that. The lymphedema therapists were also speech therapists, so that is out of their area.
So I read with interest about Emmett's physical therapists helping him.

As to acupuncture, I know I want to find someone with the right qualifications and experience. Cheryl, it is great that it helped you.

Yes, scar tissue hurts, and yes, it shows up on scans, and then it has to have clinical interpretation or even biopsy. The PA to my ENT oncologist told me that the lymphedema massage, the exercise, and even my weight lifting that I've started will provide benefits to me in the future. So I'm hopeful . . . as I have tried to be all along this road.

Best to all,
Anne

Hi Jeanna, yes Martin is now 3 years after surgey and he says there hasn't been a pain free day. His scar is tight and the pain goes down the neck and the shoulder. he hasn't had any massage as no one can touch him there. He has had a 6 weeks of Acupuncture, and although it didn't help much for the pain, it really did help greatly with the movement, he can move his neck almost like before. He also sometimes gets tickly feelings on his head, as if a bug was crawling in his hair, apparenlty that's due to the surgery too. We are waiting for the next lot of acupuncture. Migh ask about physical therapy myofascial release when we next see the consultant, that sounds good.
But ask your consultant, he might have suggestions too.
all the best