I'm asking this question anywhere there's a chance of getting a little advice, so please forgive me if you see it around the various oral cancer groups and pages. Is there *anything* I can do to prevent/slow/mitigate the formation of radiation fibrosis in my neck???

Over the last few weeks, my neck has been getting hard, the tissue is getting thicker; in the mornings it feels like concrete. I *do* have lymphedema (which is being treated), but this is *different* to the lymphedema. It's so horrible. Any advice very gratefully received.

Estelle, I think this is the normal response to radiation.
Kris's neck too set like concrete. Over the last 3 years it has softened quite a bit. Don't think the tissues will ever return to their pre radiation status though. Part of the new normal.
Tammy

Thanks for your reply Tammy I'm moisturising like mad, by the way! And after trying many different moisturisers, including fancy prescription ones, I'm finding plain old Johnson's Baby Lotion about the best.

I'm glad to hear that "concrete" feeling has softened a bit over the years. Thank you x x

Estelle,depending on where the fibrosis is, there are many things that can be done in terms of comfort and slowing the progression. There are more studies being done in Europe than in the US.

The first lines of defense include massage, regular stretching and exercise, and a treatment protocol called PENTOCLO, Pentoxifylline/alpha Tocopherol/ Clodronate. We can not get the Clodronate in the US but it is available in Canada and Europe. The 5-6 year mark after radiation is the most critical in terms of aggressively treating it.

Of course, the first step is reducing stress and anxiety as the body's response to that can accelerate the fibrosis.

Lymphdemia can cause fibrosis. It's tough to say who will have lymphdemia, and who will not, and somone who had one lymph node may have it while someone with 15 nodes removed may not, and other things are involved such as the heart, weight, skin care, genetics, and it doesn't go away on itscown, and can be a late occurring effect from surgery, radiation, even after 10 years. I know it's called, Leather Neck, Turkey neck sometimes. but concrete is new to me

The treatment for lympdemia is usually Manual Lymph Drainage, prefably by a Cerified Lymphatic Therapist, Good skin Care and avoiding infections, exercise, and Compression. Some have used acupuncture, and I heard of liposuction bring used for neck lymphdemia in some select areas, Canada is one.

Good luck.

I can't answer your question but understand how you feel, Estelle. I'm due for a check-up with my ENT next week and will ask about it, even though it's caused by the radiation of course, not the surgery.

I think I'm getting it too. The swelling was getting less but now the swollen area is harder, not so easy to indent with my fingers. I'm 7 plus weeks out. Some mornings my cheek and neck are quite puffed up but improve as the day proceeds ... I guess that part is a fluid build up.

All I can think of doing at the moment is to do the neck and shoulder exercises given me by the hospital. I'd stopped because I'm so active but figured I'd better start again.

The advice above looks good and I hope you find some more answers.

I have rearranged another course of MLD with my lovely lymphedema nurses. Thank heavens for those ladies, they managed to almost get rid of it last time, in just 6 sessions!

They said come back if I needed help again. They are based at a local hospice, so they are very compassionate people.

Movement as well, I try to do a lot of stretching.

Yikes - just looked at the clock - gotta leave for work bye!!!!