Updated: Mar 12, 2019
Radiotherapy is a main stay treatment used to reduce the reoccurrence of cancer; saving lives and prolonging lives across the world. This is good. But there is a BUT.
An 18 minute video of a single scar and adhesion treatment for Nino.
There are some side effects that can arise in some people, often months or even years after, which are really tough on people.
My first experience of seeing bad radiotherapy damage, known as radiation fibrosis, was in an Occupational Therapy Rehab Unit in the late 1990's. An older lady experienced "wrist drop"; one morning found she could not move her wrist , her muscles failed to work. Because the wrist was bent down, she also lost power in her fingers.
She was so frightened, she went to the hospital emergency department. They did a medical check to find that the nerve at the neck had become irrepairably damaged; it was the nerve that powered the muscles to extend the wrist .
They explained to her that this was nerve damage from the radiotherapy that had saved her from breast cancer, some 30 years before. She was told, there was not going to be any recovery or any surgery that would help, so she needed to learn to live with this. She was sent off to the Occupational Therapy Dpt with a blue referral slip for a splint.
As an Occupational Therapist, I was able to make her a splint- to hold the wrist up. The splint was to be worn to protect the wrist and make the fingers strong enough to use her hand again.
I remember feeling outraged- that someone had survived breast cancer for 30 years and then for this to happen. Then my brain would not stop asking:
Why? Why 30 years before serious and permanent nerve damage? Was there no warning?
What is radiation fibrosis?
Surely, there must be a way to rehabilitate the tissues that received radiotherapy!
In 2003 my partner, Nino, had life saving surgery, chemo and radiotherapy for cancer in a gland under his jaw. The radiation doctor did not offer any advice about post radiation care. The surgeon did not mention any rehab or care for the surgical scar at the neck or for the loss of one lymph node. My breast cancer patients over the years had prepared me for this lack of rehabilitation advice. Nino thought that he would just get better with time.
I had done much more study about scar tissue and radiation fibrosis by this time and I worked up a theory that involved the muscles of the neck and nerve compression. As the nerves from the (cervical) spine travel through the neck muscles and then down to the muscles of the arm and hand - it is a real risk that tightness within these muscles could compress and cause damage to the nerves. Radiotherapy is known to reduce circulation capacity and create fibrosis within connective tissues; skin, muscle and the fascia between muscles and within muscles. These soft tissues are likely to become tighter and lose their stretch.
Nino has proved the beginning part of my theory: his neck skin and muscles on the side of the surgery and radiotherapy are tighter at all times and do not stretch much compared to the other side. He also experienced occasssional episodes of headaches and painful shoulder. At each episode, I would give him 1-3 treatments: scar and adhesion treatment, and his symptoms would resolve reasonably quickly. Eventhough it is a little painful, Nino does love hands on treatment, as he knows that he responds well after.
Fast foward to 2019; 16 years since his surgery, he is in remission, there are no more cancer checks. We both really forgot about his cancer, radiation and radiation fibrosis.
Nino started complaining of pins and needles in his left hand, which would come on when driving, reading a heavy book and sleeping on "that side". I certainly was not thinking side effects of the cancer treatment. I thought carpal tunnel, so offerred my best OT carpal tunnel advice. However this advice made no positive impact at all.
Then, in preparing for a presentation to other oncology health professionals, I reviewed radiotherapy fibrosis again. The penny did not drop, until NIno helped me with the video I wanted to prepare for the presentation.
His neck muscles and fascia tightness had increased again. Watch the video now if you are interested in seeing what radiation fibrosis may look like at the neck. You will also see how Nino's skin and the underlying tissues soften.
The research on nerve compression (of cervical nerves) indicates risk factors such as 1) young
2) radiotherapy at the lower neck and 3) slim. Nino does meet the radiotherapy to neck risk factor only and wishes he was young and slim.
In the research papers I reviewed, authors offered a brief sentence recommending physical rehab or recommended the need for more research. Research has not yet investigated what therapy components are required for a rehabilitation care program- especially if it is after 10 years.
While we await the research to guide radiation fibrosis care my best suggestion is to have your partner learn to treat scar and radiation fibrosis. Find training in "self care" from an oncology +scar trained therapist and book in regular yearly reviews. Then book in regular coffee + chocolate dates, in a nice place at home, finishing up with a 5-10 min scar and adhesion massage for your loved one.
Right now, I can only think that I need to be more diligent; check and treat neck tightness more often. More coffee and chocolate dates on the deck, with a short neck scar/ adhesion massage before we go back to our day's work.
I will keep you posted.