I don’t have any feelings about the radiation mask. To many it’s a symbol of the horror of HNC treatment. It looks like a death mask, it is bolted down over your head for about 20 minutes a day for 6 weeks and it’s a visual reminder of the ghastly side effects of radiotherapy.
For me it was a symbol of hope because after my third little HNC cancer (“a nasty, vicious little tumour”) I was ready to do anything to stop the cancer coming back. I was the same with chemo when I had ovarian cancer. I could picture the Cisplatin and Taxol zapping stray cancer cells and providing some sort of insurance policy if surgery hadn’t quite done the trick.
Being able to visualise microscopic cells being mopped up certainly helped with both treatments but I don’t want to downplay the side effects of chemo and radiation. Surgery was my personal hate but for many, chemoradiation is a long tunnel of pain. In my support group I see person after person go through the process and only slowly emerge out the other side.
Radiation is used in three ways for HNC. Firstly it is used as adjuvant therapy after surgery for patients who had lymph node spread. Secondly it’s used with chemo for patients who didn’t have clear margins after surgery and thirdly it is used with chemo for patients with HPV related oropharyngeal or throat cancer whose tumours are inoperable. HPV cancers respond well to this but it’s a very hard ride. They are the most common head and neck cancers we are seeing in our group now.
My radiation treatment was the standard 60 grays over 6 weeks. Some people have a bit more and if they have chemo too it is a harsh assault on their body. The chemo “softens” the tumour for the radiotherapy and adds a nice little list of side effects to those caused by radiation. Hearing loss is a big one.
I remember going to Auckland Oncology to be fitted for my mask. My case was unusual because I didn’t have lymph node involvement but the MDM team suggested I have radiation anyway to “stop the cancer coming back on that side of the mouth”.
The message didn’t get through to the radiation oncologist’s notes so the registrar I saw was dubious about my having the treatment and informed me sternly about the side effects. It really sounded as if she wanted to warn me off. I had my son there and we took no notice of her. We’d both heard the dire warnings given by the anaesthetist before the surgery. Blah. Blah. Informed consent. Covering themselves. I was on a mission and thought I needed the treatment. The repeated surgeries had been so godawful.
Eventually it was cleared up when the oncologist was called in and remembered me from the MDM. On a sadder note though, I never gained a warm relationship with the oncology registrar whom I saw every week for 6 weeks after that. It was a bad start. Rejection burns deeply in the heart of a vulnerable cancer patient.
Next time, the radiation process …
Yes, we so need to have good, warm and caring relationships from those who provide the ‘painful and awful’ solutions to help us.
Sad for you about that one you encountered.
Denyse.
That was a strange one, Denyse. She did lighten up a bit towards the end but I never really relaxed with her. Was not a big thing as the staff who did the RT were brilliant.
I loved your attitude about the mask, I u fortunately being claustrophobic thought it an absolute nightmare…and one of the locks always got stuck, I kept thinking if there was ever an emergency, they’d never get me out of this thing…. I’m five years out and have a lot of radiation late side affects but doing great otherwise….it WAS a pretty dark road. But here I am waking up on the top side of the grass every day! 😊😊😊🥰💚💙💜
I know LOTS of people hated it! I don’t want to downplay it but I had other fears! Glad you are doing well.
I was ok about the mask as knew I had to go through it due to not getting clear margins and stage 4 aggressive cancer. It was made very clear that it was life saving exercise.
The mask itself spelled pain as I had only just had 2 very big surgeries on my face which were healed but still very sore and tender. Just had to get on with it though and endure it every day for 6 weeks. I used to allow myself a cappuccino after as a reward.
I need to remember that lots of people had pain and difficulty with mask. I’m going to write about the actual process today.