Radiation
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I had radiation treatments 5 days per week for 6 weeks. The 2-day pause during each week of treatment allows your body to repair some of the damage caused by radiation. I had the external-beam radiation therapy. Each session was about 15 minutes long. Radiation kills cancer cells but it also damages healthy tissue surrounding the site as well.
More information on radiation and types:
Video of Radiation expectations and explanation by Catherine Elliot
Before treatment started I was fitted with a mask that was custom molded to my face, neck, and shoulders. This mask was used during every treatment. A hole was cut out for my mouth so that I could wear a mouth guard (made of cork and tongue depressors taped together) during treatment. This was supposed to help protect the inside of my mouth but I’m not sure how much it helped.
When I arrived to the room where the radiation treatment took place I was asked to lie down on what looked like a CT machine. When I was fitted for my mask they set up a custom program that was tailored to my radiation needs. This program was pulled up in the machine every time. After laying down the technicians would put my mouth guard in and place my mask over my face. Then they would fasten the mask to the table so that I could not move. I could see lights that were being lined up to make sure I was in the proper place. My mask was marked with tape and X’s to aid in the machine alignment process. Once in place the technicians pushed buttons to make the “bed” scoot into the machine. They turned on music for me to listen to. I usually kept track of how many songs were played so I knew about how much longer I had to be in there. Songs are roughly 3 minutes long so I usually only had to listen to 4-5 songs before I was done.
The radiation treatment doesn’t hurt. The machine makes a whirring sound much like a CT scan. Your job is to lie as still as possible and remain calm. The mouth guard made me gag and being attached to the table made me anxious so my doctor prescribed me a very low dose of liquid Ativan to take before treatments to relax me. This really helped.
The first week or so the only change I noticed was my lack of energy. By week two I started noticing that my skin was more irritated and it progressively got worse over the next few weeks turning into what looked like the worst sunburn ever, on my neck and face.
I used a lot of Aquaphor ointment to protect my sensitive skin and to keep it moisturized. The skin constantly peeled off and left me raw so I had to change my pillowcase regularly and I wore a lot of tank tops and wide neck shirts because I didn’t want anything to touch my skin. It is important to keep yourself clean to prevent infection. At one point I was prescribed antibiotics to treat a skin infection. Aquaphor ointment leaves your skin very tacky feeling and everything sticks to it. I made an effort to clean my skin with unscented antibacterial soap a couple times per day, no matter how much it hurt, to keep it clean. When I cleaned the area, dead skin and gooey Aquaphor would come off so I used paper towels to clean the area so I could throw the mess away. I discovered that Kleenex Brand paper towels are softer than average paper towels (and super handy). They come in a pop up box and I toted those around everywhere.
I only lost a little bit of hair during treatment. Radiation “burned” it off. I barely noticed. It didn’t hurt and it happened gradually leaving behind a fuzzy patch that grew in after treatment ended.
Not only did my skin change during treatment, but after treatment as well. The best analogy I have heard is comparing normal skin and tissue to a raw piece of chicken that has been defrosted in the microwave. The chicken isn’t fully cooked but the outside turns a little white as the microwave heats it up and begins to cook it. The radiation seemed to “cook” my tissue like a defrosted piece of chicken. My facial muscles are tighter with less elasticity than before. The appearance of the skin around my mouth, especially in the corners of my mouth, is thicker and aged/wrinkled looking. The skin on my neck is still a little darker and has a different texture from the radiation burns. The muscles in my neck where the neck dissection was done also stiffened up and I could barely turn my head. This is called fibrosis. To this day the muscles are still very firm but it has improved a lot. Check out the physical therapy and massage therapy sections for more information on treatments I’ve tried to help alleviate some of the pain and discomfort from radiation after treatment was over.
I developed thrush inside my mouth during the first week or so of radiation. Oral thrush is a fungal infection of the mouth. It was very uncomfortable and it burned. It made eating even more difficult than it already was. My doctor prescribed me Nystatin liquid and Magic Mary’s Mouth Rinse to help. It cleared up in a few days but then I started to get ulcerations from the radiation in my mouth and throat.
I developed oral mucositis and third degree burns inside my mouth and throat during radiation treatment. My radiologist explained to me that my side effects were more severe due to my fair skin and the Erbitux treatment I was also receiving. I describe this treatment in the Chemotherapy section. Oral mucositis presents as ulcerations inside the mouth. These ulcerations make it difficult to eat, drink, swallow, speak, and sleep. My ulcerations were pretty severe.
Some people opt to delay radiation treatments to allow time to heal but I opted to get a feeding tube and power through it. I did not want to delay my treatments unless I absolutely had to. During this time, I could not even drink water because it felt like I was attempting to swallow broken shards of glass. I got all of my hydration and nutrition through my feeding tube. During this process my swallow was weakened by not using it and although it has improved, it remains weaker to this day. I go into more detail about this in the speech therapy section. To treat the mucositis, I was prescribed MuGard. This is an oral wound rinse designed to adhere to the inner surface of the mouth and forms a soothing, protective coating. Honestly, I was in so much pain I am not sure how much it helped but I used it anyway because my doctor told me to. I struggled to use oral care products during this time because they irritated and burned my mouth as I describe in the dental care section. I used Clōsys mouth rinse and a wet toothbrush or toothette to help clean my teeth several times per day. Oral hygiene is very important to oral cancer patients. It’s so important that I made a Dental Care section on this website.
I developed xerostomia (dry mouth) during radiation, which I describe in detail in the Dental section. Between dry mouth and mucositis, my saliva turned into a thick, snot like “goo” that was both difficult to spit out and difficult to swallow. If I didn’t get it out of my mouth it felt like I was drowning. During this time, I found toothettes helpful for scooping the “goo” out of my mouth. I was also able to rent a suction machine through a medical supply company to help suck the goo out of my mouth. My doctor called the company for me and my insurance paid for this rental. I describe it further in the Products section of this website.
After treatment was over the mucositis and blisters improved some, but still remained for about two months. I was determined to have my feeding tube removed. I describe this love/hate relationship between my feeding tube and I in the Speech Therapy section. Having a feeding tube in my stomach was painful and caused a plethora of problems but eating and drinking orally was also painful. I asked my doctor to prescribe me a Lidocaine ointment for my mouth. I was able to get the prescription filled at a compounding pharmacy. I dipped a Q-tip into the Lidocaine and scooped out a small glob to apply to the inside of my mouth. This numbed my mouth long enough to allow me to drink an Ensure. I opted for Ensure Plus since it had more calories. My doctor told me if I could drink enough of them to maintain my daily calories needed for two weeks he would remove my feeding tube. And I did it! This routine of using Lidocaine before drinking an Ensure went on for about a month until I was finally able to tolerate the Ensure on its own. I slowly incorporated a very limited diet because most foods and drinks still burned my mouth. This was also partially due to dry mouth and nerve damage from the radiation burns inside my mouth.