What treatment options were there for my cancer? Surgery, radiation, and chemotherapy are all used to treat cancer. Surgery removes areas of cancer directly by cutting them out, but what if the area is hard to get at or would be disfiguring, as in my case? Radiation therapy is targeted. It kills cancer cells and normal cells, but only those in the field of radiation, not the whole body. Chemotherapy uses a variety of medications to treat the whole body to kill or stop the growth of cancer cells and prevent their spread to other areas of the body. Some people need surgery, some need chemotherapy, and some need a combination of these therapies.
There are many ways therapy can be delivered, and many factors to be considered by the cancer team. Timing and whether or not radiation is given at the same time as other treatments depends on the type of cancer and other factors. Some patients need radiation before surgery to shrink the size of the cancer, some during surgery. Sometimes radiation is used to kill cancer cells that may remain after surgery. Or surgery may not be recommended at all.
When I was first given my treatment options, I was uncertain. I worked in health care administration for thirty-seven years and have a fair understanding of medical issues. One thing I learned was to know when to stop torturing myself with questions and let the medical professionals do their job. Being personally involved in your care means understanding and cooperating with the team, communicating with them freely, and letting them advise you.
Trust is a big part of this process, and should be developed as soon as possible. For this reason, I never spent a great deal of time looking for answers on line, but instead I asked my doctors directly and got answers that pertained only to me, not some patient having an entirely different experience. Therefore, what I am writing should be taken in that light; my experience is a single experience which will differ for everyone.
Not all head and neck cancers are treated with radiation the same way or using the same machines. Some machines use straight (linear) beams; others machines use beams that travel around the treatment area and send radiation at the cancer from many directions.
Whether to use radiation therapy and the type of radiation therapy depends on many factors; not just the type, size and location of the tumor, but factors such as how close it is to other areas of the body, general health, and age.
Although in some cases large regions at risk for containing cancer cells are treated in wider areas of the body, my doctors felt it was safe to treat me more selectively, concentrating on the areas of known cancer at the base of my tongue and in my neck. Although the majority of my neck would be treated, lower doses of radiation would be used to elective areas, higher doses to those with known disease. I would have surgery only if any cancer remained after treatment.
The challenge of radiation therapy is to kill all existing cancer cells while harming as little as possible of normal, healthy cells. This is very important for cancers in the head and neck, since there are many vital structures in the area that need to retain normal function if at all possible. Think about everything that happens in the mouth, throat, and neck.
The mouth contains not only teeth and tongue, but also gums, mucous membranes, salivary glands, bones of the lower face and jaw, muscles, blood supply, and nerves. The tongue determines how food tastes, and the salivary glands produce a fluid that mixes with food during the chewing process to prepare it to be swallowed as a ball, or bolus. The tongue is also involved in speech, chewing, and swallowing. None of these are things I want to do without.
The neck connects the head to the rest of the body, providing pathways for circulation, nerves, breathing, and digestion. Major arteries and veins supply circulation to the head and neck, including the brain. Major nerves, including the cranial nerves, control sensation, movement, and organ functions in the head and neck, such as hearing, smell, and taste. Lymph nodes and ducts are along the cervical spine, face, and jaw. The neck also contains muscles, bones, skin, and thyroid and parathyroid glands.
In the throat, or lower neck, the pharynx connects the mouth to both the lungs and the esophagus, separated by a structure called the epiglottis, which shuts during swallowing to prevent aspiration into the lungs. The larynx, or voice box, is in the lower neck.
My primary tumor, at the base of my tongue, is in close proximity to many of these structures, including the taste buds, the salivary glands, and the epiglottis. I really want to be able to taste my food, have saliva, and be able to swallow. I have been told there will be some impairment during treatment, but my targeted treatment should allow most of the function to remain or return.
Radiation is a beam of energy, and beams travel in straight lines. Knowing this brought up a lot of questions in my mind. How does the beam destroy cells in the back of my mouth without taking along everything it passes through, like my jaw, my teeth, the back of my throat, the roof of my mouth? What about the cancerous lymph nodes that are penetrating some of my neck muscles? They are more superficial, but to what level will the beam be directed? Will it go past and destroy the muscles in my neck or other structures? Some affected nodes are under my jaw. What happens to that bone? Will I lose teeth? Will there be any effects on my brain?
This is where I trust my radiation oncologist and today’s remarkable technology. When I had my pretreatment simulation, a careful slide-by-slide delineation process was used to define the treatment field and pinpoint the exact places on my body where radiation beams will be aimed.
Based on a CT scan that was taken the same day I had my mask made, my radiation oncologist worked with radiation dosimetrists and physicists to create my treatment plan. He marked critical structures of my anatomy, areas to be treated, and how much dosage was needed for each area of treatment. The criteria were calculated over a two-stage, thirty-five dose plan by radiation dosimetrists, and approved by radiation physicists who checked the calculations and took responsibility for quality assurance. When all three agreed on the plan, it was run on a phantom patient on the same machine I am treated on.
All of this took place in the week between making my mask and my first treatment. I found this not only impressive but reassuring. I was bound to do well with this level of planning going into my care.
My machine is a tomo therapy unit. It delivers many small beams of radiation at my tumor from different angles for the best distribution of dose.
The radiation will not kill cancer cells immediately, but they will continue to die over the course of treatment and for weeks or longer after my therapy is done. I receive radiation therapy every Monday through Friday for seven weeks. On Saturday and Sunday I rest and any normal cells in the path of delivery have a chance to recover.
I have already talked about the making of my mask. Here’s what it looks like:
Two receptionists greet me when I arrive. I don’t have to tell them my name. They know me and attach an ID bracelet to my wrist. We pass the time of day, then Chris and I take a seat in the waiting room until I’m called.
My radiation therapists feel like friends and I’m happy to see them. I trust them completely. I remove my upper clothing except for the tank top I wear beneath. I climb onto the table, and I’m covered with a warm blanket, very welcome because this room is always cold. “Are you ready?” I’m asked.
The techs place my mask over my face and fasten it to the table. It’s very tight. I can’t really open my eyes fully, but I can see enough through my partially-opened eyes should I want to. Most of the time I only peek and keep my eyes closed. I can feel the mask press against my nose, but can breathe normally. I can barely wiggle my lips, but I can be heard if I want to say anything through slightly parted lips. My shoulders are held tight against the table, but my arms are free to tuck under the blanket. I have an oxygen monitor attached to one finger.
The techs leave the room. I know they are in a control room with full view of me on a monitor. They have told me to move my legs violently if there is any problem and they will stop the test and attend to me. This is reassuring.
When I asked, one of my therapists showed me what is done in the control room. After I am immobilized on the table, a CT scan is taken to get that day’s exact position. This is overlaid and matched with the details of my planning CT, so that each area to be radiated gets the accurate dosage for that day. There are multiple areas of delivery, and multiple “slices” of CT images to be matched. After the therapist completes the matches, the second phase of the process, the delivery of radiation, is done.
Soon I feel the table move, drawing me into the “donut” or “bore.” There is a whirring sound, and then a loud clunk as the CT scan begins. I try not to move a muscle while the scan is taken. I want to clear my throat, swallow, or wrinkle my nose, but I do my best not to. I’ve been told this won’t affect the scan, but I always err on the side of caution and try to minimize any movement. After about three minutes, the table moves again, withdrawing me from the donut. The scan portion of the procedure is done. I remain on the table while the therapist matches my daily session to the exact position I am in today.
After a couple of minutes, a brief rattling sound tells me the radiation delivery portion is about to start, and I am drawn back into the donut. Soon the rattling starts again, becomes continuous, and circles around the donut. I have been told the sound is from opening and closing of gears in the bore that direct the beams to each precise programmed location. The treatment part of the procedure lasts about seven minutes.
The rattling makes me think of an American Indian shaman or medicine man. I included a medicine man in my book, The Mystery at Black Partridge Woods, so this makes me smile. The sound is one I end up anticipating and welcoming, a pleasant and familiar sound that tells me I am on my way to curing my cancer. I envision a scantily-dressed man with a rattle behind my head, ceremoniously conducting his healing ritual.
I understand that some people feel claustrophobic both due to the mask and being drawn into the machine. I found the confinement of the mask reassuring and somewhat comforting, like swaddling must feel to an infant. I am a control freak who doesn’t like anything taken out of my hands or being confined, so I thought laying in the machine might make me anxious. But I can see enough of the room that being in the bore is not alarming. Perhaps I don’t feel confined because I know how important stillness is to the success of my treatment, and know it is the confinement that helps me stay still.
To prepare myself in the event I became claustrophobic, I studied some meditation techniques, and I tried them at first but soon I didn’t use them. Instead, I like to do something routine that calms and slows my heart rate and allows me to measure time. I found that prayer was the ideal method for me. I have the reassurance of seeking help from heaven at the same time that the routine repetition of the Our Father, Hail Mary, and Glory Be, much like counting sheep, relaxes me. I time the cadence of the prayers in a rhythm that matches my heartbeat, and I know that somewhere between repetitions six and seven the treatment will be over. At all times I know how much longer I will be on the table.
I was told I wouldn’t feel anything during treatment. Now and then I think I do. Sometimes it is a slight pressure in the treatment area. Sometimes a feeling of warmth. It doesn’t happen until near the end of delivery, is never exactly repeated on subsequent days, and very mild. It’s probably just in my mind. A novelist has to depend on her imagination, doesn’t she?
What could possibly go wrong with that little man waving his rattle and dancing behind me?
Next week: Chemotherapy