After diagnosis, it’s hard to parse through the feelings of fog and fear and focus on what’s next. And honestly, sometimes you don’t even feel like thinking about what’s next, much less focusing on it. Treatment options will vary from case to case, but knowing the plan is comforting for some and, in my opinion, the more you know about how to care for yourself (or your loved one) during these times, the better. (PSA: I do NOT advise looking to Google for anything because I’ve done it and it’s miserable.)
Your radiation consultation appointment will likely be sort of a recap of many of the things you already know, but it’s very important. Your radiation oncologist will review your recent health history, pathology, and possibly some prognosis details. They will also talk through your treatment options with you and let you know some of what to expect. This is a great appointment to ask questions that have come to mind since initial diagnosis. Your radiation oncologist will explain the treatment process with you and let you know how many treatments you have ahead of you.
Depending on your particular cancer, you may have a few “homework assignments” to complete before you come back for treatment also. For me since I was head and neck, I had to have a dental exam to make sure my teeth were healthy enough to endure radiation, and I also had to have a mouth piece made that I would wear during treatment.
Otherwise this appointment is one of the easier ones. It’s a sit and listen, ask a few questions type situation. Nothing scary so far.
Simulation is a bit scary…or least that was my experience for various reasons. It all just became VERY real to me right then that I was, in fact, about to have cancer treatment. I work in radiation oncology, but somehow I had escaped seeing one of these crazy immobilization maks or if I had seen one I didn’t remember or didn’t know what it was. Regardless it happened and I survived it with somewhat minimal tears and it was on to the next.
From what I know, it is relatively common to have some sort of form made that your therapist will use to get you setup in the correct position each treatment, but not every disease site requires this.
For my simulation, they laid me back on a table similar to a treatment table. They showed me the mask materials beforehand and explained everything to me as much as they could. The mask in its original form is completely flat. It looked like a hard plastic, person-shaped frame with a net-looking flimsier plastic in the space between. The plastic would be heated up in order to make the material more malleable and it would then be placed across my face and buttoned down to the table until it cooled off and hardened. I could see fine, breathe fine, and could hear fine so I knew I was fine but that didn’t scare me any less. This process didn’t take long but hearing the snaps click into place and knowing you had to hold still underneath plastic was a little nervy…and I soon realized that I would have a similar experience each and every treatment.
But I don’t say any of that to scare you. Each person has a different experience. And not everyone gets a mask. I tell you because no one ever told me and going back to my previous statement, the more you know the better you might handle things.
The rest of the simulation appointment involved a quick CT scan with contrast and a few marked stickers to also help with treatment alignment. Consider the simulation as the dress rehearsal of it all…but don’t worry, you don’t have to perform in the days to come.
Treatment itself was relatively simple. I would change into my gown, head to the machine, get situated with my mouth piece, warm blanket (sometimes), and my mask. At that point my therapists would exit the vault and move to their station where they could see me, talk to me, hear me, and work the machines. From that point on, it was my job to lie there realllllly still while they imaged me to make sure I was in the exact spot I was supposed to be in. and then treatment begins. After several treatments, you will probably start to memorize the exact movements and sounds that the machine makes, so you can gauge how much longer you have left during treatment. And for me, this made treatment pass by more quickly.
Each facility is different, so your treatment may or may not follow this same process but some elements will for sure be the same. Most of the time each treatment appointment will last generally the same amount of time and can also be scheduled around the same time of day each day. Your doctor will go over these details with you on your first day or before.
During my treatment, I kept a weekly journal on how things were going so that 1) my friends and family stayed updated and 2) to hopefully provide a resource for those facing treatment themselves or those who know someone who is.
Undertreat Visits and Follow-ups
Undertreat visits are the quick visits you will have with your radiation oncologist while you are under treatment. At UAB, I was seen by my RadOnc once a week for the 6 weeks I was having treatment. It was mainly for her to check and make sure all was going well and my symptoms/side effects were being managed. Things like weight, mobility, and general well-being will be looked at. Undertreats are typically on the same day each week and happen immediately following your treatment for the day.
Follow-ups are the appointments that you will go to after treatment is complete. Sometimes these appointments are accompanied by scans (MRIs or CTs) and sometimes they stand alone to check on your progress in healing and recovering. Your radiation oncologist might ask you questions about symptoms, skin and muscle tightness, and general mobility, and they also might ask you to perform simple tasks or movements depending on what your primary disease site was and where you were treated.
Each person will obviously have a different experience with each of these phases of the journey. And you will find that some phases are easier than others whether that is physically, mentally, or emotionally. For more information, follow the links below:
Questions to ask your doctor (Before, during, and after treatment)