Treatments for medullary thyroid cancer (MTC) and how to apply them, require some study. There are many different approaches and viewpoints. How many of those options are presented to the patient depends on the doctor, his/her knowledge and experience with the disease, as well as the patient’s disease progression.
According to American Thyroid Cancer Association Guidelines, radiation treatment is not often recommended for MTC. In most instances, it is only recommended as a palliative measure. For example, for spinal lesions to alleviate pain.
Since I wasn’t given a choice in the matter, I tried to trust my doctor and go with the flow. As I said before, if I had known then what I know now, I would not have agreed to have radiation therapy. This is due to the many side effects I experienced, both during the treatment, as well as afterward, especially since I experienced recurrences in the radiation field within 6 months of completing treatment.
The only permanent side effect I was told about in my first appointment was dry mouth. The radiation field would be from just underneath my nose to just above my sternum. It would also have to be bilateral due to the spread to my lymph nodes. My doctor told me about the temporary side effects, such as a sore throat, as well as a bad sunburn to the radiation area. I was also informed about the possibility of losing my taste buds for a few weeks to months.
My experience was quite different from what was explained to me. The first 3 weeks went by in a breeze with no real side effects, as expected. The last 3 weeks, however, went from bad to worse, to living through hell.
It started with some minimal redness to my neck. When my doctor saw it at a check-up, I was told to start applying lotion. From there, things just started snowballing.
Within a few days, I made myself a meal, only to have no taste. I kept adding salt until I realized this was probably a side effect starting to emerge. Within the week I started to lose weight. I wasn’t able to get anything down. Nothing had any taste at all. I was struggling through every meal and most of the time only managed a couple of bites. Much of that also stemmed from my loss of saliva.
When I arrived for my treatments, the nurse assessed me and decided they needed to send me to the clinic to get checked out before my next appointment with my doctor. I ended up needing almost a week of IV fluids to stay hydrated.
My hair started to fall out at the back of my head. Since I had cared for patients with brain tumors before who had radiation done, this was a side effect I was anticipating. However, it is still a shock when you’re washing your hair and it all of a sudden comes out in clumps. That day I decided to get an undercut. Since I knew the area the radiation affected, I just cut that part of my hair to spare myself some of the psychological pain of the treatments. Within 2 weeks, the rest of the stubbled hair was falling out as well.
My burn continued to get worse, to the point of raw skin showing up on my neck. I was applying the lotions the doctors had given me and never went outside without some sort of scarf protection.
The dry mouth also didn’t wait very long before showing up. Lying flat for each radiation session was becoming more and more difficult. I felt like I was suffocating toward the end of each session because I couldn’t swallow. My saliva was getting thicker by the day.
Most of these side effects resolved fairly quickly after radiation was done. I am so grateful for that. I believe my faith and constant prayers, as well as my young age, were significant factors. I went to a peer support group about a month after radiation finished where I was the youngest patient by 30 years. I was also the patient who had recovered the best. Others who had finished over 6 months ago, were just starting to get the relief I did after just one month.
The biggest side effect, in my eyes, is the one I am still dealing with to this day. Thanks to the radiation, I developed an esophageal stricture in the upper third of my esophagus. I started choking on my food, having the feeling that something is constantly stuck in my throat. I brought it up to my oncologist and got a referral to a GI specialist. The stricture became so significant that during a gastroscope to check it out, the specialist had a hard time fitting a small pediatric scope through my esophagus.
Since then, I have had 16 gastroscopes; most of the time, every 6 to 8 weeks. In the last year, we have been able to stretch that to 12 to 16 weeks. I have many issues with swallowing even with these treatments. Compounded by the reduction of saliva, eating is often a chore. Most of what I eat is slathered in some sort of sauce or I have multiple cups of fluids while eating.
Looking back I have often said that if I knew back then what I know now, I wouldn’t have done radiation. I had a recurrence in the radiated area within 6 months. To me, looking back, the benefits definitely did not outweigh the lasting impact. I have to remind myself that, as I said before, I made the best decision that I could with the information that I had and the counseling I received from the medical team.