When I went into surgery in February 2002, I did not know that I had Anaplastic Thyroid Cancer (ATC). My fine needle biopsy showed that I had Insular cancer. This is just as rare as ATC and was described as medium to fast growing. Thus, between papillary and anaplastic. (I understand that I would have had the same treatment for ATC if I had only 100% insular).
I went into surgery on Thursday morning and spent one night in the hospital. The pain coming out of surgery was pretty intense. By Saturday night, I was out to dinner for my husband’s birthday celebration. I was able to eat, but there was some discomfort. It was like having a sore throat, but the pain was on the outside. Very hard to describe if you haven’t been there.
On the following Monday, I had my return visit to the surgeon. I know something was wrong when he was waiting for me to show up to the appointment. He told me that he had some good news and bad news. The good news … negative margins, meaning that all of the tissue he cut through was healthy, thus they got all of the cancer out. The bad news … Anaplastic Thyroid Carcinoma.
He immediately gave me names of oncologists at his center and a center in NYC. I asked him: if his wife had this prognosis, which hospital would he bring her to, and he said the NYC center. He told me that I needed to wait six weeks before radiation to allow recovery from surgery. In April I made the trip to NYC and as they say, the rest is history!
I was prescribed seven doses of chemotherapy in conjunction with my radiation. The drug of choice was Adriamycin, also known by the name of Doxorubicin. While I do not know the exact dosage, I do know that it was a very small dose compared to what breast cancer patients get. It was described as a holistic dose. The doctors explained that there was no concrete evidence that the chemo helped to combat ATC but it would help to enhance the radiation. Because of this, they explained that the side effects of chemo would be minimal, but my side effects from the radiation would be increased.
For the first couple of weeks, on the days that I received chemo, I actually felt better because of the steroids that were administered before the chemo (to reduce any chemo side effects). I had more energy and generally felt better. Forty-eight hours later, I was feeling icky again.
I missed two chemo sessions. The first time was due to getting my PEG tube (feeding tube). They did not want to give me chemo the same day I had surgery for receiving the tube. The second time I missed the chemo session was when I had a low-grade fever.
The chemo was delivered thru an I.V. in a bolus, meaning that it was shot directly into the tube, not a drip.
In 2002, I received IMRT (intensity modulated radiation therapy). It was the “new thing” then. Few hospitals had the machines or the experience using them. The technology was developed at the NYC in conjunction with the doctors and the physicists.
I feel that there are two parts to the radiation process: assimilation and the actual receiving of radiation.
Assimilation was when I was “fitted” to the machine. First they made me a mask. I lay down on a table. They then took a plastic sheet (or some kind of material) that had lots of holes in it, wet it with water to make it pliable, and then stretched it across my face. It hardened almost instantly. If the person is claustrophobic (or even if not), it is not a pleasant experience.
They then put me on the table and lined me up with laser beams. At the cross points, I received tattoos. I have six of them. They are tiny dots. This is done so that every time I had radiation, I would be in the exact same spot so that I would receive the radiation in the exact same spot each time. I was not prepared for this day and walked out extremely shell shocked. I did not have any family members or friends with me and cried the whole two-hour train ride home. I count myself as pretty strong but that did me in, because it really hit home that day that I was sick.
The sessions were the easiest part of the process for me. I was in and out within 15 minutes, including setup and breakdown time. Toward the end of the seven weeks it became more difficult. The last week was he**. Because of the mucus and not feeling well, it was difficult to lie down flat on my back. Plus I was sick and tired of the whole thing.
The side effects were not fun. This is one of the most difficult cancer treatments to go through because of the side effects. My skin got incredibly sun burnt. I think that is the best way to describe it. I was able to combat this by using aloe every day twice a day from the very beginning of treatments. Once directly after the treatment, and then again before I went to bed. I only got a very dark tan. No burn!
Another side effect was that I got incredibly tired. This started within the first week. All I wanted to do was sleep.
Another side effect was sore throat. It is nothing like I had ever felt before. It was the same burn I talked about above, but only on the inside. At one point I also developed blisters on my tongue. I could not talk, swallow, or move my head. Luckily, it did not last long. I used Fentynal patches to combat the pain.
The worst and most long-lasting side effect was the mucus. It stayed with me for almost two months after I ended treatments. Not being able to swallow due to the sore throat and not being able to spit due to the mouth sores, I used suction. It was an incredible help. It gave me great relief.
While all the side effects were awful and the seven weeks felt never-ending, I always knew in my mind and my heart that I would make it through the ordeal. Please always keep that in mind. You have to have a focal point(s) to bring you through the tough days. Mine were my husband and my two little girls, who were 1 and 2 years old at the time.
I received my feeding tube the first week of treatment. I would not have survived without it. When I started my treatments, I was 128 pounds. When I was done, I weighed 92 pounds. Without the tube, I would have wasted away.
For the surgery, they put me out. The hole for the feeding tube was three inches directly above my belly button. I was able to go home the same day as the surgery.
In the beginning, I was eating normal food without using the tube. By day 10, I was 90% using the tube. My throat was so sore by this point that to get nutrition I had to use the tube. Overall, the tube gave me no trouble other than one week when the abdomen hole became infected.
Every day I had to consume many cans of Ensure (a formula drink that I was able to get at the drugstore). I always made sure that I had the super-high-calorie formula. The feeding tube literally saved my life.
Last updated: November 27, 2006