My MEN2a And Medullary Thyroid Cancer Story

It has been a hectic few months. Multiple endocrine neoplasia 2a runs in my family, and I was aware that, but never knew what to get tested for. Mom wanted me to go to her doctor, but that’s two hours away and really wasn’t an option. Last year, one of my brothers had the cancer, so I thought I should get the genetic test. I haven’t been to any kind of doctor in 12 years, and this was basically the only reason I went. My Doctor sent me for an ultrasound before knowing what to test me for due to the family history. I asked the man doing the ultrasound if he saw anything, and he told me yes he saw calcification and nodules and my doctor would probably want to do a biopsy.

About three weeks later, I had an appointment with an ENT. He said they could do a biopsy, but I suggested it might be a waste of time and money considering the MEN2a, and I’d have a 50% chance of having that mutation and have to get the thyroid out anyway. Waited until he got information about the genetic test from my brother’s doctor. I got the test, and it came back saying I have the mutation. Had another appointment with my ENT and scheduled surgery for the next time Molly had vacation, since she can’t just take off work because we are not married, and she wouldn’t do it if we were.

During that time, I also had to do a blood test for a pheochromocytoma and a 24-hour urine test. Keeping a bottle of piss is not fun, and even worse is the fact that it had to be kept in the refrigerator. The thing is that if I were to have had the pheo that would have had to have to be dealt with first. Normally, they only effect a few people per million, but they do occur 50% of the time with MEN2a, I believe.

Next was the CT scan. One of the neck and one of the abdomen to confirm that I did not have a pheo. The girl who did the CT scan was asking me the normal questions, and then she asked have you ever had cancer. I laughed and said, I think that’s what we’re looking for. She said I hope not, and I said it’s pretty much inevitable at this point, but will have it taken out of me as soon as the doctor can do it.

Appointment with ENT the next day to go over the results. Confirmed I had the MEN2a mutation. Assumed the tumor was medullary thyroid cancer and said the lymph nodes looked OK, but wanted to do a total thyroidectomy and central dissection. Did some paperwork and scheduled surgery. Tests and CT scan showed no evidence of a pheo, so I could proceed with the thyroid surgery. I went home and began to drink to celebrate having the date set and no pheo yet. I got shit-faced. I have not had a drink since then, figuring it would be a good idea to be as clean and healthy as possible until after surgery.

I began going back to the gym and doing cardio. Even though I hate cardio, but I thought it would be a good thing to do to prepare my body to heal. It was killing me, but I had been avoiding excising until I got the pheo results. I continued to go to the gym until 2 nights before surgery. The night before, I wanted to be well rested. I hardly slept that night. I was not worried, but I was excited about the possibility of putting this all behind me.

Woke up the morning of surgery in a very positive mood. I got a shower, went on Facebook a little, then it was time to go. My ENT was a bit late due to an emergency, but I was still calm. The anesthesiologist asked me some questions. All the answers were pretty much no. Then he asked if I needed anything to calm me down. I said no. I was more calm than I have been in a long time. As they were pushing me to the operating room, I asked them to push me out the door and down the hill outside. They laughed and said no because there is not enough room for them to ride. I said we can just get more beds. I also said I picked the wrong day to do this since it was going to be a nice day outside, and it was our first chance of thunderstorms.

They brought me, I got into the operating room, and I was still calm. Thought they had some neat equipment in there. They asked if I wanted anything to calm me down, and I again said no. Next thing I knew, I was breathing oxygen and could feel a burning sensation traveling up my arm.

The next thing I was aware of, the nurse said everything went well. I said thank you and said the doctor must be good. That’s when she told me the doctor had taken out her thyroid for cancer. I asked her if it hurt because I felt no pain at all, just a little tightness, and she said that’s what she felt.

I had to spend the night in the hospital, so they could watch my calcium levels. They brought me food about an hour after I got to my room. When I mentioned I hadn’t had coffee, the nurse was nice enough to bring me two coffees, and she said she understands. They kept having to bring water too. That night, A different nurse disconnected my iv since I was drinking enough. She did the last calcium test that night and told me that I’d probably be going home tomorrow and that she wouldn’t see me anymore. She thanked me for being nice. I hardly slept because of sitting up, but that’s what they wanted to do. I never had any pain and never took anything for it. Just the back of my neck was a little stiff from sitting up, I guess.

I finally got to sleep, and the doctor woke me up, of course I finally fell asleep about half an hour before he came in. He said He was pleased with the surgery and said they had to re-implant one parathyroid, and he couldn’t say he didn’t take any others but didn’t think he did. He said he took the lymph nodes, and they looked good, but pathology was testing them and would go over that with me in a week, then put me on thyroid replacement hormone then. The doctor said that he was pleased with my calcium levels and I could go home. Of course, that is when I found out the phone in my room was broken. Naturally, that’s the one-time Molly forgot her cell phone too. She had gone to the gym to run. The nurse called for me and ordered me breakfast.

When Molly got to the hospital to pick me up, I signed out. When I got up to walk out, I felt a little iffy, but that was just from not getting up for 24 hours. Went home and pretty much was careful about moving my neck, but the next day I went and got the drain removed, we went to the store and saw Molly’s grandkids. They were a little weird about my “boo-boo” but that’s pretty much to be expected.

One week later, I had my followup visit with the surgeon. He said everything looked great. Pathology said the tumor was Medullary thyroid Cancer. All ten lymph nodes showed no evidence of cancer, and he was pleasantly surprised by this.

I had a couple of very sluggish days when I was extremely fatigued when I started the levothyroxine, but besides that, I have just plain felt great. Once the couple of days of fatigue passed, I was back to the gym. Just did cardio for the first week. Last week was the first I’ve tried weights, and I started very light to see if I would encounter any problems with the motions. All is good.

On nice days we’ve been walking to and from the gym and that’s about a mile each way. Monday we walked to the gym then after we were done, walked to get supper at Isaac’s which is another couple of blocks East. Last night we walked to the gym then from the gym to CVS to pick up my prescription then home from there. About 3.6 miles total, so I’m thinking I ought to be able to get back into hiking once I am sure I will not just run out of energy a couple of miles from the car.