8 Years in the World of Choriocarcinoma

Do you find yourself attributing health issues to age? At the age of 50, there are many changes our bodies go through. The issues I was having I just thought were normal changes for my age,  but thankfully, I finally decided to see a doctor. He saved my life.

I experienced abnormal bleeding in 2014 after I had stopped periods a year prior.  It wasn’t bad, just a nuisance. Then I had two episodes that were very severe. I said to myself, “If this doesn’t stop soon I need to go to the ER” It did stop, both times. After the second time, I thought “Even if this is normal, I need something done about it.”

I went to an OBGYN who I had never met. He decided to do a biopsy and this led to another one of those bleeds. I joked with him that at least he knows what I was talking about. As I got dressed, the bleeding wouldn’t stop, and that is when my doctor came in and said I was going to have D&C surgery. I called my husband and told him to come over, but that it should be a quick procedure and I would go home. 

I continued to chat and joke with the doctor and his team as they readied me on the operating table. He warned me that if there was a problem, they would do a hysterectomy. That didn’t bother me at all, no more bleeding problems I thought! 

Bleeding was the theme of the day apparently because I almost bled out and they had to do an emergent hysterectomy. I required about 4 units of blood during the surgery and another the next day. I didn’t realize how scary it was until my doctor said, “I’ve been scared twice in my life, and that was one of them.” Cancer still wasn’t on my radar, even though they told me that it would be a few days for the pathology.  

After a short hospital stay, I was able to go home. A few days of rest later, I received a phone call. The nurse said the doctor wanted me to come in for the results, now cancer was on my radar. It couldn’t be good news if he wanted me in person. It wasn’t good,  not only was I told I had cancer, it was a rare form of cancer I had never heard of: Choriocarcinoma. The doctor told me that this is not a death sentence and set me up with an oncologist at the Rochester Mayo Clinic. I am so grateful that I happen to live so close to such an amazing health care system. 

Appointments for scans and blood work were set up. Thankfully, the oncologist assigned to me is second to none. My scans showed that the cancer that originated in the uterus had spread to my lungs.  Due to my age, length of time since my last pregnancy (14 years), and the spreading to my lungs, I was going to need chemotherapy. I remember it like yesterday… The appointment was on a Thursday and I asked, “When do I start treatment?”  I was only two weeks out from surgery, and she answered “Monday,” I remember thinking to myself, “Wow, they aren’t messing around.”

The treatment included in-patient as well as out-patient care. Some type of treatment every week for five months. This type of cancer is very treatable and has over a 90% cure rate, so I stayed positive throughout treatment. 

Not only is cancer a bit scary and taxing physically, there are emotional strains as well. I am typically a very positive person and tried to stay that way.  I was not one that was worried about losing my hair, heck it made getting ready even easier. I also wasn’t one to worry about dying, but what did cause some anxiety was the worry about my daughters. They were 14 and 21 when I was diagnosed, & how it affected them was my biggest concern. I still remember my first treatment, I had a bad reaction and they had to stop it. My oldest was with me and it really scared her, which was heartbreaking for me. My youngest had to be on her own a fair bit when I would be gone for treatment and I know that was tough for her as well.

I was always honest about my situation, but I think I hid how sick I was when I could. I just kept going no matter what. For the most part, I really was doing well enough considering the treatment. 

The treatment was working, my tumor marker was dropping significantly. For this type of cancer, my tumor marker is HCG, the pregnancy hormone. I would joke that thank goodness it was cancer and not getting pregnant at age 50! The finish line kept moving, but I did finally finish after five months. 

The celebration of being done with chemo didn’t last long. Two months later my HCG started climbing again. I received a call from my team that it was up and I would start treatment again the next day. This was stressful and disheartening news, especially after I felt like I came all this way. I am an elementary school teacher and being gone is very difficult for my profession. Plans need to be made for the substitute, as well as getting organized at home and the logistics of getting to and from treatment. 

The treatment plan this time was very similar to the first. I was treated every week for three months. I don’t know if it was the amount of treatment over months, or if I also caught a bug, but I went through a difficult period. I had lunch and prep time back to back at school so that allowed me to go home and take a short nap in order to make it through the rest of the day. This eventually wasn’t enough and I had to be hospitalized for a few days and then take a month off from work. Having to take the time off was tough because I felt like being with my students really helped me maintain my sense of normalcy, I didn’t want to be home saying “poor me.” 

I seemed to have great success getting that tumor marker number down, but it always seemed to go back up. This time I made it four months before my number was up again. We held off a couple more months before starting a new regimen of treatment. This treatment would be much more taxing and would last eight months. 

Little did I know at the time, this would continue to be a recurring problem.

Two months later, here I am again with the ugly number rising again. This time was a much more aggressive approach. I had two thoracotomies (one for each lung) to remove some of the cancerous nodules and then followed that up with the worst treatment yet. I was in the hospital for a week, two weeks off, and then in the hospital again for a week. I did this treatment 4 times… The week of treatment and the week following were very tough, but by week three I felt better and thought, “I can do this.” I did have days where I was just sick and tired of being sick and tired. When I look back now, I don’t know how I did it. 

Four months later, guess what goes up again and again? The next two treatment plans I did were not successful. I was at my last resort by this time. Thankfully, I had survived long enough that there was a new drug (pembrolizumab) being used for skin cancer that I was able to get a compassionate use designation, which would allow me to use it for my cancer. Thankfully I was able to use it because it worked!

I had made it a year now without a recurrence! However, two months later, my number was rising again. We again used pembrolizumab, as well as radiation for the first time. Success again!!! This time I feel it is for real! I am now 24 months out with no recurrence. I still have permanent neuropathy from all the drugs, but it’s better than not being here at all!

While Cancer is quite awful, it can also bring out the best in people. The amount of support that I received from family, friends, colleagues, and my community was indescribable. Friendships grew closer, I was so grateful that my friends came out of the woodwork to be there for me. I really felt so supported it seemed wrong to complain about my situation.

I am eight years out from my initial diagnosis now but still haven’t been able to say I’m in remission. That’s ok for the most part, but it is hard to have that worry in the back of my mind, stressing while waiting for the monthly blood test results.  I still have a very high percentage of risk that the cancer will return again, but I’ll take what I can get for now.  

I find myself defining events in my life as, ”before I got sick or after I got sick.” I don’t necessarily think that is a bad thing, but it does make me wonder what my life would be like now if I hadn’t got cancer. Would it have been better? Not necessarily, but I guess we will never know. 

This experience was at times brutal, frustrating, and tiring. However, there was a lot of good that came out of it too. I had an abundance of support from all aspects of my life and not many can say the same, I met amazing people and was given the best care possible. I also even helped future choriocarcinoma patients with all the drugs that I tried. Hopefully, this is the end of my cancer story.

Photo courtesy of author.