Introduction

I live in Beaumont, Texas, about an hour and a half away from MD Anderson.

In October 2022, I first started showing symptoms of my cancer, but I wasn’t diagnosed until March 2023 and I’ve been living with stage 4 cancer since then. It’s extremely rare. It affects 300 to 400 people in the US every year, which is about one in a million people.

Pre-diagnosis

Initial Symptoms

When I first started having symptoms, they were very mild and pain-related. I was having some mild back pain on the left side, which was eventually where the tumor was discovered. I would rate the pain at a 3 out of 10. It would always happen after long car rides, so I chalked it up to bad posture.

The pain was on and off throughout the next several months until about January. Then I had severe back pain that manifested at a friend’s house. I was sitting on the floor and it overtook my whole body. It was probably a 7 or 8 out of 10. Within a couple of days, it eventually settled down and then went away. I still thought it was my posture.

Getting the Scan Results

The doctor comes in with a look on her face and I knew she was about to give me bad news. My stomach dropped when I saw the way she looked at me. The whole mood in the room changed. My fiance came with me to the hospital, but because it had gotten so late and the chairs were so uncomfortable, he was sleeping in the car in the parking lot when she told me.

She gave me the news of this enormous tumor coming off of my adrenal gland and the very last thing she said was, “It has metastasized to your lung.” I could tell she didn’t want to say that part because that meant stage 4. At that point, I didn’t quite understand anything about what she was saying. She said it was 95% sure I had cancer because they can’t tell you 100% until they biopsy.

She ended with, “We don’t think we can handle this here, so we’re going to have to transfer you to an ICU.” They treated my blood pressure because that was all they could do for me. 

I called my fiance, told him where he needed to go, and gave him all the information I could. We didn’t know much, so I was relaying what little information I had. He was sitting there crying and I was comforting him more than I was comforting myself. I was completely disassociated. I went into shock a little bit. It was a surreal experience.

Waiting for Insurance

I didn’t have any coping skills because medical issues weren’t something I had ever dealt with, so it all hit me like a train. I went into a state of almost paralysis. All of a sudden, it was almost as if I could feel the tumor and it made me afraid to move and get out of my bed. I thought, Am I going to make it worse? Is it going to rupture? These types of tumors are very, very fragile. They’re like an egg. At the time, I didn’t know, but that was still a thought because I knew how big it was.

I was at my heaviest, but I started losing weight because I wasn’t eating well. I was so paralyzed by fear, worry, and not knowing anything. While at the hospital, I even asked the nurse if I was going to die soon and she changed her demeanor a little bit. She said, “Oh no, no, but this is very, very serious,” and that stuck with me.

I had something serious going on and all I was doing was waiting. I had no idea how fast things needed to be moving. Each day, I would try to get through the day and after another day’s done, move on to the next day. I was looking at my calendar every day, compulsively checking the days off until I could get my insurance.

Finding a Specialist

When I joined support groups on Facebook, they were recommending certain doctors who were doing research on my type of cancer, but they’re located in Maryland at the National Institutes of Health. A girl in the support group called me and gave me all this information. She even put me on a three-way call with someone from the NIH about getting set up. Eventually, someone gave me the direct phone number and email address of the specialist, Dr. Jaydira Del Rivero.

I wanted to get recommendations and second opinions, and see what a true expert would say. The support group led me in that direction and I kept seeing her name over and over again in these groups. I emailed my scans to Dr. Del Rivero and they gave their recommendations.

What helped was this was all government-funded, so it’s all covered. For me, it was perfect because, at a certain point, I couldn’t work anymore. The symptoms had worsened to where I would get very high blood pressure and resting heart rate, so I didn’t feel like it was safe for me to work. I was afraid to even get up and use the restroom because my heart would start pounding like crazy.

EDP Chemotherapy

Unfortunately, ACC patients don’t have a lot of FDA-approved treatment options. We only have one line of chemo, EDP (etoposide, doxorubicin, and cisplatin), and that’s done inpatient. 

I showed up to my first chemotherapy session thinking I was going to go home after an infusion. But when I got to the hospital, they told me I was going to be there for a few days. It’s very intensive. It’s four days of infusions and the first day is doxorubicin, which is otherwise known as the Red Devil.

Before they start chemo, they have to do all sorts of tests to make sure your heart’s okay and I didn’t have any issues there. On the second day, I had etoposide and then on the third and fourth days, I had a combination of etoposide and cisplatin. Usually, I’d be in the hospital for five or six days.

Mitotane

While doing chemo, I was taking mitotane, the only FDA-approved medication for adrenocortical carcinoma that’s been used since the 60s. What it does is shut down adrenal function and supposedly help shrink things, but more often than not, it slows things down. They use it in conjunction with chemo.

By my second round of chemo, I was taking nine pills per day. They would make me gag because they were enormous and very chalky, which would cause more throwing up.

Mid-Treatment Scan

By the time I was going to start chemo, the tumor had grown to 16 cm and it was so painful. The pain went away almost immediately after the first cycle. I was going to get two rounds of EDP and get a scan to see if it was responding. Thankfully, we saw shrinkage. They recommended for me to do a third round of chemo because we were trying to get to surgery so I could get the tumor removed.

I was going to NIH to get that done by one of their amazing surgeons, Dr. Hernandez. They typically keep the tumors and do different treatments to see what might work.

Targeted Therapy

They pulled me off mitotane and put me on lenvatinib, a TKI inhibitor. I don’t have many side effects from it. They use that in combination. It’s better than Keytruda (pembrolizumab) alone.

I only have to take two pills a day now. Symptom-wise, as far as the cancer goes, I feel way better. There are some indicators, like some tumor markers, that have significantly gone down. My team is seeing that things are trending in the right direction, so I’m hopeful that this new treatment is working.

I know some people in my support group who are on the same combination and they’re having amazing results. They’re stage 4 like me with no evidence of disease.

I struggled with body image because after my surgery, I was down to 82 lbs and that played a part in my mental health. I felt helpless because I realized there were so many things I couldn’t do, mostly due to the side effects of the medications I was on.

I would be wiped out and I wasn’t used to that. It hit me out of nowhere. I went from being a fixer or a helper to somebody who needed help. I didn’t know how to do that. It was painful for me to adjust.

For a long time, it was one of the most difficult parts for me mentally, especially after surgery because I was in horrible pain. It was an open surgery, so I have a scar from right under my rib cage to past my belly button. It’s probably 10 to 11 inches long.

After surgery, I had to get a lot of help with doing basic tasks. I felt awful for the people having to take care of me because this wasn’t who I was and that was a huge adjustment. I didn’t know how to cope.

I wasn’t getting therapy at the time, but I am now through MD Anderson, which is amazing. I see a counselor and I feel like my mental health is the best it has ever been despite my diagnosis. I’m getting a lot of help in areas I’ve never had help in, so in a way, I’m rebuilding myself and enriching my life. It’s amazing how these resources have been helping me.

Words of Advice

Don’t let the doctors dictate what happens to you. If you have a gut feeling, act on it. Don’t be afraid to get second opinions. Seek out experts. There are usually other routes that you can take. There are so many resources out there. It was difficult for me in the beginning, but once I got everything set up and figured out, I told myself I may have saved my life with these changes.

There’s no telling where I would be right now if I hadn’t made those choices to focus on what I needed to do to get myself where I needed to be. One thing that they would always repeat in my support groups is don’t let location dictate your treatment, who you see, or who you get your recommendations from. If that’s a problem, then start looking into things. You’d be surprised at how many resources are available out there.

Don’t idly sit back and let things happen if things don’t feel right. Talk to multiple people. Join support groups. Not only do they provide great advice, especially in my case when there’s not a lot of information, but the sense of community that you get from it is priceless. I have made so many amazing friends in the ACC community.

There are usually support groups for every diagnosis that you can think of. Mine is so rare and there are three that I’m on. If I find someone with my diagnosis, the first thing I always think of is to try to plug them into the support groups. It helps in so many different ways that it might change the whole trajectory.