“I was diagnosed with Adrenal Cancer on July 15, 2016. The symptoms started a couple years before with very high blood pressure that was not being controlled, even on 2 medications, horrible hot flashes, night sweats, and irregular cycles. I attributed it to peri-menopause since I was in my late 40s. The year before the diagnosis, I started having bad reflux. I would wake up numerous times a night to go to the bathroom. I was a side sleeper, and every time I would roll over I would wake myself up crying with pain in my sides. I also had pain in my lower back that never went away. I could not take a deep breath or cough or sneeze because I could never get a deep enough breath. I remember telling my friend in the beginning of July that something was in my abdomen that wasn’t supposed to be, but I didn’t know what it was or where it was.
To back up 6 months, in Jan of 2016, my doctor put me on Omeprazole for reflux. It did not help at all, in fact it just got worse so I quit taking it. I went to her again in early July to discuss the pain I was having. On that day, the pain was high on my right side and she said the area indicated a gallbladder issue and she wanted me to have an ultrasound. I went in on Friday, July 15th for the ultrasound and I knew it was not the gallbladder when the tech started ultrasounding my entire abdomen and back. Thirty minutes after leaving, my doctor was on the phone saying they found a mass and I needed to get back in for a CT scan right away.
That afternoon, the CT scan revealed a 14 x 11 cm mass. My regular doctor didn’t know what it was and said I needed to get it biopsied. My friend is a radiologist in the hospital system where I had it done, so I texted him right away as the images were coming through to have him look at it. He called and said he was 99% sure this was adrenal cancer and very rare and I didn’t need it biopsied, I needed a specialist to take it out immediately. He said he would find a surgeon for me and get me in on Monday, which he did. His words to me were “this is an evil monster and needs to come out last week”. I will be forever grateful to him for making phone calls and finding the right surgeon.
The following week, I had a PET scan and praise God, it revealed no metastases! However, the tumor was so huge it lit up like the sun on the scan!
On August 5, I went in for surgery, fully expecting to come out of it without my left kidney, spleen, and some lymph nodes. However, the surgery went faster and better than expected and the tumor was able to be removed without anything else. It was giant by that time: 20cm x 14cm! No wonder I had reflux and had not been able to breathe! It had been pressing my stomach flat, squashing my lungs, pressing my bladder…it was like being pregnant with a 6 month old baby!
To make a VERY long story short, I met with many doctors, both locally and out of town, to find out more about this cancer. One of the local oncologists used to work with Dr. Fojo and he was already familiar with ACC and Mitotane. He wanted me to start taking it. Because the cancer had not spread, I was not comfortable with the thought of taking chemo. I met with his colleague who is a radiation oncologist and since he had never seen a case of ACC, he did some research and suggested I go to U of M and meet with Dr. Hammer. One month after my surgery, we met with the U of M team, who were all fantastic! Because my mitotic rate was low, Dr. Hammer said he was on the fence about me taking Mitotane, but if I were his sister, he would suggest I try it out. I chose not to, but we did decide that I would do radiation and Dr. Jolly at U of M would work with my local oncologist so I could stay at home and do treatments. Over the next few weeks, I got prepped for radiation, but I just had no peace about it at all. In the meantime, I had found all the ACC facebook groups and met some amazing people who really helped answer so many questions. One of them suggested that I get a second opinion and call Dr. Fojo, which is what the original local oncologist had told me to do in the first place but I had forgotten all about that in the mental chaos of all of this new diagnosis.
We put radiation on hold, sent all my records to Dr. Fojo and although it took quite a few weeks to hear back from him, I am so glad I waited. He suggested I just get scanned every 3 months and if more cancer showed up, have surgery and then do a procedure called HIPEC that he was having lots of success with. (I actually knew about HIPEC because 2 years before, a friend’s mom had it done for a rare appendix cancer.) After discussing this with my husband and doctor, and lots of prayer, I decided to go that route. For the first time since my diagnosis, I was flooded with a sense of peace about the treatment plan I should do.
I just celebrated 5 years cancer-free and the only thing I ever had done was my initial surgery! For the first 2 years, I got scanned every 3 months. Then I went to every 6 months. Now I will just be going once a year for the rest of my life. I never thought I would live to see this day and I cried on August 5th this year with gratitude at the thought that I beat the 20% chance I had been given of living 5 years.”