I was 35 years old when I was diagnosed with Adrenal Cortex Carcinoma–stage IV, metastasized to the lungs. I was recently divorced, a single mom with a five and seven-year-old
That’s the scary part about ACC: don’t have symptoms until it’s too late. The only thing that caught my attention was high blood pressure which was very unusual for me. It got to the point where I finally told the doctor “this isn’t normal and you have to start looking at other things-not just giving me medication!”
I essentially forced him to run any and every test he could think of and he did an ultrasound of my abdomen and that’s when they found a mass. A CT scan confirmed it was a tumor in his CT scan showed it had spread to my lungs.
The first doctor told me there was nothing they could do for me I was too far gone and to go home and have hospice come in. I did research and find out that because his cancer is so rare, you really have to learn about it and there’s really only one expert: Dr. Gary Hammer at the University of Michigan. I begged and pleaded with my doctors and essentially forced them to contact MD Anderson for the surgery and they finally agreed to do the surgery.
I was diagnosed in March 2014 -I had surgery in June. They removed the tumor which was on my right adrenal gland they removed my right adrenal gland, my right kidney, part of my liver and some of my lymph nodes. Then I had to battle with my oncologist. I found a good one and he contacted Dr. Hammer at the University of Michigan and we came up with my chemo treatment plan.
Part of the problem with our rare cancer is little to no treatment options. We take a chemo pill called mitotane it is a form of DDT and it is not well-tolerated and doesn’t really work well.
I’m currently doing IV chemo I have Cisplatin, Etoposide and Doxorubicin.
The prognosis is poor and reoccurrence is high. But a lot of it is because there’s not much known about our cancer and not a lot of funding to research it.
When I was diagnosed I was in shock, I was devastated. But then you look deep inside and you decide if you’re going to give up or dig deep and fight. I chose to fight. I fought to have my surgery I fought to have my treatment plan and every day I fight to stay alive.
Our statistics are based on few patients and the numbers are grim. I don’t put a lot of weight into the statistics. I speak to other survivors. Whether it be ACC patients or breast cancer survivors. We’ve all been through this hell and any support is welcome. Talking to any survivor always gives me hope! I think the prognosis is I have a 5% chance of living five years. But I don’t believe that to be true and I know of others who have made it much longer.
My advice to other patients going through a similar diagnosis is to never give up hope. Be your own advocate. Get involved with your own treatment plan. Learn about your treatment options. No one fights alone. Look for support groups. I found great support groups on Facebook.