- Adrenal Cortical Carcinoma (ACC)
- Interviews
Accmom's interview
How did all start?
I was in the best shape of my life, riding my bike 20 miles a few times a week with my family. I had pain in my back, I thought I pulled a muscle, it wouldn't go away. Then one day a had stabbing pain in my side, its the worst pain I've ever had!
Do you already have a diagnosis? How long did it take you to get it?
10 days later in Buffalo General Hospital I was Diagnosed with stage 4 AdrenalCortical Carcinoma.
I was told to go home and enjoy my summer because I'd be dead by Christmas.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I went to Roswell Park Cancer Institute in Buffalo NY, I met Dr Thomas Schwaab, he cut out my tumor (it was as big as my head), my left adrenal gland and left kidney.
I also met thoracic surgeon Dr Yendamuri. He did open surgery on both my lungs, sticking his hands in and feeling for each and every tumor. I believe he took 31 out of my left lung and 11 out if the right.
What has been the most useful thing for you so far?
Having met surgeons that knew about ACC, they did everything correctly! I had all my surgeries done open so they could make sure each tumor was removed intact. Some with ACC gave Dr's do laparoscopic surgery and the tumor breaks and spreads.
What have been your biggest difficulties?
At first I knew no one who had ACC, its so rare.
I could only find a few horror stories online.
How has your social and family environment reacted? Have your social or family relationships changed?
I was surrounded by loving family and friends, even my dog stayed by me!
I had so many medical bills our church and community did a very large fundraiser.
I'm still tired, I can only work for an hour or two. I have neuropathy and pain from my surgeries.
I thank GOD I'm alive!
What things have you stopped doing?
Working as much, riding my bike.
What do you think about the future?
I prayed God would let me see my children graduate, get married and have children of their own. They've graduated so I'm praying i'll see the rest!
So far, which years have been the best years in your life? What have you done during them?
The past few years have been great even though I'm still tired and in pain, I'm cancer free right now, I get to spend time with my husband and family.
What would you like to do if you didn’t have your condition?
Be more active, get another Golden Retriever, lol.
Work more, sometimes I feel like a burden on my family
If you had to describe your life in a sentence, what would it be?
Blessed to be here.
Finally, what advice would you give to a person in a similar situation?
It is crucial to find a Dr with experience in treating an ACC patient, if they say laparoscopic surgery RUN! If they give you no options keep looking for a new Dr. You MUST be your own advocate for your care. If my husband and I had just taken the word of that first Dr I would be dead.
Look on Facebook for ACC support groups today there are many, we are all willing to help. Some even have Dr databases for you.
