Tisa Perra

Tisa Perra - Profile

Age: 33

Hometown: Calgary, AB

What was your diagnosis? Malignant paraganglioma (a rare neuroendocrine tumor)

What school did you attend?

I graduated from Mount Royal College with an applied degree in environmental science and I’m working on a Bachelor of Science part-time at Athabasca University.

What are your career goals?To be a stellar environmental professional!

What is your occupation?

Environmental Advisor at a pipe and energy company doing corporate governance stuff (i.e. writing environmental procedures and guides, etc.).

 

Your Cancer experience:

How did you find out you were sick? What led to your diagnosis?

My primary tumor was removed from my carotid artery (neck) in 2002 when I was 24. I was told it was benign and carried on with my life. I got a great career and got married. Life was normal.

I felt sick to my stomach like I had IBS and I was tired for two or three years prior to diagnosis. In 2009, I was so sick that I ended up at the hospital with severe abdominal pain. It turned out I had gallstones. I had a pre-operative CT scan for my gallbladder and the docs discovered that liver was full of tumors. A month later, I was diagnosed with metastatic malignant paraganglioma.

What year was it? What was your age at the time?

In 2009 when I was 31.

In which hospitals were you treated?

Mostly the Tom Baker Cancer Centre at the Foothills Medical Centre. My liver transplant was at the University of Alberta Hospital.

What were your first thoughts when diagnosed?

We were shocked! How could this have happened to me? The doctor who diagnosed me made it clear that the outlook was poor.

How did your family react?

Shocked, sad and supportive. Everyone pulled together to help out. My grandmother was a superstar and helped me every day with basic things like making lunch while my husband was at work. During my many hospital stays, my husband never left my bedside. My dad and his wife would visit often on the weekends.

How did your friends react?

It varied. Some of my friends didn’t know how to react or deal with me. They sort of faded away. Others were great and our friendships strengthened.

What did your treatment consist of?

They couldn’t remove my gallbladder due to the cancer in the liver so they put in a drainage tube into the gallbladder. I had a tube sticking out of my abdomen for a year.

I took an experimental oral chemotherapy treatment with four weeks on and two weeks off. I also received monthly injections to reduce the effects of the cancer. The cancer was releasing hormones and causing heart issues.

I was quite sick and lost a significant amount of weight. At one point, I was 77 pounds and spent five weeks in the hospital due to septic shock. During this hospital stay, I had a stroke, seizures, and GI bleeds. I almost didn’t make it.

I consider myself one of the lucky ones since my cancer was only in my liver. By the skin of my teeth, I made it on the liver transplant list. It’s very unusual for a patient with metastatic cancer to receive an organ transplant. I think I’m their only liver transplant patient who was diagnosed with liver metastases.

What is your current medical status?No signs of cancer.

How is life different for you now post diagnosis?

Everyday is a gift and I’m so thankful to be alive. I try to make the most of each day I have. I realize how precious life is now. It’s almost a gift.

What was the toughest part of your challenge?

Getting through all of the tests to get on the transplant list. There is a series of standard tests to get listed plus I had additional tests due to my diagnosis. They wanted to make sure the cancer was limited to my liver. I thought about giving up. I’m glad I didn’t.

What was the best lesson you took away from your challenge?

Be engaged in your own health care and be a personal advocate for yourself.

What really motivated you to keep going while you were sick?

I was too young to die. I spent most of my life getting an education, and obtaining a great career that I never had a chance to do the things I really wanted to do like travel.

What are your thoughts and feelings about your illness now?  How have they changed since before your diagnosis?

I was very angry for awhile and it’s tough living with a transplant. I look and act just like everyone else in my age group. I have to spend more time taking care of my health and my peers often forget.

What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?

With my specific case, none. My cancer was caused by a genetic mutation. I do recommend that people get checked by a doctor if they feel chronically ill. It could be a sign of something more serious.

Did you attend any support groups during your challenge? No.

If you did not attend a support group, why?

I was too sick to do anything other than just try to survive. I found some solace with a support group on Facebook.

How are you connected with Young Adult Cancer Canada?

I attended one of the Wrong Way to Hope screenings.