Claudia Pavao: early age onset colorectal cancer and Lynch syndrome survivor

Claudia was diagnosed with early age onset colorectal cancer and Lynch syndrome at 33. We had the chance to interview Claudia to learn more about her experience, including some of the positives that came from her cancer journey.

1. Can you talk about your experience with colorectal cancer?

When I was pregnant with my second child, I noticed that there was blood when I would go to the bathroom. Not much, but enough that I noticed. My midwife and I assumed it was from hemorrhoids from the pregnancy. Life went on, and the bleeding slowly got worse. I went to my doctor and requested a colonoscopy, and because I was “young and healthy” it took 11 months to get in. February 14th 2013…I will never forget. I found out that morning that my grandmother, the matriarch of the family, had cancer. Later that day, I got diagnosed with stage 2 colorectal cancer. Fast forward 10 days, and I still hadn’t heard from BC Cancer, so I went with my grannie to her cancer appointment. At the end, her oncologist asked if there was anything else he could do for her. She said, “Can you please take care of my granddaughter?” He became my oncologist that day. He is the best oncologist ever. I ended up doing 28 days of radiation, in conjunction with oral chemotherapy. I waited for approximately 6 weeks and then I had surgery to remove the tumour. My recovery was ok; better then I thought it would be. I ended up doing 4 more months of oral chemotherapy after I recovered from the surgery. Every day I told myself that I was OK and that I felt alright. It wasn’t until after my treatment was completed, when I started to feel better that I in fact didn’t feel great during treatment. The power of your thoughts is truly amazing.

2. How did you find out that you had Lynch syndrome?

To be honest, I had forgotten that I was even being tested for it. What are the chances that I actually had it? Pretty slim. But then I had an appointment with Dr. Lim, my oncologist, and he told me I had Lynch syndrome. It was like a slap in the face. There were tears…. many tears. The first thing that I thought about was my children. They have a 50% chance to carry the gene…or not carry the gene. As terrified as I am to find out if they carry the gene, I know that they will be well taken care of if they do have it. Knowledge is power.

3. What was recommended to you after you were diagnosed with Lynch syndrome?

The key is testing to detect for early cancer. Bloodwork for tumour markers and scans. I got connected to a genetic counsellor who was incredibly helpful for support, education and for helping me contact my family and have them tested as well. I am the only person in my family that tested positive for the Lynch syndrome.

4. How does having Lynch syndrome affect your daily life?

It doesn’t impact it daily for the most part. I do the annual tests. I’m not supposed to work night shifts (I am a registered psychiatric nurse). The biggest impact is anxiety. My worry of getting cancer again is there. My biggest worry though is whether my kids have the gene. When you have the gene, it doesn’t mean you will get cancer; you are just at an increased risk. I worry for my kids.

5. How does it impact your cancer screening guidelines?

In the second year after my Lynch syndrome diagnosis, I did bloodwork to check tumour markers, white blood cells, red blood cells and a colonoscopy, endoscopy, and CT scan. Third, fourth, and fifth year I believe was bloodwork twice a year, a colonoscopy and a CT scan. From 5 years onwards it is only a colonoscopy and bloodwork twice a year to check my tumour markers. They don’t check for other “possible” cancers unless there are symptoms. I also had a full hysterectomy due to the increased risk of getting uterine cancer…fully menopausal at 34!

6. What advice would you give to other people with Lynch syndrome?

Encourage your family to get tested! Make sure to keep up with the annual screening. Live life to the very fullest. Have a positive mindset. Laugh a lot and love hard!

7. What are some of the positives that have come from having cancer?

Honestly where do I start? The experiences I have had the opportunity to have, have been incredible! The people I have met throughout my cancer journey……they are absolutely incredible. My oncologist asked me to be featured in a video that was played at the BC Cancer inspiration gala in Vancouver. There was a whole team of people that came to my house that day to film – so much fun! At the end of the gala, I ended up in the lobby with some other attendees and we ended up going out and I found out they worked for BC Cancer Foundation and/or were part of the inspiration gala committee. I landed myself on this committee and have been on it ever since. This year is my 5th year!

I also volunteered for Canadian Cancer Society through a peer mentorship program. I was a mentor to people going through a similar experience. I had so many wonderful matches! Sadly, the program closed during the COVID-19 pandemic. However, anyone that knows me, or knows someone with cancer, contacts me. I have had the opportunity to reach out to some amazing individuals. I also had the opportunity to speak at a colorectal cancer forum! I was terrified, as I hadn’t done public speaking since high school. Although I was very nervous, it was very empowering to tell my story. As much as having cancer was not a pleasant experience, the care that I have had and continue to have has been amazing and the people and experiences I will cherish forever! The glass is always half FULL!