Ambuj Srivastava has joined OICR’s Patient and Family Advisory Council, motivated by his father’s experience with cholangiocarcinoma.

Soft spoken but with a big personality, Virendra Srivastava dedicated much of his life to advocating for the people he loved.

His family, his friends, his shipmates during 40 years as a marine engineer, or the community of South Asian immigrants in his adopted home of Vancouver – if they needed help, they knew they could turn to Virendra.

But when Virendra was diagnosed with cholangiocarcinoma – a rare form of bile duct cancer – in the summer of 2019, he was sometimes hesitant to advocate for himself.

That’s where his son and caregiver, Ambuj, recognized an opportunity to return the favour to his father.

Ambuj supported his dad through years of illness and side effects and countless medical appointments. By asking questions and seeking out solutions, the two were able to find additional treatment options to extend Virendra’s life. They were also connected to a community of cholangiocarcinoma cancer patients and caregivers and realized the power of sharing their experiences with others.

Though Virendra died of cancer in May 2022, that hasn’t stopped Ambuj for advocating for others affected by this rare form of cancer. He continues volunteering with the Cholangiocarcinoma Foundation, and recently joined OICR’s Patient and Family Advisory Council (PFAC).

“Even though my father is no long here, I get to carry forward his voice into patient advocacy and cancer research,” Ambuj says.

OICR News recently asked Ambuj about his family’s experience with cancer and what motivates him as a patient partner and advocate. Here is a snapshot of our conversation.

How did those experiences motivate you to advocate for others?
For the first year and a half after my dad was diagnosed, we didn’t really know anyone else with cholangiocarcinoma. It’s a rare disease, and that can be very isolating. Then I got involved with the Cholangiocarcinoma Foundation, which offered support for patients and for caregivers. We realized there were many people going through the same challenges we were, and we didn’t feel so alone.

I started volunteering with the foundation and gave a few interviews where I spoke about our experiences. I was also invited as a guest speaker at their annual conference where I spoke to audience of healthcare professionals, researchers, patients and caregivers. I had patients and caregivers reach out afterward and tell me they were positively affected by hearing what I had to say. They felt less alone, too. Healthcare professionals also told me they felt appreciated and that their efforts were helping patients. That’s when I knew patient advocacy was right for me. If I can make even one person’s life better for one day, it’s worth it.

I took that encouragement forward by working with the foundation to create and co-host their first monthly Canadian Patient and Caregiver Support Group. This was safe space for patients and caregivers to share their challenges, possible solutions and most importantly, encourage the importance of self-advocacy for those that were newly diagnosed.

What role did research play in your father’s experience with cancer?
Research gave my father options and hope. After his first-line treatment of chemotherapy failed, he was told to get his affairs in order – there was nothing else they could do. That was very disheartening. But we pushed to explore alternative options, and that led us to a clinical trial for a new treatment with criteria that matched his biomarkers.

That trial gave us hope, and ultimately gave him an extra year of life that he was able spend with his granddaughter, who had just turned one year old when he was diagnosed.

It also gave us a better understanding of how large the landscape of cancer research is and the importance of targeted therapies.

What do you hope to accomplish as part of OICR’s PFAC?
While my father was ultimately able to find a clinical trial, it took six or seven months of research and speaking to different oncologists to find an appropriate trial. I want to help improve access to clinical trials so that patients and their families don’t have to push so hard.

I want to continue raising awareness within the rare cancer community on the importance of self-advocacy and not solely relying on what treatment options are provided to them. I want to encourage them to keep asking questions and be open to novel treatments. That includes asking about genetic testing and molecular profiling, which helped us find mutations in my father’s cancer cells that led to a personalized treatment option for him.

I also want to encourage people with cancer to participate in research. It’s worth it – not only because it could benefit you, but also because it adds to ongoing research that may help someone else down the road. My father benefitted from his trial because of the cohorts of participants that came before him. Participating is a way for you, as a patient, to become a vital part of the solution.

As a caregiver, what unique perspective do you bring to patient partnership?
I believe that cancer research needs to take a holistic approach. It needs to look at the impact of diagnostics or treatments on patients, but also on their families and the people around them. Family members and caregivers often have priorities for their loved ones that may be different from a patient’s priorities. And both are important to a holistic approach to cancer care.

As a caregiver, you realign your purpose to something bigger than yourself. And so, it feels like a natural progression to want to give back to others. My dad may have had a quiet voice, but he had an inner strength that gives me goosebumps when I think about it. It’s rewarding to be able to share his voice and his strength to help make a difference. 

Caregivers also have priorities for themselves that are often overlooked. Their role and responsibility evolve as the needs of their affected family member increases. They have to adjust, adapt and reprioritize their own life frequently and it can lead to burnout, and just like for the patient, the caregiver is also not prepared for this journey.

Providing a support structure for caregivers where their needs are seen, heard and addressed is also vital to the overall cancer journey.