Dr. Alicia Sarabia, (L), an ovarian cancer patient at the Princess Margaret Cancer Centre, and Tara Almassi, program coordinator for the centre's Comprehensive Ovarian Tumor Program, have developed Knowing Your Way, a podcast which serves as both an educational resource and support system for women and family members affected by ovarian cancer. (Photo: UHN)

Dr. Alicia Sarabia knows ovarian cancer statistics are grim.

With the Princess Margaret Cancer Centre Gynecologic Oncology team, she's working hard to beat them.

When Alicia started experiencing unusual menstrual bleeding and a firmness in her abdomen, she was practically certain she was suffering from fibroids. As a doctor herself, she thought she knew her way around her body fairly well.

It wasn't until she got an ultrasound and saw the look on the technician's face that she knew something was wrong. After asking a few questions, Alicia suspected what a radiologist colleague confirmed minutes later…the various cysts and masses involving her pelvis were likely ovarian cancer.

"I was shocked because, as a hospital-based physician, the women I encountered with ovarian cancer were very sick," she explains.

"Generally, I had been feeling well and could therefore not even begin to envision myself in a similar situation."

Although Alicia wasn't feeling very sick, she was soon informed by Dr. Marcus Bernardini that she has stage 3B ovarian cancer.

Ovarian cancer is known as a "silent killer" because of how difficult it is to screen for at an early stage, making it the deadliest gynecologic cancer with the lowest survival rates amongst all women's cancers. Approximately 57 per cent of women are diagnosed at stage 3, at which point the cancer has started to spread beyond the ovaries, into the pelvic region and surrounding lymph nodes.

Alicia struggled to cope with the physical, emotional and psychological impacts of the diagnosis and its treatment, and decided to create a podcast.

Knowing Your Way serves as both an educational resource and support system for women and family members affected by ovarian cancer. She and her husband, Paul Hendrick — former Toronto Maple Leafs broadcaster — felt she would bring a particularly unique and balanced perspective to the podcast as both a doctor and a patient.

'With knowledge, we empower them'

"While I was a patient, I definitely struggled during parts of this experience, and I remember thinking that, if it wasn't for some of the knowledge I had as a physician, it would have been even more difficult for me," she says.

"By imparting our listeners with knowledge, we empower them," Alicia says.

By just sitting back and listening to the Knowing Your Way podcast, listeners affected by ovarian cancer, their family members, and even the general public can gain a compassionate and informative understanding of the disease. This podcast is taking a step forward towards breaking the silence on this complex disease.

"If you intellectually know how to prepare for something because you know what's coming, that removes a lot of anxiety and you're less likely to get overwhelmed, so that you can make better decisions for you and your family and your friends throughout this journey."

Alicia and Tara Almassi, program coordinator for Princess Margaret's Comprehensive Ovarian Tumor Program, have been working on the project together for more than a year, and aim to give their listeners hope, and to show them that they're not alone.

"Getting this diagnosis is such a life-changing moment, and the message that you're not alone is so powerful because it's human nature to think 'why me?' when something bad happens to us," Tara explains.

"Then seeing that other people are experiencing the same things and have the same feelings as you— you can feel a part of a greater support system, which can be helpful in facing any difficulty."

Tara says the podcast isn't only helping patients and families get through an extremely difficult diagnosis, but is also helping clinicians better understand the patient experience.

"As clinicians, we understand the disease, but we haven't lived through it — for example, we don't know what it's like to talk to our family, and all the emotions involved," Tara explains. "For me personally, this is a very powerful podcast because it shows me a perspective that I don't often see in the clinical world."

In addition to serving as a support system and disseminator of knowledge, they also hope to raise awareness around ovarian cancer, as it's far less talked about than others.

Podcast 'could be very helpful in coping with this experience'

While it's not as common as breast cancer, there's only a 44 per cent five-year survival rate, which means one in two women diagnosed with ovarian cancer won't live to see five years. Women with breast cancer have nearly two times those odds, with an approximate 87 per cent five-year survival rate upon diagnosis.

"It's much less talked about because we still don't know how to screen for it early-on, so it's hard to advocate for something when we don't have all the answers," Alicia says.

The physical symptoms women experience tends to be common and non-specific, often attributed to irritable bowel syndrome, simple constipation or bloating.

"Most people feel bloating and fatigue, and some don't get any symptoms at all — and who can make that jump to cancer?" Tara adds.

Alicia says that if it weren't for the care she received from the Princess Margaret Cancer Centre's Gynecologic Oncology team, she may not have done as well as she has up until now.

"From the physicians to the nurses and the program coordinators, I honestly believe that I'm getting the best care I could possibly receive anywhere in the world, and I feel very fortunate," she says.

"Over the course of these podcasts, I've learned about the quality improvement initiatives they have here, that the team is constantly evaluating their progress to see how they're doing — and if they can do better, they put the changes in place to be better."

"Sometimes certain topics are hard to talk about, and people tend to internalize things," Tara says.

"But having a virtual, easily accessible outlet where you don't need to say anything at all and just listen, could be very helpful in coping with this experience."

Listen to the Knowing Your Way podcast on Apple, Spotify, YouTube and PodBean.

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