Guest blog: “The more I expand my knowledge the more I also understand that there is hope”

Pleased to introduce you to our first guest blogger, who wishes to remain anonymous but is happy to share their thoughts as someone affected by cancer.


Guest Blog Post – 1

September 2022, Newfoundland and Labrador

Cancer has affected my family in so many different ways. I am fortunate enough to say I have never had cancer, but I cannot say it hasn’t affected my life.

When I was roughly 13 years of age, my family received news that no family wanted to hear. My mother was diagnosed with kidney cancer and was about to be sent to St. John’s for surgery. I really did not understand, even though I was 13. It was very difficult to wrap my head around. I did not understand why it was happening either. That same year, my mother’s uncle, my great uncle, was also suffering from cancer. We were very close with him. He unfortunately passed in 2015. I am very fortunate to have my mother, my largest supporter and best friend by my side today, cancer free. There are many people in this world who aren’t as lucky.

With cancer affecting my family in so many ways, I decided a long time ago that I was going to help make a difference. I have participated in the Relay for Life, I have joined a wonderful public interest group on cancer, and I have tried to educate myself on the concept to the best of my ability. Cancer is, without a doubt, something that we fear. It has a massive impact on the individual, as well as their family and friends.

The genetic makeup of cancer is something so complicated that many cannot begin to understand; it’s a disease that has been taking lives for over 3000 years, as the first documented case of cancer is from around 1500 BC. It is also very likely that cancer has always been around, and this is just the first documented case when people were beginning to understand. Around 360 BC, Hippocrates deemed the disease to be termed carcinoma, then in later years the English termed it Cancer.

I do as much research as I possibly can, and I always ensure it is coming from a trusted source. 50% of people in Canada will be diagnosed with cancer in their lifetime, and 25% of those will pass away from cancer. As of today, there is no set cure. There are prevention measures that can be taken, as well as treatment, such as chemotherapy and radiotherapy. But prevention is better than treatment. The prevention measures that can be taken such as wearing sunscreen in the sun, eating healthy, remaining active, getting vaccinated, are just some of the ways you can reduce your risk. In saying this, sometimes cancer just occurs even with all these measures being taken. Always remember to live a healthy life, as well as a happy life, as tomorrow is never promised. Sometimes even if you do all these things and more, as my mother did, you can still obtain the unfortunate diagnosis.

I explain all these different facts for the sole purpose of understanding. I truly believe that educating ourselves on this topic can result in a small decrease in risk. I believe that educating ourselves about anything, especially things that scare us, has benefits.

Cancer was something that since I was a young child, frightened me. However, the more I expand my knowledge the more I also understand that there is hope. There is hope to not only decrease risk, but the hope for a cure and to find more methods of protection.

Disclaimer: Guest blogs are the purposes of education and/or sharing perspectives. The information shared by bloggers should not be interpreted as medical advice. All health information should be discussed with your health care provider.

Dissemination of the work of Public Interest Group on Cancer Research (Jan-May 2022)

We widely disseminate the work of this group for wider audience. For example:

We submitted a report to Eastern Health / Oncology/ Provincial Cancer Care Program leadership in Jan 2022.

One conference abstract is presented in the ARCC conference (ARCC: The Canadian Centre for Applied Research in Cancer Control) in May 2022 – see here.  

The second abstract will be presented in the Canadian Association of Psychosocial Oncology 2022 conference (Sept 2022).

We will continue to bring the voices of cancer patients and families in NL to the heart of the conversation, and elevate them. Stay tuned for new posts where we will talk about how, where, and when we communicate the patient and family perspectives, opinions, interests, needs, or priorities!

What did the Public Interest Group on Cancer achieve in 2021?

One of the primary aims of this group has been to identify the needs and priorities of the cancer patients and families in the province, and then design research studies and public engagement activities to address these needs. In 2021, we efficiently identified the key priorities of patients and families in the province and are now moving on with specific topics (e.g. mental health needs).

We are excited to say that as the entire group, we also developed two projects together. One of these projects is now funded and aims to organize The Public Conference on Cancer in Fall 2022.

Some of us also advocate on behalf of the cancer patients and families in Newfoundland and Labrador

Dr. Sevtap Savas also sent a letter advocating or better care for cancer patients and families in NL in April 2022

Who are the members of the Public Interest Group on Cancer Research?

This group currently includes 12 public members affected by cancer, in addition to three investigators (Drs. Holly Etchegary, Cindy Whitten, and Sevtap Savas). We thank the previous members in 2021, Dr. Teri Stuckless, Dr. Farah McCrate, Rebecca Roome, Doug Smith, and two public members, for their contributions!

Sevtap Savas, PhD

Dr. Sevtap Savas (Investigator): Dr. Savas is a molecular geneticist by training. During her graduate studies, she did work on Mendelian diseases, such as Spinal Muscular Atrophy (SMA) and Usher Syndromes. Since 2002, her research is fully focused on cancer. Her current cancer research interest are: medical, social, and patient-reported outcomes in cancer and their genetic, socio-demographic, and disease-related predictors. In addition, she leads large-scale genomic sequencings to help identify biomarkers in cancer. She is increasingly involved in patient-oriented research and public engagement, thanks to many wonderful public and patient partners, colleagues, and funding by the Office of Public Engagement at Memorial. Together with other dedicated individuals in the province, she advocates in order to improve the conditions and experiences of cancer patients and families. She is the lead for the Public Interest Group on Cancer Research since its inception (2021), a member of the TFRI’s Marathon of Hope Atlantic Cancer Consortium, the lead organizer of the Public Conference on Cancer (2022), and the current chair of CAPO’s Advocacy Committee.

Dr. Etchegary

Dr. Holly Etchegary (Investigator): Dr. Holly Etchegary, PhD  is an Associate Professor in the Faculty of Medicine, Memorial University. She is an applied health services researcher and social scientist whose research program revolves around the psychosocial impacts of genetic conditions, health decision making and the health system and clinical management of cancer, including inherited cancers. A social scientist by training (Social/Health Psychology), she has content expertise in public attitude research and methods and has conducted numerous studies on general public and patient perceptions of genetics and genomics. She is a founding member of the Public Interest Group on Cancer in NL. Since its inception in 2014, she is the Academic Patient Engagement lead for NL’s CIHR SPOR Support Unit and sits on CIHR’s national patient engagement working group. She has expertise in patient-oriented research methods, patient engagement, and mixed methods for health research generally. Many of her research projects include patient and family members as partners and she teaches the only graduate level course on patient engagement in health research in Canada. 

Dr. Whitten

Dr. Cindy Whitten (Investigator): Dr. Cindy Whitten, Ph.D., M.Sc., is a Clinical Research Scientist and Manager of Applied Health Research in Eastern Health. She is also a sessional Assistant Professor in the Faculty of Humanities and Social Sciences at Memorial University. Her research interests include: access to health care for marginalized populations, infectious disease transmissibility in institutions, mental health and addictions, the use of segregation in acute care settings, correctional health care, and correlations between diagnosis and mental health. Dr. Whitten values patient-centered research while encompassing the ideologies of lived experience. She has a vast background in both qualitative and quantitative research  methodologies and values collaborative research which aims to improve patient outcomes and increase healthcare sustainability.

Creating the Public Interest Group on Cancer Research (2021)

We formed this group in 2021.

We gratefully acknowledge funding by The Office of Public Engagement – Quick Start Fund that made this partnership possible! We also thank NLSUPPORT for supporting us.

The Public Interest Group on Cancer Research is a meaningful partnership between scientists at Memorial University and a diverse group of members of the public (including cancer patients, families, healthcare providers, and policy makers) in order to bring an impactful and positive change to the lives of individuals affected by cancer.

You can check these links for further information about Why and How we formed this diverse and inclusive group: