Program: Survivors teaching students about cancer

Olivia Willis: Every day in Australia, 19 women are diagnosed with a gynaecological cancer, and for many the path to diagnosis and treatment can be challenging and often riddled with delays. There's a national initiative that is trying to improve awareness and understanding of these cancers amongst Australia's future doctors and nurses, and to do that it's harnessing the lived experience of cancer patients and their families. The program is called Survivors Teaching Students. It's being led by the Australian and New Zealand Gynaecological Oncology Group. And to learn more about it I spoke with Alison Evans, CEO of ANZGOG, and Kristin Young, a Survivors Teaching Students volunteer who is living with ovarian cancer, and she begins this conversation.

Kristin Young: So I was diagnosed with ovarian cancer in 2009. It's like a lot of women who have ovarian cancer, it's difficult to pick up, and it's often thought to be other things before we finally figure out that it is ovarian cancer, and that was certainly what happened to me. I went into remission after my first treatment. And as is really common with advanced ovarian cancer, I had a recurrence after four and a half years. There are lots of challenges in dealing with a diagnosis of a poor prognosis cancer, but for me personally, one of the biggest challenges was navigating the medical system. I trained as a psychologist, and I've been involved in training health professionals, other psychologists, for some time. I'm now retired due to my cancer, but all of these factors came together when I read an ANZGOG newsletter. They said that they were bringing to Australia a program called Survivors Teaching Students, and I said I want to be part of that. 

Olivia Willis: I do want to come back and ask you some more questions about the program itself. But Alison, I want to first ask you a bit about gynaecological cancers broadly in Australia. I think it's fairly well recognised that in the community they're pretty poorly understood, despite being the third most common cancer that affects women. Why do you think that is?

Alison Evans: I think for a number of reasons. There's a stigma about it because they are part of the reproductive system and therefore they're hidden, and they're very personal, particularly in a number of populations. If we look at gynaecological cancer, there are actually five of them; there is ovarian cancer, there's uterine which has endometrial cancer as a subset, there is cervical cancer, vulva and vagina cancer, and a couple of pregnancy related cancers. There's only one test for any of these cancers, it's a screening test for cervical cancer. These cancers are hard to detect, as Kristin said, you know, you might have bloat, you might have a pain in the back, you might have pelvic pain, you might bleed a little bit or spot, and you just might feel generally unwell. So a doctor, when they see a lot of patients, they're going to think of a lot of other different things that it could be. 

The other thing about these cancers is that 55% of gynaecological cancers are rare, less common, or low survival. So when women are diagnosed with them, you can feel very alone, and you can't find other people with the same cancer you have. We have many, many GPs across Australia, and many of them may never see a gynaecological cancer patient in their career. Therefore, a program like Survivors Teaching Students is vital because it's really giving voice to this is what symptoms are, this is what diagnosis looks like, and this is what treatment looks like from a patient's perspective, to doctors and nurses in training.

Olivia Willis: So this is something that was first established in the United States, and then has since expanded. Alison, can you tell me about why you decided to bring it to Australia and what it's looked like in the last few years?

Alison Evans: Yes, we have a wonderful woman who had lived for a time in the US and had volunteered in the US program, and when she returned home to Australia with her family she asked was it possible to have the program in Australia. For our organisation, even though we are a research organisation, we have always had a view that amplifying women's voices is a critical part of our role within the community. So to us, this gave women who have been touched by the disease an opportunity to come forward, add their voice, and to educate doctors and nurses in training. To give a broad voice to women when doctors were in training was a way of enlightening them and inspiring them to consider this potentially as a career pathway, to reach them at a time when they were in discovery mode in their career development and in their learning, and to be able to leave a lasting legacy through the voices of the women.

Olivia Willis: And Kristin, what does a typical program session look like with students?

Kristin Young: So we have about an hour or an hour and a half face-to-face and in a hybrid or purely online format, but we will have three presenters. All those people could be a woman who has a personal, lived experience of ovarian cancer, or it can be someone who's a carer or a family member. The three presenters will tell their story in a short way, and we tell it in such a way that delivers the key messages of STS, which is that patients have lives and are people over and above being patients. We are real people with lives and families, and we want the doctors of the future and the nurses of the future to see that. 

The next thing is patients remember what doctors and nurses say, and that sometimes can be engraved in your mind forever. And the final thing is the complexity of diagnosing and managing these diseases. And then the most important part, from my point of view, is the questions from the students. And you can see that the students have just really appreciated seeing real human beings talking about their lived experience. 

Olivia Willis: I was just going to ask, I wonder if you could tell me a little bit about what some of the reactions are from students that you've worked with.

Kristin Young: You can see that there are some students, perhaps even many students, who are really touched at an emotional level by what they've heard, and really perhaps starting to think that they would, as Alison said, consider a career in oncology or in oncology-based research. I think just the main thing is the putting of a human face on the cancer experience.

Olivia Willis: You mentioned there one of the key things being that patients remember what doctors say, for better or for worse. What do you emphasise about what good health communication and compassionate care looks like?

Alison Evans: I think the first thing is listening and hearing, because they're two different things. You know, we ask women to know their body and to advocate for their body for gynaecological cancer, because women are very inclined to back down and walk away and to be told, oh, you're okay, this is just a urinary tract infection or it's that time of the month. And it's very important that women speak up and advocate and say, 'No, no, no, I can't step away from this, because this is not going away,' and it is vital that they have a voice on the other side. It is vital that they are listened to and that the doctors hear that these women are saying to them that 'I've assessed myself, with thought, and this is not going away', and therefore they take additional steps. 

Olivia Willis: One of the things the program aims to do is highlight the importance of research and clinical trials to develop new treatments and improve outcomes. Is the goal of that to inspire the next generation of doctors and nurses and medical scientists to really focus on maybe a career in gynaecological cancers?

Alison Evans: That is part of our goal. Research is the only way we're going to change these cancers for women. But just as importantly we want doctors to be curious about these diseases for the rest of their career, that they have a voice in their head that is the woman's voice or the carer's voice that they take with them. We're in 22 universities now. We started off with just two. Since 2017 our wonderful women and their carers have spoken to 20,000 students.

Olivia Willis: Just lastly, Kristin, the Survivors Teach Students program obviously has huge potential benefits for students and is of value to them, but I wonder what it means to you and what you get out of it.

Kristin Young: For me it's the creation of a community and the sharing of knowledge which gives women and their families more confidence to interact with the medical system. At the very personal level, I have made good friends, I have what I feel are lifelong friends, and the term 'lifelong' is ironic in ovarian cancer because many of the women I have met unfortunately have not had long lives. My contacts list and my phone is full of people who've passed away, but I never delete them. I am lucky, the prognosis that I had which was very poor, I have now outlived this, and I know that that represents hope, perhaps not for every woman, but at least the women can look at someone like me and say research is doing something real, research is prolonging lives in some people, and with more research it'll prolong more lives. So I think the education and the empowering is happening in two directions; yes, the students, but to me it's so much more about strengthening the community of people living with gynaecological cancers.

Olivia Willis: That was Kristin Young from the Survivors Teaching Students program, and Alison Evans, CEO of the Australian and New Zealand Gynaecological Oncology Group.

Preeya Alexander: I have to say, Liv, I often learn the most interesting and key pieces about life and medicine from my patients. So you can't get everything from textbooks or lectures or research papers, absolutely you learn I think more of the nuance from patients. So, I'm not surprised.