14 minute read
Survivorship Unmuted
The term “cancer survivor” is used for anyone who has been diagnosed with cancer, but what is survivorship and life after treatment really like?
In July at ANZUP’s Annual Scientific Meeting, we held our Evening Symposium, ‘Survivorship Unmuted’ and heard from a panel of cancer survivors, about their experiences and how life looks for them now. This session was led by Associate Professor Ben Tran.
Meet the Chair
Associate Professor Ben Tran is an Associate Professor within the Sir Peter MacCallum Department of Oncology at The University of Melbourne. He is also a Medical Oncologist at Peter MacCallum Cancer Centre and holds a Clinician Scientist appointment at the Walter and Eliza Hall Institute.
His clinical focus lies entirely within the genitourinary (GU) tumour stream. Ben currently leads the GU clinical trials program at Peter MacCallum Cancer Centre and is Chair of the GU Tumour Group within Cancer Trials Australia, and Chair of the ANZUP Germ Cell Subcommittee.
Meet the Panel
Melissa Le Mesurier, originally trained as a journalist and has 25 years’ experience as a senior corporate affairs executive. Both professionally and personally, Melissa is passionate about medical research, consumer engagement and patient empowerment–something sparked when her (now adult) son was diagnosed with cystic fibrosis in 1996 and strengthened when she was diagnosed with bladder cancer in 2017.
Channel 9 news presenter Will McDonald was in shock the day he was given a life-changing prostate cancer diagnosis at only 42 years of age.
Ben: Melissa, tell me a bit about your cancer journey.
Melissa: I was diagnosed in late 2017 and it was a bit of a surprise. I had been having bowel issues and I saw a bowel surgeon and I casually mentioned that I’d also been having trouble passing urine and it had got progressively worse, but I had ignored it as I thought it could have been a urinary tract infection.
My husband and I had been on holidays in Cairns, and we were about to get on the Sky rail when I realised, I hadn’t passed urine for 12 hours. As the Sky Rail was about two hours, I thought “I don’t think I can get on this gondola thing. If I’m busting and I need to go, we’re in the sky with the trees. And I thought, right, when I get home, I’m seriously doing something about this”.
My bowel surgeon referred me to Professor Shomik Sengupta, a urologist, as I was not a typical bladder cancer patient. It mainly affects people over 65, and smokers. I didn’t really fit the standard stereotype. I had a cystoscopy, and it came back with small highgrade tumour which pretty much upended my life for about 12 months. I was put on the BCG + MM trial which was about nine months of treatment. I’m approaching the five-year mark now and feel like I should be touching wood.
Ben: In a nutshell; how did you find the whole process around being approached about a clinical trial and, and what went through your head?
Melissa: It was a quick decision. I have two children and my 25-year-old son has cystic fibrosis; he was diagnosed at four weeks old. From that day on, I was passionate about medical research, and we set up a trust foundation with the Royal Children’s Hospital. We raised money through sausage sizzles and helped to employ about 20 medical fellows for cystic fibrosis research.
I’d worked a little bit in health, and I consider myself quite health literate. My diagnosis didn’t spook me, and I read up about it and Shomik was very open about the clinical trial, that it may or may not help you. But in an altruistic way, I thought if it doesn’t help me, it may help somebody else.
Ben: A lot of my patients find that, during the treatment phase, it’s a lot of visits, a lot of consultations and then it’s done, and the consultations are very sparse, and they explain to me how things are very different and it’s sometimes adapting to that change is difficult. Did you find that difficult?
Melissa: Yeah, I think so. I think one of the beauties of the clinical trial, was that you felt you were being monitored a lot. And I like that. I like that there was somebody to ring. But yes, even now as I approach that magic five year, you think - what happens now?
I’m also on a few forums and I see patients that say it’s fabulous that you are cured, but you feel you are left in the wilderness a little bit. I know there’s a lot of resources you can access, but I also think its lacking for of the below the belt cancers, there’s not the breast cancer nurse support network.
Ben: How could we do better in that space? Do you think it’s just having that extra support, the nursing support, or is it more than that? Is it supporting you as appointments approach or is it better to kind of let you be?
Melissa: I think having access is a great support. I know there are patients that need a lot more love and reassurance, and I probably did, and I’d like to know that the door was always open. I do honestly feel that I could ring Shomik’s office or when I was on the trial, I’d ring the trial coordinator. In my opinion, I think the greatest contact is through ANZUP and meeting other patients and people, who’ve been in similar circumstances and happy to share their stories.
I feel I’m quite resourceful. I will pick up the phone if I need to, but I’ve seen the other side as well, where other people go through their own journeys and even my son where the receptionist can put you off. They’re too busy, they’re in surgery and can only get back to you in four weeks.
I know they sound minor, but all those interactions can influence whether you will, or won’t get involved. That would be my request from my specialist, that there were contact numbers, collateral, and an understanding of the clinical trial process, and who is involved.
Ben: I’m interested to hear about your experience on the ANZUP Consumer Advisory Panel (CAP). And have you been involved in other groups?
Melissa: Yes, through my son, I’ve sat on the Alfred Hospital’s Consumer Committee and I’m a Board Director at the Lung Foundation however I feel my involvement is very valued at ANZUP. The CAP plays a part from the beginning with the trials. From Idea Generation Workshops, to discussing the trial with principal investigators and reviewing important paperwork, seen through the eyes of a patient.
I think ANZUP really are top shelf in this respect and would urge anyone to get involved. Your views as a patient are respected and the other CAP members, along with the whole of ANZUP.
Ben: I’ve heard through the grapevine; you’re writing a book. I’d love to hear more about it.
Melissa: Just to backtrack a little bit, the main side effect I had from the trial was tiredness. I was also driving an hour and a half each way to a primary health job in Melbourne. I was just too tired to be honest. I had my son to care for, he was quite ill, and my husband had an acute mental illness during that period. So twice in that year, three of us were in hospital at the same time. I learned through my son’s experience with hospital, my work, and then the bladder cancer situation, that not everything is easy to find. There’s very little that’s curated and it’s hard for people to even know about clinical trials. And if they don’t have a clinician that provides their patient with resources, or information, it can be very confusing and scary.
I took six months off work to start writing this book, sorry for the long preamble, but it’s how I have got to this point. Like a Barefoot investor book for cancer and health literacy, you could even call it a dummies guide. Like if things go pear shaped, here’s the five questions to ask on the first visit. Here’s what to do at this stage, without all the medical jargon.
Ben: I think that’s so crucial. When I have family members who might be unwell, I say make sure you ask these questions, or this is what you need to do. It can be such a blur for patients and their families so your book sounds so valuable.
Melissa: I hope so. I’ll tell you when it’s out there. Questions about what the difference between the public system or the private system. What’s a resident, what’s a consultant. In research, it has been found 64% of people have the lowest form of health literacy and that’s English speaking. What does the indigenous person do with no internet access in rural areas.
Ben: Thanks Melissa, I’d now like to welcome Will McDonald. Will, we’d love to hear your story. Are you able to share with us how you are going?
Will: Absolutely. I have always been really fit and active. I remember the day clearly; it was the 1st June 2020 and the gyms reopened in Adelaide after our first COVID lockdown. I went for a workout and my left hip joint went click and just didn’t feel right.
Over time it started to get a little bit worse, no matter what I did, including rest, it got worse. I used to have this joke that I was kind of like a low-level superhero, like Wolverine, as I used to heal well. I never had injuries that would persist. I could always push through it. It’d get better quickly. This one didn’t get better, it just kept getting worse and worse.
Five weeks later I went skydiving and this is the bit where I always say skydiving saved my life because I did about four jumps on a Friday, and I didn’t do anything wrong. I didn’t land badly. I didn’t do anything. But my left hip joint was so painful, and I was limping, but adrenaline and you know, thinking you’re bulletproof, you keep doing stuff. On the drive home I had this stabbing pain, and I thought oh no, I’m injured. Something’s wrong here. A week later I managed to get an MRI, and that’s when the alarm bells went off. The GP told me there were white spots on the scan, that could be cancer.
Shortly after the visit to the GP, I had blood tests which showed my PSA was 38. We found the culprit. It was a bit of a whirlwind from this point. I was quickly referred to a specialist, who I could see straight away. The specialist looked at my scans and said, “Your hip joint’s no good. You’ve cracked the outer casing of the acetabulum. But that’s not your problem. Your prostate’s your problem. You’ll need to see a urology colleague of mine straight away”.
Straight away was the next day. The urologist looked at my scans, reviewed my blood work and sat me down and he said, “okay, we’ve got surgery list this afternoon. You’re on it”.
The biopsy revealed advanced aggressive prostate cancer with a Gleason score of nine.
The Gleason grading system is used to help evaluate the prognosis of people with prostate cancer using samples from a prostate biopsy. Together with other parameters, it is incorporated into a strategy of prostate cancer staging which predicts prognosis and helps guide therapy. Cancers with a higher Gleason score are more aggressive and have a worse prognosis. Pathological scores range from 2 to 10, with higher numbers indicating greater risks of recurrence or death.
I’m 44 and most people probably assumed that I’ve had kids, but I haven’t. So luckily, I mentioned to the specialist before I went on hormone therapy and visited the sperm bank.
I started hormone therapy straight away and my medical oncologist, who I was referred to, put me on six doses of chemotherapy. I said to them, turn the machine up to full blast and give me the maximum allowable human dosage. That was my method of what I was going to do to try and get through this was, do not leave any stone unturned.
During this time, I went to work every day, every time. I guess my attitude through that whole period was positive. My brain switched to the point of going no thanks cancer, you’re not going to ruin my life. That’s how I dealt with the treatment. Luckily after the six rounds of chemo, I had another PSMA PET scan, and everything had shrunk, and my PSA was dropping. However, the specialists decided to blitz me with radiotherapy.
I had 20 doses of external beam therapy. Now, my tough facade and positive attitude was tested during radiotherapy. It was the most difficult part of my treatment. Especially when out and about, you’re always looking for the bathroom in case you might wet yourself. Thankfully after the radiotherapy my PSA kept dropping. I think my last result was 0.1. It started at 38 and down to 0.1, and it’s never gone up. So that’s a good sign. My appointments are now every three months.
Ben: When you were going through treatment, it’s very intensive, a lot of visits and now it’s much less frequent. How have you adapted to that kind of shift?
Will: Yeah, it certainly is. I think I’ve adapted to it now. But there is that period when you get towards the end of the chemotherapy and radiotherapy treatments. A solid six months of seeing a doctor every three weeks, at least. And then at the end you walk out of it thinking, well, what do I do now? I’m not fighting anything, I guess. It’s that mental shift where you really must prepare yourself and, and come to terms with, accept this is life.
Ben: Is there anything the community or healthcare industry can do to help.
Will: I think partly it probably is what it is, but I probably come at it from a different point of view. I’ve been so lucky in terms of the networks that I have been able to establish quickly both personally but also during my cancer treatment, people from Cancer Council and Prostate Cancer Foundation of Australia. I think that idea of just having a number to call, to be able to talk to someone during that time is invaluable. You’re not bothering anyone when you call. That’s why they’re there.
Ben: Have you been one to seek out prostate cancer support groups? I know young people with prostate cancer find it very hard, as there are a lot of older people in the groups, to find those in similar situations.
Will: Yes, very few. I don’t think I’ve met anyone in Adelaide around my age with prostate cancer. I have had one guy in Tasmania who has approached me, who’s only a little bit older and in a very similar situation. And another fellow on the Gold Coast in a similar situation when he was diagnosed. We emailed back and forth. We talk about how to combat the side effects of the hormone therapy and some of the challenges going through treatment.
Ben: Do you find talking to people who have been through it before or going through it at the same time helpful?
Will: Absolutely. I guess when you’re first diagnosed with prostate cancer or any cancer, and I know I did, you feel overwhelmingly alone. Like there was just this sense that no one else had any idea what I was going through, and you were just alone. That’s probably why I didn’t tell anyone to start with, but then you open up, and talk to people, and you know, you’re not alone, there’s other people going through it. I found it helpful to talk to a huge range of people to be fair, people who have come from all different scenarios, and different cancers.
Ben: Learning from others, right?
Will: By learning from others, you learn lots of things. There’s a lovely lady that I met through Cancer Council, she was a palliative care nurse in her working life. She’d had breast cancer and then she was diagnosed with an unrelated stomach cancer, which really knocked her about. When I met her, she was going okay. She said there are five stages of fighting it, of grief and dealing with it. She said, just skip straight to acceptance. It’s easier. That was one of the greatest pieces of advice that I’ve ever had – was a terrific one.
