Brain Cancer 2020 Summit
The online Brain Cancer 2020 Summit attracted 80 active participants and 35 observers. Divided into two two-hour Zoom sessions held one week apart, attendees heard from the VTS steering committee chair, the Department of Health and Human Services (DHHS), and the consumer panel. Chair Paul Mitchell spoke on the importance of consumer input into improving care and putting ideas from the Summit into practice by collaboration between clinicians, the Integrated Cancer Services and the Department.
Ms Kathryn Whitfield, Director of Cancer and Aged Care - Commissioning, DHHS, drew attention to the new Victorian cancer plan 2020–2024. Considered a key reform asset of the plan, optimal care pathways (OCPs) have been embedded in its body of work. Summits contribute to the plan's reform agenda by benchmarking statewide cancer care against the OCPs. Summit ideas for ongoing work should be ones that make a meaningful difference, and which can be monitored and measured.
Summit working party co-chairs Professors Andrew Danks and Hui Gan presented the data presentation. Professor Andrew Danks presents part one from the first Zoom session. Professor Hui Gan presents part two from the second Zoom session.
Part two begins at 29:11
Click here for the data presentation PDF
6 July 2020
Consumer perspective: Brain cancer
I consider myself very lucky at this point in my life, as well as when I was first diagnosed with my low-grade oligoastrocytoma. Sounds a bit strange, I know. I figured I had had a great start to life and family upbringing, had made it to my late 30s, travelled and worked hard. It is fair to say I have met most of my goals in life and I am very thankful for that.
In mid-2007, a CT scan was taken due to headaches. I was out the door and on my way back to work when a staff member chased me down as I left the hospital. Suffice to say, it wasn’t an easy pill to swallow. Whilst I don’t recall the exact date, the whole process of discovery sits in my mind like it was yesterday.
Following the scan was an initial biopsy, a couple of resulting seizures, ongoing scans and follow-up consultations. In more recent times there has been an awake craniotomy, medicines that test mind and body, periods of no driving, work restrictions, relationship pressures and financial strains.
I have learned to not be too concerned with what lies ahead...it is what it is. Now I remain focused on the here and now. I stay true to myself, family & friends. I savour the little things in life; a couple of dogs fill this void really well...for me! I’ve been fortunate to have gravitated into a career that is a passion and am so glad that through all this medical stuff, I still remember how to use a camera. Initially I struggled, as modern cameras have many controls. Luckily I work with the old manual method.
Through my photography of scenic landscapes, my thoughts at the time are shared with those that can’t be with me as I capture images, experience the cold or the warm water, wonderful sunrises, sunsets, our Milky Way and some amazing animals.I find photography a fantastic release from what real life consists of. I have the chance to exit, for a moment, the reality of what lies ahead, to sit under the stars on a cool night and think just how complex we humans are. I find it very grounding.
So, to everyone out there, set goals to do something that pushes the boundary. You’ve done it before, you can do it again. It could be painting, drawing, photography, music. It doesn’t matter, whatever makes you feel good.
We are always going to have that extra challenge in life. For myself, I try to accept them and move on. Don’t get me wrong, the battle is real and very challenging some days. I used to be able to cope with a full day’s work and much more in my younger days. With age and the tumour situation, working for five hours with people drains me to the point where on the second day after photographing an event I still feel exhausted, despite enjoying the job at the time.
I’d like to thank all the nursing staff for encouraging and supporting me, and I’m sure, many others, as we face our challenges head on - Pardon the pun!
This article is based on the author's notes for a talk given at Cabrini Health in 2019. Notes have been edited for clarity.
Matthew's local and Australian photography:
Artist's notes: This Great Ocean Road seascape was taken at approximately 10pm on about a 20-second exposure. The 'dawn' on the left is likely light pollution from Geelong.
Artist's notes: Crocodile photographed at Hartley’s Crocodile Adventures. On a job for the Cairns Indigenous Art Fair, days off were spent on recreational photography trips with friends.
Artist's notes: A blood moon image from high in the sky just outside of inner Melbourne in Brunswick. It is a series of photographs taken at 15-minute intervals and put together in post production.
Artist's notes: The tawny frogmouth mother kept a watchful eye on the observer. Photographed round the corner from home in the aptly named Malvern Urban Forest, where there is an abundance of wildlife photography opportunities.
Photographs reproduced with the artist's permission.
4 August 2020
Consumer perspective: Brain cancer
Margaret was diagnosed in 2007 with breast cancer. In 2017, she was diagnosed with an unrelated brain tumour.
Probably a lot of people have had more than one cancer diagnosis but I might be a bit different. When they found the brain tumour, it took them a long time to biopsy and remove [it]. So, I was different from people who suddenly get very severe symptoms—people who go to [the ER] and the brain tumour comes out of nowhere.
The thing about triple negative [breast cancer] is it’s very bad at the start but if you get to seven years it doesn’t tend to come back. I was coming to that stage and feeling like I’d got through it all and then I got sinusitis and tinitus.
I went and saw a GP, who was a little dismissive. They said to see an ENT to make sure and in the three months between [referral to appointment] I could tell something wasn’t right. I’d go into a room in a public building and couldn’t find my way out. I was sure the breast cancer had come back to my brain.
I had an MRI at Christmas and they sent the scans home with me. I pulled them out and saw a large tumour there. The ENT was away for the holidays and hadn’t looked at the result. Fortunately, the GP rang me and asked if I knew any oncologists, which I did. I spoke to my breast surgeon on their first day back in January. That’s when I found out it was a brain tumour and not breast cancer. They made an appointment for me to see a brain surgeon.
But having [a long time till diagnosis before] I wanted something done quickly. The surgeon didn’t want to go ahead—they wanted to watch it for a few months. They didn’t seem to understand the situation I was in and [that I didn’t want to tell my adult children]. The best thing that happened was the surgeon said I could get a second opinion. [That was] wonderful. [The next surgeon] said they could remove it if I liked. So, within a month something was done.
I’ve been pretty good—I don’t have fits, I just lose concentration and what I’m saying, and I’m tired. Nobody explained to me when I was first getting diagnosed that with a brain tumour you don’t normally survive. Because of this, at first I’d been thinking I could do something about it. That’s probably why the first surgeon said [not to] do anything unless you have to. They don’t want you worrying about dying. But I needed the facts put in front of me so I could understand it. The worst thing for me was having to tell my children I had another cancer. I didn’t tell them until I saw the second surgeon.
With the first cancer you’re telling everybody and everybody is supporting you. With the second one, you're thinking, ‘I don’t want them to have to go through this again’. It was a difficult 12-month journey before I had the surgery [to remove the tumour].
Knowing the brain cancer protocols helped because you always feel awful going to another doctor, like you’re acknowledging the first one is no good. Being told it was ok to get a second opinion [was great]. The MRI scans being sent home with me was a terrible idea and I don’t know why they did it. There was no explanation at times of what was going on. When I saw the surgeon and radiologist the first time, the surgeon just walked out the room. I said to the radiologist, ‘What about the biopsy?’ They went out the room to ask the surgeon and came back in, ‘Oh, you’re not having one’. There was no explanation.
The best thing [would be] having someone who coordinates, who you can call and literature to take home. You don’t want to have to go to the ER.
You need to know brain cancer is terminal. I don’t think it helps people to pretend. You can say, ‘People live a long time’, but it needs to be known it’s terminal. I didn’t even know it was terminal until I looked it up on the web. It just hit me in the chest. I’d had several appointments over a year before I found out online it was terminal.
Maybe some people don’t want to know, but I think [clinicians involved in brain cancer care] need to find that out before they make the decision for you. The good oncologists are very upfront; if you ask them a question they will tell you an answer.
One oncologist picked up that I wasn’t coping and sent me to a neuropsychologist. The awareness of some doctors compared to others is amazing. They understand where you are at. At first the thing hanging over you is, ‘How long do I have?’ I see it with new people to the brain cancer support group. It takes a while to get through that. It’s always better if the doctors are up front.
In support group I’ve heard stories. One person, a curtain opens and the staff member says, ‘Oh, are you the guy with the brain tumour?’ That’s how they found out. Another went into surgery without knowing they had brain cancer. Someone needs to tell you straight up, but with some sort of process worked out. Because otherwise patients look it up on the internet.
Without someone picking up I needed psychological support, and without the brain cancer support group, I would have had no support.
I understand the difficulties staff face. But my feedback is if you don’t have time, have someone who does. Someone who can listen and is interested. I keep coming back to some sort of coordinator. You want a surgeon to think they are God and they can [operate and] do the right things, so it doesn’t have to be them, but you need someone who knows what’s going on with you and how you are feeling, who you can ask questions. You need someone who the surgeons can call on to be the person who explains things. Something similar to breast cancer coordinators. Because otherwise you end up calling the pharmacist to ask them. There isn’t that one person [contact in brain cancer] who understands where you are at.