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.