This is not the first time I’ve considered brain surgery. In fact, it’s not the first time this year!
The first lesion in my brain was discovered in February when I returned to Queensland and my new medical oncologist sent me for a CT scan of my head, chest and abdomen as part of a screening process for a clinical trial.
I hadn’t even met my new medical oncologist yet, but the CT scan was the first step that was set up for me so she would have some baseline results of all my various tumours so we could then begin working on a new plan for me.
I remember sitting in the waiting room at the medical imaging centre at the hospital and noticing that my head was going to be scanned. All my previous scans in Sydney had just been of my chest and abdomen. I thought to myself, ‘Oh, I hope they don’t find anything in my brain.’
In the two weeks leading up to the scan, I had developed two patches of numbness in my legs. You can get numbness (peripheral neuropathy) from chemotherapy treatment, but it usually starts in your extremities like your fingers or toes. I didn’t have numbness there – just one patch on my left calf muscle and a patch on my inner right thigh. I had planned to mention it to my medical oncologist when I met with her for the first time.
At my first meeting with my Brisbane medical oncologist, she had to break the news to me that the breast cancer had spread to my brain. The CT scan showed one small lesion on the left side of my brain (which explained the numbness in my right thigh, but not the left calf) and there was a possibility I also had Leptomeningeal Metastases in my brain and spine. Fortunately, a subsequent MRI ruled out the Leptomeningeal Metastases.
I met with a radiation oncologist and a neurosurgeon to discuss the best course of action on the lesion in my brain. The neurosurgeon’s advice was to leave it and treat it with stereotactic radiotherapy. If that didn’t work or my symptoms worsened, then we should consider surgery. He was concerned that the location of the lesion in the ‘motor strip’ of my brain was quite a sensitive area. As I had barely any symptoms, surgery could make it much worse and I could lose mobility in my right arm or leg following surgery. At the time, all I had was those couple of patches of numbness and a slight weakness in my right arm that I could barely notice. The only time I noticed the weakness was when I went to the gym and I was lifting some weights with my arms. If I lifted a bar with both hands, I was fine. If I lifted individual dumbbells, I could definitely notice that it was far more difficult to lift up my right arm.
I was happy to avoid having brain surgery. I had stereotactic radiotherapy on the spot on my brain in March. It was 10 sessions over about two weeks where I would go to the hospital every day and have lasers of radiation pointed at my brain for about 10-15 minutes at a time as I lay immobilised on a machine.
As part of the planning process for radiotherapy on your brain, you get fitted for a mask that goes all the way over your head. A soft mesh is placed over your face and moulded exactly to it and it gradually hardens so you are left with a hard plastic frame shaped to your head. The mask is split in two pieces – a back piece that cradles your head and is lying on the machine, locked into it when you come in for your daily appointment, and a front piece that is placed over your face and screwed into the back part to hold your head perfectly still for the treatment. It is very tight and you can’t move. You get asked a lot in the planning phase and in the first sessions if you get claustrophobic and need a sedative to relax you. Fortunately, I have never suffered from claustrophobia, but I can definitely understand how awful it would be for someone who does. I’m not sure a sedative would do much to make a claustrophobic person feel better. This is a selfie I took of me in my mask after I brought it home from hospital. It’s not locked in together and that’s my comfy pillow underneath my head – not quite the same as how I looked during treatment but you get a general idea of the attractiveness of the mask.
Once you’re locked in to the mask, another plastic shell is locked in over that, just to secure you that little bit more. The technicians also move your body around on the machine to get your body lined up in the centre of the laser beam. It’s important not to help by moving or shuffling around while they are doing this unless they specifically ask you to scooch over a little to the left or right. Often, the adjustments they are making are just moving you a few millimetres to get you exactly lined up. The technicians will also use tape to hold you exactly in position. They love their tape. So your torso will quite often be criss-crossed with tape holding you down against the machine. I usually had to at least get my breasts taped down so they were held out of the way of the laser beams.
You’re left alone in the room during the treatment. The technicians are in another room where they watch you on a screen and control the machine as it begins to circulate around you to get the best angles to beam the radiation into your brain. They also do scans during the treatment to make sure they are hitting the right part of your brain and everything is lined up correctly. It’s a very precise and delicate operation. And that’s what I want if someone is fiddling around with my brain.
The stereotactic radiotherapy I had on the lesion in my brain successfully reduced it by almost half its size. It went from about 14mm to 8mm, which was really good as my radiation oncologist said she would just be happy if it stopped growing. The numb patches in my legs went away and I haven’t had them since. No one can really explain why it also worked on the numbness in my left calf, other than to say the brain is a complex organ and we don’t really know how it works.
I didn’t get a lot of side effects from the treatment like headaches or a lot of fatigue. I did lose mobility in my right arm very soon after starting my treatment, which was a little worrisome. I had only had two sessions when I discovered that I was having difficulty holding a pen to write and sign my name on some documents. I went to my third session and by that night I couldn’t hold a knife properly to cut my food, trying to text was slow and clumsy because I kept missing the letter I was aiming for, and picking up a glass in my right hand felt like the heaviest thing in the world. It was scary how quickly I went from being able to do anything I wanted to not being able to use my arm.
After the weekend, I contacted my radiation oncologist to tell her about the loss of mobility. She told me to increase my steroid dosage because some initial brain swelling from the treatment was probably causing it. And the steroids did the trick. After a few days on a higher dosage, my arm was practically back to normal and I could do everything I wanted to do again.
Soon afterwards, it felt like it had never happened. I had to wait about six weeks after I finished the radiotherapy treatment to have the MRI to see if the treatment had worked. It felt like it had because the symptoms had all gone away. It was really exciting when I was told that the stereotactic radiotherapy had actually reduced the tumour and it had stopped growing. This was a first for me because every previous CT scan of my chest and abdomen always showed growth or new tumours. Chemotherapy wasn’t doing much for me, but the stereotactic radiotherapy had kicked this brain lesion to the kerb!