It’s hard to believe that it’s been two weeks since I had brain surgery. That is something I never thought I would ever say. I still can’t quite get my head around that I had brain surgery.
I really don’t feel any different to how I felt before the surgery, which seems unbelievable because my head was cut open and someone played around with my brain. And I wouldn’t even know it now.
My head is healing beautifully. I’ve had so little pain that it has made it easy to forget I even had surgery. The initial pathology report confirmed that the cystic lesion on my brain was still active when it was operated on so I am glad that I had the surgery to relieve the pressure it was putting on my brain, that would have continued to build up and become very dangerous. My neurosurgeon got as much of the lesion out as he could without risking harm to my brain. I think that’s why I feel the same now.
Unfortunately, it hasn’t cured my cross-eyed double vision, nor my numb chin. My neurosurgeon’s assessment was that there might be something else going on in my brain causing these problems. This week I’ve also had some dizziness, like I’m on a boat when standing or walking, and like I’m going to be spun off into the universe when I’m sitting or lying down. A little bit like being drunk without the fun of drinking! Fortunately, it has not made me nauseous at all. I have also had some pins and needles in my hands, but this can go away if I start to flex my fingers. These symptoms might be from brain swelling from the recent surgery, from existing brain lesions or new brain lesions.
I had an MRI earlier this week and got the results on Thursday from my radiation oncologist. I had hoped that it might just be one of the existing three lesions that we found in June putting pressure on an area or post surgery brain swelling causing the eye and chin problems.
But I have at least six new lesions in my brain, with the potential for more to appear very soon because they are currently in the microscopic stage. The largest one is about 1cm wide and in my brain stem, and possibly cystic like the one I had surgery on two weeks ago. This lesion might be the cause of the eye problems and facial numbness. Both of these problems may be permanent or may improve with treatment. We will have to wait and see.
That brings me to the treatment options. I was offered whole brain radiotherapy (WBRT) or more stereotactic radiotherapy (SRT) or radio surgery (SRS). Each option has its pros and cons and even my radiation oncologist’s colleagues had differing opinions about which approach to go with.
Ultimately, the decision came down to me to make and I made it pretty quickly, right there and then in the doctor’s office. As much as I have wanted to avoid having whole brain radiotherapy, I think it is the most sensible option given that it looks like there is a lot of microscopic disease that could develop in the future. I think the whole brain radiotherapy has the best chance of stemming the tide of more lesions invading my brain. Given how quickly six new lesions have appeared since my last MRI in mid-June, I think there is an urgency to see if we can control and stabilise these lesions. It may or may not work, but I have to give it a try. My radiation oncologist will also look at doing some further targeting, a boost, on a couple of the larger ones if she can, towards the end of my whole brain radiotherapy.
I am concerned about having whole brain radiotherapy and its potential to cause neurological problems like memory loss and problems with thinking. I think I’m pretty scarred from my recent hospital stay sharing a ward with a couple of older people with short-term memory problems. With great clarity they could recollect their wedding day in 1951, but were unable to recall that they just spoke to their wife or daughter 10 minutes ago. I do not want to be like that. The good news is that the younger you are, the less likely you are to be affected like this. But there are no guarantees. I feel similarly to how I did before my brain surgery, fearful that this treatment is going to change how my brain works, and therefore who I am. I have a sense of urgency to write as much as I can now of my story while I remember everything, in case I lose it. I also don’t know how well I will be able to carry on with this blog if the treatment does damage my brain.
The debate around whole brain vs stereotactic radiotherapy is whether the benefits outweigh the side effects. Do you get a better quality of life and a longer life from the other or does it really make no difference with survival rates about the same length of time? I am telling myself that I am young and strong with a sharp mind so if it dulls a little, hopefully it will still be ok for me to continue on as I have.
So I will begin whole brain radiotherapy on Monday. I will have one session a day for 10 days over a two-week period. And we will see what that brings, how I cope with the side effects, and cross our fingers that it is effective on all of the lesions currently there and stops new ones from appearing.
It might seem that I am writing quite dispassionately about this and that is true. I am still processing how I feel about this and I know this kind of news is upsetting for family and friends. It’s never good when you see your doctor and the first words out of their mouth are ‘I’m so sorry.’ I know that this kind of disease progression in the brain is bad and associated with much poorer survival rates, particularly for those people who have triple negative breast cancer (3-4 months median survival) like I do. Having uncontrolled extracranial disease also contributes to lower survival rates. It is true that the disease in my lungs and liver is uncontrolled at the moment as we still haven’t been able to stop the tumours growing, but at the same time they are not yet causing any physical problems for me, which I feel is in my favour. I also read about this thing called the Karnofsky Performance Status (yes, I was Dr Googling, the very thing I was warning you about a few days ago), which shows survival outcomes are better in patients with a score of 70 or above on the scale. On this scale, I would give myself at least an 80: Normal activity with effort; some signs of symptoms or disease. A score of 0 on the scale is: Dead. I kid you not.
It is not the news I wanted to hear but I now know what we are dealing with and I have a plan in place for treatment, which is better than not knowing what is happening and wondering about what will happen next. In terms of prognosis, it’s not great for me, but it doesn’t mean I can’t overcome it. I’m not ready to give up yet. Life is too short to skip dessert, having fun and doing what you love.