Hello all. I've just made the decision to go for Prophylactic Intracranial RT, after a lot of research and soul searching. One of the first things I wanted to know was about other's experiences of it - and I found that nobody has written anything about it (that I can find anyhow) on this site - nor anywhere else, for that matter.
Let's abbreviate the long title to PICRT, since I really can't keep typing the whole lot - and you won't want to keep reading it.....
PICRT is offered as an option to people who have been fortunate, like myself, to get an early diagnosis of SCLC (small cell lung cancer) and who therefore don't have secondaries or much spread locally. It's offered because the risks of later developing secondary brain tumours are halved by having it.
The reasons that I've done a lot of soul searching and researching before making the decision to have it are that I found that there are reported side effects - memory gaps and loss, 10% loss of general intellect, intracranial headaches (of which I have some awful early life experiences after breaking my neck as a teen). The reason I needed to read the research is that I'm a specialist neurology nurse - I know the very real risks associated with 'messing with people's heads' in general. I read research before I do anything as mild as prescribing pills for my patients - how much more research would I not do to make sure I was making the right decision for myself? I also have access to the research, which others wouldn't. It was hard enough for me to find.
So the point at which we're meeting today is that of my having read myself stupid and found that this is a controversial therapy. Oncology colleagues and friends all have strong opinions - negative and positive almost equally - and this includes radiotherapists, specialist chemo nurses and so on.
In my opinion, not to make this clear is not to give you a fair way to judge things for yourself. OK, some people just want to be told 'go for it' and they will. They'll not be the people reading this blog, so I won't, I don't think, be disturbing their peace of mind. But the info that's generally available SHOULD say that this is not universally a popular therapy, since it isn't. It should advise further discussion with your consultant at least so that you have their considered opinion to rely on, even if you're a person who likes few facts to be given.
In the end, I've decided that I really do trust my oncologist - we've had a long discussion about the research I've read and she's told me that early research was flawed, since it compared people who were in normal health with people who had undergone PICRT. That, she pointed out (and rightly, I'd say) is not what should have been done. What should have been done was to compare people who had SCLC who didn't have the PICRT with those who did. When they did this, they found that the 10% cognitive decline was somehow linked to the SCLC, not the PICRT. She doesn't have many patients who have memory problems and she doesn't have many patients to have intracranial headaches, she says. But people who have PICRT are 50% less likely to develop secondary brain tumours than those who don't have it. People with SCLC who live 10 years are always those who have had PICRT, she says.
I'm tempted, here, to make an awful joke about PICRT being a no brainer!
I won't though...............
I felt I had to make sure that my husband and daughter, who'll be the ones to have to care for me in the event of my coming out of this treatment badly, agreed that I should have it. My daughter, Daisy - she's 20, by the way - her voice saying 'PLEASE have it, PLEASE Mum' will stay with me all the way through - and probably for the rest of my life too. David, my hubby is frankly a bit too worn out by all that's happened thus far to have the energy to enter in to all my debatings. He's an artist, a musician (well, we're all musicians) - he'll support whatever I do,as he always has, with great love, with great care - but the decision is mine to make.
I'm going to have it.
I'm very scared. I'm not scared about the science fiction-ness of some of what happens - of having a face mask made, or a head frame. I'm just scared in case I won't be quite so me when it's all done. That the 'nos' amongst my colleagues will turn out to be the right ones and the 'yesses' wrong.
There's always a middle ground I suppose...... a sort of yes-no scenario where my health will be worse but I'll live longer. And that's another thing that's given me a lot of pause for thought....... quantity of life over quality, or the reverse? Well, I'd go for quality every time - but then, I may get both.
What I DO know is that someone needs to write about their experience of PICRT, so that everyone else can read it, so I've decided to volunteer for that - and this is the start, before anything starts. I don't yet know when things will get underway. I live on a remote Scottish island, so I shall have a lot of travelling back and forth to do - and timetabling RT for us Hebrideans gives the mainland hospitals a headache - we're dependant on flights or tides to get to appointments. My wait may not be yours - but then, my profound good fortune is to live in Scotland (I'm English by the way) where waiting times are less, in general than in England and Wales - which is so VERY important in the treatment of SCLC in the first place.
Any time anything occurs to me, or happens to me, from now on concerning PICRT, I'll write it in here, in the hope that it'll be of help to someone, sometime.
See you soon - Debbie
