He then said, “well, there was a trial investigating the management of this condition.” I didn’t know then but I quickly found that one in five women who are diagnosed with cancer have this wretched borderline condition of ductal carcinoma in situ. So it’s not an insignificant number. If they have 10,000 women with cancer a year, they’re going to have 2,000 who’ve got this peculiar thing. And furthermore, this isn’t one thing, it’s many things. It’s got sub-sections, some of which are more, how can I say? They’re going to be, cause you more trouble. Others, well if you hadn’t known about it, you’d have gone to your grave not knowing you had it and so they’re not going to cause you any problem at all. So there’s a huge range of possibilities with DCIS which, again, is not conveyed in the literature but which I found out in the 2 weeks that I was given to go away and think about whether I was going to say yes or no to the trial.
Again, when I went into overdrive to speak to medical friends I knew to say, “hey, what is this thing?” But the shock of feeling so ill-prepared to make a decision and realising at that moment that you couldn’t make a decision because, what had you got to make a decision on? Precious little. And then going away to find out what you could in the fortnight that you’d been given, to realise that then that there were all sorts of things you didn’t know, like, what about the particulars of your own case? You hadn’t been told those. I didn’t know how big it was, I didn’t know how big the margins were, which is very crucial in ductal carcinoma in situ. I have to confess I had to work out what a margin was because it’s not immediately apparent to you that they chop out a lump and where is the nasty bit in the middle of that lump? So margins are very significant. How big was it? Was I oestrogen receptor positive or negative?
The 4 choices in the trial and the trial was to look at the management of this condition to prevent recurrence, didn’t even look at survival. And I can assure you that if you’ve just been told you’ve got carcinoma, the thing that pops into your head quick as a flash is, oops [laughing] how long have I got, you know? So, it was purely to look at the management, purely to see what to do when you’ve got this condition. What did you ask me? I’ve forgotten.
What did they want to do?
What did they want to do? Ah yes, that’s right, and I’ve gone back to the trial because this is what they wanted to do. They wanted to say, “will you join the trial?” So, obviously if I’d said yes, it would have been the trial. If I’d said no, they would presumably have, I don’t know what? What do you do if you don’t know the management of something? I mean, again, huge conundrum. If they don’t know, and they’ve just told you they don’t know, what are they going to do if you say you don’t want to join the trial because it doesn’t make sense, really, does it?
So you’re in as much of a pickle whether you do join the trial or whether you don’t. And the trial options were' nothing further; a full course of tamoxifen, 5 years; a full course of radiotherapy or tamoxifen and radiotherapy. Now, that to me seemed a very bizarre choice. The first thing that flashed into my head, bearing in mind that at that time I was as ignorant as the rest of them, I thought, well do they know how serious this thing is or don’t they? I mean, if they’re offering me nothing further compared with the whole works, how serious is this? Do they know how serious it is?