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Transcript of visit by Neurosurgeon (NS) to Marg, Denis (husband) and Kitty (mother) on Tuesday 22 August 2000, to advise of the results of pathology tests on the tumour removed from Marg's brain on Thursday 17 August 2000 at the National Capital Private Hospital, Canberra, Australia.
NS: ... as I sort of said to you the other night at the discussion we had, that in terms of whether it was a primary or whether it was a secondary tumour.
NS: At the operation the frozen section they did suggested it was a tumour that came from the brain, along the lines of what is called a glioma. Now, there are varying grades of glioma from more benign to more aggressive forms. The fact that this had died, like we spoke about, and had haemorrhaging to it, certainly suggests that it was along the more aggressive sort of tumour ... so that the pathology which has come back confirms that's the case ...
Marg: So it's malignant, rather than benign, right?
NS: ... and, it's what's called a glioblastoma multiforme which, in the grading system of gliomas is, unfortunately, the most aggressive and the most malignant out of all of them.
Marg: A four?
NS: It's a grade 4 out of 4, or a 3 out of 3, whichever grading system you use and there are various ones around, some of which use 3, some of which use 4, but at the end of the day, the sort of tumour that you have is the worst out of any of those grading systems.
NS: It all means the same. The only difference with the grading systems is that with some of the less malignant ones there is some overlap. So, in some systems there's 4, whereas in other systems there's 3. So, it's the middle grade which sometimes is broken up into two different sorts in the four-tiered system.
NS: So that, unfortunately, in any of the systems this sort of tumour that you have is the worst out of all of those. Now, in terms of what we have been able to do surgically, I'm pretty happy with the sort of clearance that we were able to get. There is some that's still just attached to the blood vessels which come out of the fissure between the frontal lobe and the temporal lobe.
NS: This was growing in the temporal lobe and pushing up into the frontal part of the brain and pushing those blood vessels up with it and there is a very thin bit of it which is still attached to some of those blood vessels which, at the time of the operation, I did not deem was going to actually help you in any particular way, leaving a little bit, in terms of if we had tried to take it off, we may have caused problems with those major blood vessels which supply important parts of the brain.
NS: Now, it's always a bit of a compromise, in terms of what we do, as to [whether] we try to get everything out and get a margin around it.
NS: Or do we try to compromise and leave you as well as possible, leaving a little bit, but knowing that leaving that little bit doesn't, in fact, alter the overall prognosis.
Marg: Right, so what is the prognosis then?
NS: Well, that's a difficult thing to really talk about, in that, everyone is different.
NS: You could look up the Internet and go through books and find statistics which talk about "average life spans" and all the rest.
NS: But, at the end of the day, they're all curves and some people fall well short of the average and some people fall well and truly past the average.
NS: So that, given what it is, given that it is malignant, and given that it is the most aggressive form of glioma, your life expectancy is not going to be what you expected.
Marg: What would that be?
NS: In that you are not going to grow to be an old woman.
Marg: Like, not 100?
NS: Yes, that's right but in terms of ...
Marg: Is this 70?
NS: Well, in terms of ... that's why it's difficult to really talk about you, because the aim with you, is to keep you as well as possible, for as long as possible.
Marg: Right, yes.
NS: Now, statistically speaking, the odds aren't in your favour ...
NS: ... in that we're talking 'median survival times' in the order of months ...
NS: ... rather than years.
Marg: So, but, because the tumour was dying from inside, is that ...
NS: ... doesn't actually help you in the prognosis.
Denis: It indicates ...
NS: It actually indicates that it is more malignant, rather than actually indicating that that's going to help, in the long term. So, the fact that some of it had died, is part of a hallmark in terms of actually calling it a glioblastoma.
NS: That's the critical feature, in terms of grading, which we use. To call it a grade 4 or a grade 3 ... or a glioblastoma multiforme means, implies, that it has necrosis in it, which is the dead tissue. It also has some other things, as well, which pushes it into that group but that's one, that's the key. If it doesn't have necrosis, it isn't a glioblastoma.
NS: So, the fact that it has necrosis means that it is the more aggressive tumour.
Marg: Right, so is that why I was feeling that my eyes were being pushed out?
NS: The reason why you were feeling that was that the pressure had just become raised because of the changes that had occurred in the tumour.
NS: The necrosis, plus the bit of haemorrhage, meant that things got past a critical point and the pressure just got a lot worse than it was and that's why you felt that pressure sensation and why your headache was worse in the last few days, in the last week. But, it's all very well to talk about statistics but we don't know where you're going to fall in that curve and, you know, in my practice, I've certainly had people who have fallen well short of months and I've certainly got people who are still going well and truly past that time, we are talking two or three years. And other people certainly have people who have lasted a lot longer than that. So, that at the end of the day, everyone wants to know, well, what does this mean in terms of how long do I have. And, that's important in some ways to prepare for what will eventually come, but the important thing is trying to keep as positive as possible and keeping you as well as possible, for as long as we can.
Marg: And what do you think of the idea of a miracle?
NS: Umm, it would be nice to think ... thinking realistically, the chances are pretty small.
Marg: Right, so where do I go now, in terms of treatment?
NS: What we do now is ask one of the radio therapists to come and see you because we do know that giving radio therapy does improve the survival.
NS: Now, if you look at groups of people who are treated with an operation, as opposed to groups of people who are treated with nothing, as opposed to groups of people who are treated with an operation plus radiotherapy, we know that people treated in that group do, in fact, do better, so it is worthwhile having it as long as you're well enough.
NS: If you hadn't recovered from it all and you were left with weakness and things, then, giving you radio therapy is probably of no benefit to your overall quality of life.
NS: Given that you have come through it all, and you are as well as you are, certainly giving you radiotherapy is known to improve survival.
Marg: Right, so radio therapy, rather than chemotherapy?
NS: Chemotherapy, in these sorts of tumours, has a very limited role and it certainly isn't the first line of treatment because of the fact that there aren't, well, you get sick but the other thing is that there are no chemotherapeutic agents which, unfortunately, have been shown to have any really long-lasting effect, to actually improve survival.
NS: There are some newer trials around which are looking at things which might, but there is certainly nothing concrete at the moment, which says that if we give you this sort of chemotherapy we're going to double your survival. So that, at the moment, there's lots of things which are a bit experimental but none which are actually proven whereas, with radio therapy, we certainly know that does improve survival and the thing that we have to look at, in fact, is not just survival but quality of life in that survival. There's no point in being moribund a year or two whereas, if you didn't have that sort of treatment, you were well for six months, sort of thing, so that you've really got to look at the quality of life in terms of radio therapy is fairly well tolerated, it doesn't knock you around particularly.
Marg: So, I'll be able to do gardening, or go for a walk?
Denis: And does it matter, Doctor, where it'd done? Like, Kitty's from Melbourne and most of Marg's sisters and that are in Melbourne. We're from Canberra, of course. I gather that if you are going to have radio therapy you get on to it as soon as they're well.
NS: What we do, is usually leave it a few weeks, to allow the wound to actually heal.
NS: For the radio therapy affects the healing of the wound. If you are too early the wound would fall apart.
NS: So, that what we do is usually leave it a few weeks before you have the radiotherapy.
Marg: So, what would we be looking at?
NS: Well, that's when we get the radio therapist to actually come and speak to you to tell you what they think in terms of ... In terms of where to have it, it's something that's done on a daily basis, it's usually done for about 4 or 5 weeks, depending on how much they need to give to the area which is involved and they do planning and things which tells them how much they need to give you and then they divide that up into equal doses over a period of time and it usually works out to be over 4 to 5 weeks. It just depends sometimes, a bit shorter, sometimes a bit longer.
Marg: Like, every day for 4 or 5 weeks.
NS: Yes, it's five days a week. You come in, have it done, and go home.
Marg: And what about more MRIs and things like that?
NS: We do those things further down the track.
Marg: Ah, right.
NS: But we don't ... at the moment we've got a CT scan which we did the next day after the operation which gives us the best indication of what was potentially there. It certainly looked very good in that there was very minimal, if any, enhancement tumour in the reception site. Doing a scan now will only complicate the issue because there will be healing going on in the brain which shows up on the contrast. So, it doesn't actually tell us whether it is tumour or whether it's healing, or what. So, we don't do anything more in the way of scans at the moment and we wait until after you finish the radio therapy, that's usually a few months before you have another scan, unless something happens in the meantime and you're not as well as you are now. In that case we would do it earlier.
Denis: So, theoretically, she could have it done in Melbourne then?
NS: Theoretically, she could. It obviously depends on what's best with the family.
Denis: Like, during the process is it important, though, that she consult back with you, and you monitor ...
NS: You won't see me for another six weeks after you go home.
NS: The radio therapists will keep a closer eye on you because they're the ones that are actually giving you the treatment. You see me in about six weeks time.
NS: And, obviously, if there is some problem in the meantime that the radio therapists are concerned about, then you see me sooner.
NS: But if everything goes well and you're all right, then I see you in about six weeks time.
Marg: Right, now when do the stitches come out?
NS: They come out before you go. We did have you on some steroids for a little while beforehand so we leave you on them and we leave the staples in for a couple of extra days.
Denis: When do you see her leaving here?
NS: Well, have you been up and around a bit today yet?
Marg: Not too much, just mainly to the toilet and shower so, can I walk around?
NS: Yes, you can walk around, probably the weekend. In the next couple of days we'll get Dr T, who is one of the radio therapists, to come and see you. She's the one that does most of the radiation for these sorts of tumours.
Denis: So, she wouldn't commence radiation for a couple of weeks?
NS: Yes, maybe three weeks.
Denis: And then, when it does, it's 4 or 5 weeks straight?
Denis: Can she fly back and forth, say, between Canberra and Melbourne? The pressurisation won't affect anything?
Marg: Now, when you said about "months" is that like the end of the year or is it like, I mean ... I suppose you can't really talk in terms like that?
NS: It's fairly general and I leave it as fairly general because, as I say, some people fall a lot shorter than that and some people go a lot longer, you're talking years but ...
Marg: Someone told me I was only supposed to have survived the cardiac arrest for five years.
NS: There you go, so you proved them wrong there, so ...
Denis: When you said it haemorragheed, there was a haemorraghe in the brain?
NS: In the tumour.
Denis: Does that mean that the cells spilled out, spread a bit, or ...?
NS: No, what happens is that when the tissues die the little fragile blood vessels that are amongst it can sort of die as well and you leak blood. The vessels are very fragile in these sorts of tumours, they're not like the normal blood vessels, so it doesn't take much to actually upset them and the walls rupture and bleed.
Denis: Granted that it's kind of doubling in size rather quickly and all the rest of it, the bit that's left there ... is that to be monitored to see whether it's suddenly regrowing?
NS: That's why, unless there's a problem, we do the scan after the radio therapy.
NS: We don't monitor it otherwise because the monitoring of it just confuses the picture because we often don't know whether it's just the radio therapy or the healing, or is there recurrent tumour? So, if you remain okay, then the bets are that things are all right and that doing a scan is not going to change what we would do at that time. If it recurred so quickly within this sort of time frame we're talking about then - also that's not very good - but we wouldn't be rushing back into doing anything more about it. So, knowing what had happened to it doesn't really help us in these early ...
Denis: So, is there further surgery in the kind of equation somewhere?
NS: If, depending on your response to the surgery plus radio therapy, goes. If, say, next year sometime, you start to become unwell again and we did a scan and found that it had recurred, and it certainly is possible surgery would be useful. If, in the next few months, the same sort of thing happened, I'd suggest that surgery is not going to, in fact, improve your quality of life.
Marg: And what types of things improve the quality of life? Like, diet?
NS: No, well what we're saying is well, no, what we are basically saying is that, if your tumour regrows very quickly, then doing another operation is not going to make it any better for you ...
NS: ... in that the time it would then take you to really get over another operation is probably not going to be time that is going to be usefully spent, in that getting over this operation, you'll have some headache and things from time to time, you will feel a bit tired and worn out and that takes a few weeks, to a couple of months, to really go away.
NS: So, if this recurred in a couple of months time and then we did another operation, our odds, in terms of being able to give you any useful longer survival, is pretty small but in the meantime we're going to put you through a big operation again that's going to take you a couple of months to get over ...
Marg: Right, yes.
NS: ... so, that during those couple of months of your life you are not going to feel as well as you may have otherwise, with other medical sort of treatment. So, we can do things, like increasing the steroids to reduce swelling, if we get recurrent tumour.
NS: So, that's the sort of thing we're talking about in terms of quality of life. We don't want to keep putting you through operations if we're fighting a losing battle. And then if it recurs in a very short space of time and hasn't responded to the surgery and radio therapy, then we know that even if we do another operation, it is likely to, in fact, recur within that same space of time. So, that putting you through an operation every couple of months is not necessarily going to give you useful time.
Denis: So, three weeks before you start radio therapy and Dr T, is it, comes and sees, so, then five weeks or whatever, down there, and Marg sees you six weeks, maybe, down the track here? So, she's in the hands of the radio therapist basically? So, how does he monitor how she is responding to the doses?
NS: By doing the scan afterwards.
Denis: At the end of the thing?
NS: Yes, during the treatment the effects of radio therapy actually take some time to occur, it's not instantaneous and so there is no point in monitoring, in the way of scans, earlier on. It's not until we've given a time for the effects of radio therapy to actually work, that doing a scan is of any use. That's why we do leave it a couple of months or so before we do it. The only monitoring that is really done, is how you are and if, during that time, you become unwell then we do a scan to see why. If you remain well, then doing a scan is not going to help us in terms of monitoring the effects of the treatment, early on.
Marg: And would I be having blood tests to make sure that everything ... like, with the Dilantin, originally ...
NS: Yes, we just keep an eye on the Dilantin, the blood tests are done. Hopefully, that will all be sorted out and you'll end up on a dose which is the right dose for you.
NS: And then once that happens then we don't do the blood tests so frequently.
Marg: Right, so if I'm on the right dose I won't be having more fits or anything like that?
NS: Not necessarily. That's the problem. The medication certainly reduces fits and given that you had fits, you need to continue it. It doesn't mean that you won't have another fit. It certainly reduces the incidence of having seizures but it doesn't mean that it's zero
Denis: So, if she has one at home while she's recuperating, put her into hospital, or what?
NS: Well, if it's only short-lived and she comes through it all right, well, then maybe manage it at home. If you have any concern about it then she needs to come into hospital.
NS: If it's only short-lived and you come through it and everyone is happy with you ... if there's any concern ... If it continues, she goes on for a period of minutes, or so, then you need to ring an ambulance.
Marg: The last time I went into hospital I didn't have a fit, I just had a kind of a pre-aura. In a scale of one or two, where the fits were a scale of ten.
NS: If those sorts of things happen ... then there is no reason to come into hospital.
Denis: So, kind of, within the next two months, there is no monitoring done, apart from the obvious effect, or whatever, so nothing becomes clearer for at least two months or so?
NS: It's because we don't get any benefit out of looking at the scan because the effects of radio treatment take time.
Denis: So, now are there other gbm-type people amongst your current patients?
Denis: Do they meet together, do they communicate?
NS: There is a brain tumour support group. [Following enquiries, we learnt there is a brain injury but not a brain tumour support group in Canberra.]
Denis: In Canberra?
NS: Yes ...
Kitty: So, Margaret wouldn't be fit enough to go to Melbourne in a plane, would she?
NS: She would but I would certainly give it a little while to get over the acute sort of time frame ... because if you get down there and something happens, then you're stuck with someone who doesn't know what's going on. I think you are best to just wait a while and then .... Definitely, after the radio therapy, if things have been all right, you can certainly go down. If you wanted to go down there for your radio therapy, that's fine, but it just means that you then end up with someone, if something does happen, with someone that you haven't seen before.
Marg: That's true. So how long will this take to ...
NS: You'll have some swelling and things there for a few weeks.
Marg: Right. So, this part here, where it's softer, does that mean it is growing further?
NS: No, that's just the fluid under the scalp, related to the bruising and related to the spinal fluid which, some of its seeps out through the little opening we've made in the lining over the .... of the brain. It's never 100% watertight but that will all resolve and settle down over the next few weeks.
Marg: So, what's the best way to look after this [the wound]?
NS: Leave it alone.
Marg: No Betadine?
NS: No need to do anything.
Denis: You [Marg] were asking me about the depression there, there's a little bit of an indent is there? Or, mum was, Kitty. She wanted to know about the indent.
NS: It's just that some of the tissues are a bit more firmly stuck down than other bits of it, that's all.
Denis: You [Marg] asked me where it was, precisely, do you want to know where it was precisely?
Marg: What's that?
Denis: The tumour. You pointed to ...
NS: It's just in front of your ear, here.
NS: Just in front of ... in that spot there.
Marg: Right ... and near my eyes?
NS: It's outside of the Orbit, which is the part where your eye sits. It's behind the bone of that, so it's actually, people think of the pressure behind the eyes being the thing that's sort of pushing on the eye. There's actually a bony wall between the brain and the eye, so that it's actually really just the sort of pressure effects from the head, the pressure inside that causes that sensation, rather than any direct involvement at the back of the eye, as such.
Marg: Right. So, how are you with that Den?
Denis: Yes, well it's what we feared, the worst, but you know I think we know a little bit about it. What do you reckon Marg? So, who'll tell us about the group, which ladies?
NS: Ask the Charge Sister tomorrow.
Denis: It's not unexpected, is it Marg?
Marg: No, not really, it would be nice ...
Denis: A miracle, maybe?
NS: That's a right, there are certainly people around who have certainly gone a long time and hopefully you'll be one of those, it's just a matter, unfortunately, of waiting and seeing.
Marg: Yes, I suppose the waiting is the hard part.
NS: That's the hard part, and obviously the hard part is that we don't do any investigations for a period of time because that only confuses the issue and that then means you're sort of waiting, seeing what's going to happen in a few months time rather than being able to know from week to week what's happening.
NS: That's obviously very difficult, you know. In terms of being positive, we certainly know that being positive helps. In that your immune system is better equipped if you're positive about things.
Marg: That's right.
NS: Your immune system is involved with dealing with tumours just like it deals with an infection ... People who let themselves get very depressed and run down by this often don't do as well as other people who are trying to keep positive about it.
Kitty: I don't think Margaret will, she is a very positive person!
Marg: Well, I came through the cardio-myopathy.
NS: Yes, that's right.
Marg: What? One in 15,000, of those a third die, a third have transplants, and a third get better as quickly as they got ill and that's probably what Anne [Marg's sister] died from. She probably got post-partum cardio-myopathy when her first child was born. When I was in Sydney [St Vincent's] two other women died - one got it when the baby was ten days old, she was 25, and she died, and the other one, a heart was ready for her for the transplant, but she was 28 and she got it three weeks after the baby was born, and she died. I was 40 and Gregory was 11 weeks, and I survived.
Denis: You're going to beat another statistic by the sound of it.
Marg: That's what we Scots are for!
NS: So, I'll ask Dr T to come and see you tomorrow. Tomorrow is Wednesday.
Marg: I wont remember everything if I'm here by myself. The time I'm seeing her, it would probably be better for Denis to be here.
NS: If you let the girls in the Ward know tomorrow, I'll ring Dr T in the morning and let her know and just ask the girls here if they can ring the radio therapy Department and just ask them what sort of time, in terms of when she may be coming over, so that you can organise and just tell them you want Mr Strangman to be here. She'll probably come over in the evening, she usually does.
Marg: Right. And no special diet, or swimming, or ...
NS: No, just try to get back to living as normal a life as you can.
NS: You obviously need to just take it a little bit easy in the next few weeks. You will find if you try to do too much you may get headaches and you may feel a bit worse for wear if you try to overdo it but as time goes by, you just gradually increase what you are doing. The other thing, it's best not to do too much in the way of reading, or watching T.V. You may find that that actually makes your headaches worse as well.
NS: You may even find difficulty in concentrating in doing it anyway. It's best just to limit ... best just not to do too much too early. Just gradually start to get up and wander around and spread your wings a little bit and we'll get you out of here by the weekend probably.
Denis: We'll get the house ready. Clear the junk out, clean it up a bit.
Kitty: We'll have the bathroom and the shower ready for you.
Denis: Yes, well thanks very much Doctor. You don't have a particularly thrilling job.
NS: Well, yes, unfortunately, I don't have better news.
Kitty: It must be hard for you doing this sort of job.
NS: Yes, it's never easy.
Kitty: So young to be doing it.
NS: We all start somewhere ... It's all about keeping you as good as possible ...
Marg: That's right.
NS: ... for as long as possible. In some ways, I might drop dead tomorrow.
Marg: Anyone could. I've got a "Celebration of Life" ready for you, if you like!
NS: Okay then.
Denis: Thanks, Doctor.
NS: Not a problem.
Kitty: The telling of the children is the hard part now, isn't it?
NS: I think they're probably aware to some degree, given what I already talked about after the operation ...
Marg: Was Gregory there?
NS: Yes, so they're all, I suspect, somewhat aware of what the possibilities are. It obviously is never easy in terms of the finality of what it is but I think they have already caught on, in terms of what it is.
Marg: Right. Yes, you wonder how it starts.
NS: When we know that we may be able to treat things more effectively. When we know how to modulate things, we might be able to treat things a bit more effectively. We don't quite know the answer to what triggers it off, that's the problem.
Kitty: You don't know what would be the best - to be given a life sentence, or just to go the next day.
NS: Yes, I don't think that question is easily answered, one way or the other.
Marg: I mean, I think it's important to know what's ahead of you, so you can live life to the fullest.
NS: Well, yes, that's certainly something in terms of ... it's not good that you've got what you've got but you can get on and do the things you need to do beforehand.
Marg: Yes, I've got plenty to do.
NS: Keep you busy. That will keep you going.
Marg: The garden and everything, building this reflection garden.
NS: Okay then, catch you later.
Denis: Thanks Doctor.
Marg: Thanks Doctor.