Peter – Interview 43

In 2008 Peter was diagnosed with inoperable pancreatic cancer. He had chemotherapy which shrunk the tumour. In 2009 Peter had Cyberknife treatment. In March 2010 tests showed a recurrence, so now Peter is having more chemotherapy. He feels quite well.

In April 2008 Peter started to have problems with his bowels. He didnt have diarrhoea but he would need to rush to the loo to poo. Peter’s GP arranged blood tests, which were normal. However, he was worried when Peter told him that he had lost a stone and a half in two months. The GP arranged an urgent appointment with a specialist at the hospital.

Peter went to the local hospital and had various scans, endoscopies and a biopsy. In August 2008 he was told that he had inoperable pancreatic cancer. The surgeon told him that his tumour was in a place that was hard to reach, which made surgery impossible. This was distressing news, but Peter was glad to hear that he had not caused the cancer.

In September Peter started chemotherapy (an infusion of gemcitabine and tablets of capecitabine). Peter didnt have serious side effects, apart from changes in his blood. He sometimes had to miss treatment because his blood count was poor. In December he had another scan and the tumour had shrunk in size. This was good news.

Peter continued having chemotherapy until February 2009. He did the full six months of chemotherapy (thre weeks of treatment, one day per week, then a week off to rest every month). He had medicines to help with nausea. He did not have any pain apart from some indigestion at times.

Peter had heard about Cyberknife treatment, a highly targeted, very accurate type of radiotherapy. It allows clinicians to target certain cancers without affecting the surrounding tissue.

In April 2009 Peter went to a specialist who told him that if he wanted to be considered for Cyberknife treatment he must first have a PET scan to make sure that the cancer had not spread. Peter had a PET scan and heard that the result was good, so he would be suitable for Cyberknife treatment.

Peter went to a centre that specialises in Cyberknife treatment. At that time he had to pay to have it done privately. First of all Peter had another CT scan. Then he had a fiducial (a marker made of gold seeds) inserted by injection into the centre of his tumour. Fiducials are small gold markers that are implanted into soft tissues in or near the tumour to accurately guide the Cyberknife radiation beams. This was done with local anaesthetic.

Then Peter returned to the clinic for Cyberknife treatment on three consecutive days, 1st, 2nd, and 3rd of June 2009. Each treatment took about an hour and a half. During the treatment he had to lie very still. Peter think he had no side effects from this treatment. After this treatment the specialist at the Cyberknife centre told Peter that he hoped the cancer had all gone.

Peter went to his local hospital for check-ups. He had a CT scan in September 2009 and was told that the tumour had not spread. A CT scan in December did showed it still hadnt spread and Peter hoped that his tumour was dead;. However, in March 2010 another CT scan found that the tumour was growing again and that the bile duct was almost blocked due to the enlarged tumour.

In May 2010 Peter developed jaundice, so on the 16th May he had to have a stent put in. The doctor tried to do this via an endoscopy but it didnt work, so Peter had the stent put in via keyhole surgery. This procedure was done with a local anaesthetic but was painful. It took about 15 minutes. Scans and tests confirmed that the tumour had progressed; and that it had spread to the liver.

In August 2010 Peter started chemotherapy again (this time just gemcitabine). He will have chemotherapy once a week for three weeks and then a week of rest, for at least three months, as long as his blood results are satisfactory. He will then have another CT scan and the situation will be reassessed.

Peter feels very positive and optimistic about the future. In spite of feeling tired and sick at times he works in his garden for hours at a time and still plays golf. His wife has been a tower of strength and has supported him at every stage.

We spoke to Peter in 2010

Peter had the philosophy that he would fight the disease and that he would be alright. His…

Age at interview 71

Gender Male

Age at diagnosis 69

I came home; I was supposed to be at the golf club helping to officiate in a big competition, in which my wife was playing. How did you get on she said. I said, Oh usual rubbish, waste of time Till we got home. And I had to tell her, it’s bac.

Very hard.

Yes.

How did the whole family react to that news?

Oh, I think as I was so upbeat and blasé about it all, they followed me. And if I’d have been in, sitting in a corner crying and cringing they’d have been with me. But I was saying, Oh, oh we’ll see, I’m not dead yet And I remember one chap who said, Well he said, You’re taking this in such a jovial spirit, if you don’t mind me saying so, when it comes to chemotherapy and you lose your hair, you won’t have too much of a problem because you ain’t got too much hair He thought it was funny, it probably was funny. But that was, but that was the general attitude, I’m happy enough with it you know.

And do you really, did you really feel like that, or was it

I did yes, yes. I was always of the opinion, I will fight it, I will be alright. I shall win And that’s still my philosophy.

Mm. Good.

So whatever they throw at me well I’ll, when the worst, I mean what has encouraged me this time, the first time when they said, Right we’ll scan you after three cycles and if it’s not working goodnight There’s been none of that this time. He, the attitude is, We’ll, we’ll scan you after three cycles and if it’s not working we’ll have to strengthen the dose So they’re expecting me to outlive three cycles.

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Peter had Cyberknife treatment and was well for 11 months. Then he developed jaundice. Tests…

Age at interview 71

Gender Male

Age at diagnosis 69

So I started being monitored on a quarterly basis commencing September 2009. And the first consultation, The tumour has not resurrected, there’s been no spread, everything seems alright. How are you? And I said, Well I’ve still got a few problems with the bowels and I get a bit tired. Okay, okay. But otherwise you’re alright? Yes.

Did they do a CT scan then?

I well I’ve had scans yes. I was having scans, before each consultation there was a scan. Well not quite all because they slipped up sometimes.

The second consultation took place in December. The news was the same; there was no resurrection of the tumour, no spread of the disease, On your way.

This is 2009?

In March 2010 the news was not so good. It did appear the tumour was what they called progressing. It was back to life. And another problem was that a duct leading from the liver to the pancreas was blocked as a result of deflating. The deflating being caused by the pressure on it from the tumour. And an operation might at some stage be necessary.

Well it came to pass that in May, having come back from Spain on a golfing holiday where I enjoyed life to the full and eating, drinking, playing golf regularly, I came back a lighter shade of yellow.

Oh dear.

But within three days it was a darker shade of yellow, and the urine looked something like 100% navy rum. So I rang [the specialist hospital] up on a Saturday morning which didn’t please them very much, but they’d always said, Any problems, let us know.

And I went, they all of a sudden woke up to the fact that it was looking pretty grim and they’d better do something about it rather quickly. So a further scan, there were more blood tests, some of which they lost. There was another, an ultrasound scan, which showed the liver is perfect, it’s just a matter of this duct, and the stent operation will be necessary. So we’ll have you in.

They brought forward the ultrasound scan realising there was a degree of urgency. And I found myself in the hospital for the operation, the stent operation. And I think it was about the 16th of May 2010

I came out of the hospital on June 3rd, this coincided with another consultation at the hospital when they repeated that the tumour was progressing, and there was a fear that it might be spreading towards and into the liver.

Oh dear.

They didn’t, they’re not very categoric about it. They ummed and ahhed and iffed and, but there was no doubt about it.

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When Peters cancer had spread to the liver he had a different chemotherapy regimen. Low blood…

Age at interview 71

Gender Male

Age at diagnosis 69

I resumed chemotherapy on the NHS. On the same three, four week cycles of day 1, day 15, day 8. And as before, missed two out of every three. At this moment, where are we? 26th August 2010 I’ve had three chemo doses, and I’ve missed two.

When you say you’ve missed them, is that because your blood count was

Because the blood was not up to it. So that’s where we are at the moment. The blood not, the blood seems to be a problem. I’m not, I don’t know what they could do about it, if anything. But I’m on so many tablets some of which are for blood. I don’t know what most of them are for.

But anyway, the blood was alright last, when did I? Tuesday, yes it was Tuesday wasn’t it when I went? It, that was fine. So here we are waiting for the next one and we’ll go on from there.

So if your blood’s alright you’re supposed to have your chemotherapy once a week for three weeks, and then a week’s break?

Yes, quite yes. Mm. Yeah.

Oh I haven’t mentioned have I? The first series of chemotherapies consisted of the intravenous drip plus tablets. I’m not now taking the tablets. I’m just having the drip. But should after three cycles, not be doing too well, the tablets will come back.

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Peter described what CyberKnife treatment was like. It was painless and he listened to music that…

Age at interview 71

Gender Male

Age at diagnosis 69

And then you went back to have the Cyberknife Treatment. Can you say what it was like to have the treatment?

It, there was no problem, no pain; no anaesthetic was needed. You just lay there while this machine whirled around, pointing downwards, sideways, every possible angle, booming laser guided radiotherapy at the tumour. And all you had, all I had to do was not move and to facilitate this they’d got a plastic sort of moulded, a bit like an Egyptian Mummy’s coffin. You lay in it and you can’t move very much [laughs]. And your arms are straight down by your side. They, they were good enough to play, let you listen to a musical tape of your choice, and I chose classical music. And I think at one stage I drifted away into a nice little sleep.

How long did you have to lie still for?

An hour and a half. We mentioned that earlier on. Yes an hour and, it was, well an hour and a quarter to an hour and a half each time. And then it was just get up and go.

And that was three days?

Three days, June 1st, June 2nd, June 3rd.

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Peter had three cycles of chemotherapy. Then he had a scan and was delighted to hear that his…

Age at interview 71

Gender Male

Age at diagnosis 69

So for the next month or so there was more scans and bits and pieces, and then they arranged chemotherapy commencing on September 22nd, in three cycles, on the day 1, 8, 15 basis. I.e. day 1 is the first treatment, and a week later day 8, 2nd treatment, third treatment day 15, fourth week day at rest and then start again.

Do you know what the chemotherapy was called?

No.

Gemcitabine?

Yes.

And it wasn’t part of a clinical trial?

No. No. Where was I? Oh they said, After the three cycles we shall scan you to see how you’re getting on. And we have to tell you that should it not be working we shall have to withdraw the treatment and we’re sorry but you’ll be on your ow. Good news wasn’t it? But anyway we carried on. I missed a fair few of the treatments, usually the 2nd one for some reason, which I know not what.

And, anyway, come December they did a scan and told me, well they told the surgery, I’ve got the letter somewhere under a pile of papers, they told me that not only had the tumour stabilised, it had decreased.

Oh that was good.

In the order of 70%.

Excellent.

And so the treatment, the chemotherapy will be continued.

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Peter had a PET scan so that doctors could make sure he was suitable for CyberKnife. The next…

Age at interview 71

Gender Male

Age at diagnosis 69

You’d heard about Cyberknife?

I’d heard about Cyberknife and I asked the hospital to put me, investigate and put me in touch. So I ended up going down to London to see a specialist. It was a fool’s errand because they [the hospital consultant] had not supplied the specialist with any information. So he hadn’t a clue what was going on or anything. So the trip to London was a complete and utter waste of time.

Was that a specialist who knew about Cyberknife?

He’s the pioneer; he’s the one who’s introduced it to this country.

So you had to go back for more information?

So I went back again, and he said, Well you look to me an appropriate case for Cyberknife treatment. And he told me of course that it could only be done privately. But I said, Well I’m covered for medical insurance. I don’t see that as a problem. And he said, Before we go any further you’ll need a PET scan to make sure there are no problems anywhere else in your body because if there are I can’t do anything for you.

Anyway the PET scan which was held at the local hospital, and probably the first on a newly installed machine proved highly satisfactory. So with this information which had been sent on to the specialist, I was accepted for Cyberknife treatment and that started in basically May 2009 when there was a couple of consultations then blood tests, then the scan and then the most important bit, or one of the most important, was the planting of gold seeds on the tumour so that the laser could pinpoint exactly where to go.

How did they do that?

Oh they stuck needles [noise]

It was a local anaesthetic?

Yes, probably. It was a lengthy procedure. I went in early in the morning, so let’s say 10 o’clock; they put me in a bed. And after the, what they called the placement of the seeds, I had to go back to bed for three or four hours before I was allowed out. The doctor, specialist, by this time had seen a scan of the procedure and said, It’s worked, you’re okay, the gold seeds are in place so we shall now go ahead with the Cyberknife itself.

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Seeing a different doctor each time he attended the clinic exasperated Peter. Some did not read…

Age at interview 71

Gender Male

Age at diagnosis 69

Have you usually had the same messages from the different consultants?

What exasperates me every time I go for a consultation it’s somebody different. And of course some of them look at the file before you see them. But I did see one for example and, this was when? About three weeks ago? He said, When do you start your chemotherapy I said, I’ve had two doses Oh I didn’t know, I haven’t got the, your record with me And I thought, Here I am for a consultation, discussing how I’m getting on and he, he doesn’t even know I’ve ha

I mean, yes, you know, you lose confidence a bit. And then I saw the same doctor again on Tuesday, no it was Monday. And I got on a bit better with him. But it does bother me a bit that you’re not, there’s no continuity. The hospital’s in chaos.

Oh dear.

I mean twice they called me up, you, it was December when I got, when I subsequently got the good news of the big reduction in the tumour, I went for a consultation and the nurse came out, said, Oh Doctor whatever her name was, is sorry to keep you waiting, we appear to have lost the scan I said, What scan The scan you’ve just had I said, I haven’t had a scan Oh dear On another occasion, now I’m learning the tricks by now, I had a consultation and I knew full well before I had the consultation, I’ve got to have a scan.

Is this every time you go back?

Yes you get scanned.

Every, is this at the beginning of every month?

hree months.

Three months.

Yes, the time was getting near for the consultation, and I mean no news was coming for a scan, so I rang them up. And I said, When do you expect to scan me Why Oh for the consultation next week Oh, we appear to have slipped u. Oh dea. And they are busy, they are very, I said, Yes, yes I know but do I wait? Do we put back the consultation? Or do you rush me in for the scan I don’t know which they did, but had I not rung up

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