Interview 30

Age at interview: 19

Age at diagnosis: 14

Brief Outline: He was diagnosed with Stage III Hodgkin's lymphoma in 2000. Treatment consisted of a biopsy - left neck, insertion of portocath in 2000 and eight months of chemotherapy, CLIVPP and ABVD. In remission since January 2001.

Background: Single, no children; lives at home with his mother; finished A levels and he is having a gap year. Says that he want to study medicine. White British.

Describes what it is like having a PET scan.

Can you explain to us what a PET scan involves for the people who might?

Right ok. Well PET scan, first of all it stands for Positron Emission Tomography so it was something that at the time was in clinical trials in, so it. My consultant wasn't sure if it was going to be conclusive. But what it involves is first of all taking a small dose of Valium to relax all your muscles and then an injection of a glucose which, which after an hour you then go through the scanner. It looks exactly the same as a CT scanner although it does take a bit longer. Whereas you can have a CT scan in about twenty-five minutes I was in the scanner two hours but the advantage is that you don't have to hold your breath or anything silly like that. You would just lie there and go to sleep if you want to and it's totally painless. And it doesn't make any noises or anything. And what it looks at is how cells are respiring and if some cells are respiring quicker than others suggests that they may be cancerous. So yeah but there's not many, not many places that have PET scanners in Britain are there, great shortage.

So how long ago did you have the PET scan?

I had my PET scan two months after I finished treatment so it was the Christmas of 2001. Yeah so that was five years ago really, four years ago.

His GP sent him for an X-ray when his blood test showed that it was not glandular fever.

So it all began on April 16th in 2000. I woke up on the Monday morning with a large lump on my left collarbone. It was a huge, a huge swelling just under the collarbone which appeared overnight which wasn't there the night before. So I went to my GP feeling well, not thinking it was anything very serious. He examined me and found that I had enlarged lymph nodes in my neck, under my arm and my abdomen. He thought it was probably glandular fever which was most likely outcome. So he requested a blood test and I thought not much more of it but I did think that it wasn't glandular fever because I didn't really feel that unwell. 

So the next day my GP came to the house by 9 o'clock and said that it wasn't glandular fever but it was most likely to be a bacterial infection. But and gave me antibiotics. But he said then that for, for his own piece of mind to go for a chest X-ray just to make sure that my chest was clear.

Explains the different stages (I to IV) of Hodgkin's lymphoma and describes the tests that...

So I went back to the hospital the following morning and had a CT scan done which showed that it had progressed to stage III, at least stage III at that stage. The following day I was sent to the [name] for a biopsy, bone marrow tests and a lumbar puncture to confirm what stage the disease was at. So that day I was allowed to go home but over the weekend they were getting increasingly worried about the size of a mass on my chest. So on Easter Sunday I came back in and I was given steroids just to calm the tumour down before it, they had the absolute diagnosis. 

So then I went back to be seen in clinic on the Tuesday and this was really the day when we had the first glimmer of hope because we were told that it was Hodgkin's. It was only stage III not IV which they thought it may have been. And my oncologist explained exactly what would happen. How long the treatment would be but he was also very, very hopeful about the outcome. And that was the day where we really thought well it's going to take a while but we'll do it and we'll get through it.

When you said, you emphasised the stage III as opposed to stage IV. Can you expand a little bit about what it means to be, to have a stage III?

Ok. Well this four stages of a disease. Stage I of Hodgkin's is where just a few lymph nodes are infected with the disease. So you might have a few swellings around your neck with little or no symptoms. Stage II would involve one or more masses above or below the diaphragm and then Stage III would involve two or more masses above and below the diaphragm. Stage IV is where it's spread to other parts of the body, for example the brain. And that was really why I had the bone marrow tests and the lumbar puncture done to show that they were both clear.

Gained 4 stone while taking steroids but felt reassured to be gaining rather than losing weight.

I don't take any medication at all. I haven't since I had chemo and everything's absolutely fine and my health is perfect and I haven't had any problems since.

Ok lets talk about steroids. For how long did you have steroids?

I had steroids as part of my treatment. So I'd be taking them for two weeks continually and I had three cycles of them. And I was taking a massive dose. I was taking like fourteen prednisalone a day, which has its advantages and disadvantages. The advantage is that it increases your appetite loads so you can eat loads and you feel like eating loads which if you like eating is great. But they do make you put on a lot of weight and I put on about four stone when I was taking them. And of course they do tend to make you all puffy, and your face puffy, which is another thing about cancer making you look different.

Ok that's the disadvantage, ok you told me about both things. Did you know why they have to give the steroids, you knew?

Well as part of the treatment the thing that steroids really do is to take all the water out of the tumour and that's the reason why it, the tumour shrinks quite a lot at the beginning because you're hitting it with all these steroids and they take all the water out so it decreases.

Ok. And you put on weight quite rapidly?

I put on weight really quickly and a lot of weight which in the end got ridiculous really. And after treatment I kept putting on weight because I felt that if I was putting on weight then the cancer wasn't there because when I was diagnosed I actually noticed I'd lost over half a stone which I put down to just being fourteen and growing at the time. But as I, after treatment I thought as long as I was putting on weight the, the cancer wasn't there and I needed to worry until one day my consultant said, 'Well I think it's time to stop and that is gone and we should start thinking about losing some'. And well I've made an effort but I haven't quite got there yet but...

But you have lost a lot?

I, well yeah I have lost a lot but even so I did feel that, I felt quite secure putting on weight because I knew that I didn't have cancer.

Ok so the thought of losing weight makes you a bit afraid?

It does make me afraid. Not so much now I think I've passed that stage now and I just want to lose weight and get back to normal. Yeah but originally and straight after treatment it did make me feel very secure putting on weight.

And what did it do for your self-image because I mean being a teenager all those things?

Yeah. [pause] Well it did decrease my self-image putting on a lot of weight but at the same time because it was making me feel so secure in not having cancer I preferred to be putting on weight [laugh]. It was yeah.

It's taken a while to lose weight?

Well yeah it has taken me a while [sigh]. I eat a lot anyway so it's harder then but yeah it has taken me a while but I'm at the stage, I've got to the stage now and I haven't been at it long where I really don't mind losing weight. And I'm trying to but it is quite easy to do especially after having prednisalone which makes you just all big and bloated but as soon as you stop taking them and your appetite goes back to normal you find that you do lose weight quite quickly.

Going to school provided a 'break' from his illness and treatment.

I think my mother in particular was very, very upset for the first few months because she took time off work to look after me. And the days were really long and we were here on our own and she would get upset and I'd get upset. But as treatment went along and I went back to school and they went back to work and we got normality going again it got easier. And right from diagnosis every time I went to clinic there'd be more good news and there'd always be some hope to cling on to. So certainly it, it did get back to normal quite quickly.

When I first started having chemo I was quite tired the very first time I was having the treatment but that did get better and it got to the point where I was going to school every day after treatment. I didn't miss any school. Once I, the day after I'd chemo I felt well enough to go. And school became a really, really important part of it all if not for studying just to go and have a break with friends and for the social things. And I, and there wasn't a teacher who would walk past from me wouldn't stop and ask how things were and it was really, really great to have that support. So I was really pleased I could keep going really.

So you kept going throughout your treatment?

I kept going to school all the way through my treatment as much as I could. I started off by doing half days just a few hours to get me out of the house. And I suddenly realised well there was no point in this so I went for whole days and I was absolutely fine and really enjoyed it. And then during the summer holiday when I was still having treatment it got a bit awkward because I didn't have that break and I really missed school. And of course we couldn't really go very far on holiday [laugh] but I did go out cycling and things and I was absolutely fine.

When he was 14 he decided not to have his sperm stored but now regrets making that decision.

Well treatment, treatment was would be six to nine months and it would be at the start anyway purely chemotherapy. There would be two groups of drugs that they used, two cocktails of drugs. One would be short to CLIVPP from the other ABVD. So I'd have CLIVPP for a month and then ABVD for a month. And there'd be three cycles of each so there would be six cycles altogether. And during that time I'd obviously have a lot of other side effects from treatment. Things like hair loss, putting on a lot of weight and also long term symptoms which I really had to think about. First of all ABVD can affect your heart. It can also, you can also, you're at a little bit of a risk of developing another cancer further down the line. And also there's a chance of infertility which wasn't really something I was that worried about at, at fourteen but as time goes on you do start to think about later on in life and you think well how will that affect me further down the line.

Did they offer sperm banking?

They did. They did offer sperm banking but I actually declined it simply because I was in a bit of a state. I'd had a real shock and this was something that was making it worse really, to have to go and do that and feel. And I was feeling pretty awful. Well I declined and it's a decision which [pause] I think was the wrong decision now but that's, but it's easy to look back and say that it was the wrong decision when you're in that situation you know, maybe it is.

Do you think you would have benefited from talking to somebody in more detail?

Yeah certainly. I think it, at the time that was something very small in a much bigger picture and I could have talked to someone about it in a bit more detail but I only had like a day to decide. And it was a bit, all a bit rushed and I was thinking really more about the treatment and was it going to kill me rather than anything else.

Did they offer the possibility of you talking to a counsellor or someone about infertility?

No, not at the time, no.

Ok. So it was your decision?

It was my decision yeah.

Do you remember what the consultant said when you told him?

About?

That you were not going to decline the sperm banking?

My consultant actually booked me an appointment to go and see the sperm banking team in the [name] and I decided later, after I'd spoken to him that I didn't want to so he basically cancelled the appointment [laugh]. It, it was an optional thing and I declined it. But looking back I wish I hadn't but again it's hard to say because I'm not in that situation now.

I think what he said was 'The chances are it will'. So there was, they're pretty sure I think that it will and now I'm off treatment, I'll be off treatment five years this September and I think that's one of the things they're going to start looking into. And exactly how it's affected me.

Everything. You do make, have to make decisions really quickly and I think you really mature really, really quickly. Because I mean you have to make decisions in a few hours sometimes about quite difficult things but it is a period of great maturity really throughout treatment.

Advises others not to give up and says that cancer can have a positive influence on your life.

Well I think the most important is first of all not to give up. That there's always hope and that, as I said before, that childhood and teenage cancer is very different from cancer in adults. It's not the same. And that as I was told when I was diagnosed, cancer doesn't have to be this horrible dirty word we all think of it being. It really doesn't. Cancer can be a really, really positive thing. And I think the way my treatment went and five years down the line when I look at me now I really think that cancer was hugely positive.

Well I'm looking forward to September going to university. One day even maybe a doctor, which has been, which was a reality or had, which I'd really. I'd really like to be a doctor eventually. My interest in medicine comes from having Hodgkin's. I've just had my A level results last summer and I was really, really pleased with them. So I'm looking to the future.