Cancer (young people)
Surgery for cancer in young people
There are 3 main treatments for cancer: surgery, chemotherapy and radiotherapy. Which type of treatment is given depends on many things, particularly the type of cancer, where in the body the cancer is, what the cancer cells look like when examined under a microscope, and whether it has spread (metastasised).
In their interviews, young people whose treatment included surgery talked about why they needed surgery, their feelings and concerns before surgery, and how they felt whilst recovering from surgery.
For most of the young people we interviewed, this was the first time they had been in hospital or had had surgery, so needless to say, they found the whole experience quite scary. However, it helped that their parents were often able to stay with them in the hospital and visits from friends and family also provided a welcome distraction.
The diagnosis of cancer is often made by taking a surgical biopsy or sample of the tumour. The surgeon removes a small part of the tumour, and it is tested to find out if it is cancerous and what sort of cancer it is. Surgery is often also the first and main treatment, and surgeons may try to remove the whole tumour the first time around. Surgery is also used in combination with courses of chemotherapy, which works to shrink the tumour before surgery.
Her operation was successful in completely removing her tumour. She knew that without the operation she would have died.
Her operation was successful in completely removing her tumour. She knew that without the operation she would have died.
So you knew that?
Daughter: Yeah, I knew that I was going to die if I didn't have the operation. They explained it to me in a way that wouldn't get me frightened, or even more frightened than what I was.
And you were 15, that's a big thing, how did you feel?
Daughter: Very scared, [sighs] but I had my Mum with me the whole time that I was in hospital, so it made it a lot better, instead of being on my own. And they had loads of people that used to come in a talk to us and everything, and just act as if you're normal again and used to do like drawings and watch the TV and everything, so it kind of kept your mind off it, you wasn't really thinking about it.
So do you think it's good to tell this kind of information to young people?
Daughter: I'm glad that they did because I think I would have worried more.
And you had a counsellor or someone going to talk to you at that stage, before the operation?
Mother: Just the doctors.
Daughter: Just, yeah, just the doctors, yeah.
The doctors, and nurses?
Daughter: Yeah.
Mother: Well, yeah the nurses.
Daughter: The nurses were great [chuckles].
Okay. So you had your operation, the tumour was removed and what did they say to you afterwards?
Daughter: They just come in and told me that it was a success, that my brain tumour had, had been completely removed because at the stage when they told me I had it they didn't know whether they'd be able to remove all of it or...
And they then told me that I'd have to go through radiotherapy.
Normally before having a general anaesthetic (being put fully asleep) for the operation, people are not allowed to eat or drink for around 12 hours before the operation. The reason for this is so that the stomach is empty at the time of the operation, and, should someone be sick during or after surgery, there is nothing for them to sick up.
Many of those we interviewed said that they were particularly worried about 3 things: having the general anaesthetic, the pain of the operation, and the possibility of scarring from the surgical wound. Many found that talking to the surgeon before the operation was reassuring. Occasionally the information that was given to young people about the possible surgical complications seemed unnecessarily detailed and alarming. However, in general, most of those interviewed were really impressed by their surgeon’s skills.
Describes being scared before the operation on her neck and waking up to find she had a feeding...
Describes being scared before the operation on her neck and waking up to find she had a feeding...
But the first thing I knew was just waking up and having all these tubes. I had a feeding tube in my mouth, I had a catheter, I just had all, all kinds of things. But I had a really nice Australian doctor, this, this young man who very quickly took a lot of the tubes away and, 'cos I, I was trying to get out of bed, I was trying to go to the toilet, I didn't realise how ill I was and you know, he soon realised that I wasn't actually going to sit there for much longer. So over the next couple of days pretty much all, all the tubes were removed. I particularly remember the feeding tube being removed which was pretty horrendous. Luckily he didn't tell me how long it was before he started to rip it out, 'cos it was like a big snake being pulled out of my stomach. But at least that meant I could eat, so, so that was good. I started off eating some ice cream again, just to get me used to food.
At the time I was, I'd been with my boyfriend for four years, and he stayed with me overnight in this intensive care ward 'cos I was really scared. And I just remember him being asleep in the chair and me just sitting upright in this bed just thinking, oh you're supposed to be awake trying to keep me company. I was just really scared in, in there. Eventually like I was in Intensive Care for two days and then they moved me to a ward still in, [place] where I was for another night.
(See 'What young people think makes a good doctor').
She felt terrified when told by junior doctors about possible complications of her surgery and...
She felt terrified when told by junior doctors about possible complications of her surgery and...
Yes. To make the operation easier and to mop up any cancer cells that were travelling about in my body. When I went into hospital for the surgery, actually it was a brilliant time in a way because the chemo stopped. It was amazing how fast I felt better!
I went into the hospital for a discussion with the anaesthetist etc the night before the operation. And one of the doctors said 'Well you know there are a couple of things that could go wrong. We could sever through one of the nerves and then you'd have to have a brace forever or we could go through an artery and then we'd have to amputate your leg.' We were absolutely terrified.
And it was so silly; we should have said something. Another boy who had cancer in the same place and was in hospital at the same time asked to see the surgeon, who said 'Oh for heaven's sake, we have done this operation thousands of times, we'll just have to say that'. I so, so wish that we had asked to see the surgeon who was going to do this operation and knew all about it and been reassured too. That's is a bit of a regret.
(The text has been altered in accordance with the wishes of Interview 13.)
Young people with brain tumours sometimes had to have a surgical operation to have a catheter or a 'shunt’ put into the central area of their brain (into what are called the cerebral ventricles). These ventricles are normally filled with cerebral spinal fluid and the shunt drains the fluid off to prevent pressure from building up. Sometimes, very occasionally these shunts can become blocked and emergency surgery is necessary, but mainly they work well and can often be removed after a period of time.
His shunt blocked and he slipped into unconsciousness - which neither his mother nor his GP recognised as a complication to do with his shunt. He had to have the shunt removed as an emergency procedure.
His shunt blocked and he slipped into unconsciousness - which neither his mother nor his GP recognised as a complication to do with his shunt. He had to have the shunt removed as an emergency procedure.
Mother: So that, because of how unstable he was and then they took him down for an emergency scan and that's when they found out that his shunt had failed the, the -
Son: Valve.
Mother: - valve in his shunt. At first they thought there could be problems with the whole shunt in which case they said when they got the scan they might have to replace the whole thing but as it turned out they were able just to replace the valve so that he didn't have to have the two, like two operations with the incision and everything.
So the fluid was not going through to the stomach?
Mother: It wasn't going through to the stomach so he was, he, also as well because he'd been vomiting he hadn't been keeping any of his medication down so the, all the other hormonal things then were going haywire as well so that's why he, the deterioration was so rapid. Because we, we didn't know about the hydrocortisone, because they were able, obviously they knew when he got to hospital they gave him an intravenous hydrocortisone injection so that it got in to his system. Again, again his body didn't handle the stress so fighting illness or anything going on in his body where our bodies immediately there's something wrong with them your body kicks in with that hormone, [son]'s body wasn't doing that and because he don't, taken his dosage in the night and he vomited he obviously had none in his system to fight whatever it was that was going on.
And the shunt has been there for how long?
Mother: The shunt has been there now since, well since that first operation.
Son: May '99, well May '98.
Mother: May '98 he had the shunt fitted the first time and then it, they, they revised the-
Son: Valve.
Mother:- shunt, the valve then in November '99 and since then touchwood.
Son: No troubles at all.
Mother: - there's been no problems at all. Because prior to him having this crisis they had talked about possibly removing -
Son: The shunt yeah.
Mother: - the shunt and after this he's 'No way, you leave it where it is.'
Son: Yeah.
Mother:Because we, we really weren't sure whether it was a good thing or a bad thing but we thought well why remove it if it, if it was working fine before.
Son: It was doing its job.
Mother: But they said its just one of those things that can happen that because they, when they put the shunt in they made allowance for the fact that he probably would do a lot of growing and so they allowed for it going in to adulthood anyway so touch wood there should be no more problems.
Was wary when he had his first shunt put in but now feels more confident that he can live normally.
Was wary when he had his first shunt put in but now feels more confident that he can live normally.
I have the shunt because my brain, the fluid around your brain builds up and it was giving me headaches, severe headaches so they put the shunt in to drain the fluid off and it goes down my neck, you can feel it, just there. And it goes in to my stomach and just drains it off and disperses in my stomach.
Hmm, no I live a normal life now, I can do everything I want to.
Okay.
But when I had my shunt before I was really wary about it because they said 'don't push the button' in this, I've got a bubble on the side of my head, they said 'don't push it in,' I was really scared about hitting it in case it does something to me but like this is my second shunt and I don't really worry about it, I was just scared of hitting my head against walls or something. But I just carry on as normal and don't really mind because like its there and I've gotta put up with it and just, they say you live a normal life so I do.
So you have learnt your lesson to?
Yeah don't worry about it because the doctors push it and nothing happens so if it, if you push it now and again its not gonna do anything.
So the first time you were really worried about it?
Yeah worried about hitting it.
And maybe that was also kind of holding you back?
It was holding me back from doing stuff I would normally do like, like because I didn't like people touching the side of my head and in the shower like going there, washing my hair and it just weird.
Okay. How long do you think it has taken you to build up that confidence?
Because after I had my first shunt and that blocked they put in a second one I just didn't really mind so after that I was fine.
Surgery for cancer is typically carefully planned ahead of time, but sometimes there is an urgent need to operate quickly with emergency surgery. In some cases, a patient will think that they are going in for investigations or relatively minor surgery, but then during the operation, the plan has to change because of what is discovered during the operation.
Thought that she was having an ovarian cyst removed. Her mother had to sign permission for the...
Thought that she was having an ovarian cyst removed. Her mother had to sign permission for the...
And also did an ultrasound scan and discovered that I had a cyst or what appeared to be a cyst on my other ovary as well. So the Surgeon explained to me that they would have to remove one of my ovaries, so I signed permission for him to do that and that they would just drain the cyst on the other of my ovaries, so I went into for surgery on Wednesday the, I think it was a Wednesday, the sixteenth of August 2000 and when they started the surgery it sort of become apparent that it was more complicated than they had expected [laughs].
And they took a frozen section out and diagnosed that it was Ovarian Cancer so, they, so they removed and they had to contact my Mum and ask her for permission to remove both of my ovaries 'cos you have to give signed permission, so whilst I was still in surgery they contacted her and explained the situation. I also needed a re-section of my small bowel 'cos the, the Cancer had kind of stuck to the bowel and that's why I had the symptoms of Irritable Bowel Syndrome because my bowel had been obstructed by the tumour. Which is also why I'd had the, the vomiting, and the pain, and that sort thing 'cos it eventually, the bowel had been sort of squashed so it, it couldn't, it couldn't, no longer work so they asked her if they could do a bladder re-section, a bowel re-section and remove both my ovaries, so, I think she made the right decision [laughs] and said, 'Yes'. So they went ahead and finished off the surgery, so I was, I think I was about seven hours in surgery in the end. And then, yeah, and then I sort of, I mean I woke up and I was so very, because I had no idea, I thought I was going in just to have a, ovarian cyst removed so, so I sort of didn't wake up expecting anything or worried about anything really, I was just aware that I was very drowsy and obviously had a lot of morphine on board so it was all a bit, bit, bit blurry but I also had a feeling, because they'd explained to me that if things were more complicated, then they'd have to do incisions both, both ways, a bikini line and an incision from my belly button down and they explained that if it was more complicated they'd have to do that and I therefore have a, a epidural with morphine. So and I was kind of aware that I had that so I was sort of, knew some must be a bit, a bit wrong. So and I was kind of aware that I had that so I was sort of, knew some must be a bit, a bit wrong. But, but I sort of felt alright, the first night was very tough 'cos I felt so ill, [laughs] and I overheard a nurse talking on the phone and asking for help, because she couldn't look after me on her own. So that was quite frightening, but I was still sort of I thought I was okay so it was fine.
Before his diagnosis of bowel cancer Stephen had emergency surgery to remove a blockage in his bowel. He had a Hemi- colectomy.
Before his diagnosis of bowel cancer Stephen had emergency surgery to remove a blockage in his bowel. He had a Hemi- colectomy.
Now we had a CT scan and they identified an actual blockage in my bowel, an obstruction is the exact word they used and they said, “We’re going to have to go in with surgery to, to remove that obstruction.” By this point they potentially had a better idea of what it was but they called it, “Just an obstruction,” what they say, we went in with surgery and it ended up being a five hour operation I think it was and then,
What did they do exactly to remove the blockage?
Yeah is yeah so they ended up removing half my bowel, so I underwent a hemi-colectomy fortunately I didn’t need a, I think it’s a stoma bag is it? Sometimes when you have bowel surgery
You didn’t have to have a stoma,
No yeah, I didn’t have to have a stoma or anything like that.
They just joined up the two ends.
Yeah they managed to join it up perfectly which was good for me, so I managed to do that. And then the surgeon after the, the operation said, “We had to remove half the bowel, what we removed looked ugly” was the term he used. “We’ve sent it off to the lab, results will be back soon.” And then by this point he pretty much knew it was cancer.
People recovering from surgery may be given patient-controlled analgesia (PCA), a hand-held pump with which they can administer themselves with pain relief medication (or ‘analgesia’) to counteract any pain that they may get. For the first couple of days after an operation most people feel quite woozy from the anaesthetic and painkillers and can find it hard to remember this period clearly.
Talks about how he felt after major surgery on his lungs.
Talks about how he felt after major surgery on his lungs.
It was three months of the initial chemo, and then, then it went well. I think they reduced in size by about half, maybe even more. So they thought, right, let's get whatever's left out. So they did an operation, a big operation on my lungs. That was quite harsh. I spent ten days in hospital for that trying to recover from it. Yeah, it was really harsh, that operation'
Yeah? Do you want to talk a little bit more about that?
Yeah, I can do. It was a bit further away. They couldn't do it in the hospital I was in, so I had to travel for it. My parents and my sister came up with me. They managed to stay in one of the CLIC houses, because I was still quite young and being done with the children's side of things. Yeah, went up in the morning, and then in the afternoon had the operation. I think it was seven or eight hours. Didn't go onto intensive care like they thought, which was good, so just went back onto a normal ward, which was great. Before I went in the one thing I was worried about was how much they would have to take out, you know, around the areas, because I was, you know, really sporty and into my fitness and everything. I was just wondering about my chest - my lung capacity. I didn't want to be out of breath all the time. You know I think it's quite natural. They weren't entirely sure how much they'd have to take out, but after the operation it wasn't too much. I didn't notice too much at all. So that was good. The next few days I was pretty out of it. Just on the painkillers, and morphine and drugs and everything. The only thing I noticed for pain was just my shoulders, because on the table they had your shoulders right up, and it was just aching for that, being like that for seven hours, but I couldn't feel anything else, so it was okay. And then after about three days, started to feel a bit more - you've got drains coming out of your lungs and a few other tubes going in different places, but that was a bit annoying though. You just want to get over it and get home, but you've got to stay in hospital. I think I had a bit of air on top of one of the lungs and they wanted to keep an eye on me for that. While I was there they got the results of the pathology, I think it's called [laughs]. It said it was all dead, what they found, which was great. So they were really pleased about it and then decided on the next treatment, so went on from there.
Has had several operations and now knows she needs anti-sickness tablets after a general anaesthetic.
Has had several operations and now knows she needs anti-sickness tablets after a general anaesthetic.
What happened with after they, they removed the lump?
Well, I started getting lumps pop up on the right side of my neck which hadn't happened before. They'd all been very much contained on the left side between just literally my neck and my shoulder, it hadn't gone anywhere else. So I started feeling lumps on my right side and then, they were taken out and were positive, so they decided to do the same operation that they'd done on the left side of my neck, on the right side. So I had all the glands taken out on the right side of my neck, which I actually found out the other day was 67 glands, which is quite a lot I think [laughs]. I didn't realise we had quite so many glands so that was quite funny.
How long that operation lasted?
I think that was about three hours long. I was in for four days maybe five days this time. I didn't stay as long as I did the first time I was in [place] so my friends came up and visited me which was a big help because obviously in [place] they all called and, and sent cards and stuff but it, there's nothing nicer than friends coming over and you kind of laugh and giggle and kind of forget that you're in hospital and you've got drips and stuff up. It was, it was really, it was really nice. That was the beginning of sixth form, the beginning of my A levels. And my head of sixth form came to visit me as well which was lovely. She brought some flowers. And, and so I kind of, I had a better experience of that one. I, I knew the drill a bit, I knew how I was going to feel afterwards, I knew what painkillers to ask for and it was, it was an all round better experience just because I had more. My brothers and sis, my brother and sister could come and see me which they couldn't really do in [place] 'cos it was too much of a journey just to come up for a day and then go back again. So that was just really lovely I, you know, I kind of felt supported and loved and that was, that was fine.
Recovery-wise it kind of got easier the more operations I had. Because to begin with the anaesthetic was making me feel very sick, so then I knew to ask for anti-sickness so when I'd come to I, I'd feel better. I'd feel in pain maybe but I wouldn't feel sick which has always been quite a big problem. I had the odd bit of physiotherapy for my shoulder because obviously they took a, a part or a whole muscle out.
As already mentioned, during the operation the surgeon will typically take samples for further examinations, and people can be quite anxious while waiting for the results of these tests to come back, as it may take several days.
Some cancer requires major surgery: one such cancer is a type with tumours that affect the bones. Sometimes false bones (prostheses) can be used to replace a bone containing a tumour that has had to be removed. Very occasionally, a limb has to be amputated (removed) in part or as a whole. After the surgery, an artificial limb can then be fitted.
What can be amazing is how quickly the body can recover from surgery. Strength can return and scars can heal surprisingly quickly. However, a few may be left with physical scars that it can take some years to come to terms with (see ’Body image during and after cancer’).
Stephen spent 6 days in hospital after his hemi-colectomy. He recovered quickly and was soon going back to school part time.
Stephen spent 6 days in hospital after his hemi-colectomy. He recovered quickly and was soon going back to school part time.
During that time
After surgery.
I was in hospital for six days I think.
And what were your experiences, we quite like to hear people’s experiences of being in hospital.
It was, I was, yeah because of my age I was sent back to a kind of children’s ward, I was 15 at the time, and obviously they’re not used to children in this hospital that I was at then, used to children having such big operations, it was only a relatively small hospital and it wasn’t a specialist children’s hospital. So they weren’t really used to children having such big operations. So as a result I kind of got lots of attention, lots of care almost if that makes sense. And the communication then was quite good actually, but it was kind of like I think they knew, the hospital knew they kind of made mistakes with my diagnosis so everyone was trying to perhaps rectify that a bit. But my experience after the surgery was, was okay.
So how long did you have then, that you went back home again? How was the post-operative recovery?
Yeah a normal person who has an operation, I was told takes about six weeks off work or something like that. Within two I was starting to go back into school,
Oh.
just starting to do stuff so I was very keen not to let things keep me down. I probably pushed myself a bit too hard, I always do. But I was out there, I was trying to do what I could which is my way of dealing with things so,
So you didn’t have a long time off school really?
No. No I had I started going in just like, I don’t know a lesson or two and then crept it up to half days and before I knew it I was just back and doing, doing full days like I could. I was still getting rest at home and sleeping when I needed it.
What about when you came home? Did the GP come and visit you? Or did you get any follow up from local doctors?
I don’t really think so I think we regularly went to the GP’s just to see the nurse just to get the dressing changed and to make sure it was okay and then I think it was after a certain amount of time we had to have the stitches out, so it was, we were in contact then.
So that all went alright?
Making sure the wound was looking okay. But yeah fortunately I had no infections anything like that. The recovery of the wound itself was absolutely perfect.
As with any surgery, the length of time spent in hospital after the operation and the time it takes to recover will be different depending on the type of surgery and other factors such as an individual’s treatment plan and cancer type.
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