Bowel cancer surgery: decision-making and information needs
Surgery is usually the main form of treatment for bowel (colorectal) cancer.
- Total colectomy- removal of the whole colon
- Hemi- colectomy – only part of the colon needs to be removed.
- Sigmoid- colectomy – removal of the sigmoid colon (bottom of the colon)
- Transverse colectomy – removal of the transverse colon (middle of the colon)
- Laparoscopic colectomy – keyhole surgery to remove early stage bowel tumours.
- Local resection- removing the cancer from the lining of the bowel for early-stage cancer
- Colostomy - part of the colon is removed and the cut end diverted to an opening in the abdominal wall (tummy) so that bowel movements can be collected in a bag worn over the opening or stoma.
- Ileostomy – part of the small bowel is removed and the cut end diverted to an opening in the abdominal wall (tummy). so that bowel movements can be collected in a bag worn over the opening or stoma.
- Debulking surgery- to remove cancer from inside of the your bowel before having you have chemotherapy or radiotherapy to make it more effective.
- Surgery for bowel obstruction - sometimes the cancer completely blocks the bowel, in this situation an operation is needed straight away to open the bowel.
Several people had been invited to share in decision-making about their surgery but felt that this was an unrealistic expectation since they had no expertise in the area. One man, who actually had a background in medicine, describes such an encounter with his surgeon. Other people had been encouraged to ask questions but pointed out that without being offered information they didn't know what questions to ask.
He wished his surgeon had told him what he wanted to do rather than expecting him to choose.
He could either do a very radical operation, remove virtually everything in the region or he could remove my rectum or he could, that is the terminal, the last part of my bowel, the last few, three or four inches maybe or he could just remove the ulcer.
And not being in any way expert in this I suggested I'd rather like to leave it to him.
He put me these alternatives and it seemed to me, to begin with he put them in this very even way and I, I found myself trying to mind-read what he really wanted to do and in the circumstances I said "Well what would you do if it was your brother?" in a desperate attempt to get him actually to commit himself.
And what, you know I was sophisticated enough I suppose to say "Well what are the 5 year survival rates for these things?" and so on. And eventually he committed himself and it was quite clear what he wanted to do and it was quite clear that was an alternative that would leave me, if it was successful which it was, with pretty well no disability and a very good chance of no recurrence.
A number of people had sought second opinions because they, or a member of their family, were not satisfied with the scenario that had been presented. Two of these people had been told they would definitely need a permanent colostomy when this turned out not to be the case. The other two lacked confidence in the first surgeon they saw and were much happier with the second. One woman explains why she wanted a second opinion and the contrast between her two consultations.
She wanted a second opinion because she lacked confidence in the first surgeon she consulted.
So as we drove to this specialist centre I was feeling really, almost paralysed I think with panic and I think the most important thing about the surgeon when we saw him was that he gave me back my hope.
He had statistics, he had experience, he'd been doing that operation for a large number of years, he had developed a specialist technique for doing it and he had the results to prove it.
And I think I found that immensely reassuring. And I really did need to feel that if I was going to lie on a table and have a huge abdominal operation I needed to feel confident in the surgeon.
So we actually came away from our interview with him feeling happy which sounds a strange thing to say in the light of what we were living through. But he he just contrasted so strongly with the previous guy, it was amazing.
The level and quality of information offered to patients before their surgery was extremely variable. Overall, people who were well briefed before their operations seemed to find the experience less frightening. A few people were too ill to take in much information or preferred not to know too much about what was going to happen.
Some people were extremely satisfied with the information they received before surgery and were thoroughly reassured by it. One man describes such a meeting with his consultant. Another man had a satisfying consultation because he had researched his condition in advance and knew what questions he wanted to ask.
He felt he received excellent information before surgery.
I had to stop taking the iron tablets a week before the operation otherwise, from what I can gather, it would have been like him trying to do an operation inside a chimney that hadn't been swept.
I was shown a diagram of my insides on white boards so that he could use one of those white board markers in order to show which bits would be cut out and reconnected. I was,
Is this the surgeon?
The surgeon himself together with the stoma sister, although they didn't think that I was going to need a stoma. I was told about the various tubes that would be coming out although I don't think I quite understood what they were all for, if I did it just went over my head.
He went to his consultation well-prepared with questions.
Yeah, well it's, it's the Dudley Cancer Support Group and they've got a magnificent library there and I went in there and read everything I could find on, on bowel cancer. So by the time I came to see my consultant I, I had got a notebook with, with fifteen questions written down.
And he obviously caught sight of them because he just started at a) and went through to z) and finished and said "Have I answered all the questions you've got written down there?" Which in fact he had, and a lot more that I'd never thought of.
So in that respect I was very fortunate but I wanted to know. I wanted to know the details. I wanted to know what type of cancer it was, how far I'd got, what my survival rate was likely to be, how long I'd be in hospital, how long before I could drive, how I'd be affected, all these things. And I got straight answers from my consultant.
Others had been offered information but felt that the surgeon's choice of language was unhelpful. One man explains how his surgeon's light hearted explanation of his surgery left him confused.
He was confused by his surgeon's explanation of his coming surgery.
And I went away completely confused because I mean I'm the sort of guy that I know where my hand is because I can see it but anything else I'm sort of not with it.
And I assumed wrongly that the operation would all take place up my back passage and I woke up with a fright finding this great big scar down my front tummy.
When I asked the stoma nurse, when she came to visit me in the hospital before the operation, because they were going to do an ileostomy first of all as well I said to her "well where does my bowel go that people check it out and then put it back?"
And she said "no you've got the completely wrong end of the stick." And then she explained to me fully that the operation would give me a stoma which will have a bag whilst the rest of my body because he cut away my rectum and part of my colon, re-pulled the colon down past the anus, re-stitched it in that position, in a U shape, cut a hole in it, so I had a completely new area made for me.
I was stunned, I was really stunned, I thought oh right, oh right.
People who had emergency surgery were sometimes given minimal information about what was happening to them. One man did not know what had happened until 5 or 6 days after his surgery.
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.
He was admitted as an emergency case and was offered no explanation of what had happened for days.
I wondered what it was all about but I was so you know, in pain, that I was glad to get out and get something done about it.
But nobody explained and said' "right we're going to do this, we're going to cut you, we're going to remove a tumour" or what have you. It wasn't until I went back after intensive care, which was about five days, I went from there into the uh general ward and it was then that the consultant came round and told me what they'd done and that there was to be no guarantees.
If, if the consultant or the doctor, the general doctor, I forget now what they call them now in the hospital, had come round and said "Look this is what we've done blah, blah, blah," but that didn't happen to me until the consultant came round when I was back in the day ward, in, in the normal ward and that was after about six days.
A woman who has had six major cancer operations recalls her fears before her first surgery and how every subsequent operation brought new concerns. She stressed the importance of anticipating people's information needs before major surgery.
She remembers her fears before the first of many cancer operations.
And I said "I'm petrified." She said "Well you know, everything's going to be fine, you're in good hands," etc., etc. Yes, that's fine. I was in good hands. I knew that, but that wasn't telling me what to experience, what to expect.
I think, I was very frightened with the, with the liver op. I was also very frightened with the first lung operation because I didn't realise when the surgeon actually said to me, I didn't think about it, I didn't realise that they would actually have to cut through the sternum. That frightened me and I thought well my body is going to be cut in half! And I was very frightened.
She stresses the need for people to be offered detailed information before surgery.
I, it is very difficult, I just feel that surgeons obviously do an excellent job but, they have never been through the procedure, so it is very difficult to explain to a patient what is to be expected.
Having gone through all this, I feel that it is now so important that patients having to go through journeys like this, hopefully there aren't many people that would have to go through what I've gone through. But even a straightforward bowel resection it needs, there, there's a lot of need out there to explain to these patients.
I think they need to be aware of in more detail of what the surgeon is actually going to do. I think they need to know the level of pain that they're expecting to experience when they come out of this and the sort of things that, that may happen or dietary problems, I think dietary problems are one of the biggest, especially with bowel surgery.
Stephen was only 15 when he had his first surgery. He went on to have many more surgeries to remove tumours that had spread from his original bowel cancer and although he felt he was included in the discussion about his treatment and surgeries there were not always many options medically suitable for him.
Stephen’s bowel cancer had spread to his leg and his options were sometimes limited as his case was unique.
How was communication with the doctors at this, during all this time? Were you involved with decision making with your parents, or were you given options?
Yeah we were given options but with something like a new tumour in the back of my leg there was only one big option, yeah there’s surgery and then radiotherapy was just medically the best option by far. So we just, with this point yeah we just we went with whatever they said. And it, we were all involved but as I say there was only really one option.
Yeah so I had three months of that next lot of chemotherapy and then the scan results showed that the tumours had continued to grow.
In your leg?
Yes. So at this point they were discussing an amputation so at this point the only tumour they could see was the one in my knee, so they were discussing an above knee amputation. So with obviously after the first consultation we were sent home to kind of discuss this because the doctors thought there was still a possibility that because it had spread from my bowel to my knee that it would have spread anywhere else. So this is where we were involved hugely in the decision making. And
Where did you get information, did you look for other information during all this time? I mean apart from what the doctors were telling you.
Yeah but we were also told there isn’t a lot of information just because my, my case was so unique a) having bowel cancer at such a young age,
And b) the fact that it had spread from my bowel to my leg, in the back of my knee. It was just such a unique progression that there really wasn’t much data or information out there so intuitively we just had to try and make a decision. We decided just to go with the amputation, before we did that we just needed another scan. This scan showed though there was something in my pelvis, and the lymph nodes in my pelvis were cancerous so obviously that kind of rendered the amputation pointless.
Last reviewed August 2016.
Last updated August 2016.