Being told about a bowel (colorectal) cancer diagnosis

There is no easy way to tell someone that they have cancer. However, many people describe their cancer experience as life-changing and the way in which they are told about the diagnosis can have a powerful impact on their state of mind, coping ability and future relationship with their medical team.

A few people felt that their doctor had broken the news in a compassionate manner. Stephen thought the surgeon gave the diagnosis sensitively and spent time answering all their questions. One woman describes such an encounter and explains how it helped her not to feel isolated by the diagnosis:

The diagnosis was a shock to Stephen but he thought the surgeon broke the news sensitively.

Age at interview 19

Gender Male

Age at diagnosis 15

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How was the diagnosis actually delivered to you? Did they,

Yeah we

Were you parents with you?

So we were in hospital for six days and then the surgeon said You can go home, for a weekend and take it easy obviously don’t do much cos you’re recovering from surgery, come back on Monday morning and well discuss the results because they’ll be back from the lab then.

So we came back took to a side room me, my Mum and Dad in the room and the surgeon and then there was a, I think hes a head nurse of the children’s ward. And the surgeon just went through what the results were, he did it sensitively as well he did a, objectively he told us the facts and we just went through it all. Just asked lots of questions, what’s happening next? What’s the extent of the cancer? What can I expect for the next however long? And so he told us the next step was to move to be referred to either [another hospital] to discuss chemotherapy.

Oh what were all your reactions then?

Obviously we were shocked, hugely shocked that at that age to get cancer but it was diagnosed post operatively which helped so it was kind of, You’ve got cancer but we think weve kind of took it all out. cos obviously it’s kind of a bit better and, and there was a lot of relief that we actually had an answer to what was wrong with me and it was kind of Oh we can get this out of the way then I can start back to normality.

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Her consultant’s way of breaking the news helped her feel confident about treatment.

Age at interview 54

Gender Female

Age at diagnosis 52

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About four days later when I went to see him I went in and sat down and he looked at me and he said “Weve got a problem.”

And I was actually very impressed with that because I immediately felt that I wasn’t on my own in this and I said “Is it cancer?” and he said “Yes.” And I asked him if it was operable and he said “Yes it is.” He said “I’ll tell you what I propose to do about it.” And he told me.

I asked him if there were any alternatives, any other options and he looked me straight in the eye and he said “No.”

And I completely trusted him, he was obviously very experienced and he made me feel that he was in it with me, which obviously, you know, I didn’t feel alone. And, and so I didn’t question it, I just decided there and then to go completely with it and to do what he said.

And I’ve never had cause to regret that. I still feel that that was the best option and, and I’m glad I went for it although I had to have major surgery.

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Other people said that the manner in which they were told was blunt but not unsympathetic, which they felt was probably for the best.

Unfortunately many of the people we talked to felt they were told they had cancer in an insensitive or inappropriate manner. Nowadays doctors receive more training and guidance on how to break bad news to people and this has helped to reduce the number of people who are unhappy with the way they were told their diagnosis.

The shock of having cancer was compounded for those who had received repeated assurances from their GP or consultant that what they had was certainly not serious and, in some cases, a product of their imagination. Many had gone to the appointment alone. One woman, whose GP and consultant had both been slow to act and unhelpful in their communication with her, explains how she never understood that a polyp could be cancerous:

She did not understand that a polyp could be cancerous and was shocked by her diagnosis.

Age at interview 65

Gender Female

Age at diagnosis 59

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So I came out of there with not a concern in the world, like thinking oh it’s only a polybus [polyp] like you know it’s nothing. Then that was on the Tuesday.

On the Saturday morning I got a letter from my GP saying “Please come up here at your earliest convenience because like I need to see you but don’t get alarmed about this letter,” which I didn’t because I’m still assuming it’s a polybus [polyp].

And I goes up there on the Monday morning, on my own because I didn’t think there was anything wrong and I see like the GP and he said to me I’ve had a letter back from the consultant and the surgeon [at hospital] and I’m afraid like you know it’s more serious than what we thought.

So I looked at him, I went “No, no it’s alright like I’ve got a polybus [polyp].” So (laughs) I mean I’m laughing now, I wasn’t then, he said “No I think were talking on crossed lines.” He said “you’ve got a Dukes C carcinoma of the bowel.” And I just looked at him and you know obviously I didn’t take it in and I just came out of there and I just walked round, like trying to sort it out in my mind.

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Having some idea that cancer is a possibility before diagnosis can help to reduce fear and uncertainty about what happens if cancer is diagnosed. One woman described being shocked when she found out but at least knew what would follow.

In some cases people felt that their personal dignity had not been appropriately considered. Several people described being slapped on the bottom by their consultant after examination of their back passage, or being told they had cancer while they were still undressed and on the table. One man describes such an experience and how it made him feel. A woman recalls being told she had cancer only after a group of medical students were given the opportunity to look at her tumour.

He felt his dignity was not considered when he was given his diagnosis.

Age at interview 70

Gender Male

Age at diagnosis 68

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And he referred me to the hospital for, for investigation, which turned out to be the sigmoidoscopy. Which is embarrassing but it’s not painful. The only thing that I would complain about was that I was told there and then, just sitting on the, on, on the couch. You know, it was all over, just finished, swing your legs round, “Just hang on a minute, I have to tell you, you have a tumour.”

How did you feel about being told in that way, you know, before you even had a chance to get dressed and get yourself together?

Well I think it, it came as a total shock, it was a little bit more afterwards that I felt, I’m sure I could have been told better, in, in a better way. And being able to sort of ask questions you know. I was just sort of dumbfounded. You know, “you, you, you’ve got a tumour, you need an operation. Thank you very much. Nurse take him away, help him put his trousers back on again and, and get him out of here.” That’s how I felt at the time. And I felt it was very poor.

If I could have cleaned myself up, got dressed, sat down, perhaps had a cup of tea with the doctor or the nurse telling me then, a bit more gently, not so, not so brutally, it would have been a lot better.

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Medical students were allowed to look at her tumour before she was told she had cancer.

Age at interview 33

Gender Female

Age at diagnosis 28

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I went to see my GP and she referred me pretty quickly after doing a rectal examination. She did it in the surgery and she actually said um “You know I’m sure its not cancer.”

And so I went alone to the appointment where I was actually diagnosed which I thought afterwards was a big mistake actually, but of course I didn’t know.

I then saw a consultant who did another sigmoidoscopy. But it was a pretty traumatic diagnosis for me because he had um, four medical students in the room and he showed them the tumour before he actually told me I had cancer. So whilst he didn’t say to them “This young lady’s got cancer” he, he was saying “Look at the wavy lines,” and, you know it was fairly obvious that they were looking at something quite unusual.

So it was after that that he told me from doing the sigmoidoscopy that I had rectal cancer. The consultant said “Well operate next week.” You know, he said sort of “Go home and cancel your papers and get someone to look after your cats and well operate on you next Monday.” And I was obviously thrown into shock at this point.

I think that having seen that I’d got cancer it was my right to know as a patient that, before medical students were given the opportunity to have a look. So I don’t think that they should have been allowed to look at that point without me knowing what was going on.

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A few people felt that the way they were told they had cancer was completely unacceptable. One woman received her initial diagnosis in a public ward and was then bluntly told she had multiple secondary tumours of the liver by the radiologist doing her scan. She describes the discussion with her consultant that followed. A man described being (wrongly) told he had only months to live by a surgeon – who then immediately left the room.

Her diagnosis of inoperable cancer was insensitively conveyed.

Age at interview 66

Gender Female

Age at diagnosis 64

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We were ushered into this tiny little room, which was more like a cupboard. I know facilities at hospitals aren’t very good but it was kind of perched on the edge of things and it was all where the nurses had their clothes and bags and things.

But the consultant just came in, and I mean I know perhaps they don’t like telling bad news but he said “I’m sorry but I can’t operate your liver’s far too bad. If we did operate the operation would kill you because of your liver as well and he said “I’m afraid there is absolutely nothing I can do for you.”

So I said “Well, how, how long do you think I’ve got to live?” So he said “Oh possibly six months.” And um, he didn’t say a lot else and I said “Well isn’t there anything I can do?” and he said well he would refer me on to the oncologist.

But it was all so cold and so hard. I mean, as I say, the sister and the junior doctor were quite caring and nice but it was all, it was all so traumatic and so sudden and so awful.

The consultant never even said “Well how do you feel? Do you feel ill? Are you in any discomfort or are you in any pain?” Nobody had asked me that at all. “How are you managing?” And I mean actually my symptoms just before that had been so bad it was uh difficult to go out because the bleeding had got so bad and the bowel problems had got so bad.

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Describes being wrongly told he had only a short time to live.

Age at interview 65

Gender Male

Age at diagnosis 64

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So this guy came in and he said “I’m ever so sorry er the cancer looks as if it’s er spread,” and he says “I think you’ve got a spread. It can be debris, it can be lesions, it can be scar tissue but I don’t think so.”

And he just went out, left us in the air, just like that.

I couldn’t hear any more. I was just like gob-smacked and just in a very bad state. And as far as we were concerned there was another surgeon, part of his team that was sitting on a chair next to me and he was sitting there with his mouth wide open because I could see that he couldn’t understand how a guy could relate like this.

And my partner was with me, she was, had her mouth open as well. Well someone must have, I think this guy who was sitting next to my partner walked out the room and sent him back, I think he must’ve sent him back.

He came back and he wasn’t much better when he came back and he says “If you need a second opinion I don’t mind,” and he said “but I’m around the whole of Christmas and if you want to see me you can.” And he said that “I think that you ought to go off and enjoy yourself as much as you can.” (laughs)

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Several people also recalled being left entirely alone after receiving their diagnosis. The woman who only found out she had cancer after a group of medical students were given the opportunity to look at her tumour explains how she felt when this happened to her:

She was left completely alone after her diagnosis.

Age at interview 33

Gender Female

Age at diagnosis 28

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OK he probably didn’t have a lot of time but there should have been a nurse available to, to sit with me for half an hour and just kind of, just talk or let me be upset or, whatever really, but just to sort of contain me in some way before I left the hospital.

And I think you know that person could then have asked how I was going to get home, did I need to call anybody. Because it was, you know, the fact that I was just sort of left in this really helpless and bewildered kind of state, but it felt like nobody cared about, really.

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A number of people said that their cancer was deliberately concealed from them or that throughout diagnosis and treatment the word ‘cancer’ was never mentioned. A woman who had bowel surgery but was never told she had cancer explains how she found out by accident and how this discovery might have saved her life.

A man who had an ileostomy as treatment for ulcerative colitis only found out years later that, in fact, he’d had cancer.

She was never told shed had cancer and only found out accidentally.

Age at interview 40

Gender Female

Age at diagnosis 29

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Because I had a keloid scar and he referredme to do some radiotherapy to minimise the scar.And he gave me a referral letter and I looked, I opened the letter and I looked, and I saw the referral mentioning carcinoma, and I said “Carcinoma,” I said “Isn’t carcinoma cancer?” because they hadn’t told me it was, he hadn’t told me it was cancer.

So I went back to my mum and I said “Mum this is carcinoma,” and I said “but he didn’t tell me it was cancer.”So I went back to him and I confronted him with it and by that time I’d figured he was a lovely GP, I’m sure he was very proficient, very well respected but he obviously was at the end of his career.

And I questioned him about it and his, his response was “Well I didn’t want to worry you,” which I just found just (laughs) I just found that unbelievable.

And so what I did, I went back to the army GP and I said “I need to see another doctor,” and so he referred me to another gastroenterologist and he took a look at the notes and he said that he didn’t think that there was a radical, that the section was radical enough and that he would recommend that I go back in and have a further section done.

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The reason given for concealing the diagnosis was always “not wanting to worry” the patient even though the information was sometimes relevant to a family history of the disease. Other patients found it strange and unhelpful that words like ‘blockage’, ‘polyp’, or ‘problem’ were always used instead of the word ‘cancer’.

A woman who did not hear cancer mentioned throughout her treatment explains how she never fully understood she had the disease until a letter arrived about a chemotherapy appointment.

A man who also was treated without the word ‘cancer’ being mentioned pointed out that people with a life-threatening illness might well want to put their affairs and personal relationships in order.

She went through diagnosis and surgery without hearing the word cancer mentioned.

Age at interview 60

Gender Female

Age at diagnosis 59

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No one mentioned cancer, I wasn’t actually given the words “You have got cancer of the bowel”.

“You’ve got a problem, there is something there” but they didn’t say “cancer”. And in my mind I didn’t think, I didn’t think cancer, I wouldn’t allow myself to go down that, that, that way of thinking.

Well, the night of the operation my visitors were there, the doctor came to me, he said “Weve taken your baby away!” It was so large the growth, that it was like a football. Still no mention of cancer.

And, I came out of hospital and had an appointment to return to the hospital.

At which time I saw not the surgeon but his understudy which is quite often the case I know and he said to me uh, he showed me what they’d done and he got the graph out, showed me what they, what they’d taken out. Still no mention of cancer.

He said that they didn’t know whether it, it would have gone any farther, so this then started ringing bells. If they thought that I should go on for treatment, then I would get another letter and give me a date to go.

I did get the letter, I did go and see the gentleman, very nice, chemotherapy. So obviously by this time yes, bells are ringing in my head. You don’t have chemotherapy for much else apart from cancer.

But no one had mentioned it in all this time.

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Several people felt strongly that health professionals needed training in appropriate forms of communication.

Since these interviews everyone diagnosed with colorectal cancer (also known as bowel cancer) in the NHS is treated by a team of experts in the diagnosis, treatment and management of people with bowel cancer. This team is known as the multi-disciplinary team (MDT). The MDT works together, sharing expertise, to plan and agree a treatment plan specific to individual needs.