Finding information about breast cancer in women

Many women knew little or nothing about breast cancer before their own diagnosis, though women who worked in the health field or had a family history of breast cancer had varying amounts of knowledge.

Most women said that they received enough information from doctors, a few women saying that information about treatment was written down or recorded for them.

Explains that information given by the oncologist was tape recorded for her to listen to at home.

Age at interview 52

Gender Female

Age at diagnosis 48

View profile

And the first person I was taken in to see was an oncologist, consultant oncologist. And he explained that I had inflammatory cancer and that what the treatment would be.

And he taped the interview and said that I could take that away with me so that, because they said’ “We do accept that you’re not going to take everything in and this is helpful.”

So he explained that with having inflammatory cancer that they couldn’t operate at that point and they’d have to do chemotherapy.

And it he said it was going to be what was called a continuous infusion, and I would have a Hickman line.

I did try to find out when I got the tape and I transcribed the tape. I then, and I also got letters from my consultant to my GP, I asked for copies of the letters.

Embed Print Transcript

Breast care nurses were the most important sources of medical information for many women, as well as for reassurance about the emotional impacts. Some women said that they trusted the health care professionals, who cared for them and did not want or seek out more information.

Others, however, explained that they were not given enough information, or wanted specific information, for example on lymphoedema.

Explains how she searched for more information through contacts in the medical field and on the…

Age at interview 40

Gender Female

Age at diagnosis 38

View profile

Well it’s difficult to say now because I wanted to find out more about breast cancer, the treatment.

And so I just, when I needed any information I went, not to the libraries, I went to the internet if I’m not getting more information.

And I have been communicating with doctors in [country], America and Canada.

Whenever I go to the hospital and get these comments, send them a message and say “listen I went for this and it was said like this and this.”

So I’m going to get more tested to see whether I’m really, I’ve really recovered.

Embed Print Transcript

Some women explained that, when first diagnosed, there was only a certain amount of information they wanted or could manage. Some were wary or afraid of reading the information they were given, and one woman explained how she found more information after the initial shock of the diagnosis.

Explains that she sought out more information through the library when the shock of the diagnosis…

Age at interview 66

Gender Female

Age at diagnosis 64

View profile

When you’re newly diagnosed you can’t cope with much, in fact you can’t cope with anything much. And having to find out your own information as well, you know, it’s really a lot.

That has to be kind of weighed up with the fact that, I know this sounds awkward and difficult, but it has to be weighed up but the fact you only want to know a certain amount.

But as the months went by I did want to find out much more. I shied away from reading any articles about it for a long time and then I started to read things. I went to the library, I’m a great library fan and have been ever since I was a child.

And I went to the library and I found one excellent book on breast cancer, in the library in [place] actually, I’m damned if I can remember what it was called, it wasn’t a very big book. But it was very good and very helpful. I used to flick through, theres quite a lot in the libraries, but I flick through them and if they look particularly frightening I think’ “No, no I can’t read that.”

Embed Print Transcript

Some women described how they initially looked up as much information as possible but later read only what they needed. Many discussed reading leaflets and booklets produced by cancer charities and self-help groups.

Describes how, at first, she sought out as much information as possible but later read only what…

Age at interview 62

Gender Female

Age at diagnosis 48

View profile

First of all after, immediately after, I decided I wanted to know all I could about breast cancer. So I cut out things from the paper, I listened and then I became a volunteer, all the information that was available.

And gradually, or quite quickly, I decided no I’d stop because it’s this, a little knowledge is a dangerous thing. I think that’s taken somewhat out of context but I felt that the less I knew, the better, as long as I knew enough to help and could talk about my experiences.

I felt you could know too much, especially talking to other women because you didn’t know enough and you could say something and do damage. So I’ve stopped really.

I know where to get the information but I’m not hung up on the information.

Embed Print Transcript

A few women said they had found books helpful, while others used the internet to find more information. Many of them praised the information available on the internet, and one woman described setting up her own website on inflammatory breast cancer. Another explained making treatment decisions after using the internet. Internet forums were also important, especially for women who wanted to read or hear more about the experiences of others.

Explains that she sought out information on the internet and later set up her own website about…

Age at interview 47

Gender Female

Age at diagnosis 46

View profile

But after my mastectomy I felt that I needed to know what inflammatory breast cancer was all about and why it was that I had to have chemotherapy before mastectomy and why it was everybody was panicking around me, you know, all this.

So I started to research on the internet and I joined a support group called IBC Support.

I learnt as much as I can about inflammatory breast cancer, about how it happens, what mitosis and meiosis is all about, the symptoms of inflammatory breast cancer and how to cope with it, the prognosis, the histology of it all, everything.

I’ve learnt an awful lot. Maybe too much time on my hands, may be not, I don’t know but I needed to know. Knowledge is power and I needed to know that what was happening with me was the right thing. It turned out it was.

I’ve also set up my own website which has gota lot of helpful things on there for people with IBC or breast pain in general, just to rule out that they haven’t got IBC.

They can chat live on there. They can post a message to the forum. They can see photographs of other people who are surviving and doing nicely thank you very much. And generally have a lot of information at their fingertips.

Embed Print Transcript

Describes how she learned about an investigation which could affect the treatment she was given.

Describes how she learned about an investigation which could affect the treatment she was given.

Age at interview 56

Gender Female

Age at diagnosis 54

View profile

It’s an organisation called Can Help and they have a website.

He did a report for me that told me about something called sentinel node biopsy, which was a way of avoiding the very serious lymph gland operation. They simply inject a radioactive dye into the tumour and then they track it with a radio isotope. And this is quite painless. It’s just watching something on a screen. And theres a dye injected which wasn’t nearly as painful as the fine needle biopsy. And if the radioactive dye drains out, it will go to the first lymph gland, that’s called the sentinel node.

And then the next day when I had my surgery they – with a little Geiger counter – they go straight to this lymph gland and they do a cytology, then and there, in the operating theatre. And if it’s negative theres no way it can have spread to the rest of your glands, and that avoids major surgery.

I persuaded him, because it was part of a trial, that I didn’t want to have the lymph glands removed after and he agreed because he considered I was sufficiently well informed.

And I think it’s so important not to be bamboozled by doctors into the first set of solutions, they panic you into having major surgery that perhaps isn’t right for you.

Embed Print Transcript

Some of the women we interviewed questioned the accuracy of the information available on the internet. Several women felt that, while there is a lot of information on breast cancer, much of it deals with the medical rather than the emotional side of the disease. Some of these women wanted to know more about the emotional impacts, and the personal experiences of others.

Explains that she wanted information on the emotional rather than medical aspects of breast cancer.

Age at interview 27

Gender Female

Age at diagnosis 24

View profile

I felt I’d got all the information I needed from this breast care nurse particularly, when she explained to me what was going to happen and what was going on, just in my case. And I think I read a couple, you know, I read a couple of things.

Now if I see anything to do with breast cancer I’ll pick it up and read it. Or cancer generally, I will read it. But at the time it, that wasn’t what I needed.

It wasn’t information, it was more sort of, I don’t know, emotional sort of side of things that I was, I was after, and that’s what I put my energies into, rather than the factual information.

What I was looking for, I wanted to talk with people who had been ill and who were better, that’s all I wanted to hear about. I wanted to get to see the other side, and I didn’t want to sort of know about the in-between bit.

Embed Print Transcript

Some women praised the support and information they had received from patients or friends who had experienced breast cancer (see Support groups). Others had received information from family members. One of these women explained that her only language was Punjabi and she relied completely on her children for information and translation.

Comments that her children translated and explained information to her.

Age at interview 70

Gender Female

Age at diagnosis 60

View profile

Before you went into hospital, were you given anything to read in Punjabi?

No, nothing. It was an emergency. There was no time to read anything.

And the way things were, growing up in 1944. In 1946 I was 14 years old. There were no schools for us. I never even saw a school. I know Punjabi, but I can’t read very well. We learnt bits and pieces at home but I’ve forgotten all that now.

My children explained everything to me in hospital, but they’re well educated. That’s how it was.

Embed Print Transcript

One women explained how reading leaflets had taken away some of the fears she had had about treatments, and some women recommended finding out as much information as possible in order to gain knowledge and reduce fear.

Explains that knowledge about breast cancer can reduce the fear.

Age at interview 56

Gender Female

Age at diagnosis 54

View profile

Well it is an emotionally draining and terrifying experience. But the emotion and the terror receded as I became more knowledgeable.

So you combat that with empowering yourself with knowledge, getting to know and confronting what is happening to you. And that power takes away the fear and takes away the stress because when you’re actively participating in your cure that solves that problem.

But it isn’t easy and there are times when you, you do crumble. But it is transient.

The only important thing about hardship, my grandmother told me, is that it always passes on.

Embed Print Transcript