Breast Cancer in women
Finding information about breast cancer
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.
Explains that information given by the oncologist was tape recorded for her to listen to at home.
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.
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, e.g. on lymphoedema.
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...
Explains that she sought out more information through the library when the shock of the diagnosis...
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, there's 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."
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...
Describes how, at first, she sought out as much information as possible but later read only what...
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.
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.
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.
Describes how she learned about an investigation which could affect the treatment she was given.
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 there's 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 there's 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.
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.
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.
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.
Explains that knowledge about breast cancer can reduce the fear.
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.
Last reviewed August 2018.
Last updated August 2018.
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