Support from other women with DCIS or breast cancer
When people receive a diagnosis they often want to know what it has been like for other people who have been through it – this is, of course, one of the reasons that this website was set up. Many of the women we talked to had very much wanted to find out how others had dealt with DCIS, how they had made sense of having a ‘pre-cancer’, how they had made decisions about treatment and what it was like to have a breast reconstruction.
Some of the women we talked to sought out other women with DCIS on internet support groups, forums or through breast cancer charities. Many of them found talking to other women who had been through something similar extremely supportive and informative. One woman described the internet forums as ‘the best thing’ which helped her after she left hospital.
Linda is a married teaching assistant with one adult child.
Ethnic background / nationality' White British
I went to see the oncologist six weeks after the operation, and then there’s been nothing. Admittedly I can phone her any time I want, and she’s only on the end of the line, I can phone her, and I have done, if I’ve been a little bit worried about anything, but otherwise no, that’s it you’re left to get on with it. And I find the best thing is the websites, where we all support each other, because you can’t help worrying about any little thing that you get. I mean I do read about some awful, awful cases. And then, you know, the slightest pain I’m thinking, right have I got bone mets now, though I know it can’t be because it didn’t spread, it didn’t spread into any of my body, so I know it can’t be. But you can’t help thinking things like that, its human nature.
Sometimes women decided that they would like to offer support to other women who are going through diagnosis and treatment. One of the women we talked to was offering support to other women with DCIS via Breast Cancer Care. Another had set up a support group with another woman who she had met in a chat room. The group supports women who are facing breast reconstruction with information and the opportunity to see (in private) what a reconstructed breast looks like.
Beverley is married with two grown up children.
Ethnic background / nationality' Mixed Race
One day she said to me, “We need a support group for this.” Because we realised that when it came to reconstruction it's an awful lot to try and take in. There’s a lot of different options, a lot of different operations and there's so many questions. And all you get is half an hour with the surgeon. And OK they've got a reconstruction nurse but you don't feel that you can keep ringing her up and saying, “But what about, and what about this.” And there are so many questions you've got that we decided that we would start up a support group, which has gone absolutely potty. We have at least, well we had fifty-four people at the last meeting.
That’s for your local area?
Yes, just for [place name] around here. Yes, and it's really just gone mad and we have a speaker and we, afterwards if people are waiting to have operations, want to see what a reconstruction can look like we’ve got some ladies who will show them what the reconstruction will look like. We go off to a separate room and they can go and view and see what it's going to be like. We show them immediate and delayed reconstructions and they can an idea. And we'll talk about how we felt and because most people worry that they’re going to be in a lot of pain after the operation, which is, they don't let you be. So, you know, any sign of you feeling in pain and you've got morphine and you're OK. And a lot of people then get worried about, well particularly with my operation whether you can stand up straight or not very easily for a while afterwards. And OK you may look like an old lady for about a couple of weeks but after that you're OK. So, no, it's in some ways it's weird but it's been quite a positive thing.
Some women said they attended breast cancer support groups. There are many cancer support groups in the UK – some run by professionals and some by patients. One woman who accompanied her friend (who had stage two breast cancer) to a support group said that she was pleased to have discovered that support groups exist, although she did not think that it was what she needed at this stage.
One woman said she was wary of attending a local cancer support group because it included people of all ages, both genders and all cancers. She felt that she would prefer to discuss her DCIS in a women only group. She contacted the mother of one of her son’s schoolmates who had had breast cancer and found that the other mothers she knew were very sympathetic. She thought other women could relate to what it might be like to have breast cancer, although she thought it was hard for men to understand how important it might be to women. Another woman, who wanted to find out what a reconstruction might be like, said it was ‘terrible’ that her local hospital did not run a breast cancer support group.
Some women explained that the differences between DCIS and invasive breast cancer meant that only other women with the same diagnosis could truly understand how they felt. A woman who had contacted other women with DCIS discovered that they all shared a feeling that they were ‘frauds’ because they did not have ‘real’ breast cancer.
Eileen is a retired writer and single.
Ethnic background / nationality' White British
It's so important to create ways for women with DCIS diagnoses to be able to get in touch directly with quite a number of other women who've had DCIS diagnoses. That is what we most need at the time of our greatest shock and trauma, and I'm sure, like me, that most, many women who've had a DCIS diagnosis, would be very happy to talk to other women who have just been diagnosed, just to tell them what it was like for them, where they got their information and how they dealt with these kinds of things. And to know you're not the only one who feels in utter confusion, at feeling not relieved at having had it found and not always telling you that you should feel lucky and a success and fortunate, when you are feeling terrible, but also feeling guilty that you're not grateful for having had it found when everybody else is upset because they've had an invasive breast cancer. And particularly women who have had all the original surgery and treatment and then they've had secondary cancer. It is extremely difficult to know how to relate in conversation with such women.
Busy breast clinics may not always distribute information about local or national support groups or recommend websites to women with DCIS. One woman only found out about her breast care nurse when she contacted Breast Cancer Care – no-one at her hospital had put her in touch with either the nurse or the local support group. She concluded that there should be an information pack for all women when they are diagnosed.
Pauline is a married teacher with one adult child.
Ethnic background / nationality' White British
I joined the support group in our area, which funnily enough I found out about from Breast Cancer Care, who actually put me in touch with my own breast cancer nurse, [laughs] which I thought was quite amusing ‘cos I, that was the way I found about it, nobody again at the hospital told me.
And this was where, reference earlier conversation, I feel there’s a lot the hospital could give you that I found out about myself. E.g. the support group which I found out about through Breast Cancer Care. The hospital did give me a Breast Cancer Care leaflet which got me in touch with Breast Cancer Care. But there were other things where I think perhaps they could give you the information, a little pack with information about websites, about aftercare like the reflexology they provided after radiotherapy, which I came across purely by chance on a leaflet stand. I feel all those things would make life a lot easier if that was in a nice little pack and handed to you, and you could take from it what you wanted and ignore what you’re not interested in.
When would be the best point to have all this information?
I think probably initially when you get your pack, I mean certain hospitals do give you leaflets. I think initially you probably just need information about what’s happening to you. But certainly when you get to the point where you are going in for major surgery, I think that’s perhaps where you need addresses, you need sites that you can link on to on the Internet.
And things like the aromatherapy or reflexology after radiotherapy could be given to you at the time of radiotherapy; so that there's a sort of staging of getting leaflets, otherwise you might feel a bit inundated if you got a huge amount. But as and when they’re relevant I think.
Women were sometimes happy to manage with the support given to them by their friends and families and the information provided by health professionals. They felt no desire to talk to other women with DCIS either face to face or on the internet. One woman said that there was never a time when she thought ‘I can’t cope with this’ and another that she had thought about joining but did not because she did not want to spend ‘the rest of my life talking about my left breast’.