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Breast Cancer in women

Support groups for breast cancer

Many women discussed their reasons for joining support groups, and stressed the importance of talking to others who had been through a similar experience. Sharing concerns, fears, information and practical support were some of the key reasons for women being involved in self help groups. A few women also mentioned the informative occasional talks given at group meetings by surgeons and breast care nurses, and a few women discussed their involvement in support group fashion shows.

 

Explains how involvment in a self help group helped her realise that her own feelings about her...

Explains how involvment in a self help group helped her realise that her own feelings about her...

Age at interview: 76
Sex: Female
Age at diagnosis: 52
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Actually what we did, we all sat round in a circle and somebody said it would be an idea to go round the circle and find out what had happened to everybody. And we were absolutely amazed at how many things had happened, to different people, had happened to all of us.

And a lot of the feelings we'd got, the feelings of despair, the feelings of not being clean even.

Stupid feelings that we all, I mean you can see with hindsight, I suppose in some ways were justified through what had happened to you, but on the other hand if you'd had somebody to talk to, to know that this was a natural feeling or something that was happening to you it would've been better.

It wouldn't have had half the impact on you. You wouldn't have got so many, you used to get very upset about things and for no reason. And as I say, if you'd had somebody to talk to that would've been better altogether.
 

Some women said that talking with other people helped to dispel myths and reduce fears about breast cancer and its treatments. One woman described her involvement in setting up a self help group over twenty years ago, and another discussed running a support group aimed at younger women affected by breast cancer. One younger woman explained that her disappointment with treatment had encouraged her to start up a support group on her return to her native Africa.

 

Describes setting up a self help group and some of the benefits.

Describes setting up a self help group and some of the benefits.

Age at interview: 71
Sex: Female
Age at diagnosis: 43
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There was little recognition of the emotional needs of the person. Little recognition of the need to share and talk things through. And I found it difficult, at that time (you've got to remember we're going back 28 years) to be able to chat to people or listen to them as I would have liked.

But that, as I say, was the system in at the time. And despite a bit of opposition I suppose at the time we did establish this group in Coventry. And it quickly became self supporting.

So that the students had done all the hard work to set it up, they'd organised the initial meetings and then we found that we could carry on on our own.

They all felt they would have recovered, particularly emotionally, from the trauma of having the, it was mostly mastectomies then, if they'd had someone to share it with and somebody who understood. And somebody who was not emotionally involved in the family.
 
 

Comments on the support group she runs for younger women affected by breast cancer.

Comments on the support group she runs for younger women affected by breast cancer.

Age at interview: 34
Sex: Female
Age at diagnosis: 30
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The group is called the Young Ones and it was formed in October 2000 by Rachel Farron who sadly has died since from a re-occurrence of inflammatory breast cancer.

And we meet once a month, we have a coffee, we have a chat. Occasionally we have guest speakers, events. We do fundraising as well obviously to cover the running costs of the group. And the events aren't just to cover the running costs they're also to raise awareness of the fact that we are there as a support group and there are other groups in the area that we work alongside that support women with breast cancer.

And the group is open to families and friends and children to come along as well. And occasionally friends of members will come.

I think being younger as well does give us another thing in common because at different age groups obviously your experiences are different. The things that you want to talk about can be different. Like I said, how your sex life may be affected, how your children may be affected.

 

Explains that disappointment with her treatment has inspired her to start up a support group.

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Explains that disappointment with her treatment has inspired her to start up a support group.

Age at interview: 40
Sex: Female
Age at diagnosis: 38
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Of course I feel this whole cancer thing, the NHS here has disappointed me. They let me down and they've not just lowered me to the level of a beggar they've kind of destroyed my life. I have to go and start from scratch again.I'm going to start a support group of cancer, helping people.

Help them fight their battles if there's things like this happening. To help them realise that there's a life after cancer. And that you can talk openly about cancer. How to deal with their pain. To help the families cope. And to help them maybe with visits to the hospital.

But if you tell them that' "I was there. I was diagnosed with cancer, went through this," they will listen more and they will trust you. Better than even the doctors because that's what I've realised. You trust your fellow sufferer more than the doctors.
 

One woman described the support she received from her group with form filling and financial concerns. Another praised the information and advice she received, but also described having to face the death of group members from time to time.

 

Describes the help she received from her support group with form filling and financial concerns.

Describes the help she received from her support group with form filling and financial concerns.

Age at interview: 57
Sex: Female
Age at diagnosis: 54
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I think while you're between your diagnosis and the time you're in hospital, if you haven't been in a job long enough, you're only paid at least three months, I think it is, full pay, probably a few weeks or months half pay.

Then you have to get onto someone to help you or not. This is where Cancer Black Care was there for me because they fill out the forms. They do most of the phoning around. And they make sure that I was looked after in that way.

Because if you've got problems, if you've got worries, it doesn't help your situation. It doesn't, because you're worrying how you're going to pay the bill, how you're going to feed the children, how you're going to do this.

As I say [name] fill out my forms for me. They try and help me as best they could.
 
 

Explains some of the benefits and difficulties of being involved in support groups.

Explains some of the benefits and difficulties of being involved in support groups.

Age at interview: 41
Sex: Female
Age at diagnosis: 39
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We're all able to share our fears, our highs, our lows, our information gathering. We all watch out for each other in that if we find anything of interest that may help somebody then we use it.

The vast majority of us keep folders on information that we gather and we exchange books and all sorts of things and we do have a good time, we do have a good laugh. A lot of those ladies now I would say that they are very dear to me.

We lost one recently and of course this is the reality of the disease. We will lose particular people along the way. We are sympathetic, we miss her. And I say a prayer for her because that's as much as I can do at this point in time.

But we know that we gave it our best shot whilst she was with us and that it's not us. This is the reality of the situation and this will happen. It's the nature of the disease.
 

Several women explained that they had not joined support groups because they had plenty of support from family and friends. Others said that they preferred not to dwell on their experience of breast cancer or to make it a main focus after recovery.

 

Explains that she did not join a support group because she did not want to dwell on her illness.

Explains that she did not join a support group because she did not want to dwell on her illness.

Age at interview: 50
Sex: Female
Age at diagnosis: 48
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I never really felt I needed to go to a support group. I think there is one locally.

But I could get to all the information I needed - I can search the web and I've got access to medical libraries - so I didn't really feel there was any need to get information.

And I was getting enough support at work and at home. I didn't really need to join a group.

But in some ways I don't know that I'd have found it helpful. Because I didn't particularly want to dwell on having cancer. I wanted, it was part of my life, but I wanted to go on living the way I had before.

So I didn't want it to become that important a part of my life. So it was trying to keep it in, just as another part of my life but not making it a specially big part of my life.
 

Some women doubted the benefits of support groups or felt they were not the sort to join them. Other women had not known of any local groups when first diagnosed and several said that, although they were aware of local self-help groups, other commitments meant that they were too busy to join.

 

Explains that she didn't find other women's stories of their cancer a source of support.

Explains that she didn't find other women's stories of their cancer a source of support.

Age at interview: 66
Sex: Female
Age at diagnosis: 64
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I went to a breast cancer support group in [place] and I went to one in [place] and I was very wary of going to these because I thought' "I don't want to sit around with a lot of women talking about everything."

The women were extremely nice at both of them. And I suppose it was comforting to look at other women who had had mastectomies perhaps, one 17 years ago. Really I mean they're nice women, and they have interesting speakers, and, you know, they're friendly. But how can they offer you support when we've all had it and we're all wary of each other - to a certain extent? And there's nobody that can say to you' "Fine, you're absolutely cured. "You're never going to have it again." And we all know that.So they're not really support groups.

They're friendly social groups where, as far as I can see, yes the Macmillan nurse will answer your questions and that's fine, but I didn't want to delve too much into these other women's histories because I didn't want to hear a lot of it. And others must feel the same as me I'm sure.
 

Several women that had not joined a support group had kept in touch and formed friendships with other patients they had met in hospital, which they found supportive. One woman described how a support group she was involved in had folded, and a few women did not join support groups because of the travel or cost involved. Two women found psychotherapy and writing, respectively, to be outlets for their emotions, negating the need to join a support group.

Last reviewed August 2018.
Last updated June 2010.


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