Ductal Carcinoma in Situ (DCIS)

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.

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. 

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.

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.