Janet - Interview 30

Age at interview: 68

Age at diagnosis: 60

Brief Outline: Janet was diagnosed with DCIS in 1997 after a routine mammogram and had a recurrence in 2003. She had a wide local excision and radiotherapy in 1997 and a mastectomy in 2003. She was also prescribed tamoxifen then.

Background: Janet is a retired NHS secretary and divorced. Ethnic background / nationality' White British

More about me...

Janet always attended for routine mammograms and, on one occasion, was recalled. Because the doctor was concerned that there could be a problem, she was given another mammogram six months later. After this mammogram, Janet was diagnosed with DCIS, and had a wide local excision and radiotherapy.

 

Janet had annual mammograms after her diagnosis. Six years later, more DCIS was found and she had a mastectomy and some lymph nodes removed, which were clear. She was also prescribed tamoxifen. Because tamoxifen may increase the risk of cervical cancer and Janet had had some cell changes in her cervix, she was having regular cervical screening.

 

Janet was shocked when she was first diagnosed with DCIS because she had had no symptoms. Having a recurrence in 2003 was also shocking though, on both occasions, she said the health professionals were very reassuring. She found it comforting to know that DCIS is precancerous, and also had a lot of support from her daughters. At the time of interview, Janet was waiting for a prosthesis that had just been ordered.

 

Janet was interviewed for the Healthtalkonline website in 2004.

Seeing the x-ray convinced Janet that something could be wrong even though she had no lumps and felt fine.

I was going for the screening every three years in the Sainsbury’s car park in the van, mammogramming, which I dreaded and almost didn’t go sometimes because I thought “oh, there’s no breast cancer in my family.” And I just felt it was the last thing that would happen to me. So I was pretty shocked when, let me think, late 50’s I suppose I was, yes, it was late 50’s when they called me back and showed me on the x-ray that there were things that looked like grains of salt. And they said it could be a pre-cancer condition or it could be calcification due to old age. So go away and forget it for the six months and come back again, which I did.

 

And much to my horror there were many more grains of salt on the next x-ray which, because I couldn’t believe that I would get cancer, but that convinced me. Seeing the x-rays was very helpful to convince me that actually there was something wrong because I couldn’t, I felt fine. No lump or anything.

Janet was shocked when she had a recurrence of DCIS. She had a mastectomy and was pleased to hear there was still no invasive breast cancer.

I was taken in quite quickly to the local hospital to have a, you couldn’t call it a lumpectomy because it was pre-cancer, it wasn’t a lump. But they took about a tablespoon of flesh away and so I recovered from that. But then had a mammogram every year after that which … So that held good for six years and then this year, blow me, there it was back again, same breast, pre cancer.

 

And so the consultant, who was the same man who had done the original taking away of a tablespoon of flesh, said I could either have another tablespoon or so taken away, or just have the whole thing off. So I said “oh, for heaven’s sake, take the whole thing off, wouldn’t you like to take the other one as well?” and he said “no, not necessary.”

 

So there was no discussion about that and I still think maybe while we were at it we should have had them both off. I don’t know. So that brings me up to the tamoxifen because I’m glad to say after the operation they took some lymph and tested it and couldn’t find anything and he said “what they have taken away with the mastectomy was still all pre-cancer, quite a lot of it apparently, but still pre cancer.” Which is reassuring.

 

But, I think having to sit there and wait, my appointment being 1.30, seeing lots of other people being called into the big man and not me and it was getting to 2.30 and then 3 o’clock and I still wasn’t called. And I went and asked and said, you know “am I going to be soon”? In fact, he did, he came out and said to me “sorry you’re being kept such a long time, but I am just waiting for someone else to come before I see you” and I thought “oh, why does he need somebody else.” So that made me a bit worried and then, so he saw absolutely everybody. The room was completely empty by the time he came and called me and instead of being called into his office where I would normally be seen, he took me into a room with a pink settee and a coffee table and a box of tissues on the table. And I thought “oh, this looks like bad news” [laughs] and of course he’s got the breast nurse there. That’s who he had been waiting for. So then he said, that’s when he said “Now look I’m sorry but, you know it’s, it is pre-cancer again” and …

 

In the same breast?

 

The same breast and then he gave me the choice of doing another tablespoon or the whole thing off. So I was able to be quite OK when he was telling me this. Although I was really shocked, and so he gave me the bad news and I said fine take the whole thing off and so, he was fine. But he had obviously got a lot to do. So he couldn’t spend a long time and off he went and he left me with the breast nurse. And so as soon as he had gone and she said “how do you feel about this”? That’s when I started to cry, so that’s what the box of tissues obviously were for. And I was surprised at myself because I don’t usually cry and I felt very sorry for myself and I did wish I had taken one of my daughters for the news. But anyway, after that I was fine I got used to the idea.

Janet didn’t like the thought of reconstructive surgery. She said that, because she has a small breast, she is happy wearing a cumfie or prosthesis.

Did they offer you reconstructive surgery?

 

Yes they did. In fact the surgeon was very keen. But I just thought “oh, no way.”

 

What were your reasons?

 

[Laughs] The thought of, I think it was taking flesh from my collar bone, bringing it round and … Oh no and in the end you’d end up with a breast that wasn’t yours, but didn’t feel like a breast particularly I wouldn’t think, and the business of making a nipple. Oh! No way. I’d rather have nothing.

 

How did you feel with the prosthesis? Did you find that heavy or comfortable?

 

Yes, well this is it. I’ve still got the thing called the cumfie in today. I mean, I’m very small and I think this is why it’s been less of a trauma. Because losing one small breast and being left with one small breast isn’t such an awful thing as if you’ve got lovely big ones and one gone would be an awful lopsided effect. So all I needed is this little bit of kapok in this thing and I can go about in my normal clothes.

Janet got all the information she needed from her breast care nurse, including the title of a very helpful book.

Did you feel like looking for information?

 

Questions, questions. Oh, that’s right I got a big book, somebody Love’s book, Dr Love’s Breast Book. Now how did I find out about that? I’m trying to remember, because I didn’t, the local library didn’t have it. So, I went to [place name] Library who had got it, this big fat book. And it is an American book written by a woman surgeon, everything you could possibly want to know about breast problems and how to deal with them, very up to date information. I know you’ll want to know where I heard about this book. Ah! Breast nurse gave me a list of reading matter and it was quite a long list. But I’m glad I picked on, I only read this one book and it was very helpful. It answered, really, all the questions that I had got about absolutely everything that I could think of. So Dr Susan Love’s Breast Book I think it was called, yes.

 

And that looked at benign conditions as well?

 

As well, yes and clear drawings, some photographs and clear diagrams and drawings of various problems. And so, and it talked about one of the latest things being putting die into your lymph system, so that it makes it easier for a surgeon to see which lymph nodes to take out. But it reduces the amount of lymph nodes you’re going to have to have taken away for testing.

 

Have you got any other questions? Or over the years have you had any questions about breast cancer or pre-cancerous cells or surgery? Any questions that at the time you wished you had an answer for? Or even now, things that have never really been answered?

 

Not really. I think reading this big fat book made me think it had covered everything. I mean most of the time I forget about it, you know, I don’t want to think about it. That’s the trouble I don’t want to put my head in the sand. So, but I can’t think, I know I could have, the breast nurse has been very good over various queries that I had. She seems to have got a lot of experience.

 

So you can ask her anything?

 

I can ask her anything any time. She’s very accessible, yes.

Janet says she had small breasts so is happy using a cumfie. She is waiting to get her prosthesis, which might be heavier than her cumfie but a better shape.

I am waiting, again the Breast Nurse has been very helpful about where to get special bras from and what sort to get. Because before this I didn’t wear a bra, I was so small I didn’t wear a bra. But it’s had a good outcome because I’m 68, I’ve never worn a bra, so my tiny little boobs that had started up here as small as they are, have gradually sort of worked there way down to here [laughs]. So that now in order to wear this cumfie thing to give myself some shape I have to wear a bra in order to have somewhere to put this thing. So I have been to Marks and Spencers and got their sort of support built in sports bra which has had an effect of lifting my little remaining one up and so I’m sort of looking a bit more perky [laughs].

 

But I am waiting for the prosthesis that she has ordered, the very smallest that they do. But I felt, she showed me one, and I thought it’s, felt rather heavy, felt a lot heavier than what I’ve got here. But anyway we are waiting for this double AA whatever it is to come [laughs] and I’ll try it out. But really I am quite happy with this little kapok thing but it’s not, I’m sure this prosthesis that we are waiting for is a better shape. I mean it really looks and feels just like a proper breast so I will try it out, yes.