He said Come for the results of the test, it’s positive and it’s spread throughout the milk ducts and there are no options in the surgery, the whole breast would have to be removed. And he could offer the operation tomorrow or next week. He described the procedure [reading from papers] and also would remove 4-5 lymph nodes which would be tested to see if any cancer cells has spread to them. He said if there was, he said if there were any need, they’d look for any need for further treatment and [my husband] asked if it were already cancer or a potential i.e. something leading up to cancer. And the surgeon said no, it was cancer.

So that was said. I got [my husband] to go through that again with me and sometime later, because I was having this trouble getting it, thinking that I’d just had an operation for nothing [laughs].

So he told you, did you get any time to speak to the breast care nurse?

Yes, yes and she gave us an information pack and this photocopy of what DCIS is.

Did you read the information pack?

Oh yes. But we decided, not until I got home. We made the decision about the operation first.

There and then?

We had to do that there and then. We had to tell them. And she went off to get a bed and then once we got home because I then [laughs] only had a limited amount of time in which to get ready, so I put some washing on [laughs] and then, and I did sit and read the stuff that day.

So they said you will make, you must make the decision there and then?

Yes.

And did you and your husband discuss that alone at any point.

Yes.

Yeah, In the hospital?

And I said delay. And my husband said No, it’s cancer, you don’t delay and I said well what’s another week? And I really, I really felt quite pushed.

Yeah, pushed both ways from your husband and the medical.

Yeah, yeah, I really felt that I would have liked a bit more time, really. And I’ve got that written down somewhere [laughs].

Yeah, your feelings at the time?

Mmm.Yeah.

You had to make a decision very quickly so.

Yes and you, it’s not like you could say, like if it was a tumour you’d be able to say, – I think you’d know more and certainly you’d have, because you’d have felt the lump yourself more than likely you’d have had more time to adjust and I think that is a big thing. I, it felt like a whirlwind. We called it ‘fast-tracking. That was my word for it because that’s how I felt I was being pushed, yeah. They’d have had me out of hospital a bit quicker as I say, which they could have done, which I understand, I appreciate that they need the beds but on the other hand you need time to adjust as well.

Really, when you get diagnosed, you go through swings and roundabouts. Well I did, and I think a lot of women do that, you start immediately grieving for your breast but you just want to live.

Yeah. Just take your time.

[Tearful] So, no I was, I was very frightened.

Of course.

More so about the anaesthetic. I have a very low pulse rate, an unhealthily low pulse rate and BP and I always crash. I’ve had a few operations in my life, various little things and they always have a problem with me in recovery. So that was what worried me, because it was like a six-hour operation. And I was desperately worried about embarrassing myself. You know, that they would have to put me in a straight jacket to get me down there. Because I just didn’t want it to be happening. But I was fine.

I cried when he put, my best mate [friend’s name] came with us as well and [my partner] to the hospital and when he was marking me up that’s when the tears started then. But they don’t give you a pre-med up here. Well, at least I didn’t get one. I did ask for it, but they said no, couldn’t have that. Maybe that was because I didn’t want the operation, I don’t know. But anyway, so I went down but I was actually joking with them before. But that’s just the way I am when things are difficult, I’d kind of tend to joke about things. And then woke up afterwards and that’s just been it. You just have to get on with it after that.

Yes. And a lot of woman said before having surgery, often it was the very first time that they’d had surgery and they were worried about having a general anaesthetic for various reasons. Is there anything that you could say to reassure women who are worried the day before surgery, or leading up to surgery, about anaesthetic?

Well general anaesthetic where patients go to sleep to have their surgery is extremely safe. And it’s extremely safe particularly in this patient group who are having what is called elective surgery. They’ve got a problem and it’s planned that they’re having an operation for it. And therefore they’re usually assessed beforehand to know that they’re in medically good condition to have their surgery. And the number of times that a patient has problems with general anaesthetic that is severe in that kind of situation are extremely small. I think statisticians have worked out that the risk, that the drive to the hospital often may be greater than the general anaesthetic that you’re having.

So the anaesthetic sometimes can be different for patients who have come in as an emergency, after a road traffic accident or when they’re ill for other reasons, which is very different from the lady coming in to have a breast operation. So we wouldn’t see, year on year, any instant of a severe problem after a general anaesthetic for a breast patient.

Yes. Can there be smaller kind of reactions, like some of the women said they woke up shaking or shivering a bit, or vomiting.

Yes, I think that those types of things can happen. A lot of ladies often had experience in the past of having had an operation for some other reason, and the anxiety as well before the operation sometimes means they’re a bit nauseated afterwards, cos all of us as humans are complex individuals, so rather than it just being the drugs, it can be the mental state or the emotional state which affects everything. But, by and large, most patients tend to find things very straightforward and as a reflection of, like more and more these days people go home the same day.

After a wide local excision?

Yes. Yes, and occasionally in some parts after a mastectomy with drains in perhaps. But they recover very quickly. they’re usually able to meet their loved ones later on that day and they’re feeling relieved that everything’s alright.

On the day of the operation I hadn’t really, I hadn’t really cried. I’d had one day when I’d got upset because of everything else that had gone on and I just thought, Oh, one more thing, I can’t cope But on the day of the operation I just broke down as soon as I saw the nurse. And I cried when I saw the nurse. I managed to bite my lip when I saw the doctor who was assessing my health, and then by the time I’d got to see the anaesthetist, and he was talking to me, and he said, You’re not looking at me And I just burst into tears and said, I can’t do this anymore, I don’t want to, I just don’t want it And he was stroking my head, he was being really kind and my husband was saying, She’s been so brave till now

And then when the surgeon came into the operating theatre to say good morning, or into the little ante room, even then, just started joking with him, I couldn’t, couldn’t say, Just don’t do it, I don’t want to do it, don’t want it

And then I coped okay with the mastectomy to be perfectly honest and because I’m, I like my sport, I was doing my sport anyway, you know, I managed to just get on with it.

I had my appointment for the 4th of December for my operation on the 5th. Again I was a bit worried because I’m sixty-seven. I’d never had an operation before. How am I going to cope? And little things like I’ve got false teeth. And I’ve got to take my teeth out and things like that [laughs]. Which I know is silly but, you know. Anyway the day came for me to go in. My temperature, my blood pressure went sky high. And I’m thinking oh they’re not going to do the operation. Anyway all that was levelled out.

And then on the Tuesday the nurses said, Would you like to walk down to the operation theatre And I said, Yes fine So down we went. And they were chatting to me. And got me on the trolley in the room before I had my anaesthetic. And everything was good. I went down at twelve oclock. I didn’t come back until seven. But I wasn’t aware of anything going on. I woke up to se all my family around me. And they were fine about everything. I was still a bit But that evening was a bit, not hairy. But I suppose thinking back, it’s when you think back that you think, Oh gosh But I didn’t, as I said, they were so wonderful, the nursing staff there. They were there for me. Naturally you’re confused. I was, I felt sure that my daughter was still there. And of course she wasn’t, she’d gone home at seven oclock.

The next day I was fine really, a bit muzzy but enjoyed my first cup of tea. And then I came home on the following Tuesday.

First bit I really remember coming round, I had two intravenous drips in, one for fluid, and one was a morphine, patient controlled infusion. That was great. It makes you feel a bit sick after a while. I was completely pain free. A little bit uncomfortable but it wasn’t as bad to be truthful as I thought it was going to be, and it is just more uncomfortable, and having the drain under your arm. But it wasn’t as bad as I thought it was going to be. And I think having the patient controlled morphine where you can press the button if you want a little bit more, and they gave me something twice a day, intravenously as well to stop the nausea that the morphine brings. That was fine.

My op was on the Friday, the morphine came down on the, the drip came down on the Sunday, but I hardly used it Sunday anyway, and after that I just had a couple of paracetamols really. I was in hospital for 8 days, loads of visitors as you can imagine, working in there, and not just at visiting time. That was a bit of a bad thing as well really cos there was times that I could have just nodded off and instead one of the pharmacists pops in to say hello, and that sort of thing.

I had to be very supported of course on the left breast with the arm, I wasn’t allowed to move the arm or do anything. And that was quite, really quite difficult to remember. And the nurses were forever saying, Jane, don’t move that, don’t do that. don’t pick up anything with it, just keep it there still And that was really difficult to remember to do.

The other thing they kept telling me was not to cross my legs in the bed, which is another thing that’s really difficult to remember not to do. But they were absolutely terrific. Everybody says it but it’s a truism, but they were, they were really lovely. And nothing was too much trouble. And I wanted to go to the toilet fairly on and they, they were so good about, even though I was pretty frail, and they were so good about sort of tipping me into a commode type chair and pushing me along to the loo, even though I could barely comfortably sit up straight. I wanted to go the loo, I wanted to try to go to the loo, so they took me and I thought that was very impressive.

After that I think it was fairly textbook like after that. They took the drains out one day. They took more drains out the next day. They took a catheter out on schedule. People came and visited me. I sat in a chair for about three hours on about day three I think and I felt quite woozy. I was very glad to get back to bed after three hours in a chair. But I was glad I got, and I had some visitors then too.

I was not eating very much. I wasn’t very keen on food. I was, didn’t, I felt, I felt OK, the breast felt all right. The breast didn’t feel strange. It felt stranger much later on actually. At that point I was barely conscious of it. What else happened?

By, I suppose by, I had a little weepy spell about four days after the op. After lunch one day slightly weepy for no good reason whatsoever. Again that might have been the anaesthetic, I don’t know, wearing off. But I did feel, but once I’d sort of sat there and moped for about a couple of hours and thought, Oh I feel weepy then it kind of slowly dissipated and I never felt like that again. So that was fine. And I just went up and up after that. I felt quite jolly.

I had a lady next to me, they put two of us together whod had the op on the same day, so there’s a certain amount of competition about who could do what first. And I got my hair washed before she got her hair washed so that [laughs] that’s sparked us on. That was another really nice nurse thing that she came and took me away and washed my hair even though probably it was not the best thing to do. But I wanted it washed so she washed it and that was fine.

I got out a day earlier than they thought I would get out. I got out, they said I would be a week and in fact it was the sixth day when, the evening before they thought I needed more blood because some sort of count had dipped down but in fact I suspect I didn’t. But anyway I had these two pints of blood and after that I just, there was no stopping me. I felt absolutely full of beans and the next morning the physiotherapist came round and said, Oh, well I’ve got to see if you can walk up the stairs And I did walk up the stairs, no problem. And so then they said, Oh well, OK, ring your husband, you can go home And that was a really nice surprise because I wasn’t expecting to do it for another 24 hours.

I think after the mastectomy I was only in two nights. That was a dreadful experience. I would have preferred a side ward which I did have for after my reconstruction. I just did not like being in the medical ward with all the, you know, confused, elderly old people.

Yeah. So you then came home?

Yeah.

How did you feel coming round, were you in pain, and also once you got back home?

I wasn’t in too much pain after the mastectomy. Yes it was sore and you’ve got the numb arms. I think I must’ve coped pretty well. I did have nerve pain; I know I did have to go back to the GP for some more pain killers. I did have nerve pain, but not as bad as I thought it was going to be.

And did you, well you were in hospital for a couple of days, did you look at the scar at that point, or there were bandages over it, or

There was a dressing on the scar until the next week or so, and we had to go back to the clinic, and a really nice nurse took it off. And she did actually cup her hand so that I couldn’t see unless I wanted to see, but I wanted to see. I wanted to just get, I wasn’t going to allow myself to not look at it, I wanted to see what it looked like. And I, you know, I just accepted that it had gone and that was it. Then we had to see the surgeon again, and then she discussed the results of, and it was at that point that she told me that I didn’t have to have radiotherapy because it wasn’t on my chest, the lump wasn’t on my chest wall.

Some women felt confused when they, for example, looked on the internet and read about other women’s experiences and some of those women have had lymph nodes removed and others haven’t.

Yes. If we go back to our understanding of DCIS not having the ability to go to other parts, then if it doesn’t have the ability to go to other parts, it shouldn’t go to the lymph nodes. But at the time that the piece of the breast is being removed, we won’t know for certain that all of that change in the breast is DCIS. There might be areas of it that have gone a small step further, still early breast cancer but now are invasive, and in order to cover that, you might think we need to check if there are areas of invasion, could they also have spread to the lymph glands?

Now in practical terms, again what tends to happen is if you’re having a piece of the breast removed for DCIS, you won’t have any operation on your lymph glands, except in exceptional circumstances. If you’re having the whole breast removed, therefore there’s a wide area of DCIS in the breast, then it’s sometimes very convenient to take three or four lymph glands at the same time.

So at the same time as doing a mastectomy, because there is a wide area of DCIS, it’s very technically convenient to take three or four lymph glands from the armpit, because they are there at the edge of your operation, and the reason you’re doing it is that when the full wide area of DCIS has been examined by the pathologist under the microscope, they may say, Most of it was DCIS, but there were a few smaller areas of invasion And if someone’s got some invasive breast cancer, usually the lymph nodes will be checked and, to avoid bringing the patient back for a second operation to check their lymph nodes, those four or five nodes will be taken at the same time as the mastectomy. But there’s really very little morbidity from that. People don’t get swelling of their arm, so called lymphoedema in the future, when they only have four or five nodes removed. It costs the patient very little extra.

And some women wondered, having read about other women’s experiences on the internet often, or having spoken to other women, why some women seem to have quite a few lymph glands removed, and others have had less.

There should be no aim of the operation to take more than perhaps what’s called the sentinel node, the first one or two nodes involved in the axilla, or four lymph glands which is called an axillary sample. Now sometimes when you take a lymph gland it may not be just one lymph gland, it might be five tiny lymph glands stuck together. So when the pathologist examines them, when you thought you took four, it ends up that the count is eight or nine, and that is just something that occurs due to the fact that that one lymph gland was a coalescence or a coalition of small ones. But surgeons don’t set out to do any more than about four lymph glands for patients with DCIS because what they’re trying to do is save the patient a second operation. But most certainly you shouldn’t be doing excessive surgery.

Yes. And some of the women that we interviewed said they had some lymph nodes removed before surgery or afterwards, so in which cases are they removed before or afterwards?

If we go back again to the previous situation when you would remove any, for somebody whos having a piece of the breast removed, generally they won’t have any axillary operation till that piece has been examined. And if it only shows DCIS, then they won’t have any axillary or armpit operation.

The sentinel node biopsy was done the night before the mastectomy. As I said earlier, by that stage I was getting to the point where I really did not want to go through with it. I would have done anything not to have to have gone through with the mastectomy. Went for the sentinel node biopsy the night before and they injected me into the nipple, and the doctor who was giving me the injections said, Oh this won’t hurt And it did. And I started crying at that point, in fact I think I might even have screeched a note, and he looked really shocked.

One of the nurses said, Well some people possibly have more nerves than others round there But it was actually quite fascinating. If it wasn’t me on the receiving end it was quite fascinating what you can, what they do. Cos they put this dye into your nipple, the injection into your nipple and then I could just about crane over my, like looking over my shoulder, and you could see the outline of my body and with this colour going from the nipple up to the nodes. It was quite fascinating.

And after the mastectomy when the surgeon was telling me that it wasn’t in my system, that they’d actually taken three nodes away because three of mine must’ve been quite close together, so they took all three just to be sure, and it goes blue so when you go to the toilet for the next three or four days, you pass blue water, which is quite funny. I’m glad that that was the option, because I play a lot of sport, to the thought, having a complete node clearance and the damage it could’ve done, the possibilities of lymphodeama, that would’ve just, I don’t know, would have been devastating really.

At some point, I can’t recall exactly when, in this frantic time, it may have been after I had the second opinion, I then wrote to my surgeon and faxed him the letter with some more questions that I had. By then it was why he was proposing to take lymph nodes away when DCIS was all about non-invasive cancer. There might be invasive cancer but they would find that out after I’d had the surgery and wouldn’t it be better to just remove the tissue and only attack my lymph nodes if they discovered there was invasive cancer after I’d had my mastectomy. And so these were the kind of questions I had. So I faxed him this letter and I put on the top my email address. I didn’t actually say I’d like to do this by email, but I thought at least I’ll show I’ve got an email address, and he faxed me
back the same day a reply, a good reply to my letter and actually said, "If you would like to communicate with me by email I’m very happy to do so", which was a thrill, an absolute thrill.

And from then on my relationship with my surgeon and all these problems about information went into a different gear. We weren’t over all the problems, but I had numerous exchanges with the surgeon, and he was so quick at responding. He would look at his emails between surgery operations as far as I could see. And he was extremely good, and bit by bit I got through some of my questions. But it was not without its trauma, because a week before the surgery I still had some important questions, which I never got to the bottom of, about the lymph nodes, and that was what – I was far more terrified about the surgery on my lymph nodes than I was about losing my breast. And that was because, although I didn’t want to lose my breast, it wasn’t going to interfere with the rest of my body. Taking away lymph nodes was actually going to interfere significantly with my immune system, and I’d read all these dreadful things about the possibility of lymphoedema, and what’s the point of doing this if it’s not actually essential?