Carol - Interview 18

Age at interview: 51

Age at diagnosis: 51

Brief Outline: Carol was diagnosed with DCIS in 2008, aged 51. She had a wide local excision and was happy with the care and treatment she received.

Background: Marital status' Carol is a single carer and student. Ethnic background / nationality' White British

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Carol was very aware of breast cancer because her father had been diagnosed with it. He later developed secondary cancer in his lungs and died. Carol said that, at the age of forty, she was given a mammogram because of her father’s experience and, maybe because of the stress at that time, had an early menopause. She had been taking HRT and stopped taking it around that time.

 

When she was 51, Carol was invited for a routine mammogram and recalled shortly afterwards. She was given another mammogram, an ultrasound scan and a biopsy, and found the biopsy a difficult experience. It took over an hour and the anaesthetic kept wearing off. Later that night, she was still in pain.

 

The tests showed that Carol had low to intermediate grade DCIS in a small area of her breast. Her doctor recommended she have a wide local excision. Carol queried whether a mastectomy would be a better option, given her father’s experience and to ensure that all the cancer would be removed in one operation. After a discussion about her treatment options with her doctor, she decided to have a wide local excision. Carol said that the most important consideration for her was to have a quick recovery because she was the main carer of her elderly mother, who had dementia. She wanted to be out of hospital and back to normal as quickly as possible.

 

Carol found it noisy on the ward and felt terrible because of a bad reaction to the general anaesthetic. She felt she would recover better and quicker at home and, after talking to her doctor, discharged herself. Carol said the bad reaction to the anaesthetic also hindered her recovery because it left her feeling extremely tired. It took three or four weeks before she felt she was back to normal.

 

Carol said she was very happy with the results of the surgery. She was offered reconstructive surgery to lift the breast that had been operated on as well as the healthy one, so that both breasts would look the same. She declined this because more surgery would mean more time away from looking after her mother.

 

Carol said she looked for more information about DCIS on the internet and found breast cancer websites and forums very helpful, though they could also be confusing because other women had such different experiences and diagnoses. She said she was grateful to have been invited for a routine mammogram and advised other women to attend.

 

Carol was interviewed for the Healthtalkonline website in 2008.

Before surgery, Carol stopped drinking, cut down on smoking, ate healthily and walked several miles a day.

As soon as I knew I’d got to go into hospital for an operation, I stopped drinking alcohol completely. I stopped smoking and I started eating loads and loads of fruit and vegetables.

 

How soon before surgery was this? Or as soon as you were diagnosed?

 

I think it was as soon as I went back for the second mammogram actually. Because I knew there was something wrong and I just thought take care of yourself. Be as fit as you possibly can be, you know, before you go into hospital, just be fit.

 

Before you had the surgery you stopped drinking completely.

 

Completely.

 

Stopped smoking completely?

 

Not completely, but I cut down. Absolutely, and about three days before I actually went into surgery, I stopped completely. Because of the anaesthetic and stuff, so I did stop completely then. I didn't smoke for a fortnight after the operation either. And whereas I would walk maybe two miles a day with the dogs, I was walking like three or four miles everyday, just to get my fitness up.

 

Yeah. Did you notice changes then in your.

 

Yes, I think it does you good mentally really. Not only physically because you're getting the exercise but I think exercise is good for you mentally. And I think that’s why I was as calm as I was. Basically because I was doing all the right things. I couldn't have done more than I did for myself to get fit. And of course I've maintained that since, you know. I do have a drink now but I don't drink to excess. I do smoke but I don't smoke to excess. I walk three or four miles every day. And obviously I’m a carer for my mother, so there's a lot goes into that physically as well. And I just intend to keep fit.

Carol was shown an area of micro-calcifications and told that those cells were precancerous.

Then I got the recall, and it was one of those things where you thought, “Yeah, this one doesn’t feel quite the same.” And initially you don’t know if that's just your reaction to the recall or whether you were actually feeling that there was something there. There was no lump or anything. Went along for the second mammogram and they actually showed me the x-rays and this area of micro-calcifications, explained what that was and said they were like precancerous cells but they were in situ and they’ve not got the ability to spread and move. And at that point you know very little about DCIS. And it's not something that you've heard of, you've heard of breast cancer, of lumps, benign lumps and malignant lumps, and it's all a bit confusing. But you just keep telling yourself, “Oh this is really early, this is really early.”

Carol's doctor reassured her that a mastectomy was unnecessary for the small area of DCIS she had.

When I went for the results and they told me it was DCIS, it was low to intermediate grade DCIS but it was quite a small area. And at that point, because that news is sinking in, they then start to talk to you about treatment. And although I’m usually quite chatty, I went sort of unable to speak really. And all the questions I was being asked and the treatment I was being offered, I couldn't make choices. I was so confused with the whole thing. And it was like, well I don't know what I want to have done, you know.

 

When I was told I'd got low to intermediate DCIS, my first question, because of my father having had cancer, was should I just have a mastectomy. And the surgeon said it's not necessary at this stage. And I went back to that during that session and said, “Are you sure I shouldn't have a mastectomy because I’d rather it all just be gone and out of me than have this WLE, have that analysed, find out there's something else wrong and then have to come back for further surgery. I’d rather get it over and done with.” And thinking back, I mean, I wouldn't, there's no way I wanted a mastectomy but it was the unknown quantity. It was, if there's anything else wrong, can I face further surgery? I just want it over and done with. But the surgeon, as I said, he’d queried the results in the first place, I trusted him implicitly and he said, “Not necessary at this stage.” So I went with his advice.

Carol was desperate to go home where she could sleep properly. She had vomited because of the anaesthetic and felt weak.

Once I'd come round after the surgery I was extremely dizzy and disorientated. And I could see other people that had had surgery that day and they were sitting up in bed and drinking tea and eating toast. And I just felt awful. And I'd actually got an oxygen mask on and I was not with it at all. And nurses kept coming and checking on me and taking my temperature and doing this, that and the other. And I could see, people keep coming around with tea trolleys and I just couldn't physically do that. And once I had sat up, I tried to walk to the loo and I was all over the place. And when I came back, that's when I started to be really physically sick. I was very bilious and they gave me some tablets to control it. I’d mentioned beforehand that I'd had a general anaesthetic twenty years previously for some dentistry and I'd had a bad reaction to that. And they said, “That's OK, we'll give you a lot of anti sickness stuff in with the anaesthetic.” So I thought I was going to be OK, but I wasn't. I had the same violent reaction to it.

 

They gave me tablets to control the sickness, they didn't work. They gave me a little pill that you put under your tongue to control it, that didn't work. And in the end, this one particular nurse, bless her, made it her mission of the day to stop me being sick. And she actually gave me intravenous drugs. And I told them that I wanted to go home because I'd had such a poor night the night before and there was an old lady that was moaning all night. She was in the wrong ward. And it wasn't her fault, and I felt sorry for her but I just couldn't rest. And I said, “I’d like to go home as soon as possible”, because originally this WLE had been planned for day surgery. So I'd got it into my head that I would be home the same night. And then they changed it and put me on an admission ward instead. And I really didn't want to stay. I’d had to stay in the one night, obviously because I didn't have the operation until actually four o'clock in the afternoon, and I wasn't fit to go home that night. I wasn't with it, I was still under the influence of the anaesthetic and had a really bad night, as I say.

 

And the following day I was still being ill [laughs] and they gave me these intravenous drugs and they said, “If you can…”, this was later on in the afternoon that day, I kept saying, “I want to go home, I can't spend another night in here and not sleep at all again.” I was physically exhausted. Obviously I’d had nothing to eat or drink then since goodness knows when, so I was beginning to feel quite weak.

 

And they said, “If you can take a drink and keep some food down, we'll consider it.” So I was sipping away at this water and I ate two Nice biscuits, which a nurse went and fetched me. I was just hoping and praying that, you know, I could keep those down. And then in the end they still didn't want me to go home. They still wanted me to stay another night for observation because of the bad reaction. But I was having none of it and I just, I rang my partner up and said, "Come and fetch me."

 

The surgeon had been round and he’d said he’d got no problem with me going home. As far as the operation was concerned everything was fine. He’d checked my wound and everything. But the nurses were concerned about the reaction to the anaesthetic. And apparently my oxygen levels had dropped low or something. This is why I’d got the mask on. But anyway, I did come home.

 

So you came home and were you OK at home or you were still sick?

 

No, no, I’d stopped being sick. The intravenous drugs did the trick. And I wasn't sick again after. Even the car journey home, I was pretty doubtful about that but [laugh

Although Carol's friends and family were overjoyed to hear she was clear, it took her two weeks to accept it and start getting back to normal.

Then it was going back for the pathology results after the operation. And I was strangely calm. I've seen a lot of people on the forums say that the waiting for the results is the worst thing. And I expected to be like that and not be able to sort of get on with my life until I got that result. But, I don't know for what reason, probably because I've been carrying on as normal and I trusted the surgeon and I knew they’d caught it early, I was strangely calm about the whole thing.

 

And then it came to the day of the results and you have to wait a long time, it was three weeks. But in my case, because I’d had a bad reaction to the anaesthetic, I think that was probably a good thing because by the time I actually went for the results I was feeling stronger anyway. And the relief, the absolute relief when he said they got clear margins and that was it, no further treatment. And I was like, “Well I don't even need radiotherapy?” And he said. “No, no we've got good clear margins.”

 

No tamoxifen or anything?

 

No, no nothing whatsoever. It was just removed, clear margins and then we're going to keep an eye on you and it's going to be yearly mammograms for you from now on. And the absolute relief initially was like overwhelming really. I could have kissed him but I just shook his hand [laughs].

 

But then when you come out of there it won't sink in. Everybody around you who you're telling, your friends and your family and you know you're ringing your brother up and saying, “I'm all clear.” And your best friends you're telling, and they’re all really overjoyed, but you're cautious. You're, it won't sink in straight away because you've not realised that you've had this two months overall out of your life with all this inward worry, you can't immediately just switch off and think everything's great.

 

And I've got to say it took me a good couple of weeks of just biding my time, waiting to feel happy, I suppose. And that was that, before I did start really getting back to my normal personality, and thinking, “Right, put that behind you now, get on with your life, enjoy it. Stop worrying, stop thinking it might come back, it might this, you might get something else, you're prone to it, just stop it.” You know, you're going to have yearly mammograms, if there is anything else, they're going to catch it early again and just thank god for routine mammograms. And that's the stage I'm at now.

Carol found the breast cancer forums helpful but said that information on the internet could be confusing because everyone had different diagnoses.

Then, of course, you start researching, you start looking on the internet and you start going on the websites. And in a way it helps, especially the forums, because you read about other ladies and you can get into communication with people that are feeling the same things as you're feeling. But in another way it confuses you even more because DCIS is sometimes known as pre-cancerous, other websites will say it is cancer, it's early cancer. And the whole thing surrounding DCIS is very confusing. And that's one of the key things I picked up on when I was on the forums and reading other peoples' stories. And because you can't pinpoint exactly what you've got and everybody's different and the size and the spread and treatments and whether it's gone into the lymph nodes. And then you think, “Well, how can it go to the lymph nodes if it's in situ?” And then they tell you that it can hide other things. There could be a true cancer lurking there, that then could have spread and it's just like, it’s a lot of information to try and cope with really.

Carol found the biopsy extremely painful. The procedure took some time and left her with a lot of bruising.

I went to the city hospital, had the biopsy and that was a terrible experience. I was forewarned it wasn't all together pleasant and I was sat in the same position for over an hour. And bits of you that you don't think are going to hurt start hurting. For instance, your neck because you're in a particular position and they keep telling you to be very still. And that wasn't straightforward because apparently I've got quite dense breast tissue and the tube where they were taking out samples kept jamming up. So they had to keep removing it from me, flushing it with saline, putting it back in.

 

I ended up with two quite large-ish holes in my breast. The local anaesthetic kept wearing off because I was in there so long. So they had to keep giving me more. And then I just thought it was over and done with. They took me to a recovery room, apologised for the problems that they’d experienced doing it, and just left me there five minutes, came and put a little dressing on, told me to go home and rest and take paracetamol.

 

That night I was in total agony, really, really bad pain. I went to bed but I had to get up, I couldn't lie down, it was throbbing, terrible pain. Ended up sitting in the chair in the living room trying to get comfortable, and I was actually awake all night. The following day I was quite concerned about it because I'd been told to go home and take paracetamol so I thought, “This isn't right, something’s not right.” And I actually rang one of the Breast Cancer UK nurses on-line, explained to her and she actually told me that with that kind of a biopsy some ladies even are given morphine for the pain because they know it's so painful. Why was I sent home and told to take paracetamol then? But anyway, that was that and that was over and done with.

Carol felt she would have recovered quicker if she hadn't reacted to the anaesthetic. She felt that the physical recovery was quicker than the emotional.

It didn't take me long after the actual surgery to be driving again, I've got to say. The recovery from the actual surgery physically was really quite quick.

 

And it was more the emotional side plus the effects of the anaesthetic?

 

Yeah, that was just unfortunate to me. I mean if I hadn't have had that bad a reaction to the anaesthetic, it would have been a breeze really [laughs].

 

Was that time you were, you know, getting over the anaesthetic also a time where you reflected on what happened because things happen quite quickly from diagnosis to surgery?

 

Yeah. I was just pleased it was over and done with. I was just concentrating on getting back to normal. That was my biggest thing, to get my life back to normal. And that was my motivation as well I suppose for getting through the whole nightmare. Because it was like a nightmare looking back. Yeah, it was just, that’s my only word to describe it. Both emotions, physically, the whole thing, was a nightmare.

 

Do you feel things are completely back to normal now? Or is there is a bit of distance or?

 

No, I think it’s now, as I said, initially when I got the good results following the, from pathology following the operation, it did take a considerable while to actually sink in that I was OK now. But that's just a result of, you know, a couple months of worry, that you can’t just go like that [snaps fingers] and everything’s fine. But, yeah, I’m completely back to normal. As I say, probably with a better outlook on things.