Breast Cancer in women

I was on Arimidex at the, do you know there’s some times I have to say that in hindsight now are a blur. I can’t tell you exactly when I started Arimidex, but if I remember correctly it will have been after the first, after the last chemo. I think that’s when I started taking the Arimidex. The Arimidex itself, right my fingers, finger joints, my toes, the morning of the, there’s an underlying nausea. And the joint pain gets better during the day, but first thing in the morning my arms just feel as if I’m wearing leather gauntlets. And the joints are tired and heavy. That I have definitely had. The nausea, the burning from the inside, it’s almost as if within a day you experience early pregnancy and menopause in one day. Thankfully not at the same time.

Even now two years, about, not two years on but about eighteen months or so on, you have the side effects?

It’s slightly, the nausea has gone, but only recently. Now that you mention it, no the nausea was still there at Christmas and early January. But it’s sort of within the last six weeks or so that there has definitely been a change and that includes the nausea. The hot, the burning is no longer quite such a sense of burning from the inside out. It is more now like a hot flush that I get. Yeah, I seem to, regular as clockwork around 11 at night in the evening, I sort of think, “I want to go to bed, but I’d better not, I’m just far too hot at the moment.” There is that.  And I wake up in the morning sometimes and I just feel hot and sticky. So the hot flushes, but they have changed.

And how long do you have to take the Arimidex?

I’ve got another three years to go.

To my mind, I’d sort of felt I’d recovered really well and then the only sort of after effect was I had to take tamoxifen every day.

When did you have to start the tamoxifen?

That was quite quick afterwards. They put me on, I think again once they’ve been through like pathology, and they’d worked out it was, oestrogen could affect it, then they put me on that.

So that was before the radiotherapy?

Yeah.

Before the radiotherapy,

I started on that, yeah.

How did you feel about the tamoxifen? Did you have any side effects or hot flushes?

I did, I eventually, and for the life of me I can’t think of the name of it, I took it for probably over a year. But I got terrible hot flushes, which I thought was still maybe a leftover from the menopause. And I think it would have been towards the end of 2006 on one of my regular visit’s I happened to mention that, you know, it’s miserable going, I just, it was making me miserable and that. She said, well it can be a side effect. And then changed it, but I can’t, but I was only on them say for a little while before I unfortunately got the cancer back. But they did change it and then I was fine.

And what did they change it to?

I can’t remember the name also?

Was it Arimidex?

Yes. That’s it.

Arimidex.

Yeah Arimidex. Yeah. And I had no problems whatsoever on those.

No side effects at all?

No.

No. And you took it everyday, and there was...

Yeah.

...absolutely nothing, the hot flushes?

They went.

How long did you take the Arimidex for?

It probably was only about six months unfortunately. I wish I’d been taking it, it would have made life easier if I’d taken it longer. No but it was quite, it was like the last part you know before I found out I’d got the cancer again.

During the last ten years, and certainly during the first five years, I used to go to see the oncologist every six months, and then my consultant in six months, so there was two visits per year. And after year 5 when I finished the tamoxifen, I said, “What happens now?” And it was a case of, “Ooh, that’s it now.” And I suddenly thought, “Oh my goodness, my safety net’s disappeared.” And I went away and within a week I had a phone call from the oncologist and she said, “We’d like to see you.” And of course I went into panic mode thinking they’ve missed something.

Anyway the upshot of it was, some recent research had shown that ladies of my age who had had an oestrogen positive tumour, ovaries removed and early menopause, they recommended putting onto Arimidex for five years. Well at that time for two years. So, which is why I went onto Arimidex.

And then I didn’t see my consultant, sorry my oncologist, since then, I’ve come off from seeing her. But I have stayed seeing my consultant and they, it was, it’s been my choice and they said, “You don’t have to, but you can stay and come back yearly.” Which I have done so, just for my own peace of mind. And any updates on new medications and things like that, and I’m dealing with my consultant actually next week, and it will be, my Arimidex will be five years, because each time I went back it had been shown to stay on it for another year. And I am expecting him to say, “That’s it now. Ten years,”

For tamoxifen I felt maybe quite lethargic. Because I was going through the menopause anyway, so I couldn’t say whether it was the menopause giving me the hot flushes or the tamoxifen. Or if I just had a double whammy, but I did have the hot flushes, and to the extent I still do. But it was explained to me that, because of my ovaries being surgically, obviously being removed, I was going to have a surgically induced menopause really. So it did come on very quickly. So I and also, what else? I sort of had achy bones, achy limbs as well, which caused me a bit of concern at one point. Which I had some tests done but everything was absolutely fine.

And then the Arimidex I think has been better for me personally. Yes, so hot flushes, but that’s the menopause. And also as part of the menopause you go through the vaginal dryness, and so I can’t really say whether it’s the Arimidex that’s caused it or because of my menopause. But overall I think I’ve been one of the luckier ones, that I haven’t had major side effects. I know I have got friends that get very bad headaches and suffer extremely badly and, I have to say, I can’t really think of anything that’s really, really bad. I think for me it’s more been the hot flushes and yeah your body, and weight gain.

When I was diagnosed I was a very small size 10, and now I’m more of a sort of a 14 top and a size 12 bottom. But it’s the tummy and the hips which are harder to move. And again that can be a side effect, but I think mine has been a combination of both. So it would be interesting to see if I come off the Arimidex if it, how I would feel after that.

And you’ll find out about that next week?

Next week. Yes. Yeah.

How would you feel about coming off the Arimidex?

It’s interesting isn’t it? Because about a couple of years ago I thought, when I thought I was going to be taken off it, I was still unsure because it was my safety net. But now I think I’ve been just thinking it through and working my way through to the fact that, at ten years, that’s a fantastic mile stone. And if anything was going to go wrong, it was going to go wrong before now. And I feel, and I think we don’t know if the Arimidex is doing me any good or whether it’s not. It could be doing me more harm because there’s nothing to say at the moment.

And so I’ve really sort of resigned myself now, that if I come off it that is really good news I think. And I hope that perhaps I might lose a little bit of weight. I don’t know. Maybe the hot flushes may not be as bad, I don’t know. Or I might not see any difference at all. But I was just very positive that here I am, and I’ve, yeah, I’ve worked myself through now that ten years, so it’s a bit like the milestone really.

I had tamoxifen for two years. Then I was told the newest thing is that now you go from tamoxifen to Arimidex. Which I did.

And then my oncologist, Professor [doctor’s name], is very well known. He came back from the San Antonio conference in America, which is the big one, and said, “Oh I’m putting you on Aromasin now. So I went onto Aromasin. But I had side effects from all of those. I had the most ridiculous things, carpal tunnel syndrome, which people think is repetitive strain injury. And I stopped working. I couldn’t use a computer. And then discovered that was a side effect of one of the drugs I was on. And had injections and that cleared up.

Then I went to see, I had problems with my heart and I went to see a very eminent specialist Mr [doctor’s name], and he said, “Oh you need a seven hour heart operation.” And I said, “Is this due to my cancer drugs?”  “Oh no,” he said, but about six months later I had some research information from John Hopkins in America, and also from Dana Farber, two of the worlds top research places, and they both said anybody on those drugs, twenty five percent of us will have heart problems. And I’ve now picked up osteoporosis from the side effects. And I’m having problems at the moment with the drugs that deal with the osteoporosis.

I don’t mind, if I’d been told you’re going to get the side effects I would have fully have accepted it. But that was my choice. But at no time did any of the oncologists tell me, “Oh well these are the possible side effects.” They just tried to brush them off. 

Do you know which side effects came with which of the drugs at all or….

Well I know that the blindness came with the tamoxifen, and I know the skin lesions came with tamoxifen. But now I can recognise the preliminary signs of skin lesions, where my skin gets incredibly dry and I start itching, as though I’ve got fleas. I know that’s more skin lesions happening and I had that with both Arimidex and Aromasin. But thank goodness for Roche Posay. I just slap on two or three times a day, the products, and that sort of calms my skin down.

And you mentioned that you were taking tamoxifen for two years?

Yes. Now I think Aromasin produced Carpal Tunnel syndrome. And I think it was the, no sorry, Arimidex produced Carpal Tunnel syndrome. It could have been Aromasin or it could have been Arimidex that produced the heart problems. I’m trying to remember the research information that I got from John Hopkins. But I think it had a whole list of cancer drugs that could cause heart problems. So it could have been either.

And how long did you take the Arimidex for before going onto the Aromasin?

I think Arimidex I was on for two years, and then Aromasin for one year. They keep you on hormonal drugs for about five years. And then they reckon that everything should be zapped by then. Although I know with certain cancers, some people can stay on Tamoxifen, oh forever. But it depends on the type of cancer you have

And are you taking Aromasin at the moment?

No, I’ve finished with them. My type of breast cancer, according to my oncologist, I don’t need to take any more thank God.

You mentioned that you had some of your care in the UK, which was private health care.

Yes.

And some in France. And you have mentioned before that you had some in

Germany.

Germany. Can you go through and tell me which care you had where? And how it differed?

Right, well having been told that the oncologist that I was under in London couldn’t, didn’t think that tamoxifen caused my blindness, and having been told by the Chaplain yes it does, I talked to him and discovered there is a French ophthalmologist, [doctor’s name] who practices not very far from me in Sloane Square. So I rang him up and described the problems. “Oh yes,” he said, “I’m familiar with that.”

So I went to see him. And he spent an hour and a half examining my eyes with the most incredible equipment you’ve ever seen. It was like Star Wars. And then at the end of it I remember he leant back in his chair and said, “Thank goodness. It’s not tamoxifen poisoning.” Apparently one in a million of us become blind from tamoxifen. But thank God it wasn’t that. And he said, “Oh this will clear up within,” he said, “It’s a result of tamoxifen. It’ll clear up within two months.” And it did. He gave me, my eyes still water a bit, and he gave me marvellous drops which soothe them, calm them down. So that was tamoxifen.

Then the next one, the skin lesions. With that, having been told by what I’d been told was the top dermatologist in Britain, “Oh it’s your age”, when I knew it wasn’t. I thought, “No, I’ve got to be sensible now and go over to France where you know they should be able to treat me better.” And so I started to look around and ask people and I was told there is this wonderful skin care product which has had clinical trials, and it’s been developed in a French hospital. So that seemed to be the ideal place to go to. They’ve been treating people there for three hundred years for skin complaints, so...

So you went over there?

Yes

And you stayed there for how long?

I was there for about three days. I was fully expecting to have to stay longer. But actually I went in to see the first doctor at half past one in the afternoon. And by half past five everything was sorted out. All the tests were taken.

I’ve discovered that exercise is very good at helping one recover from cancer. So I’ve met up with a marvellous woman called [name], whose family own clinics all over Germany. And [doctor’s name] had one at a place called Bad Sulza. And she said, “Oh well we’ve got a five hundred bed rehabilitation clinic there, come and stay with us.” Which I did.

You mentioned you’re on letrozole…?

Letrozole, yes. Well I went to see my oncologist because I’ve been having check ups once a year. After I stopped the regular check ups they said, “We’ll see you once a year.” And it alternated at first between the oncologist and the surgeon. And then the last couple of years the oncologist has seen me.

And she has said at the end of the tamoxifen period, at the end of five years she said, “Right you’re coming off the tamoxifen now.” But she said, “There is something else you can go on to. She didn’t seem to hold out great hopes for it. She said, “It’s there if you want it, but if you don’t, get on with it. Don’t worry, just drop it and leave it.” And I thought well I’ll give it a go.

And she said, “You may find you get aches and pains, a lot of people do complain of aches and pains in their joints.” But I was already getting aches and pains anyway, and whether that was from other medication I was having to take, I don’t know. But anyway I went onto the medication and yeah it’s been alright. I don’t know whether it’s doing any good or not, but it’s worth trying.

And you haven’t had any major aches and pains, enough to make you feel, “Oh it could be the letrozole and I don’t want to take it now?”

I do get a lot of stiffness, but a) whether that’s my age, whether that’s the letrozole, whether it’s the other, whether it’s the statins that I’m on for other problems, I don’t know. It’s not nice, but I don’t let it stop me doing the things I want to do. If I want to do something, I’ll do my damndest to do it.

And how long have you been taking that now?

I think I’ve been on the letrozole about a, just over a year now. So I think I only take it for another year and then I come off that. Whether there’s anything after that I don’t know.