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Verite - Interview 51

Age at interview: 61
Age at diagnosis: 54
Brief Outline: Verite was diagnosed with breast cancer in 2005, aged 54. She had a lumpectomy, radiotherapy and tamoxifen. She had severe side effects with tamoxifen and switched to Arimidex and then Aromasin.
Background: Verite is a journalist. Ethnic background/nationality: White British.

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In 2005 Verite had been feeling under the weather and ‘felt’ she had cancer. She had private health insurance and went to see her doctor. He couldn’t find anything but referred her for further tests, including a mammogram and biopsy. She was diagnosed with early breast cancer, aged 54, and recommended a lumpectomy, radiotherapy and tamoxifen.
 
Verite experienced severe side effects with tamoxifen, including temporary blindness in one eye, and was treated by an opthalmologist. Shortly afterwards, she had skin lesions and peeling skin. She saw a dermatologist but was told her skin problems were age-related rather than side effects of tamoxifen. After doing some research on the internet, Verite went to France for skin treatment. There, she was given various skin products which helped heal her skin.  
 
Verite took tamoxifen for two years and then switched to Arimidex, which she took for two years. She was later prescribed Aromasin, which she took for one year but said she had side effects with all three drugs, including skin lesions and itchy skin. Verite also had heart problems and wondered whether these, too, were a side effect of hormone treatments for breast cancer. She wished she’d been told about all the possible side effects beforehand.
 
Verite said she had treatment in France for her skin problems and later went to Germany, where she received massage and had an exercise programme, which included swimming in thermal waters. She strongly recommended having treatment for breast cancer in France or Germany.
 
Verite felt she had to find out how to treat her side effects by herself. She has now set up her own website about the products and things she has found helpful.
 

Verite had been feeling under the weather. She didn’t have any other symptoms but ‘felt’ she had...

Verite had been feeling under the weather. She didn’t have any other symptoms but ‘felt’ she had...

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I’d been feeling a bit under the weather and I woke up one morning and I suddenly thought, “I know what’s wrong with me, I’ve got cancer.” And I then had the dilemma did I go to my NHS doctor, but I knew that I would have to wait two weeks at least to see him. Or did I pay and go and see my private doctor, who’s secretary would say to me, “Oh you poor thing, come in straight away.”

So I went to the private doctor and he said to me, “I cannot find anything.” He gave me a very thorough examination but he said, “I always trust my women patients, they know what’s wrong with their bodies. So, for my sake, will you go and have a mammogram?” Which I thought was a lovely way of putting it. And didn’t worry me at all.

And I knew I had cancer. So I go off and have the mammogram, and then go back and have the biopsy and that sort of thing. And finally I turn up for the results. And I knew immediately I’d got cancer because instead of, “Wait over there,” it was “Oh Miss Collins[name], Nurse [name] will look after you.” So I knew immediately I’d got cancer. Went in to see the doctor who gave me the news. I think he was very surprised because I didn’t burst into tears because he was sitting there with a box of tissues. And then I said to him, “When will I have my operation?”

You felt tired but did you have any symptoms, for example did you feel it was breast cancer or…?

No I didn’t. I did sort of examine my breasts but I couldn’t feel a thing. And I looked all over my skin to see whether I’d got skin cancer. But just something in my brain said, “You’ve got cancer.” And when the mammogram came back it was a tiny, tiny little bit of cancer. You know, the radiographer said it would’ve been very, very difficult and they might even have, if I hadn’t have been so insistent that I had cancer, they might have even overlooked this. But it would have grown.

 

Verite’s sight problem was treated successfully by an opthalmologist and she used various creams...

Verite’s sight problem was treated successfully by an opthalmologist and she used various creams...

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I was handed tamoxifen, and I woke up a week later to find I was blind in one eye. And I went up to see the oncologist and he said, “Oh, um, um, I’ve never seen this before.” Luckily the Chaplain was passing by outside. So I collared him and I said, “[Chaplain’s name], what do I do?”  “Oh” he said, “That’s a side effect of tamoxifen. It’s recognised. I’ll look it up in my papers.” And sure enough it said X percent of us get this in our eye. So I went off to see a French ophthalmologist who sorted me out beautifully.

And then about two or three days after I’d finished off with the ophthalmologist, I wake up and I’ve got bloody sheets. And I’ve got horrible skin lesions all over my body and my peeling skin and everything. So again I rush up to the hospital. And the nurse peels off more skin. And says, “Oh I don’t know what to do about this.” So I made an appointment myself to see the dermatologist who dared to tell me, “It’s your age.” Well I knew full well that that was, it couldn’t possibly happen overnight if it were age. So I took him up on this and he just swept out saying, “I haven’t got time to answer questions.”

So this time I thought, “No, I really, this is serious.” So I went on the internet and found that the French are the best at treating this. So I went off to Roche Posay where they treat about eight thousand skin problems a year. So I reckoned they knew what they were doing. And sure enough they did. They gave me lots of nice products. I was examined very, very thoroughly. Swabs taken and all sorts of things like that. And came back with a huge box of  lovely products and, since then, every time I can feel a skin lesion about to burst out, I slap more of the products on.

 

Verite was prescribed tamoxifen, Arimidex and then Aromasin. She had side effects with all three.

Verite was prescribed tamoxifen, Arimidex and then Aromasin. She had side effects with all three.

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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.

 

To help with her side effects, Verite had different kinds of treatment in France and Germany.

To help with her side effects, Verite had different kinds of treatment in France and Germany.

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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.

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