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Shelia - Interview 21

Age at interview: 59
Brief Outline: Sheila was diagnosed with breast cancer ten years ago and had a lumpectomy followed by radiotherapy. Sheila had to insist to get chemotherapy as it was not initially recommended. She feels more preventative care should be offered on the NHS.
Background: Shelia is a teacher. Ethnic background/nationality: Jewish South African

More about me...

Sheila was diagnosed with breast cancer ten years ago after having a mammogram as part of an ongoing health care initiative. She had a lumpectomy and was offered radiation. Chemotherapy was not recommended because, she was told, it would increase her risk of developing leukaemia. After consulting with relatives who are in the medical profession abroad, Sheila insisted on having chemotherapy and was surprised that her consultant then said that would offer her the best chance of survival. She developed gum disease and carpal tunnel syndrome as side effects of her treatment but overall, the treatment was successful.
 
Sheila experienced further obstacles in trying to organise genetic testing and paid privately for a consultation and test. She was told that there was a 60% certainty that she didn’t have BRAC01 gene.
 

Sheila feels strongly that without the preventative screening which was offered while she studied in Israel and the follow up checks carried out privately in the UK, she would not have discovered she had cancer until it was too advanced to treat. She would like to see more preventative care offered on the NHS and feels that more money should be spent on health more generally. 

 

Sheila went privately to be tested for the Founder mutations in the BRCA genes, and was upset...

Sheila went privately to be tested for the Founder mutations in the BRCA genes, and was upset...

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Then there was also the question of genetic testing because my Mother had had breast cancer. I was a first, degree relative. Once she was diagnosed, then it meant automatically this is it, I was in a higher risk, and with Ashkenazi Jews there could be a familial link with the BRCA1 or the BRCA2. The genes with a known link at that stage. Anyway so I asked if I could have the genetic testing. So first they said no. So again, I then went back, and I said, “Look my sister in Canada, my sister in Israel, who haven’t got breast cancer, they’ve already had the test. It didn’t take long there, the minute I was diagnosed they contacted, and they were told, ‘Yes, you can have the test.’ And boof, they’re having it, and they’re getting the results.
 
So then here they said, “All right.” I can have it. It’s at the [hospital name]”. And they said, “There’s a two year waiting list.” So I was, I was adamant. I said, “I’m not waiting for two years. It’s impossible. It’s too stressful.” So then they said, “Well if you pay for the consultation, then it can speed it up.” So again, you know, I mean its like, it shouldn’t like it shouldn’t be a two tier system. So I said, “How much is the consultation?” And they said, “£400” and then they said, “Then you can go on the National Health to have the test because the test is thousands.”

This is what the consultation consisted of. It was disgusting. First of all they kept me waiting for four hours. Okay. So you’re not feeling well, okay waiting. Came in, this lady who’s a professor, doctor, says to me, I’d had to fill in a form before giving family history, for which I got my mum’s help. It actually turned out when she did enquire, there were quite a lot of people on her side who had died from cancer, which made her feel a bit bad. It shouldn’t but, from like her grand, her grandfather I never knew, and then her uncle, and her aunt. You know, various people because of course, those generations, didn’t always talk about what people died of. You know, they didn’t always know.
 
Anyway, so and I said, “I’d take any cancellation.” I said, “It didn’t matter what day.” All it actually involves initially is that they take blood. I mean it’s what they do, then they have to test it. And they said, “You should get the result within three months.”
 
So I wrote down in my diary, ninety days to the day, and I thought, if I don’t hear, I’m phoning. I’m phoning which I did. And they said, “Oh don’t know if we’ve got your results yet.” I said, “It’s fine. I’ll wait on the phone.” She came back, “Yes, we’ve just got them.”
 
And then the nurse, she says, “Well,” she says, “With 60% certainty we can say that you’re negative.” So then I was distraught because 60% certainty’s pathetic. I mean it’s almost just like even chance, you know, it’s close to 50. I mean. I said, “No.” I said, “I can’t believe this.” I was really upset.
 
On the phone to my sister that night, she said, “Calm down.” She said, “What it means is, that for all the genes that they’ve so far uncovered, on the whole, the gene and the genome project that they’ve identified, they’re only BRCA1 and BRCA2 that can increase the pre-disposition to the breast cancer. But there’s 40% of the genome, the actual genetic total list
 

Sheila never thought that she would die when she was diagnosed with breast cancer but she was...

Sheila never thought that she would die when she was diagnosed with breast cancer but she was...

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But I think that actually in the back of my mind though, I wasn’t that sure if I was going to be alright, but I did at that stage, I mean I was studying part time, I was only working part time, I had to be terribly careful about money, and I bought a present for a little girl, here who had hurt her finger, I mean, I seemed to spend quite a lot of money, and I think I must have thought, well you know, if I’m not going to be around what difference does it make sort of thing. You know what I mean. So on one level I was absolutely positive, but on another level I actually probably was, was, was quite, quite worried. But I never thought that, I don’t think I ever thought that, you know, I, I might not be here in six months or a year’s time.
 

Sheila thinks it’s important to get on with life and not to over-worry about the cancer returning...

Sheila thinks it’s important to get on with life and not to over-worry about the cancer returning...

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Do you feel like you’re quite tuned to your body and how you’re feeling? Or do you just lead your daily life, just make sure that you eat healthily?
 
Yes, I think I am, you know, as a result of having breast cancer, I think I am more aware of, of my body, you know what I mean, because I think it’s like sometimes you think, gosh, you know, I’m feeling absolutely fine, but in the meantime, maybe there’s something. So that, you know, that, and in a sense that’s, that’s what I feel really relating to the possibility of developing colon cancer is, you know, I could be feeling absolutely fine, and totally normal, but in the meantime, something could be going wrong inside. 
 
But I mean I think you can get over neurotic, do you know what I mean? It’s like, I’m very happy now, that my check ups are just annually. And from that point of view after I’d seen the consultant I was okay about not having a colonoscopy, you know, not like going crazy, like nagging my doctor and everything, because in a way, you know, like he could say well if you have a check up, then you say oh well I don’t want to wait three years, because maybe we should have it every two years, and then no, no, no, definitely we should have it every year, and then you worry, and you know, you can end up wanting to have, you know, check ups all the time. I mean I think that’s, sort of if you’re reasonably, a person whose reasonably stable you sort of balance your life. You know, that there’s certain risks, you do what you can and just, you know, get on with life and hope it will be okay.
 
 

Sheila recounts her discussion with her consultant about her hair loss.

Sheila recounts her discussion with her consultant about her hair loss.

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So next to it there was a little coffee bar restaurant, and I said to my friends, I think I’d persuaded about seventeen or eighteen people to come and I said, “Oh you know, if you want to come before, it’ll be really nice to see you, I haven’t seen you for ages. And I’ll be sitting in the coffee bar”. And one or two of my friends, I saw them as they walked in and then they looked, and they were looking for me, and of course it was like, my hair used to be very curly, this, because the doctor, when he said, “You know, when you hair grows back it might be curly.” And I said, “Oh well, my hair is curly.” “Oh,” he said, “Then when your hair grows back.” He said, “It might be quite straight.” And I said, “Oh, when I was a teenager I used to pray for straight hair.” You know, and I said, “If you ironed it, it could break off, and if you straighten it…” I mean it was, you know, one of those things. So this was quite funny, so I had this sort of page boy look. 
 

Sheila thinks she only got chemotherapy for her breast cancer because she pushed for it. She is...

Sheila thinks she only got chemotherapy for her breast cancer because she pushed for it. She is...

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She actually said what it would be and then afterwards radiotherapy. With it being Stage II and being, with the HERS oncogene gene strongly positive, that’s the one that they actually can use Herceptin for. At that stage Herceptin wasn’t available in UK, except as part of a trial. When I asked my oncologist if I could take part in a trial here, he just dismissed it.
 
Anyway and that’s, that’s what, you know, that would be the recommended treatment. So of course, I was a bit confused. So the way I, afterwards, I saw the oncologist I showed him everything that I’d got, and he said, “Oh.” He said, “They have a more aggressive approach in America.” So I said, “Well it’s not the United States, it’s Canada. And they might have a more aggressive approach.” I said, “But they have much better survival rates.” I said, “Britain is right near the bottom in Europe.” At that stage I think only Greece was worse then us. I mean in terms of survival rates for breast cancer.
 
So, he sort of rubbished me, and he said, “Oh you know, there’s risks.” He said, “If you have chemo, it can increase your risks of leukaemia.” And it could be this, and it could be that. Anyway, so basically what happened was that in the meantime, he said, “We’ll start with the radiotherapy.” And then my mum was also coming to be with me.
 
So in the meantime I had an email correspondence, and obviously, and I was speaking to my sister and brother-in-law, because they also said to me, “Don’t go on the web, because there’s just so much information, it can be totally confusing. We will find out for you because we know the right things to find out, the right people to ask and we’ll get back information.
 
Anyway, so, I would send them his replies, then they would send me further information, and then I’d speak to him, and this was going on. In the mean time I also contacted my one cousin in Israel, who, from my perspective, is the doctor that I would trust more than anyone else in the world. Absolutely amazing person. Older. He had been a GP and then he had become a neuroanaesthetist.
 
But he was up to date and he would find out things. And he found out. And he said, “In Israel, this is what would happen.” And I would be having chemo. A friend good friend is at [town name], also in the medical profession. Not an oncologist, but works at the hospital, so then you can be in touch and everything. Her actually speciality is infant baby breathing. And she found out that if I was in [town name], they would be recommending chemo. So it seemed to me, you know, that was definitely considered the best way forward.
 
In the mean time my mum arrived and when she came with me to radiotherapy and met my oncologist, that was the first time he actually said, you know, “Think about it, and you’ll speak to me at the end, and if you want chemo you will be able to have it.” Anyway, comes to the time, I have finished the radiotherapy and I have a little period of recuperation and I have to meet him and he’s going to see how I am. And it’s my decision.
 
And I said to him, you know, after everything I had done the research. I mean there was, there was a slight increase in terms of statistical stuff, in terms of the risk of leukaemia, but it was .014. So, so that’s like, you know, fourteen thousandths of an increase. And if the actual risk of leukaemia was only like about 2%, you know, it was a very, very small increase. I mean you sort of need to understand a bit of statistics, but you know, weighing up all the things up, I thought I wanted to give myse
 

Sheila had difficulty persuading her doctor to arrange a mammogram for her, but in Israel the...

Sheila had difficulty persuading her doctor to arrange a mammogram for her, but in Israel the...

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My mother was diagnosed with breast cancer in, in January 1992, and after she was diagnosed I went to my GP and said, “Could I have a mammogram?” And he said, “No. You’re too young.” Because under the National Health, they only grant them sort of every three years once you get to the age of 50 which actually means that the first time you could be called you could be nearly 53, if the records are up to date. I was called at 53!
 
Anyway I suppose I should have made a fuss, but I didn’t. And I just thought, well I will pay and I will go to the Well Woman Clinic and I’ll have a, the check up, and I’ll have a mammogram.
 
Anyway as a result of that I did go. I subsequently then went to study in Israel for a year (1992-1993) and registered with a student health service and had a totally different experience. When I just had to fill in a form about my health situation… my health status and family, family background, the minute they saw that my mother had been diagnosed with breast cancer, they said, “Oh well, we’ll send you for a mammogram.” 
 
And they sent me straight away for a mammogram as just part of preventative things. And at that mammogram which was like just a year after my first one in UK, they actually found something that they thought might need further looking at, so they sent me, and I had... it was examined and I had fine needle aspiration and an ultrasound and they said, it was actually just thickening, it was just sort of like a cyst. Nothing necessary to worry about, but it should be watched. So they would give me a letter for when I returned.
 
So once I returned in Sept 1993, I had this letter, that I should be followed up, and because, at that stage I had private health insurance through my work, I decided that I would take, use that opportunity and go to a doctor that was recommended, and have it checked out.
 
So after that I actually was able to have annual check-ups and twice things have been found, but then they were just cysts. So in 2000 when I got my little card from [doctor], who was the physician that it was time for me to come for my check, it was actually the week before I was having exams. I was studying part time and I was doing an MA in Holocaust Studies at UCL and I thought, you know I could put it off until after the exams. And I said that’s just a check up, I might as well just go. I can go on the tube and…
 
Anyway I went. And it was already Stage II. So if I hadn’t actually been sort of taking initiative myself, I think by the time it would have been found, it could have been too late, you know. I felt sort of in a sense, in that sense, probably a big let down by the health service. I mean I maybe should have pushed, but on the other hand, you shouldn’t have to push to get good preventative care. 
 
 

A lump in Sheila’s breast was discovered after having a mammogram in Israel.

A lump in Sheila’s breast was discovered after having a mammogram in Israel.

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My attitude is, is that I just know from my personal point of view if I wasn’t going for check ups I probably wouldn’t be here talking to you because my lump was actually underneath my breast. It was the bottom part. And that’s what the physician explained to me. He said, “When people self examine themselves, they very rarely poke underneath.” You sort of go, pat, pat, pat, pat.” And he said what’s really the best, and no one had ever told me this before, was like well obviously you wouldn’t really do it in the swimming pool, because there’s lots of other people around. But is like in a deep bath, if you lie, because then, because of the water, gets you a bit more buoyant and then you feel all the way around. Because it was, it was over 1cm in diameter. So it was, you know, I would have, I can’t believe I wouldn’t have felt it, you know, and of course once it had been pointed out to me, in the few weeks before I had the operation, you know what I mean, I was very aware of it. 
 

Sheila talked to her relatives who were doctors in Canada and Israel about chemotherapy for her...

Sheila talked to her relatives who were doctors in Canada and Israel about chemotherapy for her...

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Anyway I had the operation. He preferred to do a biopsy and then, and then a week later, do the lumpectomy and then I met the oncologist. That was the first time I met him. It was after the operation and he said to me, “It was Stage II.” But he said, “Good news.” But he said, “You know, won’t need chemo, just radiotherapy.” And I said to him, “Well that might be your opinion, but you do know that I’m sending all my results to Canada, where my sister and brother-in-law are both doctors.” I said, “So, you know, I’d be, they’re interested, and they want to know, then I’ll see what happens.”
 
Anyway so I got my macroscopic and microscopic results from [hospital] and sent them off to Canada. And what came back straight away was, effectively like a second consultation… like a second opinion, because the hospital where my brother-in-law works, he’s a cardiologist, the associate professor of oncology in Toronto was there, and she looked at all my results, and said that basically had I been a patient there what would happen is, that I would have chemo and I’d have combination therapy. I’d need six sessions. 
 
She actually said what it would be and then afterwards radiotherapy. With it being Stage II and being, with the HERS oncogene gene strongly positive, that’s the one that they actually can use Herceptin for. At that stage Herceptin wasn’t available in UK, except as part of a trial. When I asked my oncologist if I could take part in a trial here, he just dismissed it. 
 
Anyway and that’s, that’s what, you know, that would be the recommended treatment. So of course, I was a bit confused. So the way I, afterwards, I saw the oncologist I showed him everything that I’d got, and he said, “Oh.” He said, “They have a more aggressive approach in America.” So I said, “Well it’s not the United States, it’s Canada. And they might have a more aggressive approach.” I said, “But they have much better survival rates.” I said, “Britain is right near the bottom in Europe.” At that stage I think only Greece was worse than us. I mean in terms of survival rates for breast cancer.
 
So, he sort of rubbished me, and he said, “Oh you know, there’s risks.” He said, “If you have chemo, it can increase your risks of leukaemia.” And it could be this, and it could be that. Anyway, so basically what happened was that in the meantime, he said, “We’ll start with the radiotherapy.” And then my mum was also coming to be with me.
 
So in the meantime I had an email correspondence, and obviously, and I was speaking to my sister and brother-in-law, because they also said to me, “Don’t go on the web, because there’s just so much information, it can be totally confusing. We will find out for you because we know the right things to find out, the right people to ask and we’ll get back information.
 
Anyway, so, I would send them his replies, then they would send me further information, and then I’d speak to him, and this was going on. In the mean time I also contacted my one cousin in Israel, who, from my perspective, is the doctor that I would trust more than anyone else in the world. Absolutely amazing person. Older. He had been a GP and then he had become a neuroanaesthetist. 
 
But he was up to date and he would find out things. And he found out. And he said, “In Israel, this is what would happen.” And I would be having chemo. A friend good friend is at [town name], also in the medical profession. Not an oncologist, but works at the hospital, so
 

Sheila developed carpal tunnel syndrome in both her hands after having chemotherapy to treat her...

Sheila developed carpal tunnel syndrome in both her hands after having chemotherapy to treat her...

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You know, I mean for me the side effects, it was actually very interesting. The two things that were actually the most problematic were gum disease and carpal tunnel. I got gum disease, because the chemo compromises your immune system. And my teeth had always been a weakness, but I’d not had any problem with gums before or gum disease. So that was a problem. And the other one was, and I got, like carpal tunnel, I got carpal tunnel effectively. I could hardly write sometimes. I had all these terrible pains in my hands. And I never said anything to anyone at the beginning, because I thought well I shall have to put up with this, but it didn’t actually go away after I’d finished chemo, it was still there. And so then again I didn’t... my GP just pooh poohed it. I mean I actually think that the weakest link in the whole Health Service here is the GP service. I know some people might have good GPs. But …
 
Right okay. Anyway, so when I went to my GP, the reason I said, you know, could it be carpal tunnel was because a friend of mine, had told me, she’d had problems and she told me about the exercises she did and everything. And so then he just said, then he just like wrote it down on my card that was what I had. And I said, “Well if, if, aren’t you going to do any tests or anything?”, because there is a test you can do?” “No, no, no.” “Can I do anything?” “No.” 
 
So I was, I mean it was pathetic. Anyway I actually chose to go to a little conference in Israel, really because then I’d gain a chance to see my cousin. And there I had what I consider a full medical examination. He made test of my reflexes, examined me, and he did everything, and he did, and he said, that there’s a specific test that you need. I can’t remember the exact name, but if you have that... and he said, “You need to see a rheumatologist. And that will give you a hundred per cent certainty, but,” he said, “I’m absolutely certainly sure that’s what you’ve got.
 
So then when I came back I went with this to my GP, and I said, “All right.” He said, and because I’d kept up on my own accord the private health insurance I got referred, because he said there was quite a long waiting list. And when I saw the rheumatologist, now this was in 2001, already, he was very nice, and he said to me, “Yes.” And he said, “You have it in both hands.” Which I knew, but the one was much worse than the other. And he said, “Even,” he said. It was a few months after the chemo had finished, so he said, “I think that it’ll never improve enough in the right hand. You will need an operation. But they obviously would never do both at the same time, and we’ll see.” 
 
So I had it done on the right hand, and I mean, the, the hand surgeon, you can see it’s brilliant, you can’t even hardly see the scar. But, and then this one. But I still do sometimes when I wake up have to do some little exercises. But it’s okay. But I mean, it was interesting for me. Those were my two most debilitating side effects.
 
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