Some leukaemia treatments can impair the production of sex hormones, eggs and sperm. In particular, high dose chemotherapy or total body irradiation (TBI) given as preparation for a stem cell transplant, will do this, resulting in temporary or permanent infertility and other symptoms including hot flushes, impaired libido, weakness and tiredness. Women may have a premature menopause with the risk of osteoporosis. Hormone replacement therapy (HRT) may be offered to relieve menopausal symptoms but it is not suitable for all women.
Several people told us that infertility was not a problem for them as they didn't want children or had already completed their family; some had already been sterilised. Most people were warned about possible infertility before starting any treatment that might cause it. However, Ian, aged 35, was in intensive care when his acute leukaemia was diagnosed, and high dose chemotherapy was started immediately, so he wasn’t told about infertility until afterwards.
Ian's doctor found it difficult to broach the subject of infertility after having started him on life-saving treatment, but it was all right as Ian had already had a vasectomy.
Ian's doctor found it difficult to broach the subject of infertility after having started him on life-saving treatment, but it was all right as Ian had already had a vasectomy.
Age at interview: 43
Sex: Male
Age at diagnosis: 35
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Yes that was quite funny actually because it was, I think, one of the doctors, his dreaded speech, and I was able to say to him, ‘You don’t need to worry. I’ve had my two children. We didn’t want any more.’ I volunteered to have a vasectomy.’
Ah right.
And I’ve had a vasectomy a few years before. So the doctor, after working himself up to quite a state to tell me there might have been issues, because it would have been too late, that’s right, for me to - because sometimes they can take samples and store them - it would have been too late for myself, and that’s why he was working himself up, because it was too late, and when I told him this he just went, “Phew, fine”.
Because I’d always decided two children for me in life is enough to look after, regardless of how things - because all my friends are divorced or what have you, and that two children for me is enough, and I’m happy with that, I look after those two as best as I can. So it wasn’t an issue.
Frances and her lesbian partner had already decided that they didn't want children, so infertility was not a problem for them, but she was pleased that her consultant raised the issue.
Frances and her lesbian partner had already decided that they didn't want children, so infertility was not a problem for them, but she was pleased that her consultant raised the issue.
Age at interview: 45
Sex: Female
Age at diagnosis: 42
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Yes. The first thing I wanted to ask you was, they put you on the pill because you were having heavy periods as part of your symptoms. But presumably the treatment will have done something to your fertility?
Yes and when they said they were going to start treatment, in the room I had my consultant, who’s kind of been my main consultant all the way through it, and one of the registrars, and the nurse and the cancer specialist nurse. And it was quite funny actually because by this time I was sitting and I was upright at this point so I was, because of the drugs, I was able to get up and walk about, so I was feeling quite smashing.
And my partner was sitting there, and from the word go, I mean there is always an issue if lesbians or gay men are going into hospital, there’s always the issue of, quite often, do we need to face people’s discrimination? Do we need to face people’s disapproval? And that’s always a fear. I mean I think that saying that lesbians and gays have got equality, we’re only part of the way there, we’re really only part of the way there. And we still face discrimination and we still face disapproval. And I think when you’re feeling so sick and so ill and you’re really, really scared, it’s important that your partner’s involved in that, and it’s important that you don’t need to think about that. And I never experienced any homophobia at all.
And the reason why, when you’ve asked me that question, the reason why I’m going into that is because the very next day after they diagnosed me and they were coming in to tell me about treatment, my consultant says, ‘Now there’s going to be a number of side effects that you need to consider.’ And he said about hair loss and all of this sort of stuff, and he says, “And also there’s a good chance that it could make you infertile”. And I never even blinked, I was like that, “Right, and next?” And I think it was that thing that he knew about her being my partner, he didn’t want to make the assumption that because we were two women we wouldn’t want to have children, so he was trying to cover all the avenues. And I just went, “Forty-two. No. Not interested. Just move on, right. I don’t care about them.” And I says, ‘I know that would be an issue for other women.’
And I think he put it very, very sensitively and he says, “Look. I’m going to explain it to you anyway”, he says, “Just in case.” And I says, “Do you mean I’m going to go through the menopause?” I was quite excited by this. And he said, “No. You might be infertile, it’s different”. And I was going, “Oh right okay.” But he explained the process and I was thinking it was very, very sensitive of him, because it could have been an issue for us, and because I’d actively made a choice years and years and years ago that I didn’t want children, as had my partner, all of a sudden I thought that must be awful for women coming in here who do want to have children and they’re faced with that.
So no when they offered it he was trying to say all the right things and be very, very sensitive and not make assumptions. And I just went, “No. It’s okay. You’re fine. It’s not a problem. Not an issue for us.” And he was like, “Right. Okay.” But I mean since then when they put me on the pill I just thought it was hysterically funny. You know, forty-two years of age, never been on the pill and here I am on the pill.
Dianne, who was childless and aged 50 at diagnosis, had not been warned about infertility before starting treatment and was shocked when her consultant explained it when she started having hot flushes (see clip below). Some women said that although they had been warned about possible infertility, it had not been made clear that they might experience an early menopause.
Men whose treatment may make them infertile are usually invited to ‘bank’ some sperm samples before it starts. This is often done in a different part of the hospital but men who are already in their own isolation room may be invited to do it there. The samples are frozen and stored for possible use in the future. Treatment for acute leukaemia usually starts as soon as possible after diagnosis, so men who wish to bank their sperm have to do so quickly at a time when they are still in shock from learning the diagnosis. Aley said his treatment was delayed by two days so he could bank his sperm.
Having just been told he had leukaemia and no immune system, Jim was stressed by having to leave his hygienic isolation room to go to a dirty room elsewhere in the hospital to bank his sperm.
Having just been told he had leukaemia and no immune system, Jim was stressed by having to leave his hygienic isolation room to go to a dirty room elsewhere in the hospital to bank his sperm.
Age at interview: 24
Sex: Male
Age at diagnosis: 23
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And one of the first things they said was that, “The chemotherapy you’re going to have will affect your sperm production. Hopefully that will come back but we don’t know for sure so we’re going to ask you to do some sperm banking.” And I was, obviously they don’t want me to catch an infection because my immune system would be very low, although I was feeling absolutely fine, and that meant going from this positive pressure, hyper-sealed room, my own room, my own bathroom, it was very clean and very nice. It meant going over the road to this Victorian building, and luckily a nurse took me over, but then I had to sit around there on my own. You’ve just been told that you have no immune system and you really have no idea whether it’s been mentioned that any infection you could get could be really serious and certainly something that you want to avoid. And you’re asked to go and sit in a room, this dirty little room, with some other random members of the public who happen to have a cold. And you’re just sitting there trying to put your hoodie over your face because you don’t want to breathe the air that they’re breathing out. And that was a really horrible, traumatic experience. This is under the NHS so I’m sure there are better places, but that wasn’t what I wanted right then.
But it was okay and the next day they started chemotherapy. And I had a PICC line put in, which we’ll get to later. But they said that the sperm banking, we should try and do it again, we’ve got some and it’s live and it’s okay but the more the better really. So they said, “We’d like you to go over again.” And by this stage I’d heard a lot about chemotherapy and the nerves were starting to build up. And I got to the lift with the nurse who was going to take me over that day and she said, “So how are you feeling? It’s all quite a lot isn’t it?” And I felt like saying, “Yeah, it bloody well is, isn’t it.” But I just kind of nodded my head and right then panic set in and all the muscles in my back just kind of seized up. I just turned totally white, no energy, it’s like “Oh, I’ve just got to sit down. This is horrible. It’s horrible.”
So I walked back inside the ward and sat down. And she left me to go and do something, which she shouldn’t have really done, should have stuck by my side. And I went back to my room, as pale as a sheet and worked out that it’s just stress, and then found out that actually I could do the sperm banking in my room, in my nice clean room, not have to go over to this horrible place, and they could just take the sample over and it would be fine, which just left me annoyed and stressed, and that really wasn’t a very pleasant experience. But you don’t really think about, well I wasn’t really thinking about kids anyway, more just trying to find out what’s going to happen to me and how everything’s going to go.
It is less easy for women being treated for leukaemia to preserve their fertility. It may be possible to store some fertilized eggs (embryos) using sperm from a partner, so they can be re-implanted into the womb later. It may also be possible to freeze unfertilized eggs but the success rate with these is lower than for embryos. However, collecting the eggs takes a few weeks so this is possible only where it is safe to delay the start of treatment. Research is being done into the storage of pieces of ovarian tissue for later use, however, this procedure is still experimental and reimplantation of the thawed tissue may not be available at all UK hospitals. So far, only a few babies have been born using this method but the number is rising all the time.
Julie had a slice of ovarian tissue frozen but has not used it, in the 11 years since, as she does not want to go through hormone treatment that might be needed without a guarantee of success. Other women were given the option of freezing embryos, or were told about it, but didn’t do it.
She regrets that she didn't freeze some embryos when she had the chance. She would have liked to talk through the pros and cons with someone but this wasn't offered so she didn't make it a priority.
She regrets that she didn't freeze some embryos when she had the chance. She would have liked to talk through the pros and cons with someone but this wasn't offered so she didn't make it a priority.
Age at interview: 40
Sex: Female
Age at diagnosis: 28
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But it has obviously, I think it has affected, it’s played a part in us, me not having any children. Not because it was completely medically impossible, I don’t think that is true, but I just think at the time we were given the option of freezing the embryos, but it was such a difficult time and such a confusing time for us, because at the time of diagnosis, I don’t think we, and besides we were young then so we didn’t really think about, we hadn’t really thought about children and family and all of that. And when this option was given to us I think we just, we felt we had to deal with the illness and this could probably take a back seat.
And unfortunately because of the fact that we neglected it at the time, now in hindsight I feel it was such an important decision and we should have actually acted on it whilst we had the opportunity, and we didn’t.
It would have been completely possible had I persisted, but for some reason we never actually got round to weighing up the pros and cons and making a decision and sticking with it, which is something at the time it didn’t seem like a big deal, but now in hindsight I feel that’s a major chapter in my life which is probably missing, which needn’t have been missing, had we had the foresight. But on the whole I can’t complain. I mean the drugs worked fantastically well for me, I’ve still got a good career and, yes, things are fine so, yes.
Do you think when the professionals talked to you about this at the very beginning that they could have done more to kind of spell out for you the size of the decision, the importance of it at the time, or do you think it was kind of brushed under the carpet in some way?
No, I don’t think it was brushed under the carpet because I think on their part they did actually do what they can. I think they did do what they could at the time, because they did repeatedly ask us to come in and make an appointment for coming and getting the eggs harvested and so on. But we never actually took them up on that offer and we never actually took it seriously. I mean on that front they were quite eager to get the process up and running, but maybe if they had somebody, not a counsellor but somebody, an information officer or somebody who could have actually just taken us through the pros and the cons of not making this decision. That might have signalled some sort of alarm bells in us amidst all of this other confusion of trying to adjust to being diagnosed, and treatment and all of that, maybe it would have made us stop for a bit and think about it. But I don’t think there was any of that. It was just that we were referred to the maternity, this other service and they just kept telling us to come in for our appointment to harvest the eggs. So that might have helped. I don’t know, but no, there wasn’t anything like that at the time.
Because information is around if you want to sort of sit and look for it yourself on the internet, I’m sure there’s plenty of research and plenty of sort of other data available for you to make an informed choice. But there wasn’t very much that the doctor or the hospital was able to give at the time. But I think the main thing is that we probably didn’t place it right at the top of the priority list. That was the main reason, and had we done that then I’m sure we would have found a way to go about it in the safest possible way, so yes. Pretty much.
So how do you feel about that decision now? Do you have regrets?
I do have regrets from time to time because it needn’t have been. It’s not that there was absolutely no way around it. There there were ways around it but we didn’t explore them enough, so it needn’t have been like this. It could have, you know, I could have conceived , but again, but then again I probably wouldn’t have been, you know, a a healthy energetic mother looking after their kid. It might have taken a toll on my health, but who knows. I mean we’ll be debating these questions for a long time, you know, down the line, so but yes, there is very much a a sort of a sense of regret that had we got our heads together and really thought about this maybe this wouldn’t have happened.
Ann was told about options for preserving fertility but was not encouraged to pursue them and was concerned that the procedures might make her leukaemia return, so she didn't do it.
Ann was told about options for preserving fertility but was not encouraged to pursue them and was concerned that the procedures might make her leukaemia return, so she didn't do it.
Age at interview: 40
Sex: Female
Age at diagnosis: 33
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Did they offer you any fertility preservation at all?
No.
Did they talk about it?
At the time, I’m going back about seven years now, it was very experimental. The hospital actually got me something from a hospital in Manchester which explained what they would need to do IVF in the future. And I think at the time they couldn’t freeze eggs but the experiments were to do with removing part of your ovary and then putting it back into your arm and seeing if things would happen. But they said it was very experimental. It had not actually been done, they’d gone through a lot of research with it and I was again told not to consider waiting for something like that to happen.
I was always very conscious because I’m sort of, maybe it’s because I don’t understand a lot of medical jargon, that I thought I felt that if they were going to try and harvest eggs from me it would stimulate something, what else could they stimulate in my body? And I think that was a very grave consideration of mine. I didn’t want the leukaemia to come back.
Coming to terms with the risk of infertility can be difficult and people react in different ways. Some felt it was better to concentrate on treating the leukaemia first and to consider the possible infertility later. For men who had banked their sperm, knowing that they might be able to father a child later was comforting. Jim, aged 24, said it was strange not knowing whether he was fertile or not and that he would like to have children one day but would be happy to adopt if necessary.
Aley's treatment would definitely cause infertility but he was more concerned about curing the leukaemia than planning his future life; having banked his sperm comforted him.
Aley's treatment would definitely cause infertility but he was more concerned about curing the leukaemia than planning his future life; having banked his sperm comforted him.
Age at interview: 33
Sex: Male
Age at diagnosis: 31
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Before you started treatment did your doctors talk to you about how it might affect your fertility?
Yes they did tell me and they have to store your sperm for if, because I do not have any children. I was not married as well. And that’s why they delayed the treatment for two days because they have to store the sperms. And I had an appointment with the radiologist on the 14th of February, which was Valentine’s day, and she said to me that you will not be able to be a father for the rest of your life. I said, “Well, is there any chance?” She said, “The chances are next to nil because you’re going to have full body irradiation.”
It didn’t affect dearly to me, it was not a very big matter at that time for me. It shouldn’t be a very big matter for anyone at that stage, because at that stage you wanted to kill the cancer within you and then think about the life. Because if you started thinking about a five year plan at that time it’s not very practical. When I told my brother he was deeply upset about it. But I said, “I still have a chance, they still have the sperm”. I said, “I can still have a family. It’s not bad, you can be positive about that.” So it does come back to my mind sometimes but you lose some, you gain some. That’s the chemotherapy.
Young women who had not yet started a family, and for whom egg or tissue banking was not an option, were more likely to weigh up the benefits and risks of having treatment because of a strong desire to have children later. Many said that after their treatment was over they wanted to have the same life choices as everyone else. Ann, aged 33 at diagnosis, had just got married and debated with her husband and a nurse whether she should have a stem cell transplant that would definitely make her infertile. She eventually decided there was no point in having a child if she might not survive to bring it up.
Julie, aged 27 and single, was devastated by the prospect of being made infertile by a stem cell transplant so initially refused it; she was eventually persuaded because of the risks to her life.
Julie, aged 27 and single, was devastated by the prospect of being made infertile by a stem cell transplant so initially refused it; she was eventually persuaded because of the risks to her life.
Age at interview: 38
Sex: Female
Age at diagnosis: 27
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So it was about when, well I’d say about the end of April now, and the professor’s registrar came to see me. Lovely lady, very very sweet lady. Still see her now. And very very sweet lady and she started talking about the transplant, you know, ‘Harvest your cells. We really really pump you.’ I was having about 150 ml of chemotherapy every day. No radiotherapy at this time. ‘But we’re going to kick it up. We’re going to give you 1500 ml. We’re really going to fry you. On top of that you’re going to have radiotherapy a couple of times a day every day and it’s going to take about a three week stretch.’ And I just knew that there was a big ‘but’ attached to that. So I just said, ‘Lovely. Sounds great.’ And they said, ‘With this we’re about eighty per cent sure that the leukaemia will not return.’ I said, ‘But there’s a but and I know there’s a but attached to it, I can tell by your voice, so tell me.’ And they said, because of the extent of the treatment, very, very strong treatment, the likelihood of me being able to have children later on in life is practically zero. And my mum just looked at me, because she was at the end of my bed, and she says, ‘You won’t have it done will you?’ And I said, ‘No.’ So the doctor said, ‘Well we won’t talk about it any more. I’ll leave you and you need to think about it.’ Okay. Fine.
And my dad came in from his normal, he worked in the mornings at work and he came up to London every afternoon. And he said to me, ‘What do you mean you’re not going to have it done? Of course you’ve got to have it done.’ I said, ‘No. When I get out of here I want a normal life.’ I think other people agree with me, normality was everything to me. ‘I want to go back to my job. I want to go home. I want to carry on with my partner. I want to grow older. I want to get married. I want children,’ I had nieces and nephews at that time. ‘And to have them would be everything to me. So that they’re not doing it, no.’ I said, ‘I’ll run that risk. I’ll just have the chemotherapy now. I’ll go home and we’ll just be monitored closely and then basically pray to God it never comes back. I’ll get married later on in life and I’ll have children.’
So anyway, unbeknown to me, my parents were having private meetings with my consultants and my professor. And they really kept on saying to my parents, ‘You’ve got to talk her into having it done. She won’t live without it. She had it so bad that she really needs to have it done.’ And my partner used to stay with me Monday to Friday and then he would go home for chill time, and my parents would stay with me over the weekend. And I remember this conversation, and my parents were in the room with me, and I’ve never seen my dad cry, and he just burst into tears. And I just said to him, ‘What’s wrong?’ And he just said to me, ‘With every ounce of me I beg you. Please, please, please, please, please have this transplant. If your mother…’ - my mum and dad have been married now 46 years, - ‘and I would have married her even if she couldn’t have had children, I loved her, and someone will marry you whether you can have children or not. So please, please, please, please, please have this transplant. You will die without it.’ And I was like, ‘Okay. Fine. Yeah. I’ll do it.’ And they were like, ‘Quick, go and get the consent form now. Quick, go and get it before she changes her mind.’
And they literally, they did it, they came with the consent form, I signed, and I think within about two days I was taken down to theatre and I had a Hickman line put in my chest.
And then I then met my now husband in 2000 and I thought to myself, ‘Oh God. I really like this guy and how do I tell him that I can’t have his children?’ So it wasn’t that far into our relationship that I said to him, ‘I’ve got something to tell you.’ And he went, ‘Oh God. I knew it, you’re married.’ I went, ‘No no no no. I’m not married’. ‘The little girl at your house the other, your your parents’ house the other day, she’s yours?’ I said, ‘No no no.’ I’m, ‘Yeah. God I’d love her to be mine.’ No she was my niece then, she still is and I said, ‘I can’t have children.’ I said, three years ago I was diagnosed with leukaemia and because of my treatment I can’t have children.’ And he said to me, ‘Is that it?’ I said, ‘Kind of a big it, don’t you think?’ And he went, ‘No. No.’ He said, ‘We’ve found one another. It’s taken me a lifetime to find you. I’ve found you.’ He said, ‘No we’ll have a, we’ll have a good life.’ He said, ‘Doesn’t matter that you can’t have children and we’ll never speak about it again.’ And God love him he never has.
Some women experienced a profound sense of sadness or loss when they became infertile during treatment, even if they had not been planning (more) children. Other people didn’t always understand why losing their fertility was so important to them when they were facing life-saving treatment choices.
Elaine wasn't bothered initially by becoming infertile as she already had 2 children, but when it happened it made her feel broody.
Elaine wasn't bothered initially by becoming infertile as she already had 2 children, but when it happened it made her feel broody.
Age at interview: 39
Sex: Female
Age at diagnosis: 35
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Presumably some or all of your treatment will have had an impact on your fertility. Is that right?
Yes. When I first went in, and I think it was the Tuesday when I went in, they asked if I had a family, and I said, ‘Yes. I’ve got a wee boy and a wee girl.’ And basically they told me that I would become infertile and that would be it basically, that even if I wanted to they didn’t have time to take any eggs and freeze them. They just, I had to get my treatment there and then, right now. End of. No questions asked. There was no ifs, buts, or anything, so that was that. Fair enough. Okay.
How did you feel about that?
At the time I was like, ‘Right, Okay’, not really caring, ‘Start the treatment’. As I told the doctors, ‘Do what you have to do no matter how painful it is just get rid of this.’ That’s what I says to them, it’s just a side effect. I was very lucky I’ve got my two kids. I’ve got a wee boy, I’ve got a wee girl. I was quite happy.
Ah, I wasn’t happy. There was a stage I went through actually maybe about two months into the treatment, and oh I just, ‘I want a baby.’ I just got so broody. I don’t know what it was, whether it actually kicked in that that was it. My periods had stopped. Nothing was going to happen again. That was it. And I says to my husband, ‘I really want a baby’, things like that. ‘Well, you know you can’t.’ ‘Yes I know but I just really want one right now, I need to have a baby.’ I says, ‘I’ll be fine. I’ll get over it.’ And I did, about a week later that was me, I was fine. But just at that, I don’t know whether it was just, it kicked in in my head that even if I wanted to I couldn’t.
Do you have any regrets now?
No. No.
Although Dianne was unlikely to have children at age 50 she still felt a sense of loss when her treatment brought on the menopause. She found other people's attitudes unhelpful.
Although Dianne was unlikely to have children at age 50 she still felt a sense of loss when her treatment brought on the menopause. She found other people's attitudes unhelpful.
Age at interview: 53
Sex: Female
Age at diagnosis: 50
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How do you feel your illness has affected the way you feel about your femininity?
Ah now that’s an interesting point, because with all this going on I hadn’t given a thought to my fertility or my femininity, and after my treatment I had started to feel a bit, hot flushes and things like that, and I was talking to my consultant and he said, ‘Oh well’, he said, ‘Well you’ve just gone into premature menopause’, he said, ‘Because obviously the chemotherapy has fried your ovaries.’ And it was like he’d hit me physically across the face. I was so shocked, and I don’t know why I should have been because obviously I do know that chemotherapy affects your fertility, but it was the way he said it and the fact that I hadn’t even given it any consideration with everything going on, that I was absolutely astounded.
And anyway I ended up going to a gynaecologist who was absolutely lovely and she dealt specifically with cancer patients who have gynae problems afterwards. And she was wonderful and got me through it because I did feel different because I was no longer fertile, and it’s an extraordinary sensation. And it did make me feel that I’d lost something. There was a sense of loss, and because I haven’t had children people just boo-hooed it and they said, ‘Well you weren’t going to have children anyway so that’s all right then isn’t it.’ And that wasn’t very helpful because I still felt I’d lost something and I was different. And maybe I wasn’t going, well I wasn’t going to have children, but the fact that you no longer could, not the fact you couldn’t, and the fact that you had passed a big milestone in your life made an impact.
Several women started the menopause during or after their treatment. Elizabeth’s periods stopped during interferon treatment but she has never had menopausal symptoms. Julie had terrible hot flushes and, after having a blood test to confirm she was menopausal, she was put on Hormone replacement therapy (HRT). Elaine was put on HRT before developing any menopausal symptoms. Elsa has hot flushes despite taking HRT and doesn’t know whether they are caused by her illness or the menopause.
After treatment Frances had hot flushes with nausea, restlessness at night and felt moody when she should have been having her period, but considered her menopausal symptoms relatively mild.
After treatment Frances had hot flushes with nausea, restlessness at night and felt moody when she should have been having her period, but considered her menopausal symptoms relatively mild.
Age at interview: 45
Sex: Female
Age at diagnosis: 42
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But it has actually brought on the menopause, which I’ve been neither up nor down about it. It’s not been a terrible trauma for me at all. I’ve not had any adverse effects over it so quite delighted to be honest with you, so yes.
What menopausal symptoms have you had?
Hot flushes. Oh hot flushes. I hate those, and when I get them I can feel quite sick. And I can get very restless in bed, but I, well I don’t think I’ve had any mood swings, I don’t think I’ve been the slightest bit, my partner tells me, she’ll often say, ‘You used to have your period at the start of every month and it feels like you’re pre-menstrual’, because I’d be quite, huh, you know, quite nippy, but nothing major. Again, not anything like I would have expected. It’s a bit like you don’t realise how much you take in all the horror stories about these situations. And it’s not you dismiss what women go through, certainly when they’re menopausal, because a lot of our friends are menopausal at the moment, and it’s actually quite hysterical, trying to organise anything is a nightmare. We get the dates wrong, we miss information, we don’t bring diaries, we don’t do this, we don’t do that, it’s quite funny. It’s like the menopausal version of the Keystone Kops, it’s like we’re all bumping into each other and forgetting things and, oh doesn’t matter. So it can be very amusing a night out or a night round a dinner table.
But certainly I’ve not had anything that I’d been led to believe the menopause could possibly be. I mean I know it’s very different, like anything, how you physically and emotionally respond to something is different for the next person, but I really expected it to be worse. The flushes and the restless nights are probably the worst that I get, so not a terrible hardship.
Infertility has varying effects on people’s lives and relationships. Women who would have liked children often envied friends and family who had them. Some developed close relationships with other people’s children and became an ‘auntie’ or godparent to them. Ann said that her inability to have children might have been a factor in her subsequent marital breakdown. She and her husband had never considered adoption but she has no regrets as she has nine godchildren who she spoils more than she could her own. Julie went on to marry a man who didn’t mind her infertility. They considered adoption but decided against it. (See more about experiences of infertility).
Julie envies friends and relatives who have children. She loves all her nieces and nephews as if they were her own. She's grateful for what she has and tells herself not to be greedy.
Julie envies friends and relatives who have children. She loves all her nieces and nephews as if they were her own. She's grateful for what she has and tells herself not to be greedy.
Age at interview: 38
Sex: Female
Age at diagnosis: 27
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So you were asking me about obviously what it’s like being infertile. As I say, friends, pregnant, children and you’d go to see them and they’re holding a baby and you think, ‘God I’d give an arm, I know, an arm to have that.’ And even more so when your family, my brother, my sister had two children when I was ill, but then my brother met his now wife and he had children. And I remember going to the hospital and just opening the door and seeing him with children and it breaks your heart. I would be a liar if it didn’t. And it still does even today. I’ve got nieces and nephews now that are older, a lot older. My niece is sixteen and she’s beautiful, and my nephew is, he’s just a, they’re just a joy, my nieces and my nephews, they’re beautiful. And I love them like they’re my own children. I’d do anything for them. I’d give them, if they say to me, ‘Can I have that?’ I go, ‘Yeah okay.’ And I shouldn’t but I do.
And my sister and my brother tell me I’m my worst enemy, but I’d give an arm for them to be mine, and we have looked into adoption. We looked into it. Didn’t feel it was for me, or for us, I should say. But my husband has been wonderful. He has never spoken about it again. He has never thrown it at me. But if I have, as much as I’ve said I’ve learned a lot and it was an amazing experience, an awful experience, that has been, the pain was nothing compared to being told that you can’t have children. God, and I would, I’d give an arm. If anybody could say to me.
Last year it was my sixteen-year-old niece, it was her prom and we went up to London to get her dress. Oh she looked beautiful. And I’m told she looks a lot like me when I was that age. And I wasn’t here, we were on holiday at the time and I came home and they showed me the video of it, and she walked out and I just burst into tears. My sister was crying. And again we’ve got such a good relationship now she rings me up and we talk on the phone, and in all honesty it kills me. But if it meant that I’m alive then it’s the only price to pay. I had to have the transplant otherwise I would have died.
So therefore children just weren’t an option, but I would have given, I’d give an arm, an absolute arm to have my own child. And certainly most people say I’ve got the best husband in the world. He’s turned my life around and to have his child would be everything to me. But it’s not possible, but we have one another, and all I do is I have days when I cry, today being one of them, and all I do is I sit there and I’m thankful for what I have got. And a good family. I’ve got good friends. And the fact that I haven’t got children, I’ve got more than most people have got, and I’m just thankful for what I have got. And I’m not greedy. I’ll leave it at that, I’m not greedy, I won’t be greedy, I’ve got what I’ve got, and I’ve survived. I think, ‘I’ll stick with that and don’t be greedy.’ So that’s what I do. Stick with that.
The biological therapy imatinib (Glivec) may affect fertility and there is some evidence that it can damage a developing fetus (Macmillan Cancer Support August 2015). Therefore people were advised not to get pregnant or father a child while taking it. Some women would have liked to get pregnant but were reluctant to take a break from imatinib in case it caused their leukaemia to recur. A 40-year-old woman who had been taking the drug for 8 years envies her friends who have children and regrets not having pursued the possibility of getting pregnant. A woman in her 30s considered the risks to the fetus were small so didn’t try to avoid pregnancy while in a relationship, but it didn’t happen.
Aged 28 and with a partner, Chanelle wants to start a family but would have to stop taking imatinib (Glivec), which could compromise her remission; she feels pressured to decide in the next two years.
Aged 28 and with a partner, Chanelle wants to start a family but would have to stop taking imatinib (Glivec), which could compromise her remission; she feels pressured to decide in the next two years.
Age at interview: 28
Sex: Female
Age at diagnosis: 20
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Obviously the only persisting issue for me now is starting a family, because that’s something that my partner and I are talking about now. And there are different options open to us and everything. But at the moment that feels like that’s the next hurdle really because I would have to come off my Glivec for a period of time, but that obviously, about ten, eleven months really, which you might be able to sustain your remission on it theoretically, but not enough is known about the drugs to know if that would be the case for everybody, although it has been done.
So that option is there but obviously it’s a difficult decision to make because I mean it’s not just do you take a risk with your own life? It’s is it irresponsible to start a family if you can’t guarantee that you’re going to be around for the next ten years, twenty years? But then at the end of the day I think well it’s probably, that this drug at the moment is working and there are other drugs out there. And at some point perhaps you just have to take these risks because nobody’s future is certain really, is it? But it is a risk I feel that that is really a big, big decision that I’m faced with and it’s becoming more and more of an issue as the months go by really. And it is something that I do have to make a decision about within the next couple of years and I am actually feeling the pressure of that at the moment. But I just think I’m going to wait for about six months and just see how I feel on that issue really.
Similarly, Glyn was warned that he should not conceive a child while taking lenalidomide (Revlimid) because birth defects were possible.
Last reviewed: December 2018.
Last updated: December 2018.
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