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Living with and beyond cancer

Fertility

Fertility, or the ability to have children, is something that most young adults take for granted. However, of those diagnosed with cancer, some may also have to face the prospect of losing their fertility as a result of the cancer or its treatment. This can be as difficult to come to terms with as the cancer diagnosis itself. Surgical removal of both ovaries, the womb, or both testicles, will cause infertility. Other cancer treatments that can damage fertility include: radiotherapy to the whole body, brain, pelvic area or testicles, high dose chemotherapy before a stem cell transplant, or certain combinations of chemotherapy drugs; not all chemotherapy has this effect and doctors cannot always be certain that fertility will be affected. For some people their treatment damages egg or sperm production temporarily but it returns to normal over time, while for others the effects are permanent.
 
It is sometimes possible to preserve male fertility by extracting and freezing healthy sperm for later use. Men may be invited to provide a sperm sample either in a private room at the hospital or at home if they can transport it to the hospital quickly.
 

He was invited to bank some sperm before having chemotherapy for his testicular cancer; doing it...

He was invited to bank some sperm before having chemotherapy for his testicular cancer; doing it...

Age at interview: 32
Sex: Male
Age at diagnosis: 27
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Before I had the chemotherapy I had the surgery, well I had two lots of surgery, and then after I had to have the second surgery they said I'm going to have to have chemotherapy, which meant sperm banking because there's a high percentage of men that don't get a high sperm count back after having chemotherapy. Again, because we were interested at having a family at some point in the near future, my wife and I agreed that sperm banking was the way forward. So the local specialist clinic that is involved in that is about a 25 minute drive from my home. Now the very limit to what they will let you produce the specimen, without going into too much detail, produce the specimen and bring it into them, is 20 minutes.
 
Right.
 
Now I didn't really want to be sitting down in a dingy dark room in this clinic and try and produce specimens there because it just, the thought of that didn't really appeal to me too much. So we went for, I persuaded them to accept sort of the home option. But I can remember jumping into the car with, now, my wife and flying down the motorway and I almost thought to myself well, what would happen if the police stopped me? And I would turn, he turns round, "What's this sir, are you having a baby?" And a possible answer would be, "Well possibly, you know, maybe at some point in the future," and trying to go into explanations would've been quite humorous. 
 

He had banked sperm before having chemotherapy for Hodgkin’s lymphoma 15 years ago; he hasn’t...

He had banked sperm before having chemotherapy for Hodgkin’s lymphoma 15 years ago; he hasn’t...

Age at interview: 46
Sex: Male
Age at diagnosis: 29
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 And was there ever any problem with fertility from all the treatment that you had, because you’ve gone on and fathered another child I think?

 
Oh right yes of course, that was a major side effect. No, I became sterile as a result of the chemotherapy, so I cannot father children. What did happen though was that I was offered the ability to place my sperm in a sperm bank, which I did, and that’s been there for the last fifteen years, and it was literally six months ago they wrote to me asking me whether I wanted to let this go now. So for the last fifteen years I could have used artificial insemination if I wanted more children. I’ve remarried but my daughter, it was my wife’s before we got married, and she was three at the time, so I’ve since formally adopted her and now she’s my daughter. But no I couldn’t have had children naturally, but through the last fifteen years if I’d wanted to, I could have tried for artificial insemination. And this was offered, you know, I didn’t have to ask for it, and it was nice to know it was always there if necessary.
 
So they were offering that as long ago as…?
 
1990, yeah.
 
Yeah good.
 
Yeah and they say they normally hold it for ten years. But they held mine for fifteen. In fact I’ve moved house maybe ten times in those fifteen years and lived abroad for seven years, and how they found me I’ve no idea, but they wrote to me recently asking me whether I wanted to let it go, and I let it go at the time. But I was very pleased to know that was available and it was always there.
 
Some men with testicular cancer were found to have a low sperm count so they weren’t able to bank a sample. A 26-year-old in this situation said he felt ‘gutted’ because, although he hadn’t been planning a family at that time, this had effectively removed his choice. Luckily his sperm count returned to normal some years after his treatment. A 29-year-old didn’t even give a sample because he was told his sperm count would be low because of the type of testicular cancer he had. A 42-year-old man with Hodgkin’s lymphoma declined to bank sperm because he and his partner were not planning a family and didn’t want to delay his chemotherapy.
 
Depending on their age and type of cancer, women may be offered an opportunity to freeze embryos (eggs fertilised with their partner’s sperm). Freezing unfertilised eggs (for later fertilisation) is still experimental but may also be offered in some hospitals. In both cases a course of hormone treatment is required to stimulate egg production before their extraction, and the process can take 3–6 weeks. Some women had considered this option but were advised against delaying their cancer treatment because it would lower their chance of survival. A newly married 28-year-old with leukaemia was encouraged to do it but declined.
 

She was repeatedly encouraged to harvest eggs before treatment for chronic myeloid leukaemia but...

She was repeatedly encouraged to harvest eggs before treatment for chronic myeloid leukaemia but...

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, you know, 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, you know, we felt we had to deal with the illness and, you know, this could probably take a back seat. 
 
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, you know, had we had the foresight. But, you know, on the whole I can’t complain. I mean the drugs worked fantastically well for me, you know, I’ve still got a good career and, yeah, 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, you know, 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 they have, 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, you know, make it or make an appointment for coming and sort of getting the eggs harvested and so on. But we never actually took them up on that offer and we never actually took it seriously. Maybe, I mean on that front they were quite eager to get the process, you know, up and running, but maybe if they had somebody who, like a, you know, not a counsellor but somebody who, an information officer or somebody who could have actually just taken us through the, you know, the pros and the cons of not making this decision. That might have, you know, signalled some sort of alarm bells in us and, you know, amidst all of this other confusion of trying to adjust to this, you know, 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, you know, 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.

 

Another option is extracting ovarian tissue for possible later re-implantation. However the methods for doing this are still at the experimental stage and there are only a few places where it can even be attempted. This is quicker than harvesting eggs or embryos but is still an experimental procedure and few babies have so far been born by this method. Again, because such procedures need time to carry out they may not be possible if treatment is needed urgently. Julie had this done when diagnosed with acute myeloid leukaemia aged 27. Her doctors recommended treatment that would definitely make her infertile. She initially refused this treatment in order to preserve her fertility, but was eventually persuaded because the risks to her life without it were so high.
 

Julie didn’t want to lose her fertility. She had an ovarian slice frozen before her leukaemia...

Julie didn’t want to lose her fertility. She had an ovarian slice frozen before her leukaemia...

Age at interview: 38
Sex: Female
Age at diagnosis: 27
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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 anymore. 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 in the, 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. I want a normal, when I get out of here I want a normal life.’ I think, you know, 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, you know,’ 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, ‘You know, 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 never, you know, I remember this conversation and my parents were in the room with me, and I’d never seen my dad cry, and he just burst into tears. And I just said to him, you know, ‘What’s wrong?’ And he just said to me, ‘If there’s, with every ounce of me I beg you. Please, please, please, please, please have this transplant. You know, if your mother.’ You know, my mum and dad have been married now forty-six years and, you know, ‘I would have married her even if she couldn’t have had children, you know, 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.’ 
 
I did go in for an ovarian slice. I did before they started the treatment, I did have part of my ovaries frozen. They are still at the hospital, I think, to this day. But again, technology at that time wasn’t that they could defrost them and do all of that back then. I know they can do it now, but I’ve just felt that my age, I’m obviously eleven years older. You know, eleven years and the treatment and the drugs that they’d have to give me, they’re not a hundred per cent sure that I would even be able to carry a child. And also the fact that I now take the HRT. I have done for the last eleven years. So with all of the complications involved and the drugs that they’d have to give me and everything that we felt, we didn’t go down that road. 
Some women went into surgery not knowing how much of their reproductive organs would be removed. Others sought a second opinion about treatment decisions that would affect their fertility, and avoided surgery that would make them infertile. One went on to have two children after a radical trachelectomy for cervical cancer, a relatively new technique which is becoming increasingly available in the U.K.
 

She sought a 2nd opinion about the need for a hysterectomy for her cervical cancer and had a...

She sought a 2nd opinion about the need for a hysterectomy for her cervical cancer and had a...

Age at interview: 39
Sex: Female
Age at diagnosis: 31
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Why did you go for a second opinion?
 
My husband’s a doctor and he happened to be working at a particular hospital in London and he bumped into a registrar who worked for a consultant there, a gynaecological oncologist who, and the registrar said, "Don't do anything until you've seen this consultant." So [my husband] arranged it through the secretary and asked if we could have a second opinion, and he was willing. But we had to get a letter from the original consultant, so we phoned his secretary and she arranged for a letter to be sent so that I could be referred to the new consultant in London.
 
At that stage did you get any other information, did you look anywhere else?
 
My husband looked on the internet and in the medical library at work to try and find out as much as we could about cervical cancer and the stage that I was at. And I was diagnosed as having a stage 1B, so at least we had something to focus on and to look at, and we knew where roughly we were going.
 
And then the next one you found out about the trachelectomy?
 
Yes initially the consultant in London carried out all the same tests more or less again to be sure what he was looking at. He did then a CT scan, an IVP, which is a test on your kidneys, and did all the internal examination under anaesthetic again, and asked for the slides of all the colposcopies and everything to be sent from the first hospital to the new one so that the department there could have a close look at them, because he works very closely in conjunction with the microbiology department. And then he tried to do a cone biopsy, a large cone biopsy which he said might do the trick or might not, so he tried that but unfortunately the margins weren't clear enough - there has to be a certain margin around a tumour before they'll say that it's been sufficiently removed - the margins weren't clear enough, so he said, again we had a big meeting that time with several members of his team, the registrar, the Macmillan nurse, everybody was there, and we had a very open discussion about what was available. And it came down to the fact that either it was going to have to be a hysterectomy or there had just been a new operation carried out in France that they were willing to try here if I was willing to let them do it, and that was the radical trachelectomy.
 
So how did you feel about that?
 
We felt we had nothing to lose because if it didn't work then they could still do the hysterectomy afterwards, so we thought it had to be worth a try to see if it would give us the results that we needed. So I didn't actually know until I'd woken up from the anaesthetic what they were going to do, but they were successful.
 
When you woke up from the anaesthetic?
 
From having the radical trachelectomy. They said they would do what's called a frozen section, which is where they take a slice of, remove the tumour and send it to the lab immediately while you're still under anaesthetic and they phone the results back directly, so that they knew that they'd removed all the tumour. If it hadn't been clear then they would have proceeded on to a hysterectomy.
 
So you really didn’t know?
 
No, not until I woke up
 

After having one cancerous ovary removed, a hysterectomy was cancelled because a 2nd opinion...

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After having one cancerous ovary removed, a hysterectomy was cancelled because a 2nd opinion...

Age at interview: 38
Sex: Female
Age at diagnosis: 33
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Anyway the day came where I had to go to... The operation was on a Wednesday and I had to check-in on Tuesday afternoon. And we got there, I think it was two o’clock check-in time on the Tuesday, it must have been about the 26th or something of July, and just as we were coming into the ward the consultant was doing her rounds. And she saw me and she pulled me off into a side room. And at this stage I’m thinking in terms of, I’m checking-in for hysterectomy, other ovary out, massive course of chemotherapy. 
 
She pulled me into a room and said, ‘Look, you know, you’re not having the operation tomorrow. We have sought a second opinion on the histology from another hospital, and it has come back saying that it’s borderline’. And she explained that that meant, as we thought, no treatment, you know, we just monitor it. She said, ‘But, you know, I’m keen to get a third opinion, with your permission, I’d like it to go to the international expert.
 
And then I went back to work, you know, and sat there and just waited for the third opinion to come through. It finally did in the September ’98 and basically it was in line with the second opinion that this was borderline and it needs to just be monitored. And the advice from the gynaecologist was, ‘Well look, you know, it was your original ambition to have children. We really think that you’re ultimately going to have to have everything taken out, but want you to basically try and get on with having your children as soon as possible and, you know, we’d like you to have IVF, try IVF to speed up the process’.
 
So in February ’99 I went off to start a course of IVF, which was unsuccessful. I mean they couldn’t stimulate the second ovary enough to produce sufficient number of eggs. I think we got, there were three follicles. Decided to abandon that cycle of treatment on the basis that you were unlikely to collect sufficient number of eggs for it to be worthwhile. And at that stage, you know, I think, very much of the view that perhaps the ovary was dying, I suppose, you know, I was probably going to menopause fairly soon and, you know, it was not going to be possible. But anyway, we decided to go for a second course with higher doses of stimulating hormones. And after the first set of drugs to stabilise my cycle before I actually had the Gonadotrophins, I discovered that I was pregnant. Well initially actually, when my period didn’t come I really did think I was having the menopause, but I thought in any event just to do a, you know, a pregnancy test, and it actually showed positive. 
 
So abandoned the drug-taking and was advised that I was probably likely, or very high probability I might have a miscarriage, but everything was fine and I had my first child with an extremely normal pregnancy and extremely normal birth. Monitored, you know, sort of ad hoc really, while I was pregnant, in terms of, you know, scans and blood tests.
Being told their cancer treatment would make them infertile produced a range of reactions among people we interviewed, and depended on their age and whether they already had children. Many people said that they had already completed their family so it wasn’t a problem. For others with children, having cancer treatment forced them to accept that they wouldn’t have any more. Some were childless through choice or because they hadn’t managed to conceive a baby, so now had to accept the finality of this situation. Even for those who hadn’t been planning (more) children, having the option taken away could be upsetting.
 

Ian had decided that his family was complete before his leukaemia diagnosis; his doctor was...

Ian had decided that his family was complete before his leukaemia diagnosis; his doctor was...

Age at interview: 43
Sex: Male
Age at diagnosis: 35
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It’s just occurred to me, presumably there might have been some fertility issues with some of your treatment…
 
Yes.
 
…I haven’t asked you about.
 
No no it’s okay. 
 
Tell me all about that.
 
Yeah that was quite funny actually because it was one of the, 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 you 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 he just went, ‘Phew’, you know, ‘Fine’. 
 
Because I’d always decided two children for me in life is enough to look after, regardless of, you know, how things, because all my friends are divorced or what have you, and that’s two children for me is enough, and happy with that, I look after those two as best as I can. So it wasn’t an issue.
 
Good. 
 
Luckily enough. Yeah.
 

She had not had children and didn't want any before her cervical cancer diagnosis; however,...

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She had not had children and didn't want any before her cervical cancer diagnosis; however,...

Age at interview: 49
Sex: Female
Age at diagnosis: 41
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I was, how old was I? 41 at the time, and I didn't want, I hadn't had children but I didn't want children, so having a total hysterectomy wasn't as big an issue for me as it is for some women; I was very lucky. Obviously a lot of people it's absolutely devastating if they can't have children or can't have more children if they want to, so that wasn't a huge issue for me luckily. It all happened so quickly that I didn't really have to time to think about it, to be honest.
 
I suppose emotionally even though I'd already decided not to have children, it's final now, obviously, even though I'm getting a bit old for it anyway, but there's always a little bit of regret along the way, but anyway I made that decision. But once there's no going back there's a little bit of regret there every so often. But then I've got nieces and nephews and I've now got a great-nephew, so I've got lots of children around me, except half of them are in New Zealand, but I've got lots of children and other people's children to enjoy and get to know and things. 

 

Although becoming infertile hadn’t seemed an important issue at the time for some people, because they were focusing on surviving, the emotional impact could hit them further on when things got back to normal. A young woman with ovarian cancer had two small children and only a short time to decide whether both her ovaries should be removed. At the time she believed that being strong and well for her children was more important than having any more children. Since then she wonders if it was the right decision and has had to come to terms with her infertility. Some women said that it had been difficult coming to terms with the realisation that they would not have any children or complete the family they had wanted. Although she still sometimes has regrets, one woman said she was now resigned to being infertile.
 

When having a hysterectomy for her cervical cancer she felt that losing her fertility was not an...

When having a hysterectomy for her cervical cancer she felt that losing her fertility was not an...

Age at interview: 37
Sex: Female
Age at diagnosis: 32
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I was only 32 so, and I'd only had one child. And at that stage I can honestly say I was quite happy with one child. Okay it upset me, I didn't, I really, really didn't want the operation but I was more concerned that I stayed alive for the daughter I did have than, you know, any sort of concerns of having another one. That didn't hit me till quite a lot later.
 
How later was that?
 
I think 2 years after, when I thought that I should stop worrying about am I going to live or aren't I going to live, I thought I would feel a lot more confident at 2 years, and I didn't. So I think I probably had quite a big dip at 2 years. And it's probably been only since I've had a 5 year clear that I've been incredibly broody, I would love to have another child, and it has hit hard. 
 
I think it's been the fertility side that I think has been the hardest thing since. I think because I, you know, hopefully I've not completely stopped worrying about my health, but I do feel that it is over and done with as far as I can tell. So it's been harder sort of not, knowing, you know, knowing that I can't complete my family, the sort of image of the family that I wanted, I wanted two children. And so that's been the toughest part. And going back and reading my notes, and I remember saying quite clearly it wasn't an issue at the time. And it wasn't, it wasn't an issue, but I think 5 years on it is an issue for me.
 
And how do you cope with those types of feelings, how do you find ways to cope?
 
I suppose that ever since I've had the illness, because we'd just moved house I focussed on my daughter very much and just on having things to enjoy. I've made sure I've, you know, treated myself to holidays and I've done all sorts of things that I know I wouldn't have done otherwise. Then two years on we decided to move house again, and it was the Friday before she started school on the Monday, so very, very good timing, because I was aware that there was going to be a void. And I guess that void will come again in September when, you know, I've finished the house and I know I want to move on and do something else, and it's making that I focus on another project to give me that satisfaction that I can't get from having another child. I guess that's probably the way I've looked at it.
 

Now that she has come to terms with being infertile after cervical cancer treatment, she feels...

Now that she has come to terms with being infertile after cervical cancer treatment, she feels...

Age at interview: 36
Sex: Female
Age at diagnosis: 27
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You’ve been able to cope with that, is there anything that you know helped you which might help other women who realise they are going to be infertile because of the treatment?
 
It makes you more compassionate to other women. It’s a question I’d never ask any of my friends about children unless they wanted to talk about it, and I find that a lot of people do want to talk to me about it because I understand. And I have got friends that can’t, so I think you can only understand what it feels like if you’ve been there yourself really. It’s easy for people to say, ‘Yeah I can understand’, but they’ve got three children. And you are much more compassionate definitely. I would be prepared to give time to talk to someone if they couldn’t have a child and they wanted to talk to someone, because there are other areas in your life that you can go to that can bring you happiness too. It doesn’t have to mean everything.
 
Fielding questions from well-meaning friends about plans for further children meant having to decide whether to disclose information about their cancer and the resulting infertility. Some people felt envious of others who had children or larger families than they did. It was common for people whose treatment had made them infertile to enjoy spending time with nephews and nieces or godchildren, although it could also be a reminder of their infertility.
 

Julie’s leukaemia treatment left her infertile. She loves her nieces and nephews as if they were...

Julie’s leukaemia treatment left her infertile. She loves her nieces and nephews as if they were...

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, you know, 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, you know, if they say to me, ‘Can I have that?’ I go, ‘Yeah okay.’ And I shouldn’t but I do. 
 
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, you know, most people say I’ve got the best husband in the world. He’s turned my life around and, you know, to have his child would be everything to me. But it’s not possible, but we have one another, and all I have to, 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 most, 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, you know, I’m not greedy, I won’t be greedy, I’ve got what I’ve got, and what I’ve survived, I think, you know, ‘I’ll stick with that and don’t be greedy.’ So that’s what I do. Stick with that.
Treatment-induced infertility could cause problems in relationships and some people said that when starting a new relationship they had disclosed this information before a long-term commitment was made. A man treated for lymphoma whose marriage broke down married again and adopted his new wife’s daughter.
 

She began a new relationship after her cervical cancer treatment; she told her new partner early...

She began a new relationship after her cervical cancer treatment; she told her new partner early...

Age at interview: 36
Sex: Female
Age at diagnosis: 27
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And going to a new relationship and having to tell your partner that you had cervical cancer, what was that like?
 
It was quite tough actually and he didn’t know obviously beforehand, although I knew him years ago, he didn’t know what I’d been through. It was something I wanted to discuss quite early in the relationship because I didn’t want to get involved with somebody if two years down the line they decided they wanted children. So it was something that we did discuss quite early on and I wanted him to really go away and think about it before we continued. Because I couldn’t have coped with someone rejecting me again because of my fertility. And I wanted someone this time to love me for me and to be with me because it was the person not how I’d changed inside. You know, because obviously inside I’m very different to probably another woman. And we discussed it, we talked about it, he went away and thought about the children scenario and it really hasn’t been a problem. He came back and said it wasn’t an issue, he didn’t particularly want children anyway and he didn’t feel there was anything physically different to me, to any other woman. And that’s what I needed to hear really, I needed for someone to be really positive and on my side. Now it’s not a problem at all but initially I think the problems were within my own head because I didn’t, I thought I’d be rejected for things they couldn’t see.
 
No-one we spoke to had yet tried to conceive a child using their frozen sperm, eggs or embryos, but a man treated for lymphoma was intending to. One woman was reluctant to have the hormone treatment that would be required but was also told she’d be unable to carry a pregnancy because of radiation damage to her womb. Some men who banked sperm had not needed it to conceive a child.
 

After treatment for testicular cancer he went on to conceive a daughter normally so did not need...

After treatment for testicular cancer he went on to conceive a daughter normally so did not need...

Age at interview: 55
Sex: Male
Age at diagnosis: 40
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I mean I think the thing I was trying to think of before that's important is we did go, we didn't have any fertility problems at all and we conceived this perfectly lovely daughter. Now I think the thing I'd really like to end on would be the birth of our daughter, because there's something about that affirmation of life that's just so extraordinary after you've nearly died, that was, it made that experience so incredibly richer than it ever could have been.

Conceiving a child is not advised when taking a drug called imatinib (Glivec), which can keep people in remission from chronic myeloid leukaemia indefinitely. Because it is a relatively new drug there is little information about what harm, if any, it could cause to a developing fetus, so people are advised to stop taking it before trying to conceive, but doing so would risk their leukaemia recurring. People we spoke to were not prepared to take this risk.
 

She was advised not to get pregnant while taking Glivec for chronic myeloid leukaemia but she...

She was advised not to get pregnant while taking Glivec for chronic myeloid leukaemia but she...

Age at interview: 38
Sex: Female
Age at diagnosis: 32
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Does the Glivec have any effect on your fertility?
 
No. None whatsoever. They, it has no effect on your fertility, I did, because I remarried, I really looked into this. And of course one of the problems you have now is everyone is so risk averse and concerned about being sued, so it’s very difficult to get real information. But some consultants are more willing to stick their neck out on the line than others. And I do know of two cases where people got pregnant on Glivec and went on to have healthy children. 
 
I believe it might be outdated, but the standard information at the time that I was given, which was in about to 2004, for getting pregnant, was that you should come off Glivec because they did not know the effect it would have on the children. However, that said, anybody who’d come off had never gained full remission when they tried to go back on it. And the risks of staying on Glivec to any child were very, very small. They weren’t brain damage or heart tumours or anything like that. You might have had a wonky, missing a toe or something like that. They weren’t anything which worried me particularly but that’s a personal thing and there might now be more information about it.
 
Okay. So it’s not that you can’t conceive while you’re taking it…
 
No.
 
…it’s just that you shouldn’t…
 
[mm]
 
…and you’re advised not to, so you would have to carry on using contraception while you were taking it, if you were following their recommendations.
 
Yes, I don’t think you’d be recommended to get pregnant, but that is only because there wasn’t the information, the research or the statistics to support it. But there are people who’ve got pregnant on it, have babies and are fine.
 
Is that something you wanted to do?
 
At that time, well I married somebody who wanted children, so we did look into it.
 
Did you try to get pregnant?
 
Didn’t try not to. 
 
But it didn’t happen for you.
 
But it didn’t happen. 
Adoption is an alternative that some people considered. Several decided it wasn’t for them; others found they had to wait until they had survived a certain number of years before they would be eligible to apply.
 

After ovarian cancer treatment left her infertile she tried to adopt but was rejected; the local...

After ovarian cancer treatment left her infertile she tried to adopt but was rejected; the local...

Age at interview: 44
Sex: Female
Age at diagnosis: 38
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The decision then to try adopting children really just came once, you know, we'd sort of come to terms and dealt with cancer and the fact that I wasn't going to die and so on just then. We thought, well maybe we could think about this again, and so we went back and unfortunately when my medical information was put to the panel we were rejected. 
 
So we went off on another holiday then and started to feel a bit sorry for ourselves again and tried to come to terms with that, which again was quite difficult because it was then another blow, and at that particular time while I initially accepted it, then maybe another year down the line I started to think, “This is the only negative thing in my life, nobody else seems to have a problem with the fact that I had cancer, I don't, my husband doesn't, friends and family don't, you know, I’m sort of back to normal and work and, you know, people are treating me the same as they ever did. Why have we been turned down because I was diagnosed with cancer?” 
 
So we decided then that, an opportunity came when I saw an article in a local newspaper covering a similar type of story, that I would contact the journalist and let her know what happened, and we went public. And after that we were contacted by a local MP who decided that this maybe wasn't very fair and contacted the particular health Trust. And we went through an appeal procedure, we met the Chief Executive and my medical history then was gone into again, and a few years down the road the decision was overturned and the policy was changed that anybody diagnosed with cancer applying to adopt children in that particular area would be free to go forward five years after diagnosis. 
 
So I reached my five years six months ago, the medical information has gone to panel again and we've been given the go ahead to start the assessment, which that's the stage we're at the minute. So it’s back to the positive from what was, as I say, the only real negative part left in our lives. So we're starting off an assessment at the minute.

 

See more experiences of infertility.

Last reviewed October 2018.
Last updated August 2015.
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