Fertility

In pre-menopausal women, removal of the uterus and ovaries as treatment for ovarian cancer abruptly ends their ability to have children. Some young women we talked to who desperately wanted children and had been trying to conceive before their cancer was diagnosed had been devastated at the loss of their reproductive potential. A woman with one daughter who had had several miscarriages was also upset at being unable to have more children.

Had been trying to conceive and was devastated at losing her reproductive organs ovaries.

Age at interview 42

Gender Female

Age at diagnosis 41

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With regards to the effects of having a hysterectomy whilst still being of child-bearing age, I have to say that this is the single most difficult part to come to terms with; even if you have been trying to conceive for a long time, there is always the hope that one day it will happen. Also, you still have the option of pursuing fertility treatments. However, once you are diagnosed with ovarian cancer there is no chance of being able to conceive and you have absolutely no choice in the matter.

Initially after the diagnosis, the fact that you won’t be able to have children seems less important because you are focused on having treatment that will keep you alive. It is when you have finished the treatment and life returns to being more normal that the impact of remaining childless hits home and I feel quite cheated. I think it is something that you just have to come to terms with but there is no quick-fix solution.

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Had been trying to have more children and was upset at losing that chance.

Age at interview 41

Gender Female

Age at diagnosis 38

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I found it very difficult as an issue having the hysterectomy, it made me very much feel like I was a chimera, a woman of childbearing age who wants to have children, not able to have children. I think it’s a different issue when your body goes through the menopause than if it happens so brutally. You know, everybody comes out with silly phrases like “Well it’s your best chance of survival,” which is true, it is the best chance of survival, but you’ve already dealt with that yourself that it doesn’t help you feeling less of a woman, you know, it’s, I’m trying to think of the phrase, I could no longer fulfil my genetic imperative, but then not everybody wants to have children. I can’t give my daughter a brother or sister.

I never thought, having been a very busy career person, you know, it comes as a shock that I feel so strongly like this, seeing the woman in one of the super-store adverts there with all her daughters, you think ‘gosh I’m never going to have that. But thank goodness I do have my daughter.

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Some women who could have no (more) children considered fostering, adoption or surrogacy. One who had been having fertility treatment before her diagnosis applied to adopt children but was refused because she had had cancer. She told her story to the press and the Health Trust later changed its policy to allow people living with cancer to adopt children after surviving five years. Another woman who had been trying to conceive, although she was very upset, decided initially that she had to focus on her health. Later she and her husband, who very much wanted to father a child, found a woman willing to be a surrogate mother.

Was initially refused by an adoption agency because of her cancer but succeeded in changing the…

Age at interview 44

Gender Female

Age at diagnosis 38

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After, about a year after the chemotherapy, maybe not just as long as that, we decided that we would go back to the adoption route which we had tried before and obviously because we were having fertility treatment we couldn’t advance. So we thought ‘well well go back to that route and see what happens.

The decision then to try adopting children really just came once, you know, wed 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.

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 now 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 this journalist and let her know what happened and we went public. And after that we were contacted by our 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 it was, 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 weve been given the go ahead to start the assessment, which that’s the stage were at the minute.

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Was trying to have a family before her diagnosis and has found a surrogate mother for her husband…

Age at interview 33

Gender Female

Age at diagnosis 30

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When it came to the childlessness, that, right from an early stage we, well I decided that, to deal with that at thirty years old I had to say ‘Right, my health is the most important thing initially. That is what we have to deal with first but we will not dismiss possibly doing something like fostering, adoption or surrogacy. These are things that right from the start I thought, you know, ‘if we don’t want to be childless we won’t be, you know. So I dismissed that for a while by doing that.

Weve never come to terms with it and we don’t have to because weve met a surrogate and were going to hopefully have a surrogate child. So were very, very, very lucky, because I, we realise, well I realised very early on I was not the first woman this was going to happen to, I was not the last, and it was how we decided we were going to deal with it that was the issue. And we could have dealt with it by sitting down and deciding right, this has happened to us, we will surround ourselves with our animals and we will not have children, or we could have adopted, or we could foster.

But what we have decided to do is, because my husband really wants children, and probably actually really wanted children more than I did when we were kind of trying even. He was a very paternal type person, and the decision that was left to us, well the decision weve decided to embark on is that cancer has taken away my chance to have his child but it hasn’t taken away the chance for us to bring up his child and it will be as much his child whether I’ve had it or not.

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A woman who had thought her family was complete when her ovaries were removed later divorced and regretted not having investigated the possibility of freezing eggs or embryos for the future (see ‘Treatment decisions’). Another said she and her husband had not discussed whether they should have more children but was grateful for the two that she had. Some younger women we talked to had not intended having more children so were not much concerned about losing their reproductive organs.

Had not discussed with her husband whether to have more children but was grateful she had two.

Age at interview 41

Gender Female

Age at diagnosis 35

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Had you finished your family or were you planning more?

We hadn’t really discussed it. I probably would have liked more. I think my husband thought one was enough but, I think probably the news wasn’t so devastating for me as for somebody who maybe hadn’t started their family. I had two healthy children and I was just thankful that I had those, and that I’d had them before anything happened, certainly wouldn’t be without them. I don’t know how I would have reacted had I not had any children, I think it would have been totally different. But no, I’m quite happy with the two that I’ve got.

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Had finished her family so was not much concerned about losing her reproductive organs.

Age at interview 46

Gender Female

Age at diagnosis 39

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I just, all I could feel was intense relief that I’d already had my children and that they had grown up safely, and the grief that people must feel if they’re faced with that diagnosis before, if they want children that is, before they’ve had their children. So I just felt very lucky that it came at the time of my life that it did, when I would have been approaching menopause in the next little while anyway.

And I have to say, my experience with being catapulted into menopause was very good. I mean I was so ill from the chemotherapy and the surgery, so I’m not quite sure what was what, but I didn’t feel that I suffered any ill effects from suddenly losing all those hormones. No hot flushes, actually I felt quite relieved to have it all out of the way. So no, I didn’t have that sense of loss, and also I realised it was that or my life, so that tends to make you, it would have been silly, I would have felt a bit silly sort of grieving for my womb when it was killing me. So yeah, I was okay with that.

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One woman in her 30’s felt more ‘confused’ than ‘devastated’ that she would not be able to have more children. Another felt that the question ‘Am I going to live?’ mattered more to her than whether she would have children. Some women were childless from choice or were infertile and as they were approaching menopausal age had accepted that they would never become pregnant.

Wanted a family but had already accepted that she would have no children.

Age at interview 58

Gender Female

Age at diagnosis 44

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How did you feel about losing your womb? Had you been trying for a family or was that never on your agenda?

Well at 43 I’d already decided that it wasn’t going to happen. We would have liked a family. I would have liked a family, life doesn’t always give you what you want. And I just accepted that I wasn’t going to have a family. Yes, it hurt at the time but I guess I’d come to terms with that a lot earlier than when I had the hysterectomy because at 43, I mean my doctor had said to me that up until 39, you know, there isn’t really a problem having a first child but after that it can be a little bit more difficult and they would watch you very, very carefully and I had come to the conclusion this wasn’t going to happen to me anyway a long time before that. So regarding children it, it didn’t matter I guess.

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Pre-menopausal women whose treatment involves removal of only one ovary can still conceive – one woman we talked to had had two children since finishing her treatment. Most women who are diagnosed with ovarian cancer have already been through the menopause and can no longer become pregnant – several we talked to had grown-up children or even grandchildren. Women with children often expressed sympathy for younger or single women who are diagnosed before they have children.

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