Читать книгу IVF: An Emotional Companion - Brigid Moss - Страница 10

Cancer affected my fertility

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It seems particularly unfair that if someone has endured the uncertainties of cancer and the difficulties of treatment, that she or he could also end up infertile too, as a result. Sometimes the cancer itself is to blame, but more usually it’s down to surgery, radiotherapy and/or chemotherapy.

Fertility preservation is now usually offered before cancer treatment. For men, sperm can be frozen and stored before treatment, then used in IVF, usually ICSI. If sperm wasn’t stored — for example, if the man had cancer in childhood — then he may be able to have sperm extracted from his testes during an operation, frozen, then the couple can have ICSI later on (see Chapter 2).

The most tried-and-tested fertility preservation technique for women is to have IVF prior to cancer treatment, and the embryos frozen, to use when you’re better. ‘Of course, this is not always possible if the patient doesn’t have a partner,’ says Mr Tarek El-Toukhy, Consultant and Honorary Lecturer in Reproductive Medicine and Surgery at Guy’s and St Thomas’ Hospital NHS Foundation Trust. If that’s the case, she may have the option of freezing her eggs, though this is less established and, until a few years ago, fewer eggs than embryos survived the freezing and thawing process. A new freezing technique called vitrification has boosted the thaw rate of eggs; recently, the first two British babies were born from eggs frozen using this technique, at the Midland Fertility Services clinic.

If the cancer has a hormonal element, as some kinds of breast and ovarian cancer do, or the cancer needs immediate treatment, IVF beforehand might not be possible. ‘In some cancers, it’s not safe to have ovarian stimulation,’ says Mr El-Toukhy. ‘There are other options we can offer, including preserving ovarian tissue by freezing it. But at this stage it is experimental, and very few babies have been born from it worldwide.’ The idea of this treatment is that the ovarian tissue can be put back inside the woman’s body to grow eggs when she’s well, or in future, the immature eggs inside the tissue might even be matured in a test tube and used in IVF.

Of course, there is no guarantee that any assisted reproduction technique will work. ‘The clinician has to talk to the patient openly about what treatments they can offer, and the realistic chance of achieving a pregnancy,’ says Mr El-Toukhy. ‘But you could argue that a chance is better than no chance.’

Some women do still have functioning ovaries after treatment for cancer, which means they can have IVF if needed, or even get pregnant naturally. ‘There are a lot of factors that affect whether the patient retains her ovarian function — the type of cancer, the age of the patient and her ovarian reserve, whether she had surgery, radiotherapy and chemo-therapy, the type of chemotherapy, the number of courses of chemotherapy and, of course, how badly the cancer has affected her general health,’ says Mr El-Toukhy. If cancer does affect fertility, there may be the option of egg donation or surrogacy.

Sadly, although IVF and embryo freezing are routinely provided on the NHS, the rest of these treatments often need to be paid for.

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Lucy, 32, a hospital manager from Hampshire, thought she might never have her own child after cancer.

My husband John and I came out of the hospital, got straight into a cab and went to have a slap-up celebration lunch in Gordon Ramsay’s restaurant in Chelsea. We had good reason to celebrate: we’d just been told that we could go ahead with IVF and surrogacy. Just 10 months earlier, I’d been diagnosed with a rare form of cancer in my womb. I hadn’t even been sure if I’d still be around, and hadn’t dreamed I’d be fertile.

It had all started two years before, when John and I had been delighted to find out that I was pregnant. But I had the worst morning sickness, constant vomiting and no energy. I couldn’t eat or drink anything without throwing it up. I felt hungover, but multiplied by a million.

When I went for a scan at 10 weeks, the sonographer could see immediately that there was something wrong. In place of the expected embryo, there were a lot of fluid-filled cysts, like a little bunch of grapes. The doctor came in and said, ‘I’m sorry, but there’s no baby.’ He told me I had a molar pregnancy, where the fertilisation of an egg goes wrong, and it turns into a mass of cells that grow very rapidly, but don’t form the foetus and placenta of a normal pregnancy. It would need to be surgically removed. He added that there was a 10 per cent chance that the cells would continue to grow after surgery — a rare form of pregnancy-related cancer.

We were so hung up on there being no baby that we couldn’t take in the cancer part at first. Later on, a more senior doctor explained it to us again, and two days later, I had an operation to remove the molar pregnancy. Though I was upset about losing the pregnancy, I was relieved when the surgery was over.

But, two weeks later, I started getting really strong abdominal pains, and I was admitted to hospital and prescribed morphine. The next day, I was transferred to Charing Cross Hospital, the national screening centre for molar pregnancy, where I had every kind of chest X-ray and chest and abdominal CT scan.

The first thing the consultant there said to me was that I had cancer. Molar pregnancies produce incredibly high levels of beta hCG, the pregnancy hormone (that explained my awful morning sickness). After having the molar pregnancy removed, my level should have gone down to zero, but lab tests showed it was still close to a million (in a healthy pregnancy, it wouldn’t normally go above 280,000). I was one of the unlucky 10 per cent whose molar pregnancy had turned into a form of cancer.

On the ward, away from home, I felt lonely and scared. And I was still in pain. But the doctors were upbeat about my chances: they told me that chemotherapy had a 99 per cent success rate.

I started having chemotherapy every two weeks — injections of a drug called methotrexate that would kill the remaining abnormal placental tissue. It took five months for the chemotherapy to work, for my hCG levels to get back to normal. The side effects weren’t too bad: my eyes were sore and I felt a bit tired and run down, but it was bearable.

I was told not to get pregnant for a year, as the hCG produced by the pregnancy would interfere with my monitoring. That was hugely frustrating, as John and I wanted to get on with life. I went back to work as a hospital manager and we decided to make the most of the year: I went on a spending spree: I bought a brand new Mazda MX5, spent a fortune on manicures, pedicures, fake tans, massages, handbags, designer shades, ate out at some swanky London restaurants and went to the theatre, the British Grand Prix and to see Chelsea, John’s favourite team. We also booked a holiday to the Maldives — something else to look forward to.

But we never got to go. My abdominal pain came back and I ended up having three operations to treat it that year. First, the surgeon performed a laparoscopy and found that the inside of my abdomen was filled with adhesions (pelvic adhesions are bands of tissue that stick tissue and organs together — a kind of internal scar tissue that can be caused by an operation, among other things). The second time, he had to open me up completely to get rid of the adhesions. That’s when he saw that my left Fallopian tube had come away from my uterus and had got caught up in my bowel. The left ovary had also died because its blood supply had been cut off, so he had to remove it.

I was terrified that with only one ovary, my chances of conceiving would be halved, but the doctors explained that it wouldn’t alter my chances, as the Fallopian tube next to my remaining ovary was clear.

I tried to move on, but just a few months later, the pain came back. In my next operation, the surgeon removed a blood clot from under my right Fallopian tube.

Just a week after the operation, on my 30th birthday, we had an amazing weekend, cocktails and dinner at Claridges. We stayed over in a beautiful room, with a massive marble bathroom and one of those showers where you feel as though you’re standing in the heaviest rain. It was really special. Both John and I thought that I was finally better.

Then, a month later, in the run-up to Christmas, I suspected I might be pregnant. I did a home test and it was positive. It was great news, but I was also freaked out and kept saying, ‘I don’t want to get sick again’. I didn’t feel nearly as nauseous as when I’d had the molar pregnancy, which was a good sign, I thought. But, driving on the motorway in the New Year, I felt the most unbearable sharp pain in my abdomen, and thought I was going to pass out.

I turned back and drove straight to my GP who suspected it might be an ectopic pregnancy (where the foetus develops in a Fallopian tube), so I was admitted to our local hospital. They monitored my hCG level, to see if it was going up or down. If it was going down, it was likely to be a miscarriage; if it was going up, it was likely to be an ectopic pregnancy. But it stayed exactly the same — a sign that the pregnancy wasn’t viable, but also, possibly, that I might be ill again.

I was sent back up to Charing Cross. After lots more scans and tests, doctors told me they suspected I had a much more serious form of cancer. I had yet another operation — keyhole surgery to get a biopsy of the mass they had seen in my uterus on the MRI and CT scans. But what the surgeon saw with the camera didn’t tally with the scans, so he decided to open me up completely, cutting up my womb to remove the mass. And thank goodness he did — 10 days later, we got the diagnosis that I had a cancer called placental site trophoblastic tumour (PSTT), but such a rare type that nobody at Charing Cross had ever seen it before.

Because the cancer was so rare, the doctors couldn’t give me a prognosis. Also, the MRI scans had shown abnormalities on my spleen and remaining ovary, and until I’d had the associated lymph nodes taken out and analysed, we wouldn’t know if the cancer had spread. I said to the consultant: ‘Just do what you need to do, but please tell me I’m going to be ok.’ And he said, ‘Unfortunately, nobody knows what the future holds.’ Which was when I realised how ill I was.

Treatment for the cancer would be the biggest operation of all — this time a hysterectomy, including removal of my pelvic lymph nodes and my appendix, followed by eight weeks of heavy-duty chemotherapy. We were told that the chemotherapy would very likely stop my remaining ovary from working properly and that I’d probably go into menopause.

My consultant suggested that, during the hysterectomy, a slice of my ovary could be removed and frozen. He explained that although it was experimental technology, the ovarian tissue could be used to help me produce my own eggs later on.

Having a hysterectomy at 30 is pretty horrendous, as is the thought of an early menopause, but they were minor details considering what I was facing. I was consumed by a horrible fear that I might not survive. At this point, my focus was on getting myself fit and well, and anything else — including having children — slipped into the background. What kept me going was that I had no other option — I knew I had to have the surgery and chemotherapy if I was ever to be well again.

Sitting in the hospital bed after the operation, I thought, I’ll just have to get myself better now, get my ovary working and prove the doctors wrong. But I was very ill, and looked so awful that I couldn’t even bear for my parents or friends to come and see me. There was some good news though: analysis of my lymph nodes showed that the cancer hadn’t spread.

I can’t find the words to describe how amazing John was throughout the time I was ill. While I was in Charing Cross, he gave up work for six weeks, and was with me every day. A few months before my diagnosis, determined to be well, I’d signed up for the London marathon, and because John hadn’t wanted me to train on my own, he’d got a place too. While I was ill, he kept running; he said it was the best way to clear his mind.

Ten days after the operation, I started my cocktail of chemotherapy. The previous chemo was nothing compared to this. One chemo drug combination was given weekly intravenously, and for days afterwards I’d feel unbelievably exhausted. My bones ached, my stomach was upset and I’d long for the days to pass. The other had to be given overnight in hospital, and would knock me out. The first time, I woke up in the early hours of the morning feeling terrible, as if I was being melted from the inside. I begged the medical team to stop the treatment; I cried and cried until I could bear for them to continue again.

Once, the chemotherapy leaked from the drip on to my arm and burned my skin, so a plastic surgeon had to cut my arm open and flush through the burned tissue with saline to prevent any permanent tissue damage. With the cuts bandaged, it looked as if I’d slit my wrist.

As I couldn’t use my hands, John even washed my hair for me. That was until my hair started to fall out. That made me feel so unfeminine, and reminded me of my illness every time I looked in the mirror. When I had to shave my head, because it looked so patchy and horrible, John shaved his in support. We looked like a pair of hooligans — like the Mitchell brothers from EastEnders!

One of the hardest things for me was for friends and family to know how poorly I was. It was difficult knowing that they’d be sad for me. So I kept it all to myself, even though John said I should talk about how I was feeling more.

On the days when I felt well enough to go out, John would take me to see friends or we’d pop to the pub. For a few months, I didn’t feel strong or well enough to go anywhere without him. There was a point, he told me afterwards, when he worried that he’d always be my carer — and that’s not what you want at 30.

After the chemotherapy, my scans and blood tests showed no sign of the cancer. As far as the doctors were concerned, my treatment was over, though I’d still need regular checkups, and wouldn’t get the final all-clear for five years.

It was just a few months later, at one of my check-ups, that we discovered my ovary had started working again, against all odds, and that my ovarian function was absolutely normal for my age, 31. So you can understand why John and I celebrated!

I was nervous about the idea of IVF, being pumped full of hormones; and the doctors all said that I’d have to do at least three cycles to expect a result. They told us to wait six months, until my body was ready and, I assume, until I was mentally strong enough too.

We booked to go to a conference on surrogacy, to find out more about it. But on the morning of the conference, John’s sister, Sally, texted me to ask what we were up to that weekend, and I told her. That was the first time I’d ever let anybody (apart from my parents) know that surrogacy might be an option. She texted back, saying, ‘You know you don’t need to go because I’d love to help you.’ Sally explained that she’d been thinking about offering earlier, but didn’t want to bring it up as I’d been so private. She had finished her own family — two gorgeous boys aged eight and nine — and seeing me with them, she knew how much I loved kids, and could tell how sad we were, and how desperate to have a family.

One night a few weeks later, Sally came over, and I told her everything that had happened. We cried together and discussed how she’d feel if the baby was a girl or if there was something wrong with it. She assured me that she would consider herself simply as the oven, cooking our baby for us.

Before we could have IVF, John had to have his sperm frozen for six months as, in the eyes of the law, he’d be a sperm donor. Then, finally, I could start IVF. I couldn’t face another general anaesthetic, so I asked to be awake for egg collection. Although I was sedated, it was very painful. The doctor took out three eggs. All three fertilised, but by the transfer day, only two embryos were of good enough quality to use. Sally said, ‘We’re only going to do this once, so put them both in.’ We were disappointed that we had none to freeze, but hopeful.

When Sally called on the morning of the pregnancy test, to say it was positive, I was so excited that I ran around the hall screaming. I had to force myself to calm down, to remember it was still early days.

Sally had a lot of nausea, which she hadn’t had in her two previous pregnancies, and I worried it might be a molar pregnancy. It was hard enough letting someone else carry the baby, let alone worrying that I might have made her ill too. The clinic reassured me that they only transfer normal-looking, healthy embryos, but it wasn’t until the three of us went to the first scan, at nine weeks, and we saw a heartbeat, that I relaxed.

All through the pregnancy Sally made sure we were involved in all the scans and appointments. Later on, the only thing I couldn’t bear to do was to feel the baby kick. A kick was too much of a wrench, a reminder that the baby should have been inside me.

I’d assumed I’d be able to take the baby home straight after the birth, but the hospital said that wouldn’t be possible because the birth mother, Sally, would, at that point, be the legal mother. So the baby would have to stay with her in hospital until they were both discharged. But, they said, I wouldn’t be able to stay in hospital too.

As we couldn’t become the legal parents until we got a parental order — which we couldn’t even apply for until six weeks after the birth — we were stuck. I asked, ‘So who’s going to look after the baby, because Sally certainly doesn’t want to.’ Sally backed me up, and that’s when we spoke to Natalie Gamble, a solicitor who specialises in fertility. Legally, the hospital’s decision was right, but Natalie said there was usually a pragmatic way to sort these things out without breaking the law. After some negotiation, it was agreed that I could pay for a room in the hospital for me and the baby until Sally and the baby were discharged. After that, the hospital would no longer have any say and I’d be able to take the baby home.

I was incredibly anxious leading up to the birth. How would we all feel once the long-awaited baby finally arrived? How would Sally feel when the baby came to us? How would the baby respond to us, having been inside Sally for nine months? And how would we thank Sally for giving us the most amazing gift anyone could possibly give?

As it turned out, the day was one I will treasure for ever. The baby was born by C-section, as Sally had wanted. Straight away, the nurse came over and gave her to me. It was such an amazing moment. Neither John nor I minded if she was a boy or a girl, as long as everyone was well. But seeing her beautiful little face just made me melt with joy that we had a precious little girl.

The first thing Sally said was that she was beautiful, then she told me to take Ellie to see her daddy, who was waiting outside. What could I say to that? Thank you didn’t even come close.

We had to stay in hospital until Sally was discharged. Ellie and I had a private room at the opposite end of the ward to her. The next day, Sally knocked on the door and asked if she could have a cuddle with her niece, which was lovely.

Those first three days in hospital, I couldn’t take my eyes off Ellie. I know I’m biased, but she is beautiful. It was wonderful just to sit there, holding her, and to be a mum. I hadn’t wanted to stay in hospital, but it was good for us to have that quiet time together, just Ellie and me, to get to know each other.

To become Ellie’s legal parents, we had to apply to the court for the parental order. An official came to our house to talk to us about how she was conceived, how we felt, if the family had accepted her. One of the things we told her was that our friends and family were amazing at welcoming Ellie into the world. Everyone loved her just as if she’d grown inside me.

I do think it must be hard for Sally. Even though she’s an auntie to Ellie, she’s kept in the background for the nine months since she was born. Maybe she doesn’t want to be seen to be getting too close. I think it must be emotional for her, but we haven’t spoken about it. We gave her a massive bunch of beautiful flowers, with a note from Ellie saying, ‘Thank you for looking after me for nine months’. ‘Thank you’ doesn’t seem good enough, but what else is there to say?

I can’t remember what life was like before Ellie. Even the sleepless nights haven’t bothered me. It’s such a joy to see her growing into a wonderful little person. John adores her too and her little face lights up when he walks in from work.

I don’t dwell on the cancer, or the fact I had to have a hysterectomy. I have a big scar, which runs from hip to hip, but it doesn’t upset me. Of course, I would rather have carried my daughter myself, but I have tried to keep that in perspective. We’re going to tell Ellie how she was conceived, as soon as she can understand it. We want her to know how special she is, and if she chooses to tell people in the future, that’s up to her.