Kate Dobb. Photo courtesy of subject
When Kate Dobb was treated for an aggressive form of cancer at the age of 10, the prospect of being left infertile was never even discussed. Now more women are demanding that doctors talk about reproductive health as part of the cancer conversation.
When Becki McGuinness was diagnosed at the age of 21 with osteosarcoma, an aggressive form of bone cancer, she was anxious about the impact treatment could have on her future fertility. "If I'd known then what I know now, I would have pushed further," she says, "but my concerns were brushed off by the doctors."
Now 30 years old, and infertile as a result of the intensive chemotherapy that saved her life, McGuinness is campaigning to ensure all young cancer patients have access to the fertility options she was denied.
"A fertility specialist told me later that there had been enough time to save my fertility before I started treatment, but I feel like [the cancer specialists] made the choice for me," she adds. "Being young and infertile is such a hard thing to take. There's no chance for me now; once you're infertile you can't go back."
Cancer treatment, and particularly chemotherapy, can have this devastating impact on women like McGuinness because "the drugs are designed to kill cells which are dividing," explains Dr. Anne Rigg, a consultant oncologist at Guy's and St Thomas' Hospital. "It affects your hair follicles, the cells in the lining of your cheeks and, for pre-menopausal women, your ovaries."
The extent of the impact, she adds, will depend on the type of cancer, how aggressive your treatment is, and your age when you start treatment. "For a 25 or 35-year-old, it would be much less likely to cause infertility than in a 45-year-old, because they'll have younger ovaries which will be less damaged by chemo," Dr. Rigg says. "Not all chemotherapy drugs do affect fertility, but the cocktail of drugs used for cancers like lymphoma and sarcoma is particularly aggressive."
McGuinness' campaign, The Vicious Cycle, aims to raise awareness of the potential impact that cancer treatment can have on young women's fertility. Cancer Research UK, a leading charity that funds research, says on its website: "Chemotherapy can stop your ovaries from working for a while, or possibly permanently. Whether your infertility is temporary or permanent depends partly on the drugs and doses that you have."In the UK, guidelines currently issued by the National Institute for Health and Care Excellence (NICE) recommend that "people preparing to have treatment for cancer that is likely to result in fertility problems are offered cryopreservation."
Despite this, a recent study by St Mary's Hospital in Manchester found that fewer than four per cent of female cancer patients have their eggs or embryos frozen before starting chemotherapy or radiotherapy. According to the same study, roughly half of 15 to 34-year-old women treated for cancer—around 4,000 a year—become infertile after their treatment.
Kate Dobb was 10 when she was diagnosed with cancer and was treated with chemotherapy that left her infertile. Photo courtesy of subject
There is a drive towards raising awareness and making information more readily available. Young people's cancer charity CLIC Sargent recently launched a guide for young people on cancer treatment and fertility, but McGuinness believes information alone is not enough. She'd like to see cancer specialists doing much more to ensure all cancer patients are referred to a fertility specialist as a matter of course. "I think too often the barrier, unfortunately, is the oncologist not referring," she says.
28-year-old Daisy Turner is an example of how the process can and should work for everyone. When she was diagnosed with myelodysplasia, a pre-leukemic blood cancer, at the age of 19, she was immediately told that the high dosage of chemotherapy she'd have to undergo would almost certainly make her infertile.
"I was actually reassured, in that same meeting, that we had time for a treatment which would hopefully secure my ability to have children," Turner says. "My mom and I went and sought a lot of information ourselves, and in the following meeting I was sent to the fertility department for a consultation, to fill me in on the options."
It dawned on me that I was infertile when I was 13 and started on hormone replacement therapy.
Unless cancer treatment is extremely urgent, it is possible for most post-pubescent, pre-menopausal women to access IVF before being treated, in order to freeze eggs, embryos, or a combination of the two. "We can stimulate her ovaries, get the eggs out, and freeze them for future use—or fertilize them with her partner's sperm, and keep those embryos in storage," explains Yacoub Khalaf, a consultant gynecologist and medical director of the assisted conception unit at Guy's and St Thomas' Hospital Trust in London.
In Turner's case, her boyfriend Keith—who is now her husband—was totally supportive of creating and freezing embryos, despite being just nine months into the relationship at that point. But Turner was determined not to put all her eggs in one basket (so to speak), and also opted to have some of her eggs frozen unfertilized.
"The lead-up period, where you're injecting [hormones] to over-stimulate your ovaries to produce more eggs, was pretty shitty," she recalls. "It mimics pregnancy, so my breasts were enormous, I was getting fat, I was very emotional and angry. Then the actual procedure [to harvest the eggs] looks quite simple, but the following day was very painful—you feel like you've been beaten up in the womb."
Several months later, during the course of her six-week chemotherapy treatment, Turner went through an early menopause. "No one warned me about that!" she exclaims. "They said it would happen, but they didn't tell me there would be an instant thing where suddenly I was bleeding uncontrollably, and going through hot flushes like you wouldn't believe."
She adds: "I went through really low patches of feeling completely unattractive and mourning a younger me. I felt like I was damaged goods, and I resented anyone who wasn't having to go through that."
Nine years later, and seven years into remission, Turner and her husband now have the comfort of knowing their embryos are stored and waiting to be used whenever they're ready.
Kate Dobb with her children. Photo courtesy of subject
But for 39-year-old Kate Dobb, who was diagnosed with aggressive rhabdomyosarcoma—a form of muscle cancer—when she was just 10, the prospect of being left infertile was never even discussed. "There was never any conversation about fertility before I started treatment. [Even afterwards], I wasn't told—it dawned on me that I was infertile when I was 13 and started on hormone replacement therapy," she says.
"I first brought it up when I was in my late teens, and the doctor had no idea how to react. Perhaps she thought, in comparison to having stage four cancer, being infertile wasn't a big deal—but it was a massive deal. It affects the whole of the rest of your life."
Nowadays, Dr Khalaf explains that there are cases of women having babies using ovarian tissue, which was frozen before cancer treatment while they were still pre-pubescent girls. This wasn't an option for Dobb, who struggled even to access fertility counseling as a young woman because she was single at the time.
It's no longer acceptable to say, 'Too bad, but at least you were cured.'
In her 30s, though, Dobb began attending a late effects clinic for cancer survivors and met a fertility expert who, for the first time in her life, gave her the hope that she could become a mother. "Straight away he started talking about egg donation and surrogacy as a really positive way of having a family," she says.
After Dobb's sister offered to donate her eggs, Dobb and partner Nisar were connected with the Donor Conception Network and Surrogacy UK, and met their surrogate Mikki, who went on to carry the embryo Dobb had always dreamed of.
Dobb and Nisar now have three-year-old twins, and remain close to the woman who brought them into the world. But after decades of struggling to be taken seriously, she believes it's crucial that all the options are discussed with cancer patients, both before and after their treatment.
"Hopefully nowadays most people will have the options of preserving their fertility—but, if that isn't the case, doctors need to be able to give patients all the options, including donor conception and surrogacy, so women aren't afraid of the unknown," she says.
At Guy's and St Thomas', Dr Rigg believes things are improving. "There's a very big survivorship agenda driven by patients, so we're now thinking more and more about the quality of people's survivorship. It's no longer acceptable to say, 'Too bad, but at least you were cured,'" she says. "People who've been through cancer should be able to have a normal life afterwards."
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