Hoping for children against all odds
When Lotten was diagnosed with cancer 11 years ago her ovarian tissue was frozen to counter the risk of the cancer treatment leaving her infertile. The tissue has now been transplanted back into one of her ovaries and she longs for children even though the odds are against her.
Lotten was 23 when she was diagnosed with a rare form of cancer known as Ewing's sarcoma, which was located in and around her coccyx. As a fertility preservation programme had been set up at Karolinska University Hospital Huddinge, she was asked by her doctor whether she would like to have her ovarian tissue removed and frozen to give her a chance of becoming pregnant in the future.
"They said it was something brand new and they didn't know what the results would be," says Lotten. "The whole infertility thing didn't really bother me at the time, I just wanted to get better. But I still realised that it might be important in the future."
The tumour could not be removed surgically, so Lotten spent ten months doing chemotherapy and radiotherapy instead.
"The treatment was really tough. I was totally wiped out and very vulnerable to infection. Then I went straight into the menopause with its hot flushes and sleep problems, but the tumour disappeared and hasn't come back."
These days more than 80% of children and young people with cancer get better. But a serious side-effect of the cancer treatment is that it damages the gamete cells - in other words a woman's egg cells and a man's sperm-forming cells - which means that many cancer survivors run the risk of not being able to have children later in life.
Sweden now has a unique fertility preservation programme for cancer patients. Research has been under way at Karolinska Institutet since the late 1990s to find ways of freezing and preserving ovarian tissue.
In 1996 professor Outi Hovatta from Karolinska Institutet was the first in the world to describe a method for freezing ovarian tissue from women. Since then, this method has been used in many university clinics worldwide, and 15 children have been born after their mothers have had thawed tissue retransplanted. Half were born without the use of IVF. Around 150 women in Sweden have had their ovarian tissue removed and frozen, and four have had their tissue retransplanted, though no babies have been born as yet.
"It's fantastic for us to see these women healthy, coming back to us and wanting to start a family, after having been so poorly and undergone chemotherapy," says Kenny Rodriguez-Wallberg, a doctor of medicine at Karolinska Institutet's Department of Clinical Science, Intervention and Technology, and consultant and head of fertility preservation initiatives at the women's clinic at Karolinska University Hospital Huddinge.
Attempts to mature undeveloped egg cells
Some types of cancer can spread to the ovaries, including leukaemia, ovarian cancer and some types of hereditary breast cancer. In such cases the ovarian tissue cannot be retransplanted as this could cause the cancer to return. Instead, the least developed egg cells must be harvested from the ovarian tissue and matured outside the body in the laboratory with a view to embarking on IVF.
"We're close, but still haven't quite managed to get an undeveloped egg cell to mature to a viable egg cell that can be fertilised, says Rodriguez-Wallberg.
If they are successful, this method could help people who develop cancer before puberty to have children later in life. This is why the ovarian tissue of cancer patients is now being preserved in the hope that they will be able to become pregnant as adults in 20-30 years' time.
Rodriguez-Wallberg also hopes to develop medicines in the future that will protect the ovaries and egg cells during cancer treatment.
Lotten was 30 when she decided that she wanted children. The following year some of her ovarian tissue was thawed and transplanted back into one of her ovaries and peritoneum. Following a further operation her periods returned.
In her bid to become pregnant, Lotten underwent several hormone treatments in 2009 to stimulate her ovarian tissue to mature her eggs. In normal cases this results in around ten eggs per treatment, though Lotten managed a maximum of five from the limited ovarian tissue she has left. Although the eggs were fertilised, few embryos developed further. The couple did one IVF cycle but it failed to result in a pregnancy. They will soon be starting another - perhaps final - attempt.
"Sometimes I think about maybe not being able to have children pretty much every day. It's not so much disappointment as just the way things are, because we've known about this for more than ten years. We've been given a chance to try again, but if it doesn't work out we'll leave things as they are, just the two of us. There've never really been any other options for us."
Lotten feels that she and her husband have avoided intrusive questions about children over the years.
"Pretty much everybody knows that I've had cancer and that this can make it hard to have children."
Writing a journal and reading a lot about other people's problems with conceiving have helped Lotten through difficult times.
"You still feel alone, even though you know that lots of others have been through similar things. But my husband and I talk about it a lot and it's brought us a lot closer. It feels like something that we'll sort out together."
Text: Helena Mayer, Published in Medicinsk Vetenskap (Medical Science) no 4, 2010