Plan for the worst had best outcome
Kate Friedlander's life has been transformed by her breast cancer - but in a way she never expected.
She was 33 and newly single when she discovered a lump in her left breast in April 2008. A week later, she had a mastectomy after tests confirmed high-grade breast cancer.
"Right at the beginning, I was so scared I was going to die," she said. "I was beside myself."
Her surgeon told her she would need chemotherapy once her wound healed but warned the toxic drugs could make her infertile, so recommended an urgent visit to a fertility clinic to discuss options.
Friedlander's oncologist agreed, saying she had about a 50 per cent chance of becoming infertile.
"My No 1 concern at the time was my life. The next priority was my fertility. I always wanted to have children and always thought I would, but the thought of surviving the breast cancer but not being able to have children, that was devastating to me.
"I was told I would need six cycles of chemo but there was this window before I could have it when I was recovering from surgery that I could have IVF."
Fertility specialist Mary Birdsall, of Fertility Associates, told her she could freeze some eggs or ovarian tissue but the best chance of success would be freezing embryos, which she could use when fully recovered.
However, that required sperm. First, the Auckland dentist considered a donor then approached her former partner, Hugh, from Wellington, who agreed to help. They had in-vitro fertilisation less than a month after her cancer diagnosis, with 15 embryos frozen.
"It did give me something positive to focus on amongst everything else," she said. "It's all about having a baby, which I ultimately wanted to do. I could almost ignore the breast cancer for a while."
And it also gave her hope that she would survive and could look forward to a brighter future with a family.
A few weeks later, she started 18 weeks of chemotherapy, eventually losing her hair, eyebrows and eyelashes. "I'd already lost a breast so I didn't feel very attractive any more."
Hugh stuck by her and became a vital support person.
Friedlander also discovered she had the BRCA gene mutation, which increased breast cancer risks, so she had her remaining breast removed and had reconstructive surgery in 2009.
Amid it all, the pair's love blossomed. In 2010, she moved from Auckland to join Hugh in Wellington and they started trying to have a family.
After two failed attempts with frozen embryos, Friedlander finally became pregnant with their last embryo in October 2010.
They moved back to Auckland a few months before their baby daughter, Emma, was born in July 2011.
"It was very, very special. It was only three years since I'd been diagnosed with cancer that I had Emma."
They were eager to have more children and were told they might be able to conceive naturally, though their chances were low and they were advised to try IVF. It worked, and their son, Toby, was born last June.
Friedlander is grateful her surgeon raised the issue of children and knows of other women with cancer who missed that opportunity.
"At the time, all you're thinking about is cancer and whether you will live or die."
Ironically, she says breast cancer has given her the future of her dreams.
"I might not have got back with Hugh and I might not have had a baby. I feel extremely lucky."
GUIDELINES COULD PROTECT CANCER PATIENTS WANTING CHILDREN
The ability of cancer patients to have children after treatment could be protected by new guidelines.
A group of oncologists and fertility experts developed the guidelines, published in April, about fertility preservation for people having cancer treatment.
The guidelines noted that, while many cancers were successfully treated, the treatment method damaged people's fertility in the short and long term.
"Fertility damage can be a significant and distressing effect of cancer and its treatment," it stated. "Research suggests that many health professionals do not routinely discuss fertility and fertility preservation, despite recognising the importance of doing so."
It gave information for health professionals about fertility risks from cancer treatments and options to protect fertility, including freezing sperm, eggs, embryos and ovarian tissue.
Mary Birdsall, of Fertility Associates, who was on the guideline development group, called for a review of funding of fertility treatments for those with cancer because of inequities.
Banking frozen sperm for post-pubescent boys and men having cancer treatment had been done in New Zealand for decades and was publicly funded, she said.
Also, freezing embryos for women facing infertility from cancer treatment was funded under the public in-vitro fertilisation budget if they had a partner and were younger than 40.
Freezing eggs and ovarian tissue had only become possible in New Zealand five years ago but was an option for girls and women with cancer without partners or eggs to collect.
To date, about 30 or 40 girls and women had ovaries or ovarian tissue in frozen storage and an even smaller number had frozen their eggs, Birdsall said. Most had to pay for the procedures themselves.
Auckland's Starship hospital had removed ovaries or ovarian tissue to preserve fertility for some pre-pubescent girls having cancer treatment, an Auckland District Health Board spokesman said.
It funded those procedures but stressed it was "very uncommon" and had only been done if the child was having abdominal surgery.
"Further, the procedure is carried out subject to the Auckland DHB clinical guidelines and in the best interests of the individual patient," the spokesman said.
The Ministry of Health said district health boards would start funding egg retrieval, freezing and long-term storage from July 1 for women facing fertility damage from treatment for medical conditions, including cancer.
In 2012-13, DHBs received about $14 million for fertility services and it was up to boards to decide how to allocate the funds, it said.
However, the ministry excluded collecting ovarian tissue or ovaries, saying there was limited evidence of its success but that could be reviewed as new evidence became available.
Birdsall said the money had to come out of the already stretched public IVF budget. "As it is, couples wait more than a year for treatment. This will just make waiting lists longer. It's really, really disappointing."
She wrote to Health Minister Tony Ryall this week to plead for him to establish a separate fund to pay for freezing eggs or ovarian tissue for cancer sufferers.
Recent estimates put the likely cost at about $500,000, she said.
Using ovarian tissue to create babies was yet to be allowed in New Zealand and only 33 such babies had been born worldwide.
Part of an ovary or a whole ovary is removed by keyhole surgery (laparoscopy)
Ovarian tissue is sliced into very small segments and cryopreserved after checks for cancer cells
Thawed ovarian tissue is later transplanted either on or very close to the remaining ovary or outside the pelvic cavity to restore ovarian function after further checks for cancer cells
Natural conceptions are possible after transplanting, but in-vitro fertilisation (IVF) is often needed to collect eggs
Transplantation cannot be done in New Zealand until the Ethics Committee on Assisted Reproductive Technology (Ecart) develops guidelines but it is available in Australia and women can easily take their ovarian tissue there
Can be used for most women and also suitable for girls pre-puberty, who are yet to produce eggs
FREEZING OOCYTES (EGGS)
Ovarian stimulation then oocyte (egg) collection, which can take 10-17 days, and is done before chemotherapy or pelvic radiotherapy starts
Oocytes are cryopreserved
For embryos, eggs are fertilised and cultured outside the woman's body for one to four days then frozen
Sperm banking is possible only for post-puberty youths and men
It is publicly funded
Can be achieved from ejaculation or aspiration or biopsy from testicles, then sperm is cryopreserved