Seeking more than survival
Jackie Gorr took some of the nastier side effects of chemotherapy in stride.
No hair? No problem. Some days she’d wear the wig. Other days, she would go bald.
And laugh about it.
But Gorr found some side effects of fighting leukemia more difficult to cope with. Barely 21, Gorr was devastated when she heard that treatment would leave her infertile.
“I want kids so bad. It crushed me,” she said. “It was like a slap in the face.”
Jackie Gorr’s mother, Karen Espinoza, has been by Jackie’s side during her battle with cancer.
But today, Gorr has hope – both for long-term cancer survival and that she will one day have a child. Gorr, who lives in St. Petersburg, had a bone marrow transplant to treat the leukemia that had invaded her body. But first, she went to USF’s Center for Fertility Preservation, where her eggs were retrieved, fertilized and frozen.
Three embryos are in cold storage, waiting for the day that Gorr – now 23 – is ready to become a mother.
Making fertility preservation available for cancer patients is a huge step towards preserving cancer survivors’ quality of life, said Dr. Celso Silva, assistant professor in Obstetrics and Gynecology and director of the USF Center for Fertility Preservation.
Dr. Celso Silva gave Jackie Silva hope that she may one day be able to have children.
“We have become excellent at treating cancers, and in many instances we can actually cure them,” Dr. Silva said. “But once patients wake up from this nightmare, and they find out that the treatment has rendered them infertile, a new reality sets in: establishing a family may still be one of the things that patients want to do with their lives.”
Sadly, if this realization comes after treatment, patients are likely to have fewer options for having children. And cancer patients often don’t hear about their choices before treatment.
That’s why it’s so important to Dr. Silva that patients like Gorr get the chance to make these decisions.
“Frequently they are not counseled ahead of time,” he said. “They are, unfortunately, in a scenario where they’re under a lot of pressure, and they want to make decisions about their diagnosis and treatment as soon as possible, and fertility preservation ends up becoming secondary.”
Although many patients still aren’t offered fertility preservation techniques, USF’s center is winning recognition that may help raise public awareness. The USF Center for Fertility Preservation is partnering with Moffitt Cancer Center, which was recently awarded a grant from the National Cancer Institute to develop a Fertility Reproduction and Cancer Training Institute for Oncology Nursing.
The USF Center for Fertility Preservation and Moffitt also have been recognized as a Center of Excellence by Fertile Hope, an initiative to promote reproductive information sponsored by Livestrong, a leading foundation supporting people affected by cancer.
“We’re the only cancer center which has an on-site reproductive endocrinologist, Dr. Silva, who’s on staff and can see patients,” said Gwendolyn Quinn, PhD, co-director of the Survey Methods Core Facility at Moffitt and a USF associate professor. “That’s so important. It’s usually up to the patient to find that person, so it often falls by the wayside. Early on, their goal is just about survival. We find patients who have a lot of regret and remorse when they didn’t consider options before treatment.”
That’s why Dr. Quinn and Dr. Silva are excited about the new NCI grant, which will fund training for oncology nurses to talk with newly-diagnosed patients about their options for fertility preservation. Since nurses spend the most time with these patients, Dr. Quinn and co-investigator Susan Vadaparampil, PhD, MPH, thought they could help bring this information to patients.
“These nurses not only understand them from a clinical view, but from a psychosocial point of view how to counsel and shepherd these patients through a very difficult time,” said Dr. Vadaparampil, associate professor in Oncologic Sciences and associate member at Moffitt.
Moffitt hopes to train 250 nurses over a five-year period in a 10-week, web-based training program. Dr. Silva is principal investigator for the USF grant site. The grant will recruit nurses nationally, but specify that at least two must come into the program from each institution, so that knowledge will be preserved if one nurse moves on. The nurses who go through the program will be taught to, in turn, train their colleagues.
Dr. Quinn and Dr. Vadaparampil also are writing a textbook that will serve as training material for the nurses. Dr. Silva has written a chapter for the textbook discussing the current options for fertility preservation.
Cryopreservation is one option that Dr. Silva uses.
Cancer treatments can increase the risk of infertility to both men and women. Some types of chemotherapy can kill male sperm cells or female eggs. Radiation to sexual organs can do the same. In some cancers, sexual organs may have to be surgically removed.
However, the risk varies, depending on the type of cancer and the treatment. Some forms of chemotherapy, for instance, are much less toxic to reproductive cells than others.
Choices to preserve fertility may include cryopreservation of eggs, sperm or fertilized embryos before the patient is treated. Other options include ovarian or testicular tissue cryopreservation and ovarian down regulation.
The Center for Fertility Preservation priority is to work close with the patient’s oncologists, making sure that if patients choose to undergo any of the fertility preservation options, this will not delay or interfere with their cancer treatment. To date, research has shown that when performed adequately, fertility preservation does not worsen cancer prognosis or change survival or recurrence rates, said Dr. Silva.
Sometimes, Dr. Silva said, a patient may hear about the fertility preservation options and decide they would rather focus their energies completely on the cancer treatment.
That’s okay, too. Just having had the discussion may really help them.
“Being educated about the potential detrimental effects of cancer therapy on reproduction is very powerful,” Dr. Silva said. “They may choose to go through the fertility preservation process, or they may decide it is not for them. But we have now empowered a patient to make their own decision.”
Originally from Brazil, Dr. Silva came to the U.S. to pursue his dreams of doing both research and patient care. He studied at Brown University and the University of Pennsylvania before coming to USF.
“I do consider myself a scientist, but I can’t do only science,” Dr. Silva said. “I like interacting with my patients. In this country, you can do both.”
He is passionate about giving patients who long to be parents a chance to have children.
“For many couples, when the ability to have a baby has been taken away, it is such a huge deficiency in their lives,” he said.
Jackie Gorr is grateful to both Dr. Silva and to see a program that gives more cancer survivors hope that they may have children one day. She got her first cancer diagnosis at 15, but after treatment, went into remission. As the months became years, she thought she was safe.
But then Gorr started losing weight for no reason. When she went to her job waiting tables, she found it hard to hold her trays. At her 21st birthday party, she had to force herself to eat.
Sometimes Gorr wears a wig…
A week later – just a week shy of making it to five years cancer-free – she was diagnosed with leukemia.
What hurt most came after she was told that she would need a bone marrow transplant. The radiation before the procedure would leave her unable to have children. She struggled with feelings of inadequacy and loss.
“God made women able to produce children,” Gorr said. “It’s like that was stripped from me.”
But then Dr. Silva offered her hope.
“This is very close to my heart,” Gorr said. “It means the world to me.”
Dr. Silva’s discussions with patients about fertility preservations are honest and frank. He spells out the risks, discomfort and possible complications – including ethical and legal questions that may go beyond the medical realm. But Gorr was willing to inject herself with hormone shots. After some discussion with her insurer, the company covered the egg retrieval procedure.
And, even though Gorr was young, she and her fiancé decided to preserve embryos fertilized with his sperm, rather than unfertilized eggs, to have the best chance of success.
…and sometimes she doesn’t.
Gorr knows there are no guarantees. The frozen embryos will be implanted in her body when she is ready to have children, but the process doesn’t always result in pregnancy. Still, having that hope allows her to look toward the future.
“I want two boys and one girl, that’s my dream,” Gorr said.
Not that she cares that much about particulars.
“If I get just one child from those embryos, I will be the happiest person,” she said. “I will be truly blessed.”
– Story by Lisa Greene, photos by Eric Younghans, USF Health Communications