This Woman's Work
Cancer survival rates are more promising than ever. But for some patients, chemotherapy and other treatments to battle the disease often come at a cost — their own fertility and reproductive future.
By Michael Moreci
This is the story of a young woman named Lindsay, but it could just as easily be the story of a young woman named Lisa or Jennifer or Molly. This could be the story of your daughter, your cousin, or your neighbor.
Because what Lindsay faced when she was diagnosed with tongue cancer at 22 was not only the prospect of a potentially long battle with the disease, but the likelihood that when she had won, any hopes of becoming a mother would be gone forever.
"The thought of being sterile was almost as devastating as my cancer diagnosis itself," Lindsay Nohr Beck writes on the Web site for Fertile Hope, the organization she founded in 2001 to provide information, support and financial assistance to women whose cancer treatments threaten their fertility.
"Cancer was manageable," she writes. "Infertility on the other hand presented a mystery."
With increased survival rates putting a heavier focus on the quality of life after cancer, researchers are beginning to turn their attention to one of the most devastating side effects of cancer treatment — the loss, for both men and women, of the patient's reproductive future. Approximately 130,000 people diagnosed with cancer in the United States each year are in their reproductive years, and an estimated 1 million cancer survivors are diagnosed during their reproductive years.
Welcome to the brave new age of oncofertility.
Late last year, Northwestern University obstetrics and gynecology professor Dr. Theresa Woodruff began spearheading a project through the Feinberg School of Medicine that studies ways to help female cancer patients preserve their fertility possibilities for life after the disease. With a $21 million grant from the National Institutes of Health, Woodruff helped create and now runs the nation's first Oncofertility Consortium, an initiative to combine the latest medical innovations from both oncology and fertility.
On Sept. 14-16, after this article went to press, the consortium was to host a three-day conference on the subject at Prentice Women's Hospital in Chicago, bringing together leading researchers, doctors and advocates from around the country.
Lindsay Nohr Beck, whose Fertile Hope foundation recently formed a partnership with the Lance Armstrong Foundation to educate women on the risks of infertility during cancer treatments, was scheduled to appear at the conference as part of the Oncofertility Consortium Community Advisory and Action Board.
Beck was to present "a live update on the committee's goals, objections and action items."
Conference plans also included the world premier of an oncofertility documentary, Cancer and Fertility — Patient Stories, which puts faces and names on complicated issues of cryopreservation, bioengineering and fertility ethics.
It's been a long time coming for Beck, now a cancer-free mother of two, but also for Theresa Woodruff, whose lab has been concerned with solving the reproduction potential of females for the last two decades.
Over the years, Woodruff's research led her to understand that, of the million ovarian follicles a woman contains, they all lead to either ovulation or death. Woodruff's goal was to understand which genes are regulated in follicle development. While conducting her research, Woodruff was also the director of basic sciences at the Robert H. Lurie Cancer Center, making her the perfect candidate to cross these two fields.
"I was always looking at the consequences of cancer," Woodruff says. "So when I started working on my research, I realized it was something I could contribute to the development of fertility options to people with cancer."
When a woman is diagnosed with cancer, the chemotherapy and radiation used to send the disease into remission often destroys the ability to conceive children. The aim of the Oncofertility Consortium is to maintain the integrity of current life-preserving treatments while also protecting a patient's fertility.
But the Oncofertility Consortium is a program that extends much further than medical development, research and practice. It's an ambitious synergy of multiple disciplines, all aimed at examining the psychological, legal, economic and humanist issues surrounding cancer and infertility.
"It became apparent to me that if we were going to go from the bench to the bedside there'd be a lot of concerns," Woodruff says. "We knew we'd need to involve a number of different disciplines because being a cancer patient isn't simple."
For one thing, there's the legal and ethical issue of ovarian tissue cryopreservation (which involves the removal and freezing of an ovary in girls under the age of 18) to deal with.
Early on, Woodruff invited Laurie Zoloth, a bioethics scholar at Northwestern University, to help the consortium think through the humanist perspective. Her inclusion was unusual, as such ethical discussions, when it comes to medical research and advancement, are generally dealt with after the fact.
Woodruff, though, doesn't push any issue to the side when it comes to the consortium's comprehensive approach. As the consortium developed, Woodruff also realized that its target patients were by no means limited to the Chicago area. To this end, the consortium is developing a Web site — MyOncofertility.org — that aims to bring cancer patients and survivors together to share their stories and strength. The soon-to-be-launched site will also provide education with sections like "5 questions for my doctor" and will take patients from the basics of oncofertility to treatment options to the hope found in future research.
"There's a large number of patients who face cancer in the prime of their lives," Woodruff says. "To have this notion of having something in the future is really a powerful concept."
And while Woodruff's project currently focuses on women's reproductive options, fertility is also an issue for male cancer survivors. At last month's conference, Dr. Robert Brannigan, an associate professor of urology at Northwestern, was scheduled to present a pilot project on "The Male Perspective."
According to 100 Questions & Answers About Cancer And Fertility, co-authored by Beck and Dr. Kutluk H. Oktay, cancer itself can cause infertility in men. And if the cancer itself doesn't destroy male sperm counts, the life-saving chemotherapy, radiation and surgery often will.
Now, as Woodruff's oncofertility consortium continues to study cryopreservation for female eggs, researchers will also begin to explore ways to preserve male fertility as well.
"The consortium is further validation of the need Fertile Hope sees every day," Becks says. "We applaud the consortium for taking a bold new approach toward research — collaboration as opposed to isolation — that will undoubtedly help provide answers that young-adult cancer patients and survivors are anxiously awaiting."
Life after cancer
When Libertyville resident Jean Nelson was diagnosed with breast cancer, she was presented with a number of treatment options. In each presented to her, Nelson found a common, surprising element — doctors who were concerned not only with saving her life but also preserving its quality once she was cancer-free.
"We sat down and immediately talked about life after surgery," Nelson says. "My doctors encouraged me to volunteer, to help others. My doctors have an extra dimension to them; they are what I call 'healers.'"
With survival rates on the rise, oncologists are increasingly preparing their patients for life after cancer.
One of the overarching missions of Dr. Theresa Woodruff's Oncofertility Consortium is to inform and educate cancer patients on their treatment alternatives. Woodruff believes that patients are the best advocates for their own health, and the importance of asking doctors the right questions and having the proper information is paramount.
Stuart Pinkwater, clinical director for the Cancer Wellness Center, shares Woodruff's belief in approaching cancer from a long-term-wellness point of view.
"In the past few years, that has become a very big issue, recognizing that long-term survivors continue to have not only medical issues but psychological, social and emotional issues as well," Pinkwater says.
The Northbrook-based Cancer Wellness Center is directed specifically at wellness for patients during treatment and once the cancer has gone in remission. Yet there are no clinical doctors or medical consultation. It's all about how individuals can regain control of their health after one of the most uncontrollable periods of their lives.
The program focuses on long-term survivorship through educating patients on healthy dieting and exercise. Additionally, the Wellness Center runs a number of different programs, classes, and social activities for cancer patients, survivors and their families. There's yoga, tai-chi and massage therapy. All of the classes and activities are geared toward proactively maintaining health as a cancer survivor, and they've all increased in attendance over the past four years.
"The first thing we created was the Healthy Lifestyle program," Pinkwater says. "You've dealt with not only the impact of the cancer but the treatment of cancer, and now it's time to regain some of what you feel you may have lost in life."
When her doctor first suggested that she try the Cancer Wellness Center, Nelson admits she was a little apprehensive. Having gone through chemotherapy, she just wanted to be done with the whole ordeal. Yet even after having been given a clean bill of health, Nelson didn't feel right. She was lacking something, emotionally and mentally. Two years after her first visit to the center, Nelson says she believes it's a community she'll be part of for the rest of her life.
"They teach you words like trust, and camaraderie, and community," Nelson says. "They just get it. You can go there and focus on your transformation in a safe place."
Nelson also reiterates a point stressed by Pinkwater: empowerment.
The thinking behind both the Oncofertility Consortium and the Cancer Wellness Center is that it is necessary to enable cancer patients to live full, healthy lives, during treatment and long after remission. Whether it's through medical innovations or giving patients strength through community, people are being taught that they needn't sacrifice their lives — or the future of their families — in order to conquer cancer.
"There's truly been a movement towards wellness, of being empowered to take care of one's self," Pinkwater says. "People are beginning to question, they're beginning to investigate. They're getting involved in their treatments, and that's a tremendous change."
One of Nelson's favorite examples comes from an extraordinary experience she had while on an otherwise ordinary shopping trip to Target. It was during her chemotherapy, and she was showing physical signs of the treatment. While in line, the cashier came out from behind the register and wrapped her arms around Nelson; it was a gesture of understanding, of shared experiences.
And that's exactly what this focus is about — persevering to embrace your life and the lives of those around you.
"I go to the center, and every time I go I say, 'Oh my gosh, that was so incredible!'" Nelson says. "My doctors were right; that's where I needed to go next."