Women who have survived cancer or are battling it can find support and information through an organization called Fertile Hope.
Fertile Hope is Born
When Lindsay Nohr was re-diagnosed with cancer at age 24, she had no idea that the treatments could leave her infertile. She had successfully beaten the cancer once before, but this time it had spread to her lymph nodes and would require chemotherapy in addition to surgery and radiation. When she learned that the chemotherapy could adversely affect her fertility, she was almost as devastated as she was by the return of her cancer.
There was little or no information on Nohr’s options, but she was relentless in her pursuit of answers. She knew what she wanted. She wanted to freeze her own eggs for future use, which is known as oocyte cryopreservation. The problem was finding someone who could do it on the time frame necessitated by her cancer treatment schedule. Once again, her stubbornness worked to her advantage, and she found a hospital willing to give her the treatments.
In spite of an incredible schedule involving radiation treatments and preservation treatments, Nohr was successful in both having her eggs frozen and beginning her chemotherapy on time. But during her research, Nohr realized that there was a terrible void for men and women in her situation. There was nowhere to turn for information and emotional or financial support.
In response, Nohr, a graduate of the University of Colorado Boulder with a degree in international affairs and economics, founded Fertile Hope, an organization dedicated to providing reproductive information, support, and hope to cancer patients whose medical treatments present the risk of infertility. They do this through programs promoting awareness, education, financial assistance, research, and support.
Meeting the Demand
Nohr sometimes feels overwhelmed by the demands of heading up an organization that has grown by leaps and bounds the last couple of years and is now partnered with the Lance Armstrong Foundation. But she wouldn’t have it any other way. “I wouldn’t want to do anything else, and at the same time I can’t believe I am doing this!” she says. “I hear the success stories of the people who have come to us, people who have beaten both cancer and infertility, and I know I am doing what I am supposed to be doing.”
For Nohr, Fertile Hope is both her passion and her career. For the people who are going through cancer treatments with the possibility of infertility, Fertile Hope is what guides them through the often confusing world of fertility options.
“Fertile Hope addresses a need that otherwise slipped through the cracks,” says Nohr. “There are several organizations addressing cancer and several addressing infertility, but where the two overlap there was nothing, and everyday patients were left unaware, uneducated, and unknowingly infertile.”
Fertile Hope is the type of organization Nohr wished she had had when trying to navigate simultaneously through both fertility and cancer treatments.
Joyce Dillon-Reinecke also wishes she had been able to find an organization like Fertile Hope when she was diagnosed with cancer. As almost an afterthought, a staff oncologist mentioned to Dillon-Reinecke the chemotherapy would probably leave her infertile. Until that point the possibility had not been conveyed to her in any way.
“I was shocked that my oncologist knew so little about what impact particular chemotherapy agents would have on my fertility,” says Dillon-Reinecke. “When we were first discussing a course of treatment, I tried to find out which agents could possibly be avoided or which ones might be less toxic to my reproductive system, but I wasn’t able to get clear answers.”
While waiting for her cancer treatments to begin, Dillon-Reinecke went to the Cornell Institute for Reproductive Medicine for in vitro fertilization treatments. Dillon-Reinecke and her husband had 17 embryos put away for future use. Once they had finished making the necessary cancer treatment decisions, they were ready to make decisions regarding starting their family.
Worried that reoccurrence would push their timeline out too far, Dillon-Reinecke and her husband chose to have their embryos carried by a surrogate mother. Now blessed with twin girls, Dillon-Reinecke, is the program director for Fertile Hope. “Fertile Hope wasn’t in existence when I was diagnosed,” says Dillon-Reinecke. “Meeting Lindsay and seeing how she turned her experience with cancer and infertility into a positive life mission inspired me to do the same.”
Dillon-Reinecke began by volunteering at Fertile Hope and soon became an employee. “I think it is important to use my own experience to help other patients who are in the same position by empowering them with information about their risks and options,” she says.
5 Steps to Support
According to Nohr, Fertile Hope accomplishes its goal through the following:
- Awareness: Increase awareness of fertility risks and preservation options among medical, patient, and lay communities.
- Education: Provide credible, accurate educational resources to enable educated medical advice and patient decisions.
- Financial Assistance: Provide fertility preservation financial assistance options for patients whose medical treatments threaten reproductive function.
- Research: Advance fertility preservation technologies through research grants.
- Support: Provide support to help patients cope with the physical and emotional issues associated with infertility, fertility preservation, assisted reproduction, family planning, genetic counseling, pregnancy, adoption, and other related issues.
- As for the future, Nohr hopes that Fertile Hope continues to grow and offer even more resources to those patients in need. “Fertile Hope has made tremendous headway in a short period of time, and I hope that with the strong infrastructure and strategic plan we are operating from, the future will follow a similar trajectory,” she says. “The need is profound and our programs and services are welcomed.”
Questions to Ask
If you are facing cancer treatments, Fertile Hope offers this list of sample questions to ask your medical team. These questions and their answers will help you understand how your cancer treatment can affect your fertility and what options you have:
- Will my treatments have any short- or long-term side effects on my reproductive system? If so, what are they? If so, what is the likelihood?
- Is infertility (men and women) and/or premature ovarian failure (women only) a possible side effect of my treatments?
- Are there any alternative ways to treat my condition without damaging my reproductive system?
- What are my options for preserving fertility prior to treatment?
- Is there anything I can do during treatment to protect my reproductive system?
- Are there any fertility preservation treatments and/or drugs that might interfere with my treatment regime (negative drug combinations)?
- If I do not preserve my fertility and become infertile or experience premature ovarian failure, what will be my reproductive options?
- Can you refer me to a fertility preservation specialist for further information and/or consultation?
- Upon completion of my treatments, how will I know if my reproductive system was affected and/or damaged?