Fertility Preservation, Patient Navigation and Cancer Survivorship

March is Women’s History Month and an appropriate time to blog about one of the most rewarding and complex parts of my work as a patient navigator- supporting young women in their decision making processes related to fertility preservation options before they begin therapy for cancer.  Chemotherapy, radiation and surgery all have the potential to adversely affect a young woman’s ability to conceive, carry and/or give birth to a child.

Some of the current data are straight-forward or at least pretty intuitive.  Radiation to the pelvis will likely damage ovarian function.  A hysterectomy, while removing cancerous cells and potentially saving a life, also takes the space for a new life to grow.  Chemotherapies composed of alkylating agents administered in high doses often lead to premature menopause.  Stable cardiac function is threatened by anthracyclines and pregnancy and birth require much of a mom’s heart.

Because of women’s intricate biology our eggs can not be retrieved rapidly or preserved as reliably as the gametes of our male counterparts.  Often there is not time to go through the weeks of hormone shots and laparoscopic surgery. When time is available, finances are often a barrier.  Fortunately, organizations like the LIVESTRONG have financial assistance programs like Fertile Hope which assist young women in achieving fertility and family planning goals.  http://www.fertilehope.org/

In addition, researchers like Teresa Woodruff and her fabulous team at Northwestern, are advancing the science and practice of OncoFertility for all women.  http://www.woodrufflab.org/

But what does all this look like in real life, or in my life as a navigator and the lives of the women I serve?

It is me sitting on the edge of a hospital bed of a woman I have just met and listening to stories about previous losses and terminations, helping her put these into a context meaningful to her, that now includes the challenges of cancer.

It involves recognizing blessings in disguise; teenage motherhood years before a cancer diagnosis was not such a bad thing after all.

It is gently but firmly reminding a young woman during the peace and joy of remission that this is the time to move forward with hormone shots and egg retrieval.

It is the open and sometimes painful discussions about what happens if there is no survival? Will it be easier for the husband left behind if only eggs are preserved rather than embryos?

It means researching clinical trial options that will preserve ovarian tissue at little or no cost to the participant (and fighting with insurance companies about the small part they must contribute).

It is grieving for the loss of many things and hoping for new, precious ones.

It is sharing frustration that the deck is so unfairly stacked against women who are partnered but not married, who are single or who share their life and love with another woman- financial help is just not available to these women in the same way it is to those in heterosexual marriages.

It is keeping abreast of the limited but important research on the dangers of reintroducing ovarian tissue into the bodies of women treated for leukemia and educating patients and their oncologists on the good but not perfect option of Lupron to shut down ovarian functioning during treatment.

It is partnering with the brilliant, willing but very busy teams of physicians and nurses at the Greenebaum Cancer Center to ensure that all young women coming through this institution have the best chance at motherhood, along with survival.

In addition to being Women’s History Month, March is also the month in which I celebrate my own cancer survivorship.  This coming Saturday marks 27 years since my parents where called into a room and told what was surely the most disturbing and heart wrenching news of their young marriage.  The idea that their sweet little girl could one day have children of her own surely seemed almost as ridiculous as the fact that the bump in her face was filled with poisonous little devils that would rapidly take over her body and kill her were they not cut & zapped to remove the poison.

Who can say exactly how the conversation about chemotherapy and fertility went or if it even happened in those first days and weeks.  There was, as there is in all the conversations that happen in this cancer center every day, a focus on the eight and a half year old life in front of everyone, not the potential lives of the distant future.

As it turns out the chemotherapy agents I had were not toxic to my reproductive system or my heart.  I did well, very well, and became the mom of two wonderfully spunky and curious little boys.  The surgeon who once carefully spelled out the long, complicated, terrible name of my cancer on a piece of paper for my father became a family friend; my parents celebrating along side him the bar and bat mitzvahs of his children; his wife sending me baby gifts of wooden stools with the beautiful letters of my sons’ names carved in them.

My wish for each young woman I serve through my work with the Ulman Cancer Fund is that she may have all of the information needed to make the choices that best fit her life and dreams.  That I may be as creative and determined in my search for resources for them as I would want someone to be for me, were the situation reversed.

About Elizabeth Saylor

Director of Young Adult Patient Navigation
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