Monday, August 19, 2013

Big Decisions in Difficult Moments

I work with a small group of women who face an uncommon medical crisis. They range in age from 18 to 45; they come from many different communities and they represent a spectrum of values and personal beliefs. Really the only things they have in common are cancer (increased genetic risk of or actual diagnosis) and a desire to understand its impact on their fertility in the future.

As a patient navigator I understand the patient’s path. It’s my job to pave over the potholes & divert around the speed bumps: to help them get from today to tomorrow in the best health and with the fewest problems possible.

Cancer vs eggs: the cliff notes
To the best of our knowledge, females are born with a fixed number of immature eggs. Chemotherapy can be highly toxic to a girl or woman’s eggs.  Treatments for cancers of the reproductive organs may directly threaten a woman’s ability to get pregnant and deliver “the old fashioned way.”

Genetic risk contributes to a small number of breast and ovarian cancers. We see some women after they’ve learned they carry a dangerous mutation but before any cancer diagnosis. Like Angelina Jolie, some will choose to have risk-reducing surgeries, including removal of their ovaries. We familiarize them with their options for future childbearing via assisted reproductive technology (ART).

The most common cancer in young adult women is breast cancer. Women whose breast cancer is caught early enough to avoid chemotherapy will likely retain their baseline fertility. But the standard of care often includes years of hormone-blocking medication that is incompatible with pregnancy.

Just as we inherit our height potential and lactose tolerance, we inherit a baseline fertility. And a woman’s age is paramount: on average, the window slams shut at 42.  No reproductive endocrinologist (fertility doctor) in the world can change those two factors.

In our clinic we have extensive experience with “fooling Mother Nature” in a safe way that provides options for fertility preservation. Informing women about these options is our passion. Because time is of the essence, we have learned to move quickly!

The most reliable medical options for fertility preservation or protection are 1) cryopreservation of oocytes (eggs) and/or embryos; 2) use of GnRH analog / antagonist during chemotherapy – and the data are mixed for this.

Difficult moments
Fortunately cancer in women during their reproductive years is rare.  For my patients that means they are not only frightened, angry, depressed, confused or all of the above: they are also surprised. They may feel singularly unlucky to have cancer.

The crisis may be kept private by the patient or shared with a community. Girlfriends, moms, wives, boyfriends, husbands, lovers, brothers and others have accompanied patients to their appointments here. 

Few of us are thoroughly versed in cancer before it affects us. Fewer – including many oncologists, unfortunately – have a robust understanding of the effects on fertility. Even fewer understand what happens psychologically in that moment when a young woman discovers her potential to get pregnant and have biological children is facing a threat posed by the very treatment that may save her life.

Big decisions
Some of our patients already have a child or children. Many don’t. It doesn’t matter: if I’m seeing them, it means they want to understand their options for building a family post-cancer treatment.

Anecdotally speaking, many women have not made a conscious decision about childbearing until well into their 30s. A diagnosis of cancer can weigh heavily but will not always tip the balance. Many of our patients want some insurance; want to feel a bit more control over their destiny. Freeze now, decide later. 

No treatment comes without consequences; without risks. Although our clinic has been cryopreserving eggs since 2001, it was considered an experimental procedure until October 2012. Consequently it’s not well understood by the public that the process is available, safe and effective. 

Cryopreserving embryos has a longer history and is better understood, but deciding to fertilize eggs with donor sperm presents one more barrier for women without male partners.

Fertility preservation treatment is expensive and about 99.5% of the time considered elective. Therefore, cancer diagnosis or not, it’s not covered by health insurance. In European nations where fertility preservation is a covered service, patients still report anxiety and uncertainty.

I’m proud that we offer decision support to our patient in a process which has been validated in other clinical settings. A trained volunteer assists the patient with listing questions for the doctor, then audio records the consultation appointment and takes notes for the patient throughout.

Cancer is more survivable than ever before and fertility medicine continues to push its boundaries. Fertility preservation is almost a marriage of oncology and ART; a medical center administrator recently called it “a fascinating and rapidly evolving field.” Some of our patients have written about their experiences & journalists have interviewed others. To understand what fertility preservation means for quality of life for women with (and at high risk for) cancer, listen to the patients (PDF) and their families.

This post is part of the XX in Health Week. Check out RockHealth’s assessment of what women in health have accomplished and what work remains to be done. 

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