The Emotional Side of Oncofertility

Third and final day of our visit with Kirsten the journalist. We really enjoyed her stay and hope she’ll come back soon!

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By Kirsten Tellam

Today was a more difficult day at the lab, not because of the work I was doing, but because of the topic.

I was in meetings with various people in the lab almost all day. I started out talking to Sarah Rodriguez, a post-doc historian who works in the lab . Sarah and I talked about the social and political factors that influence women’s health; she’s particularly interested in 20th century women’s sexual and reproductive health. We talked about how reproductive health is usually presented in extremes, with little gray area. She encouraged all of us, when we’re writing about health, to contact a historian for background information and a non-extremist position on controversial issues. It’s a source I never would have considered, but a great one!

Up next was Shauna Gardino, the lab’s clinical research coordinator. Shauna and I talked about six projects in the Oncofertility Consortium:

1. The ethical, religious, legal, moral, and historical perspectives on oncofertility.

2. A willingness to pay assessment.

3. A shared decision-making survey.

4. A study on breast cancer survivors and how they interact with physicians.

5. A study on adolescent quality of life after cancer.

6. A psychological adjustment/decision-making study.

I then went over to the Prentice Women’s Hospital to talk to Kristin Smith, the patient navigator for the Oncofertility Consortium. This was the hardest but most interesting part of the day. Kristin’s job is to talk to patients who have been diagnosed with cancer about their options for preserving their fertility. This usually must happen in a very short time frame, because once a patient undergoes chemotherapy/radiation treatment, she usually becomes infertile. Kristin and I talked about specific patient cases (and both cried a little bit). One technique for preserving a woman’s fertility for when she’s cancer-free is experimental ovarian tissue cryopreservation. Doctors remove a woman’s ovary and keep 20% for research. The other 80% is cut into strips, sewn together, and then hopefully implanted in the woman’s body years down the line when she’s healthy again. Some women opt for egg freezing, which is difficult because eggs are mostly water. If ice crystals form, the egg is rendered unusable, so only 4% of frozen eggs actually yield live births. And there is the option of freezing embryos, which has a 25% live birth rate but involves the tricky problem of requiring a partner. If a woman is single, or casually dating, whose sperm does she use to fertilize the egg?

Kristin and I also talked about the preservation of fertility for young cancer survivors–girls who have yet to hit puberty–through ovarian tissue cryopreservation. This is an extremely touchy subject–parents don’t want to talk about their daughters’ future sexuality, especially when that daughter has just been diagnosed with cancer. But if they don’t have that talk, the daughter will most likely be sterile. The IRB protocol has not approved the procedure for anyone under 18 and the NU hospital doesn’t see patients under 18, so parents who want their daughter to have the procedure have to go to Milwaukee, another problem with the procedure. Still, Kristin said around 10 or 11 girls have had it performed.

It was a tough emotional day. I heard stories of women my own age dying of stage IV colon cancer; stories of women who wanted desperately to become mothers, only to learn that dream was no longer possible; stories of women whose partners refused to let them use the embryos they had frozen. The whole day made me grateful for the doctors and researchers working to make these women healthy and able to have children if they so desired.