Update from the Young Survivors Conference in Dallas

I just received this update to share with you all from our first guest blogger, Alex Exley, Fertile Hope's Program Director:

"I’m heading back from the 9th Annual Conference for Young Women Affected by Breast Cancer hosted by the Young Survival Coalition, Living Beyond Breast Cancer and Susan G. Komen for the Cure. I loved catching up with old friends and meeting new ones, and I especially loved meeting more than a few women who had preserved their fertility through our Sharing Hope program who came by the booth to say, “Thank you!” So many stopped by the booth to say thanks to Fertile Hope, and it seemed to me that of all the women I talked to they had the most positive experience!

Fertile Hope collaborated again this year on the fertility session, and Christine Duffy, MD, MPH whose research focuses on decision making around fertility by women with breast cancer, and who is a survivor herself, gave a great presentation that really homed in on the issues and questions on the mind of the 80+ women in the audience. Allison Rosen, PhD presented the adoption session, which had a great deal of information about international and national adoption possibilities. There were almost as many women in that session. Both sessions were recorded and will be available online at http://www.youngsurvivorsconference.org/.

It was exciting to see the pregnant bellies and glowing cheeks of some survivors this year. One came to the fertility session and shared her story of getting pregnant after having her ovaries removed (she got pregnant through IVF using embryos she had frozen prior to treatment). A lot of women didn’t know that it is possible to carry a pregnancy even if one is in menopause, so it was great to hear her tell her story. Another woman stopped by the fertility session to tell us that she came to this session at the conference four years ago and was anxious about her fertility status then but now four years later she’s pregnant!

As this was my first time attending this conference for Fertile Hope, what was striking to me was talking with so many women who might be in treatment or only weeks out of chemo, but were already planning exactly when and how they were going to start a family. This was true whether or not they had taken steps to preserve their fertility (and most hadn’t). Fertility is not part of the survivorship experience only at the time of diagnosis or when trying to get pregnant or become parents, but it's on women’s minds from the day they are diagnosed until they become mothers once, twice, or four times over."

Did you attend the conference or either of the sessions? What did you think?

Tired of Pink? Help Us Figure Out How to Bring Infertility Out of the Closet...

Years ago no one talked about breast cancer publicly. It was whispered about in the aisles of the grocery stores, kept behind closed doors, and dealt with in secret and isolation. Now, it is on billboards in Times Square! This is exactly what needs to happen with infertility. We are still in the whisper phase and need to figure out how to get to Times Square.

Today, I was in a great meeting brainstorming with a diverse group of leaders from the reproductive community. The meat of our conversation was how to change this – specifically, how the entire reproductive community can work together to increase awareness and improve access.

I truly believe that we can achieve more together than we can alone, which is why meetings like this get me very fired up. The key is to make sure that the conversation doesn’t stop with the meeting. So, while we all digest all of the ideas discussed and before we move forward with any new programs, I want to solicit your advice. How do you want to see us remove the infertility stigma and increase access to treatments?

My Ovaries Are D-E-A-D, Dead...

I love my job, but like everyone I have good days and bad days. There are definitely times, especially in this economy, when I question why I do what I do. Almost immediately after my mind heads down this path, something reminds me why I should stay the course. Last week, while on vacation and daydreaming about giving it all up and moving to the mountains to ski forever, I received the following email from a survivor who Fertile Hope approved for financial assistance for egg freezing through our Sharing Hope program:

“Just found out... My ovaries are d-e-a-d, dead. Thanks to you, I have those seven frozen eggs, hope, and no regrets.”

Needless to say, Fertile Hope’s work is important and I am here to stay. Check out more inspirational stories or share yours. We all need to stay inspired, right?!

How Have the Costs of Cancer Impacted You?

The American Cancer Society and the Kaiser Family Foundation released a report titled “Spending to Survive” illustrating the financial burdens faced by cancer patients, who often face enormous medical costs even when they have health insurance. People often ask me why the financial eligibility criteria for our Sharing Hope financial assistance program are so high ($75-100,000 for women and $50-75,000 for men) and this is exactly why. Everyone knows that the cost of cancer is high, if you don’t have insurance. But few people know that even with insurance, people are spending so much. These costs coupled with cost of sperm banking ($1,500), egg and embryo freezing ($15,000), surrogacy ($100,000) or adoption ($25,000) can make parenthood after cancer unattainable. How have you been impacted by these costs?

How Can You Prove You Had Cancer?

Did you see Erin Zammett Ruddy’s article in Glamour about the woman (pictured) who faked cancer?! Supposedly, it is happening more and more. These fakers are trying to access some of the perks of being in the "cancer club" like free retreats, scholarships and financial assistance. Fertile Hope is looking to expand its portfolio of financial assistance programs and keeps running into this question – how does someone prove they had cancer? We can verify income with the IRS, citizenship with a Social Security number, and age with a Driver’s License, but cancer is hard to prove. Are you listening LAF? Like AARP, I want a LIVESTRONG card with benefits! Any other ideas?