Y-ME, one of the oldest breast cancer organizations, has closed its doors of service. While to some this is old news and for others it may feel irrelevant, for me it strikes a chord of sadness. For more than 30 years, Y-ME served as a great point of contact for anyone diagnosed with breast cancer. As the years fleeted, the organization became most known for its 24-hour live, multilingual support hotline. Thousands of newly diagnosed women were able to speak to a breast cancer survivor anytime – day or night. Hundreds of volunteers stood ready to serve as a support to someone who was “in their shoes.” In July, Y-ME ceased services and has subsequently filed for Chapter 7 bankruptcy.

There have been many articles written about the organization, the abrupt dismissal of staff, and its shutting down of services. Some reference the financial meltdown of ’08 and its impact on nonprofit organizations. Others question the need for such services during the changing technological times. Whatever the reasons, the doors are closed and the services are no more.

What is most relevant to me are the thousands of women who are currently being referred to Y-ME, who finally muster the strength to call, only to hear a message to call another organization. And the hundreds of volunteers who, because of their experience, have dedicated themselves to helping and supporting others affected by breast cancer.
As part of the community of breast cancer organizations, YSC is saddened by the loss of one of its own. YSC and Y-ME have worked together on numerous projects and programs to meet the needs of women facing breast cancer and those who love them. We’ve collaborated on numerous trainings expressly for young women and continue to use that experience to service our constituents. YSC is strengthened by such partnerships and remains dedicated to serving young women and engaging volunteers in meaningful ways. For those who were diagnosed as a young woman and received Y-ME peer support hotline training, we invite you to join our efforts to support YSC’s constituents. If you are interested in this opportunity, please complete this form.

There is strength in numbers. Although that number has been reduced by one, we are still strong – we are not alone. There’s a community of cancer organizations striving to meet the multifaceted needs of women with breast cancer. We acknowledge Y-ME’s role in raising the profile of breast cancer support services and YSC remains ready to serve and engage young women diagnosed and those that care about them.

Jennifer with Parker when he was six weeks old, circa March 2000.

My husband, Matt, and I were happily expecting our first child, thinking about nursery patterns and what life would be like as parents, when our world was turned upside down.

At 27, I had no family history of breast cancer and was healthy and busy climbing the corporate ladder. I found a lump during a self exam and showed it to my obstetrician. Thankfully, my doctor took it seriously and had it checked out. Surprisingly, some doctors dismiss young woman thinking they are too young for it to be breast cancer.

November 22, 1999, just three days before Thanksgiving, is a day I will never forget. I was 27, 22 weeks (5 ½ months) pregnant when the surgeon told me those four words, “You have breast cancer.” My head spun and all I could think was, “Am I going to die? Is my baby going to make it?” It was hard to understand how a baby could be thriving in my body, while cancer was trying to kill me. What should have been one of the happiest times in our lives was spent researching everything we could on being treated for breast cancer while pregnant. At the time there were just 40 cases in the national registry. All of the babies had been born healthy but, in many cases, prematurely. Today, we know that breast cancer is the most common form of cancer in pregnant and post-partum women, occurring once in every 3,000 pregnancies. In addition, nearly 4% of pregnancies are complicated by breast cancer, and 10% of breast cancer patients under 40 develop the disease while they are pregnant.

We visited with several doctors before making a final decision on treatment as the pregnancy complicated things just a bit. I am an overly organized, Type A person, so I needed a plan:

•    First – Surgery. I opted for a single mastectomy since I couldn’t have the radiation that is required with a lumpectomy during the pregnancy. I couldn’t have reconstruction at the time of surgery since my other breast was enlarged due to pregnancy. I also didn’t want to be under anesthesia any longer than necessary. (I had reconstruction four years later.)

•    Second – Chemo. My cancer was very aggressive (ER-/slightly PR+ and HER2+++), as it is in most young women and growing rapidly. Because of the aggressiveness of the tumor, I had to start chemotherapy during my pregnancy. There was a new drug, Herceptin® (trastuzumab), in clinical trials for Her2+ breast cancer, but I did not qualify with the pregnancy. The baby and I tolerated the red devil Adriamycin (Doxorubicin) and Cytoxan (cyclophosphamide).

Because I didn’t want to use my leave time before I delivered and needed to work as a distraction and for the income, I continued working, with reduced hours. The day after my last treatment, I unexpectedly went into labor five weeks early. I wore my wig in the delivery room to try to feel normal. It kept popping off, so I finally flung it across the room and let them deal with a bald pregnant woman. The doctor on call joked that we had matching bald heads. The room was full of neonatal doctors and nurses who anticipated that our son would need assistance. Matt and I both cried when Parker was born. He was perfectly healthy with a head of hair, which was our sign that he hadn’t been harmed by all of the treatments.

I didn’t want cancer to take away the experience of nursing, so the lactation experts worked dutifully with me, forgetting every time that I only had one breast to pump. Since I’d just finished chemo, they wanted me to “pump and dump” for at least three weeks. As much as I tried, my milk never came. It was just as well. I was tired and loved having Matt help feed Parker.

The precious baby we worried so much about is now a healthy 12-year-old that just started 7th grade. I know how fortunate I am to be here for his many milestones. I don’t take them for granted.

I am grateful for the profound impact YSC has made during the last 14 years. I was desperate to talk to another young woman who had gone through cancer treatments while pregnant when I was diagnosed, but it was hard to find someone in 1999. YSC and Hope for Two now connect young women facing this dreaded disease. My friends give my contact information to other young women, especially those who are pregnant with breast cancer. I am happy to help them and provide hope that they can get through this difficult journey.

We now know so much more about pregnancy during breast cancer and new targeted therapies are available. Progress is being made, but it’s still not good enough. I won’t stop advocating until we can prevent this disease from starting and spreading. Until then, I will be here to offer support to other women who, as one survivor so eloquently put it, have to, “wear my bra.”

Jennifer co-authored the award-winning book Nordie’s at Noon: The Personal Stories of Four Women “Too Young” for Breast Cancer (www.nordiesatnoon.com) with three other women who were diagnosed when they were 30 or younger.

Click image to download flyer.

When you get diagnosed with breast cancer at a young age, you receive a significant amount of information about survival, surgeries, chemotherapy and radiation. But, you may not get a lot of information about early menopause, which can occur as a result of that chemotherapy. Induced menopause isn’t exactly the same as “natural” menopause, and there are some unique issues regarding fertility, sexuality and treatment of menopausal symptoms that arise in young women with breast cancer.

Induced menopause happens much more quickly than “natural” menopause, as the chemotherapy disrupts the normal function of your ovaries. Because the change in hormone levels is so sudden, the symptoms of induced menopause tend to be more severe than those experienced by women going through natural menopause due to age. Symptoms can include hot flashes, night sweats, vaginal dryness or irritation, mood changes and sleep disturbances, among others. Of course we can’t use traditional hormone replacement therapy to alleviate these symptoms, but, the good news is, there are other ways we can safely help.

A major issue with induced menopause is loss of fertility, but, thankfully, in this day and age, we can do something about that! The natural decline in fertility that occurs with age varies wildly among women, and I’ve had many patients sadly surprised to find themselves unable to get pregnant (even with fertility treatments) in their late 30s. It never dawned on them that their ovarian function might already be decreasing, and, by the time they tried to get pregnant, it was too late. When you KNOW your ovaries are going to shut down on a specific time frame due to chemotherapy, the reproductive endocrinologists can now harvest eggs prior to this and store them for later use, which is pretty amazing.

I’m going to talk about all this and more on Thursday, August 16, during a webinar about early menopause for YSC. I’ll discuss what it’s all about, what to expect and what you can do about it. The most important thing to know is that we CAN do something about it — talk to your ob/gyn before you start your chemotherapy or if you are experiencing any menopausal symptoms — we’re ready to help you!

Beyond the Hot Flash: What To Know About Early Menopause

Thursday, August 16

8:00–9:00 p.m. ET

Link to register: https://www1.gotomeeting.com/register/827527064

Or call: 877.YSC.1011 (877.972.1011)