Parked outside our office building at the lunch hour, are several food trucks vying for the perfect spot to sell their goodies. Mostly they try and park as close to the doors as possible, hoping to attract as many lunch-goers as they can (the science behind the food truck’s  “mythical spot,” can be found at NPR.com). Outside our doors we have the pasta lady, the falafel guy and a number of cupcake trucks tempting us with their sweet treats. Regardless of the options, I always go to the one cupcake truck that promises to not only satisfy my sweet tooth, but change the world in BIG ways too: Cupcakes for Courage!

Cupcakes for Courage is the brainchild of Kathryn and Laura Pekarik, two sisters that share the same passion for baking and saving the world. In May 2010, Kathryn was diagnosed with non-Hodgkin’s T-cell Lymphoma, which accounts for about 15% of all non-Hodgkin’s lymphomas in the US each year. According to Laura, “When we were at the hospital, we’d always talk about what we’d bake next. It kept our minds off everything. We couldn’t control the cancer, but when we talked about recipes, we could create flavors and measurements—and we knew what the outcome would be.”

Near the end of that year, a benefit was held in Kathryn’s honor to help defray the costs of her medical care.  To help contribute, Laura baked 250 cupcakes to host a bake sale at the event. Needless to say, her cupcakes were a huge hit and friends and family were begging for more! As a result, Cupcakes for Courage was born to provide the Chicago-area with delicious cupcakes while raising money for cancer research and Ride Janie Ride, an organization dedicated to providing direct financial assistance to Chicagoland individuals facing financial hardship as a result of their cancer care.

Giving back is what sets Cupcakes for Courage apart from the others. According to Kathryn and Laura, “Cancer research is an incredibly important cause and requires funding to find a cure.  That’s why we donate our proceeds to the Leukemia and Lymphoma Society and the American Cancer Society,” and Ride Janie Ride. In 2011, Kathryn was selected as the Ride Janie Ride recipient. She was so touched by their mission and their 100% volunteer base that she wanted to help them in their cause by “paying it forward.” Laura says, “Our hope is that one day, no one will have to suffer from the disease ever again.”

If you in the Chicagoland area, keep an eye out for the big green food truck plastered in cupcakes. You can also catch them in an episode of Cupcake Wars on the Food Network (yes, they’re that good!). Finally, you can visit them at their website, www.cupcakesforcourage.com or if you’re in downtown Elmhurst, IL, stop by Brainfreeze where they do all their baking and have a taste!

The adolescent and young adult (AYA) cancer survivor network is  slowly starting to build steam as more and more people begin to recognize the special needs of this demographic. AYA’s not only face a cancer diagnosis at a young age, but as a result, they may also struggle with late-effects of their treatment including infertility, heart problems, and psychological trauma. Stemming from the need to address these concerns, AYA groups have started to pop up all over the country providing a supportive gathering space, whether online or in person, for young cancer survivors to meet other people who may share a similar experience.

Arising from the need to connect young cancer survivors with one another, nature, and themselves, sprang True North Treks (TNT). We wrote about TNT in an earlier blog, but for those of you who don’t know, I’ll give you a little recap of what this great organization is all about.  TNT is an organization that supports AYA’s by taking them on short term treks in nature that focus on learning mindful awareness practices, connection to other survivors, and the beauty and balance of the great outdoors. TNT believes that this is “good medicine, especially for those who find themselves in transition after cancer treatment.”

One of the great things about TNT is that they are a group totally equipped to deal with the needs of young cancer survivors, specifically they’re medical needs. Some participants on past treks have only been out of treatment for a short time and still have to deal with IV’s, medication, and fatigue. The trek leaders have the experience and proper equipment to ensure that almost any survivor can participate on one of their treks. These are not expeditions designed to push survivors to their physical limits, but rather they are excursions for the soul and the spirit.

An upcoming event that True North Treks is co-sponsoring for AYA’s is the 1^st Annual Chicago SUP YACS Classic (Stand-Up Paddleboard and race, ride, and glide for Young Adult Cancer Survivors). This event is taking place on July 29^th in Chicago, IL, at Montrose Beach and is open to the public. If like me, you have never been on a paddleboard in your life, but think it sounds cool, there is a stand-up paddleboard clinic (a SUP 101 if you will) that newbies can take part in near the race start. There is a small registration fee, which will go toward programming for young adults with cancer. There is nothing like Chicago in the summer (told from a true Chicagoan) and no better feeling than knowing you are doing something that will benefit so many fantastic young survivors!

To register for this event, please visit the 1^st Annual Chicago SUP YACS Classic webpage. To learn more about True North Treks, please visit our Patient Resources webpage.

As part of our guest blog series, the Oncofertility Consortium would like to introduce our readers to Shannon Routh, and her organization for young survivors of ovarian and gynecologic cancers, Teal Diva, founded in 2009. Below is a post she wrote about her experience with cancer, fertility and finding the “new normal” in her life.

By Shannon Routh

Remember the MASH (Mansion-Apartment-Shack-House) game you used to play when you were a little girl, to predict what your life would be like when you grew up? The game where you choose your husband, how many kids you will have, where you will live, etc.  It’s funny how the words cancer, infertility or hysterectomy were never a part of my outcome.   My story ends a little differently than I had hoped…dreamed.

My husband and I were married just shy of 3 years when we got the news…you have ovarian cancer.  A few months prior to being diagnosed, I had abdominal pain.  I went to my gynecologist.  After reviewing my ultrasound, she noticed a cyst the size of a grapefruit on my ovary.  She referred me to a Gynecologic Oncologist.  As he prepped us for surgery, he told us we had 3 scenarios: 1-remove the cyst, 2- cancer, removal of cyst and ovary, and 3-cancer, hysterectomy, etc, etc, etc.  After surgery, I woke up asking if he did a hysterectomy and I was told he did not.  Oh my goodness…I was so relieved, so thankful.  The day I was released from the hospital is the day I learned I had stage IIa Clear Cell Carcanoma. I was 32.  And because of my age and cancer type, he wanted to be certain prior to taking both ovaries.  Wait…does that mean?…yep.  A 2^nd surgery was scheduled.  We went home…devastated.  In an effort to remain positive, I thought we could harvest eggs and pursue other options.  We went in for a consultation a few days before the radical hysterectomy and asked hopeful questions about our options, but we were told my cancer type feeds off of hormones. Unfortunately, you will not be able to bare children.  So not only do I have cancer, I can’t have kids.  WOW…talk about depressing.  But I didn’t have time to feel sorry for myself because I had to prepare for the hardest fight of my life.

My world was turned upside down by having cancer and learning I would never bare children, but I have found a new normal…one I didn’t plan for.  Throughout my journey, I needed desperately to connect with someone. So, one night I started writing and before I knew it, Teal Diva was born.   The mission of Teal Diva is to celebrate life!  As survivors of ovarian and other gynecological cancers, we understand the reason to celebrate every sunrise.  We are bound by our experiences and challenges and form a sorority which we never intended to join.  The primary beneficiary of our fundraising efforts are research programs seeking reliable screening tests for gynecologic cancers.

*To learn more about Teal Diva and other community resources for cancer survivors, please visit our Patients webpage.

Fifteen years ago, the U.S. House of Representatives designated the third week in April as National Minority Cancer Awareness Week in an effort to draw attention to the disparities in cancer incident and death rates, stating  ”While cancer affects men and women of every age, race, ethnic background, and economic class, the disease has a disproportionately severe impact on minorities and the economically disadvantaged.” Next week, April 15th-21st, is this year’s National Minority Cancer Awareness Week and the Oncofertility Consortium plans to continue to raise awareness about this divisive health discrepancy.

National Minority Cancer Awareness Week promotes increased awareness of prevention and treatment among segments of the population that are at greater risk of developing cancer. The week’s emphasis gives us an opportunity to focus on high-risk populations and to develop innovative approaches to battling cancer incidence unique to these communities.
As reported by the Centers for Disease Control and Prevention (CDC), cancer death rates for women are highest among African American women and new research suggests they are less likely to receive fertility preservation information after cancer diagnosis than Caucasian women. Although cancer deaths have declined for both Caucasians and African Americans living in the US, African Americans continue to suffer the greatest burden for each of the most common types of cancer. For all cancers combined, the death rate is 25 percent higher for African Americans than for Caucasians.

To better understand the disparities among the overall incident and death rates among racial/ethnic groups, please take a look at the tables below provided by the National Cancer Institute (NCI):

Table 1. Female Breast Cancer Incidence and Death Rates

Table 2. Cervical Cancer Incidence and Death Rates

Although much progress has been made in addressing disparities in cancer treatment and support, there is still much to be done!  Please use National Minority Cancer Awareness Week as an opportunity to continue to push for progress among minority communities in the fight against cancer.

Congratulations are in order for Kate Waimey Timmerman, PhD, who was just named by the American Association of Medical Colleges (AAMC) to the Women in Medicine and Science Steering Committee (GWIMS).  This appointment is an important step for Dr. Timmerman as well as the Oncofertility Consortium as it provides her with the opportunity to advocate for sex and gender equity in health and medicine nationally.

In 2009, the AAMC’s Board of Directors approved the creation of the GWIMS. This committee serves as a national forum for the advancement of women’s success in medicine and science by addressing gender equity, career advancement, awards and recognition, and recruitment and retention. The committee does this through advocacy, collaboration, fact-finding, and the development of initiatives, programs, and networking opportunities. GWIMS also supports women faculty in their development and implementation of institutional policies and professional development activities.

The GWIMS steering committee meets twice a year and provides additional networking opportunities at the AAMC Annual Meeting and the Early and Mid-Career Women Faculty Professional Development Seminars. According to Elizabeth Coakley, Director of GWIMS, “In order to address the growing number of gender-related issues in academic medicine, academic medical centers need visionary representatives who understand the complex responsibilities for women leaders.”

Dr. Timmerman is thrilled with her new appointment adding this new post to her repository of work promoting women in medicine and science. She states, “I am a great believer in collaborative approaches to problem solving and enjoy building relationships with like-minded individuals and groups for similar causes such as women’s education in science and medicine.” Congratulations Dr. Timmerman, we are very excited to see where this road takes you!

As previous studies have shown, women diagnosed with cancer during their reproductive years often do not receive adequate consultation, and sometimes none at all, regarding the fertility risks of cancer or its treatment.  Fertility is a unique survivorship issue that young cancer patients face, which can impact their quality-of-life after cancer treatment.  In the African American (AA) community, although more AA women are diagnosed with early-onset breast cancer than Caucasian women, little is known about patient awareness related to fertility or the rate at which providers are communicating potential fertility issues.

A new article in Supportive Care in Cancer by Oncofertility researchers, Susan T. Vadaparampil, Juliette Christie, Gwendolyn P. Quinn, Patrice Fleming, Caitlin Stowe, Bethanne Bower and Tuya Pal, entitled,  ”A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer,” examines patient/provider communication in the African American breast cancer population.  The authors studied AA women under the age of 50, diagnosed with invasive breast cancer between 2005 and 2006 in an effort to better understand the fertility communication and awareness barriers that may be in place for AA women being treated for breast cancer.

Similar to other studies, the authors found that a substantial proportion of young AA breast cancer patients were unaware of the impact breast cancer treatment would have on their fertility.  One half of young AA women diagnosed with breast cancer reported no discussion with their providers of fertility risks associated with their treatment.  The exception -women who were younger, had no children or few children, and had not undergone tubal ligation were more often aware of the fertility risks posed by their treatment.

The results of this study suggest that better communication and awareness about fertility is critical in order for AA patients to make informed decisions about their treatment.  In line with prior research, definite plans for childbearing, relationship status or sexual orientation should not play a role in whether or not someone is informed about their fertility risks. To learn more about this study or to read, “A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer,” please click here.

What does empowerment mean to you? Does it mean giving someone the authority or power to do something… because that’s what you’ll find if you look it up?  The word is not a new one – it originated around the 17^th century and the meaning has remained largely the same. People have a need for a word that makes them feel that they are or are about to become more in control of their destinies, and this is especially true when faced with a cancer diagnosis at a young age. On Saturday, April 14^th from 10:00AM-4:00PM, the Robert H. Lurie Comprehensive Cancer Center will be hosting an event entitled, Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors.

At this inaugural event, young adult and adolescent cancer survivors will learn strategies and information to help them embrace life after treatment with confidence. Get EmPOWERed is an opportunity for everyone under the age of 40 who has been treated for cancer, including childhood cancer survivors who are currently 13 years of age or older, to share experiences and receive support. Family members, friends and caregivers are encouraged to attend as well!

Get EmPOWERed will cover a lot of ground so there is something for everyone.  Topics that will be explored include: talking about cancer with important people in your life; coordinating follow-up medical care; managing stress and other cancer-related emotions; making good choices about exercise and nutrition; addressing insurance, financial, legal and other practical concerns; exploring options for building a family after cancer with fertility preservation patient navigator, Kristin Smith; managing pain and other effects of cancer; and helping caregivers to care for themselves.

The event is being held at the LaSalle Power Company in Chicago and there is a small registration fee for participants, which includes all the workshops and admission to a VIP after-party event at Gilda’s Club Chicago.  This is a great event for the young cancer community so if you that sounds like you or someone you know, please come out and take part in this great event! For more information on Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors, including registration, please click here.

In 2007, the Robert H. Lurie Comprehensive Cancer Center at Northwestern began a program called Cancer Connections. Cancer Connections was a monthly event held for individuals affected by a cancer diagnosis, to learn about services, meet advocacy groups and get the tools needed to manage the disease.  Now in it’s fifth year, Cancer Connections is debuting a new format, location and time to better serve the cancer community!

Cancer Connections will now be a held three times a year, with the first event on Saturday, March 24^th at Prentice Women’s Hospital in Chicago. The new event format will provide ways for both survivors and caregivers to learn wellness strategies for the mind, body and spirit. Cancer Connections will introduce tools, techniques and services used to re-energize individuals living with a cancer diagnosis. What you can expect:

Learn simple strategies for eating healthier, move more, and manage the stress and sleep difficulties sometimes associated with cancer.

Connect with networking groups, peer support programs and other communities, including the Oncofertility Consortium, committed to ensuring no one fights cancer alone.

Renew the sense of well-being by sampling massage, acupuncture, guided imagery, healing touch and other integrative therapies

Cancer Connections will also have licensed massage therapists on hand and workshops/breakout sessions on topics including:

• Simple Strategies for Physical Fitness
• Introduction to Yoga
• The Secret of Support
• Caring for the Caregiver
• Conversation about Hope
• Guided Imagery / Meditation

For more details about Cancer Connections or to register for the March 24th event, please click here.

The Oncofertility Consortium recently hosted a group of masters students from the Medill School of Journalism at Northwestern University. Over the next few weeks, they will be contributing their perspectives to the Oncofertility Blog. Here is one of their stories.

_________________

By Zara Husaini-

When Matthew Zachary was diagnosed with brain cancer 16 years ago, he was not made aware of all the possible repercussions of the disease. “My fertility wasn’t even considered back then,” he said.

Zachary, the founder and CEO of I’m Too Young For This, a New York foundation for young cancer patients, said that cancer should never deprive someone of the right to have a family.

“When anyone gets diagnosed they want to take care of it right away,” Zachary said, explaining that patients don’t always have time to seek out information regarding oncofertility. There’s a very small window of opportunity. The psychology of shock puts you in survival mode – you don’t think of anything except I don’t want to die.”

Zachary, who was diagnosed as a college senior, is the father of twins who were conceived by in vitro fertilization. His cancer had affected his fertility.

Oncofertility is a field that provides fertility options to cancer patients. The field is made up of cancer and fertility experts. Options for patients include egg banking, embryo banking, ovarian tissue banking and ovarian transportation and shielding…Read more about Zara’s perspective on oncofertility.

As we have covered in past blogs,  young people account for about 10% of all cancer patients.  As science, research and advocacy evolve, more young people are SURVIVING cancer and going on to lead healthy and productive lives. Nonetheless, young cancer survivors are in a league of their own when it comes to survivorship issues, (i.e., late-term effects of cancer treatment, fertility, heart & brain health, etc…). In an effort to address and celebrate breast cancer survivorship, particularly in women diagnosed at a young age, a new quarterly magazine was born: Survivors: A Magazine for Inspiration, Hope, Healing and More.

In November 2011, the premier issue of Survivors: A Magazine for inspiration, Hope, Healing and More was published. According to the editors, the goal of the magazine is to “highlight positive and inspiring breast cancer survivor stories – about people who have turned their diagnosis and situation into possibilities and opportunities.” The most significant aspect of this new magazine lies not only in its mission, but also in its content – the magazine spotlights grass roots programs and organizations allowing them to get the kind of exposure they often deserve and need, but don’t often get.

Throughout the first issue are stories from women, many still in their reproductive years, who are involved with the Breast Cancer Awareness Body Painting Project (BCAPP). BCAPP is a form of art therapy for breast cancer survivor showcasing women of all different races and ethnicities with their chests/torso painted, aiming to demonstrate the beauty and inspiration in survivorship by presenting a positive body image of breast cancer survivors. If you have not already, you should definitely take a look at these profound and brave images of women who have been diagnosed with and survived, breast cancer.  If you need a little inspiration, you will be hard pressed not to find it here.

Their first issue of Survivors: A Magazine for Inspiration, Hope, Healing and More can be downloaded for free so take a look at it here and if you love it, they’ve already released their second issue for purchase.  If you’re interested in contributing breast cancer survivor stories or other related content, please send them an email at: survivors@inkspotdesigns.com.