Recently, one of our friends and cancer advocates, Jonny Imerman, was featured on CNN Health, in an article entitled “Pairing ‘Angels’ with Cancer Patients,” showcasing the organization he began 10 years ago, Imerman Angels. Imerman Angels is an organization founded in 2003 that carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Caregivers (spouses, parents, children and other family and friends of fighters) also receive 1-on-1 connections with other caregivers and survivors. These 1-on-1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with their experience.

In 2001, at 26 years old, Imerman was diagnosed with testicular cancer. He underwent an aggressive chemotherapy regime that lasted 5 months only to have the cancer return one year later, this time in his spine. Throughout his cancer treatment, he would walk the halls of the hospital and talk with other young cancer survivors, hoping to make a connection through their shared experience, and offer hope and support. Imerman says, “It was instant friendship. You’re not talking surface level. You’re talking about life and death. My goal was to get in there and motivate patients so that they wanted to jump out of their chemo bed and literally start swinging at this thing.”

Once Imerman was deemed “cancer free,” he was motivated to start engaging the young adult cancer community, and connect patients with other patients or survivors experiencing a similar health crisis. Imerman saw the value in providing a service enabling a cancer fighter to talk to a cancer survivor, who not only had beaten the same type of cancer, but who also was the same age and gender as the fighter. He started reaching out to doctors and hospitals and was referred to other cancer survivors. He collected information from patients, networked with other patients and survivors, and became a cancer matchmaker.

Today, a decade later, Imerman Angels has a database of more than 4,000 survivor mentors. The group tries to connect people living in the same city who can meet in person, but its database also extends overseas, and some pairs communicate via phone and Skype. On average, the group creates five to seven pairs a day and has made more than 8,000 matches in more than 65 countries.

Although Imerman Angels works with all age groups, the majority of their “angels” are between 18-40, a demographic often underrepresented in the cancer care community. According to Jenna Benn, a young woman diagnosed with a rare form of lymphoma when she was 29, “Imerman Angels is incredible in the sense that they’re able to pair you up with someone that looks just like you and that gets it and that can tell you it’s going to be OK. All of a sudden, your reality doesn’t seem so strange.”

Read more about Jonny Imerman and Imerman Angels at CNN Health in, “Pairing ‘Angels’ with Cancer Patients.”

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.

This week is the 10^th Annual National Young Adult Cancer Awareness Week, beginning April 2^nd and ending on April 8^th. In April 2003, National Young Adult Cancer Awareness Week was launched, and organizations and clinical institutions throughout North America began partnering to raise awareness about the unique needs of this age group. The young adult cancer population is defined as anyone who has been diagnosed with cancer between the ages of 15 to 39, and according to the National Cancer Institute (NCI), more than 70,000 young adults are diagnosed with cancer each year.

Young adults with cancer face unique concerns such as fertility, body image, cognitive function, long-term effects, education, insurance and employment. They also deal with distinct issues based on their age group, still reaching for their goals and dreams, which many older cancer patients have already achieved. For many young cancer patients, they envision themselves with a biological family at some point in their lives so fertility is a top concern for the young adult population.

In 2003, when National Young Adult Cancer Awareness Week was founded, there were few groups or organizations advocating for young adults with cancer. Today though, there is a large movement on behalf of this age group providing a number of services, programs, and networking opportunities including the Oncofertility Consortium, Stupid Cancer, and Imerman Angels among so many others.  There is something for everyone!

For more information on community resources for young adults with cancer, please visit the Patients page of our website. You will find support groups and organizations that cater to the specific needs of young adults diagnosed with cancer. In the meantime, help us bring awareness to the young adult cancer community by spreading the word about National Young Adult Cancer Awareness Week!

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.

On October 12, 2010 a special issue of the Journal of Clinical Oncology will highlight the importance of adolescent and young adult (AYA) cancer awareness. In an overview on AYA oncology, David M. Thomas, et al., emphasizes the “clear clinical need” for a new subfield of oncology. Issues that are important to AYA cancer patients are relevant to many clinicians, from oncologists (pediatric, medical, and radiation specialists) to nurses, psychologists, and reproductive endocrinologists.

In addition to the fertility issues that we often discuss on this blog, AYA patients need tailored approaches to care depending on their age. Unfortunately, there is a lack of data on the side effects of specific chemotherapy and radiation treatments on AYA patients. The quality of survivorship is also important to the AYA population and requires clinicians to have a broad understanding of the many life changes that patients may go through during or after treatment including attending college, entering the workforce, or starting a family.

A position statement in the same issue calls for increased training for health professionals that work with AYA populations. Specifically the authors recommend that professionals have AYA-specific clinical knowledge and can deliver appropriate care to their patients. In the case of oncofertility, this would require the clinical community to know all of the currently available fertility preservation options and deliver care by referring them to appropriate reproductive specialists. The Oncofertility Consortium tries to facilitate this process through the FERTLINE that helps providers and patients understand the fertility preservation options available in their area.

The Young Adult Alliance was started to mobilize the many organizations that care about AYA issues and holds an annual conference every year. This November, members of the Oncofertility Consortium will attend the conference and present their knowledge on navigating oncofertility patients and the different perspectives in oncofertility. We look forward to meeting with the AYA community and hearing their insights on the issues!

In 1995, Matthew Zachary was a typical, yet talented, college student attending Binghamton University in upstate New York. While studying to become a music composer, Zachary was diagnosed with a brain cancer called medulloblastoma. After successfully fighting the cancer, Zachary founded I’m Too Young for This! to support young adult cancer patients and raise awareness of the precise needs of this community.

Young adult cancer patients face a variety of hurdles along their medical journeys. While survival rates for young children and elderly cancer patients increased over the past few decades, rates for 15 to 40 year-olds are unchanged. According to Zachary, ”Delayed diagnosis has proven to be a significant contributor as to why young adults have not seen the same improvement in survival rates as other age groups over the past 30 years.” Zachary was himself left undiagnosed for 6 months and tries to prevent this from occurring again through persistent outreach to primary care physicians.

Once patients are diagnosed, doctors often fail inform them about young adult-specific issues, such as the effect of cancer therapies on fertility. Since most cancer research and clinical trials are currently performed on the elderly, cutting-edge cancer treatments are also tailored to older people. I’m Too Young for This! “taps into the anger and hostility of young cancer patients,” who feel ignored by the medical community, says Zachary.

I’m Too Young for This! also hosts informal Happy Hours across the country and an Annual Gala to promote its mission and provide entertainment to young cancer patients. It is also developing additional events that will connect patients undergoing treatment, those in remission, and healthcare professionals in a continuing effort to ensure that young cancer patients get the best support possible.

From the NCI Cancer bulletin (www.cancer.gov):

Image: NCI

NCI has launched a new Web portal that provides a single access point to information for adolescent and young adult (AYA) cancer patients aged 15 to 39. About 70,000 AYAs are diagnosed with cancer each year in the United States.

Cancer is the second leading cause of death in this age group. Yet, substantially less attention has been given to young adults with cancer than to children and older adults, and improvement in the survival rate of young adults has not kept pace with that achieved in other patient groups. Reasons for this lack of progress include issues specific to this age group: differences in biology or intolerance of therapy, delay in diagnosis, physicians unfamiliar with the disease, a lack of both available clinical trials and access to these trials, and, often, the psychosocial condition of the patient. Additionally, AYA patients often have special concerns that differ from those of older cancer patients, such as preserving fertility, being able to obtain health insurance and access health care following a cancer diagnosis, and feeling isolated because of a lack of peers who can relate to fighting cancer at their age.

The portal was developed in response to a report by the Adolescent and Young Adult Oncology Progress Review Group (PRG). This PRG, a collaborative effort between NCI and the Lance Armstrong Foundation, was followed by Closing the Gap: A Strategic Plan, developed to address recommendations in the PRG report. The AYA cancer portal is designed to reach newly diagnosed AYA patients with evidence-based information that will help them learn more about their treatment options and participate in treatment-related decisions, explore clinical trial options, get emotional/coping support, and learn about organizations that provide information and support to AYAs.

We are excited to announce that the Oncofertility Consortium’s patient-facing website, www.myoncofertility.org, is featured as a prominent resource on the portal, linking young cancer patients with the information they need to best navigate the difficult fertility preservation decisions that they face when confronting a cancer diagnosis

The portal can be accessed at http://www.cancer.gov/cancertopics/aya.

The Oregon Health and Science University Adolescent and Young Adult Oncology Program at the Knight Cancer Institute was awarded Fertile Hope’s National Center of Excellence Status award on April 9th, 2009.

Fertile Hope is a non-profit organization that strives to provide information on reproductive health for cancer patients and survivors who may be facing infertility due to their cancer treatments. According to OHSU’s press release, the award “recognizes the institute’s leadership in addressing fertility issues and options for young cancer patients.”

OHSU is one of just seven healthcare facilities in the United States to have been awarded the Center of Excellence Status. The Adolescent and Young Adult Oncology Program may not have succeeded as well as it has without the tremendous efforts put forth by Dr. David Lee.

An internationally reknowned researcher in the area of female fertility preservation, Dr. Lee initiated participation between the program and the physicians that treat infertility at OHSU by encouraging oncologists and infertility experts to communicate so that options for fertility preservation are now included in the counseling for young cancer patients.

Dr. David Lee works in the Department of Obstetrics & Gynecology at the OHSU Infertility Clinic. He was present at the event with Dr. Hayes-Lattin, director of the OHSU Adolescent and Young Adult Oncology Program and co-chairman of the LIVESTRONG Young Adult Alliance, to accept the award from Fertile Hope.

Read the OHSU press release here and to read the blog entry on the award by Fertile Hope founder Lindsay Nohr Beck, click here.