Voices Of the Young Adult Cancer Movement

The young adult cancer movement is growing. Meet several advocates in the young adult movement (Doug Ulman, Matthew Zachary, Heidi Adams, Maimah Karmo, Michelle Whitlock, Elissa Thorner-Bantug, Danielle Tindle and Joe Schneider) and Dr. Leonard Sender, Medical Director of CHOC Children’s Cancer Institute and the Director of the Young Adult Cancer Program at the University of California Irvine Chao Family Comprehensive Cancer Center. He is also Editor-in-Chief of The Journal of Adolescent & Young Adult Oncology. National Young Adult Cancer Awareness Week is April 3-9, 2012.

VIDEO TRANSCRIPT:

Matthew Zachary, Founder & CEO, I’m Too Young For This! Cancer Foundation

I think never before has there been an amazing opportunity to empower, organize and activate the next generation of cancer survivors to take charge of the establishment, to socially change the way people think about cancer and fundamentally alter the outcomes of the way that you experience survivorship.  The young adult movement is powerful, it is energized, it is invigorated; it is a force to be reckoned with.

Leonard S. Sender, MD, Editor-in-Chief, Journal of Adolescent & Young Adult Oncology

A young adult can get cancer.  Young people do get cancer.  In fact, cancer is the number one disease killer of young people under the age of forty.  There are more people dying under the age of forty than any other disease, and often the top second, third, forth, and fifth can be added together and still numerically don’t make up how many young adults are dying of cancer.  So, young people get cancer.  How do we get an awareness to young people themselves that says, ‘take yourself seriously, get to empower yourself by knowing your body?  Going out there, and finding out when you’ve got symptoms take them seriously, find a physician who can answer the question, do you know how to treat a young adult with cancer.’

Michelle Whitlock, Director, Mid-South Chapter, Natl. Cervical Cancer Coalition

I think that a lot of the times being a young adult that we don’t, we trust that the doctor is educated, they’re the ones to know, and aren’t as comfortable challenging.  And I think it’s really important to recognize that a doctor is a tool- they are not the end-all and that you really have to have a voice and do your own research and think about what kind of life you want to have and ask the pertinent questions for you.

Joe Schneider, LIVESTRONG Army Chicago

We have to get away from not asking for second opinions and third opinions and I think it’s really important that if you hear something that you don’t like, to actually stand up for yourself and ask for the second and a third opinion.

Leonard S. Sender, MD, Editor-in-Chief, Journal of Adolescent & Young Adult Oncology

The other thing is about late diagnosis.  A lot of stage-4 disease, even in older adult medicine doesn’t have good outcomes.  It’s late because we don’t have colonoscopies under the age of fifty.  And we don’t have prostate cancer so they’re not doing a PSA.  So our young people getting cancers don’t have an early detection method except symptoms, so take the symptoms seriously.  Now, the one symptom is persistence.  If you question a whole bunch of young adults and look at them you’ll find that they did go to the doctor; they were dismissed.

Elissa Thorner-Bantug, MHS, Susan G. Komen Young Women’s National Advisory Board

I was scheduled for a sonogram.  I went in for a sonogram.  The tech took one look at my age and turned the machine on, then turned it right back off again and said, ‘there’s nothing there.’  This went on for another year or two years.  Two years had gone by since I found a lump.  I went back to the gynecologist with other issues, the lump was much bigger, it was bothering me and I said ‘I’m going for a mammogram, either write the prescription or I’m going somewhere else. I’m willing to pay for it.’  I called five mammography centers, none of which would do a mammogram on me, even with good health insurance through the federal government.  It took six months from the time I had the scrip to get diagnosed.

FACTS

  •  More than 70,000 young adults in their teens through their late 30’s are diagnosed with cancer every year in the United States.  One every eight minutes.
  •  Cancer is the leading disease killer of people 20 to 39 years of age behind homicide and suicide.
  •  Over the last 20 years, overall survival rates in young adults with cancer have reached a plateau.

Leonard S. Sender, MD, Editor-in-Chief, Journal of Adolescent & Young Adult Oncology

The survival rates for young adults with cancer have plateaued over the last 20 years.  So when we look at that in terms of the diseases… what we do is we do aggregations of disease, so some diseases actually have improved and some we’ve had absolutely no improvement.

What are the consequences of the cure? What happened to their survivorship?  What does it mean to be a survivor of cancer?  And there are two groups that we deal with- one is the aging in, if you will, or the aging out of the pediatric model of the childhood cancer survivor.  They’ve finished, they’re growing up- but they’re coming into adulthood with cardiac disease, kidney disease, anything that they come with, many diseases, have left you with a different consequence.  The young adult cancer movement wants to take care of those patients too.  We understand them, we want to take care of them.  The young adult themselves who are diagnosed with cancer, we need to think about their survivorship.  What does it mean to them?

So, if survivorship, according to the National Cancer Institute, starts the day you’re diagnosed that means that you need to think about what it is like if the person in front of you is going to be a survivor.  If that person is going to be a survivor, what am I doing to maximize the quality of their life? We call it meaningful survivorship.

Danielle Tindle, Queensland Adolescent & Young Adult Cancer Services

One of the most difficult things for young adults with cancer is the lack of psychosocial support and peer networking and peer support that is out there.  I think that they are a really misunderstood community of people and there are a lot of stigmas attached to having cancer.  So it’s really difficult to get back into life after you’ve had cancer.

Leonard S. Sender, MD, Editor-in-Chief, Journal of Adolescent & Young Adult Oncology

Everyone accepts that if someone was involved in seeing a terrorist bomb go off that would be the most terrible thing, right?  If you were around a terrorist bomb and three people died, you would put those people in psychotherapy, you would accept that they would be derailed.  Young people sit around hospitals watching other young people die of cancer in waiting rooms and no one talks to them about that.

Heidi Adams, Founder, Planet Cancer & Sr. Dir. of Engagement, LIVESTRONG

For the young adult going through the experience, the greatest challenge, I believe, is isolation.  And going through the experience just like I had and feeling totally alone.  I met four other young adults the whole time I was in treatment, and three of them died.  So, it is lonely to start with and you can’t find other people who share that experience with you who… there’s just nothing like talking to someone else who has been in the same boat.

Leonard S. Sender, MD, Editor-in-Chief, Journal of Adolescent & Young Adult Oncology

When you think about having cancer at that age; what does it mean when you’re derailed?  What does it mean?  How do you get back up on your feet? Well, all the young adults I’ve talked to are not about pity, they’re not about pity; they just want a helping hand up.  They can get back up and we need to help them.  We need to give a helping hand.  Well, there are not enough resources for them.  They can’t find resources.  All the charities are all about older adults and all about the young kids.  So, how do we help?  How do we give them psychosocial support?  How do we help them?

Doug Ulman, President & CEO, LIVESTRONG

I remember calling organizations and asking for support and asking for resources and often times you’d get answers back that just didn’t seem right.  One organization that I called said, ‘well people your age don’t get cancer.’  And so all along in the experience I had this thought in the back of my mind that something was strange about that and there needed to be more programs and services and support for specifically young adults with cancer.

Joe Schneider, LIVESTRONG Army Chicago

Lance Armstrong Foundation is really unique in that they try to bring all these organizations together.  I’ve been involved with many non-profits and it’s, it can kind of be cut-throat at times because everybody is trying to fundraise and obviously, we all want the same thing; we want to find a cure for cancer, but what really drew me to the Lance Armstrong Foundation was the whole unity and bringing all these amazing organizations together to fight cancer.

Maimah Karmo, CEO & President, Tigerlily Foundation

Through many different paths I found the LAFYA and when I found it I thought, ‘[large gasp] my god, where were you on February 28th, ’06 at 4:45pm?  Where were you guys?  I would have called you.’  And now, because they are bringing people together because we’re all making a difference in our pockets of the world, what’s so important is to make a united, consistent forefront so it brings me and Jonny Imerman with Imerman’s Angels and Matt Zachary with I2Y and all the other people; it brings them all together so that everyone can bring all those resources together in one place and then it gives us consolidated and streamlined, here’s what to do when you go back to your home.

Matthew Zachary, Founder & CEO, I’m Too Young For This! Cancer Foundation

And I think people deal with their experiences very differently. There are some people that want to jump right in right away, there are some people that need to cry in the shower for a little while before they are able to reconcile their new normal.  I would say that they should at least be given the option to know that they’re not alone.  Here are all these resources that you’re not going to know about because they’re very hard to find but they’re extremely important and you have an opportunity… again, like Doug Ulman would say, what Lance said, we’re the lucky ones.  You’re a lucky one.  You have the opportunity to live an incredible life as a survivor and embrace whatever that is going to look like for you.  Based on these utilities and these tools that we are trying to promote, that otherwise would not be heard about.

Doug Ulman, President & CEO, LIVESTRONG

I think cancer, especially at a young age, it teaches you what is really important.  And it is one of those intangible things that you cannot teach someone else until they have experienced it either with themselves or with their family.  And so, I think the perspective is just that you know what is important. You know that tomorrow is not a given and you try to take advantage of today.  And I think for people… you know, I was diagnosed at 19, most 19-year olds don’t have that perspective.  And so I’ve always felt that I had this maturation process a little bit earlier in life.  And as negative as a cancer diagnosis is, I’ve always felt fortunate that that took place.

Maimah Karmo, CEO & President, Tigerlily Foundation

When people call me and tell me they have cancer, whether it is breast cancer or any other cancer, the first thing I tell them is that you’re not alone, you know.  You have gotten this diagnosis and you can use it to create an amazing change in your life.  Cancer is a catalyst.

TOP 5 Cancers 15-19 Years

  • Testicular
  • Leukemia
  • Hodgkin’s lymphoma
  • Brain & other nervous system
  • Thyroid

 TOP 5 Cancers 20-24 Years

  • Testicular
  • Thyroid
  • Hodgkin’s lymphoma
  • Melanoma
  • Leukemia

TOP 5 Cancers 25-29 Years

  • Testicular
  • Thyroid
  • Melanoma
  • Cervical
  • Hodgkin’s lymphoma

TOP 5 Cancers 30-34 Years

  • Testicular
  • Breast
  • Thyroid
  • Cervical
  • Melanoma

TOP 5 Cancers 35-39 Years

  • Breast
  • Thyroid
  • Cervical
  • Melanoma
  • Testicular

Young adults DO get cancer and YOU can take matters into your own hands!

YOU can catch testicular, melanoma, and breast cancer at its earliest stages by knowing your body and observing changes to it.

YOU can prevent melanoma by practicing sun safety, which includes avoiding tanning booths.

YOU can catch thyroid and cervical cancer at its earliest stages by getting regular annual exams by a doctor.

YOU can prevent cervical cancer by getting your HPV vaccine.

YOU do not need to wait for cancer science to catch up to change cancer in your adults.

YOU are a key and integral part of improving young adult cancer – its diagnosis, treatment and survival!

END OF VIDEO

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