An Important AYA Cancer Twitter Chat, Part 1

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We were honored to recently be a part of a significant Twitter chat hosted by Mashable Lifestyle (@mashlifestyle) and writer Iris Mansour (@Irisist). We combed through hundreds of amazing tweets to give you a succinct taste of this great and widespread conversation. In fact there was so much amazing content we had to split it up into two blogs, so tune in tomorrow for Part 2!

Q1: @Irisist, while researching your story, what were some mind-blowing stats about cancer and millennials that you discovered?

In 30 years the level of children and older adults surviving cancer is up. But there’s been very little improvement in AYA. Then there’s the bankruptcy insanity, which we’ll get to later but basically uninsured YAs are twice as likely to develop late stage cancer and be bankrupted by care. – Iris Mansour @Irisist

Least represented age group in clinical trials – Heidi Adams @heidisa

Note to #Millennials: participating in #clinicaltrials is an instrumental step to finding a cure for cancer – ACRO @ACROhealth

@Irisist @mashlifestyle Which is why our voice needs to be heard! – twistoutcancer @twistoutcancer

Lack of progress in 5 year survival rates for #AYAs compared to pediatric and older #cancer patients – Lurie Cancer Center @LurieCancer

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Q2: Cancer can affect anyone at any age. How is the experience different for millennials?

Your social life/career (former priorities) suddenly have to take a back seat, as you sit in Dr. offices w/ people 2x your age – LIVESTRONG @livestrong

Young adulthood means getting a start on life and beginning to reach personal/professional milestones. Cancer derails that – Stupid Cancer @StupidCancer

Millennials lack the savings, job history and overall safety net of other age groups, so the $ impact is uniquely overwhelming – The SAMFund @TheSAMFund

Not many hospitals offer young adult-specific treatment, so you’re being treated with people twice your age or half your age – Stupid Cancer @StupidCancer

I have heard that most millennials feel out of touch with their fellow patients because of the huge age gap – Elena Atkinson @AtkinsonElena

Many millennials are not financially prepared: limited health and life insurance, and FMLA (Family and Medical Leave Act) is not sufficient enough to help – Brenda Sieglitz @BrendaLeeFree

It’s the time of life when you’re figuring out who you are; cancer disrupts that process, changing you irrevocably – Heidi Adams @heidisa

Our biggest issue at first was dealing with fertility preservation. Thx @livestrong for help there – Scott Mann @spiralinspired

Imagine adding medical debt to student debt when ur starting ur career. Then imagine losing ur job to the demands of #cancer – Iris Mansour @Irisist

cmYou don’t usually stare your death in the face as a millennial. I’ve heard: “I am a 75-yr-old in a 22-yr-old body”  – Heidi Adams @heidisa

Connections – younger people don’t have as many connections, so we’re limited in the knowledge of how to pursue treatment – Brenda Sieglitz @BrendaLeeFree

#isolation #loneliness The inability to relate to family and friends – twistoutcancer @twistoutcancer

RT+1000 @StupidCancerCEO It’s a time in your life when you’re supposed to be taking 10 steps forward each day and not 20 steps back – CureLauncher @cureLauncher

And expensive! RT @boltes The long term impact on the sexual self and fertility are much different than older counterparts – Allie Morse @allieemorse

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Q3: The biology of millennials who are diagnosed with cancer may be different. Why?

Dr. Smith: Still researching, e.g., exploring links to gene mutations that contribute to a unique biology of some AYA cancers – National Cancer Inst @theNCI

Young women are not told about the effects that menopause can have on their body, beyond “hot flashes” – Sage Bolte @boltes

There’s no one cause of young adult cancer. Genetics or exposure to toxins may be to blame, but it’s hard to know for sure – Stupid Cancer @StupidCancer

Cancer cause is alway both genetic and environmental.  Genetic > influence in younger patients. Environmental > in older – Otis Brawley @OtisBrawley

Hasn’t been researched thoroughly enough but tests suggest it may have distinct bio and genetic features. Hence the need to test  patients as their own sample, not lumped in with older adults and children – Iris Mansour @Irisist

Dr. Smith: AYAs still developing, so unique gene expression & hormonal profiles could impact cancer development, progression – National Cancer Inst @theNCI

In some cases, you can know if you’re genetically predisposed to certain cancer. But most of us have no idea if we’re at risk – Stupid Cancer @StupidCancer

From our archives, a story about the biology of cancers in adolescents and young adults: http://1.usa.gov/1jDKYfU  – National Cancer Inst @theNCI
 – Favorited by Doug Ulman @livestrongceo

I’ve become a cancer hypochondriac since completing treatment. Every symptom scares my wife and me. PTSD is a big part of my life – Jake Black @jakeboyslim

Great question – we need to build an evidence base to get to solid answers.  #workingonthat @CriticalMass – Heidi Adams @heidisa

Cancer experience in bodies / minds still developing is a very different experience than elderly patients – Chris Brewer @livestrongcb

Also the possibility of secondary cancer from your initial  treatment later in life! #MindBlowing – LIVESTRONG @livestrong

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Q4: What are some of the issues millennials face financially, in terms of care, insurance & bankruptcy when battling cancer?

Singles w/ cancer often lose job and insurance. Have difficulty getting care. Especially a prob for YA singles – Otis Brawley @OtisBrawley

Have to take time off work, careers stall, additional debt on top of education expenses, (pre-Affordable Care Act) lack of insurance – LIVESTRONG @livestrong

#Cancer patients are twice as likely to go bankrupt… – Iris Mansour @Irisist

Increasing premiums, preexisting condition challenges, rising costs of treatment/chemo are a few concerns – Heidi Adams @heidisa

Most young adults are still establishing themselves financially. Many can’t afford costly treatments or to take time off work – Stupid Cancer @StupidCancer

Losing job is a big risk for AYAs. First jobs out of high school or college may not come with health insurance benefits – Brad Zebrack @BradZebrack

New careers, financial instability, poorer insurance coverage, fear of moving jobs out of fear of losing benefits – Sage Bolte @boltes

Prior to the Affordable Care Act, cancer could be seen as a pre-existing condition and insurance coverage could be denied – Stupid Cancer @StupidCancer

As a new husband and father at diagnosis, it was the financial side, still a mountain 5 yrs later, that was the biggest burden – Jake Black @jakeboyslim

We lost our apartment, sold our cars, had to give up our jobs. We don’t have enough assets to pay for cancer – Brenda Sieglitz @BrendaLeeFree

Financial “Domino Effect”: Cancer may prevent #AYAs from finishing education, or summer internship that might lead to first job – Lurie Cancer Center @LurieCancer

RT @TheSAMFund: Millennials lack savings, job history & overall safety net of other ages. $ impact is uniquely overwhelming – Lee Adams @ArtMetalMan

@mashlifestyle It can sidetrack your career. Prevent you from moving jobs out of fear that the cancer may come back – Eileen O’Donnell @EileenODonnell3

YAs have $0 left after cancer & credit is shot. #SAMFundWebinar w/ @TriageCancer on rebuilding credit: https://www.youtube.com/watchv=WbbaX8jcpjw&list=TLPgiX8AuVnrlDrBh9hyWxMIbxTrA4yjvc  – The SAMFund @TheSAMFund

We paid treatment costs with credit cards. Only option. Still trying to payoff. Crowdfunding has helped a bit, but long way to go – Jake Black @jakeboyslim

RT @livestrongcb: Life is hard enough on young couples $-wise, adding cancer costs on top adds huge stress to relationships – Lee Adams @ArtMetalMan

We do a lot of free financial counseling for survivors via great partnership with @PatientAdvocFou #Navigation – LIVESTRONG @livestrong

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