An Important AYA Cancer Twitter Chat, Part 2


We were honored to 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. Here’s round 1 from before – now on to Round 2!

Q5: What are some of the emotional difficulties millennials face when battling cancer?

The sense of isolation among  patients really stood out during my reporting – Iris Mansour @Irisist

@mashlifestyle where to begin?? Fear of recurrence is huge. Feeling socially isolated & completely disconnected – True North Treks @TrueNorthTreks

Fear of recurrence. 20s & 30s usually time of planning for the future. Planning phase feels futile if fear is omnipresent – Lurie Cancer Center @LurieCancer

Depression, anxiety, PTSD, loneliness, and a multitude of others – Mallory @TheRealMalfoy85

Dr. Smith: Millenials can have trouble getting things done due to emotional problems like feeling anxious or depressed – National Cancer Inst @theNCI

Body image is a big one. A lot of millennials are still dating, and scars, hair loss, etc. can take huge emotional tolls – Stupid Cancer @StupidCancer

You don?t just fight emotions from having cancer, you also fight emotions brought on by the treatments themselves – Chris Brewer @livestrongcb

So many body image issues, hair loss/scars/burns, at time when you want to look/feel your best on @Match – LIVESTRONG @livestrong

@mashable This is so intense. Thank you so much for doing this. The general public needs to know how  is different #cancersucks – Helper T-Sales @HelperTSales

Being surrounded by so many loved ones,yet feel so isolated. No one my age in hospital – Ethan Zohn @EthanZohn

Few our age understand/relate. We become alienated. Plus, long term dreams/goals can be destroyed. PTSD develops – Brenda Sieglitz @BrendaLeeFree

Most of my friends still felt “invincible” & were planning for future while I was worried I would die before 30 – Michelle Lamont @mishhlaa

YAs with cancer are anomalies in hospital wards and waiting rooms – Iris Mansour @Irisist

Dr. Smith: There are major influences on day-to-day life, especially being involved in social activities – National Cancer Inst @theNCI

It’s also hard to see friends moving forward in their lives, jobs, and relationships while you’re being halted by treatment – Stupid Cancer @StupidCancer

Treatments and Hospitals can bring on mental disorders.  ICU Psychosis anyone? – Brenda Sieglitz @BrendaLeeFree

Many #AYAs feel guilt?concerned about #cancer’s toll on family, holding back partners, starting a new family – Lurie Cancer Center @LurieCancer

Feeling like nobody “gets it.” Peers are concerned w/grades, job interviews, dates, not medical bills, hair loss & sickness – The SAMFund @TheSAMFund

Can?t forget about caregiver emotions, too. Huge stresses on people never expecting to jump in the cancer pool – LIVESTRONG @livestrong

Dating can be scary. Sex can be scary. Sex might be different. View of self changed – Sage Bolte @boltes

The looks my husband received from the ostomy bag on his neck and his feeding tube backpack. Ugh – Brenda Sieglitz @BrendaLeeFree

The overstated benefits of positivity made me anxious – every time I felt depressed, I worried that I was killing myself – Allie Morse @allieemorse

Fear of discussing cancer diagnosis, and potential fertility issues, with a new partner – Oncofertility @oncofertility

I was my husband’s caregiver, after he died I went through intense PTSD therapy. Caregiving support is nil when young  – Brenda Sieglitz @BrendaLeeFree

We need to be upfront about the very real need for emotional / mental health help for AYA cancer patients & caregivers #Stigma – Chris Brewer @livestrongcb


Q6: For millennials, what is life like after cancer?

Finding a “new normal” after a cancer diagnosis – Krissy Kraczkowsky @KrisKracz

Fear, of relapse, of being a burden, of being left behind, of uncertainty, of acceptance, of other peoples responses – Katherine @thekathydiaries

I felt like it gutted my identity, and took over everything. At the end of treatment, I felt lost – Emily Helck @emily_priscilla

Friends who can’t handle it disappear.  Hard to ask for help – Jean Rowe @JeanRowe1

Making friends in cancer community to fight the feeling of isolation & then having to mourn the loss of some of those friends – Emily Drake @EK_Drake

Isolation is compounded by the fact that YAs have no medical “home”; fragmented across pede/adult & different disease groups –  Heidi Adams @heidisa

Dr. Smith: Watching out for long term effects or side effects from treatment over time is really important – National Cancer Inst @theNCI

We often hear that cancer is an inspiration for career change among many YAs – Cancer and Careers @CancerAndCareer

Difficult. We laugh at the idea of a “new normal” – life in your 20s and 30s is anything but “normal” – Stupid Cancer @StupidCancer

Life is scary & confusing & exciting at the same time.I want to say “yes” to everything – Ethan Zohn @EthanZohn

We literally say @LIVESTRONG “cancer may leave your body, but it never leaves your life” – Chris Brewer @livestrongcb

Anxiety/fear of recurrence, liberation/clarity on how to spend the rest of your life and reenter the work force – LIVESTRONG @livestrong

There is a lot of hope after #cancer. @FirstDescents taught me how to trust my body again. But there’s also fear… – Allie Morse @allieemorse

The moment of ?you?re done? is the 2nd scariest of all. Like being thrown off a cliff w/o a parachute. Reach out for support – Heidi Adams @heidisa

Can depend on what you come into cancer with and what you are willing to allow yourself redefine. Will be different – Sage Bolte @boltes

RT @BradZebrack: #Uncertainty: about future, about health. Wondering if every cough or cold means cancer is coming back – Lee Adams @ArtMetalMan

Sometimes it feels amazing because you beat it and sometimes it feels #heavy because it happened at all – Katherine @thekathydiaries

Coming to terms with their sexuality is another big  concern – Iris Mansour @Irisist

Wondering whether anyone will hire you, knowing you have a cancer history. Wondering if you need to tell them in the 1st place. – The SAMFund @TheSAMFund

I find myself saving for a relapse that hopefully never comes, not a house, marriage, vacations, or retirement – Allie Morse @allieemorse

I have to appear strong so it doesn’t feel like adding more burden to family and friends – Tricia Sarmiento @triciasarmiento

kcalI am a different person now than I was before cancer, but I wholeheartedly believe that I am a better one – Katherine @thekathydiaries

For me there was a huge initial bow wave of life intensity that drove me to my ?new normal? years later #LifeIsGood – Chris Brewer @livestrongcb

One of the weird things post-C I felt was irrelevance. I had a big support team during treatment. Once it was over, no one – Jake Black @jakeboyslim

Life after cancer comes with a sort of fearlessness and clarity, there are some things in life that you just can’t control – Katherine @thekathydiaries

You learn to find a balance between being realistic about what may come vs hoping for a bright, beautiful future – Heather Hall Gorski @heatherhall3


Q7: What support systems are available to millennials in the cancer community?

Wow its like talking to new friends that gets the “experience” but for me this still on going not after –  Meita @mommiedhanis

@StupidCancer is a great resource! @livestrong offers free navigation services: financial, emotional, legal, trials matching – LIVESTRONG @livestrong

Here’s some information about coping and support for young people living with cancer: – National Cancer Inst @theNCI

Cancer friends are the world’s biggest silver lining. They are wonderful, shiny, quirky rockstars – Allie Morse @allieemorse

Bookmark this page of organizations and resources that help young people living with cancer – National Cancer Inst @theNCI

@StupidCancerCEO @ImermanAngels are amazing organizations helping young adults facing cancer – Brenda Sieglitz @BrendaLeeFree

We are an online resource and community for young adults, their families and healthcare providers – CancerFightClub @CancerFightClub

Financial assistance, free Webinars, lots of other resources available at –  Grant app goes live in June – The SAMFund @TheSAMFund

We?re very proud of our friends @heycriticalmass – doing great collaborative work for AYA?s! cc: @heidisa #LIVESTRONG – Chris Brewer @livestrongcb

We offer resources and programs to support YAs in navigating the legal and practical issues around work and cancer – Cancer and Careers @CancerAndCareer

YAs want to feel empowered & supported – @ulmancancerfnd programs like Cancer to 5K empower survivors – Laura Scruggs @LauraDeeScruggs

So many incredible orgs. I use them all & I’m still alive! They work: @FIRSTDESCENTS @ImermanAngels @LIVESTRONG @twistoutcancer – Ethan Zohn @EthanZohn

And our @OMGSummit brings together hundreds of young adults! Check out  – Stupid Cancer @StupidCancer

The @UlmanCancerFnd offers patient navigation services in hospitals to specifically support YAs in the MD/DC area – Krissy Kraczkowsky @KrisKracz

Having goosebumps reading some of the answers for @mashlifestyle’s . F*ck cancer –  Sophie C. Laplante @SophieCLaplante


Q8: For millennials (or anyone) battling cancer right now, what words of advice can you share?

rnControl what you can and embrace what you cannot. Surround yourself w/support & do what works best for YOU – Heidi Adams @heidisa

Life can be, and generally is, better! You bring real value to your career & life due to hard fought knowledge and skills – LIVESTRONG @livestrong

Dr. Smith: Find the cancer center or oncologist who is expert in your type of cancer. Be a squeaky wheel to get your needs met – National Cancer Inst @theNCI

Dr. Smith: Reach out to other young adults at the many organizations represented here. You are not alone – National Cancer Inst @theNCI

You’re not alone! There are others going through what you’re going through – try to find and connect with them – Stupid Cancer @StupidCancer

Knowledge is power, but more importantly safe and effective knowledge. Know all your options = no big surprises – Chris Brewer @livestrongcb

My advice is to keep talking. Friend, therapist, message board pal, whoever. Don’t try to do it alone – Emily Helck @emily_priscilla

You are not a burden. Let yourself lean on friends & family. You help them & yourself by allowing them to offer support – Lurie Cancer Center @LurieCancer

Get feisty. You are in control of your own destiny, be pushy! Try something new. And mope sometimes – you’re allowed! – Allie Morse @allieemorse

Get rid of toxic things (people, relationships, etc). Surround w people who can be “with” you, support you, etc – Sage Bolte @boltes

Don’t max out your credit cards to pay down medical bills. There are better ways! #SAMFundWebinar:  – The SAMFund @TheSAMFund

BABY STEPS! No need to start running before walking. Take things one step at a time and know not to push yourself too hard – TCA Matthew @TCAMatthew

Please keep telling your story – the world needs to know what’s happening to AYAs!  #Listenup – True North Treks @TrueNorthTreks

Take caution when reading blogs, information on the internet, etc. Make sure it?s from a credible source. YOU are NOT A STATISTIC – Sage Bolte @boltes

Get second and third opinions, reach out to organizations specific to your cancer, belief in yourself and your ability to FIGHT – Brenda Sieglitz @BrendaLeeFree

Know that sharing your diagnosis at work is a personal choice, and understand your legal rights in the workplace – Cancer and Careers @CancerAndCareer

Look for the little things to make you smile. Cancer tries to take control of life so do little things to take it back – Heather Hall Gorski @heatherhall3

Listen to yourself and your needs. It’s not being selfish, it’s taking care of your body and mind – Heather Hall Gorski @heatherhall3


Huge thanks to @mashlifestyle and @Irisist for hosting us at  Twitter chat. So much great knowledge shared! Thanks everyone! – LIVESTRONG @livestrong

Thank you all for participating in the chat and in the interviews. Really, massively appreciate it – Iris Mansour @Irisist

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