We had thirty participants and over 1.2 million impressions. You may find the complete analytics here.
After wishing everyone a Happy New Year and giving everyone a chance to introduce themselves we began discussing our topic questions. Some responses to those questions are listed below. To read all the responses, please read our transcript on the Symplur website.
T1: What are some unique aspects of being diagnosed with cancer as a young adult? What are some helpful resources?
- starting families or relationships, isolation from peers who don't understand, lack of financial stability pre-diagnosis
- fertility concerns, missing out on typical young adult milestones while friends have babies and travel and get promotions
#ayacsm is one of the loneliest things- SEX!!! Seriously, my doctors never talk about it (I have to bring it up) but it's a huge part of my wellness.
- @FirstDescents has been my very best resource which has connected me to a community of YA with cancer. So much fun too!
T2: How much health info do you share w/ family, friends, peers at school/work? What are some of the "labels" you encounter?
- I didn't share hardly anything at all the first 2 times I had cancer but the 3rd and 4th I just completely lost my filter
- I overshare, but that's partly bc I'm a
#patientadvocate as my day job. I also just overshare. - Meeting new people over the years I've avoided telling ppl my history bc it seems like a burden on them
- When I was in college, I didn't tell anyone. I had all my surgeries & radiation during vacations.
T3a: In your experience, do providers discuss and provide resources related to surgical menopause? What's important to know?
- OMG hot flashes
- Treating menopause in cancer patients is complex and many providers need education and guidance
- It seems like the focus is on survival - good thing! - but some quality of life aspects may not always get covered
- NO! Been in surgical meno for a yr. Most of the research about meno has bn done on women in natural meno.
- my HCPs didn't. For women, it costs $$$ & time u might not have.
- Options for fertility sparing are important to discuss as well - we recommend our pts meet with an Oncofertility specialist
- We see young women who had no idea that their surgery could put them into menopause. It can be overlooked during counseling
- Some of us don't really get counseling on that if we had ER diagnosis and surgery
T4: What is helpful in dealing with the uncertainty cancer brings while still planning ahead?
- Ask for help!
- If you can do something about it, do it. If you can't, at least make the story funny
- Look for an organization for AYA like : @StupidCancer @Hope4YAWC @LacunaLoft
- And because our young pops are so app savvy, apps like @MyHealthTeams can be very useful
- Focusing on other parts of life helps but harder as I age and wonder about long term affects
T5: What are some tips for creating balance among the priorities of health, personal life and career/education?
- I remind my clients all the time we have limited resources: time, energy, finances, etc. It is okay to prioritize resources.
- Don't let anyone define priority for you. If doing nothing gives you joy & is a priority for YOU, then DO THAT
- No advice really, but taking things one step at a time helps
- I try my best to give myself permission to have good days and bad days
T6: What are some of the roadblocks to working after a cancer diagnosis?
- Pain, MD appointments, fatigue. Every new job, I ask for a nap room. I've gotta it twice!
- Retaining your health insurance
#ACA should be guaranteed for#cancer patients - Work can be tricky. In a perfect world, you should be able to state needs and seek accommodation. Not always safe
We ended our chat as we always do by asking participants to share their TIL (Today I Learned).
- Some other who get it who I'm excited to follow and learn more about! Thanks for sharing
- TIL from you (who are so kind to share your time, experiences, advice) what life can be like as a young adult w/ cancer-TY!❤
- TIL Two Twitter communities can share resources and support one another #strongertogether
Scroll down for Resources shared during the chat.
We invite you to join us next month, Wednesday, February 8, 2017 at 9pm ET for our chat on HPV and Cervical Cancer.
Remember that patients and caregivers are invited to continue our #gyncsm discussions on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm
See you next month!
Dee
#gyncsm Co-founder
RESOURCES:
Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age https://seer.cancer.gov/archive/publications/aya/aya_mono_complete.pdf
Dana Farber Young Adult program (@DanaFarberYAP) http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Patient-and-Family-Support/Young-Adult-Program.aspx
Lacuna Loft @LacunaLoft https://lacunaloft.org/
Stupid Cancer @StupidCancer http://stupidcancer.org/
Hope for Young Adults with Cancer
http://www.hope4yawc.org/ @Hope4YAWC
Cancer and Careers @CancerAndCareer
FORCE's @FacingOurRisk eXamining the Relevance of Articles for Young Survivors (XRAYS) program http://www.facingourrisk.org/XRAYS/digest/winter-2016.php
Facebook: Ovarian Cancer Young Survivors Group
https://www.facebook.com/groups/675225689278954/?ref=br_tf
Riding the Cancer Roller Coaster: Survival Guide for Teens and Young Adults
http://www.teen-cancer.com/
Chemo between classes @ChemobtwClasses
Cancer.net @CancerDotNet List of resources for YA
http://www.cancer.net/navigating-cancer-care/young-adults/resources-young-adults
Video: NOCC's Ovarian Cancer Education Series - Living with Uncertainty
https://t.co/fH8WLciMF6
