Wednesday, January 11, 2017

Young Adults: Life Following a Cancer Diagnosis Joint #gyncsm #mayacc chat January 11,2017

We were so happy to welcome the members of the Metastatic and Young Adult Cancer Community (#mayacc) to our chat on Young Adults: Life Following a Cancer Diagnosis. Thank you Emily Drake (@EK_Drake) for your input and support of the chat.

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
  • 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.
  • 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 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. 
T3b: In your experience, do providers discuss and provide resources related to fertility preservation? What's important to know?
  • 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 :
  • And because our young pops are so app savvy, apps like 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 should be guaranteed for 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

Friday, January 6, 2017

Jan 11,2017 Joint #gyncsm - #mayacc chat Young Adults: Life Following a Cancer Diagnosis


Although not as common, adolescent and young adult women are diagnosed with gynecologic cancers. Ten percent of the cancers diagnosed in young adults (15-29) are cancers of the female reproductive organs. "Nearly all genital system tumors are carcinomas of the cervix, germ cell tumors of the ovary, and carcinomas of the ovary." (Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age) Of the ~14 million people in the United States living with cancer, one in five is under the age of 40. SEER reports that 72,000 adolescents and young adults are diagnosed with cancer each year.

We are pleased to have #mayacc (Metastatic and Advanced Young Adult Cancer Community) join us for our January 11, 2017 9pmET #gyncsm chat on Young Adults: Life Following a Cancer Diagnosis.


Below are the topic questions that will guide our discussion.

T1: What are some unique aspects of being diagnosed with cancer as a young adult? What are some helpful resources?

T2: How much health info do you share w/ family, friends, peers at school/work? What are some of the "labels" you encounter?

T3a: In your experience, do providers discuss and provide resources related to surgical menopause? What's important to know?
T3b: In your experience, do providers discuss and provide resources related to fertility preservation? What's important to know?

T4: What is helpful in dealing with the uncertainty cancer brings while still planning ahead?

T5: What are some tips for creating balance among the priorities of health, personal life and career/education?

T6: What are some of the roadblocks to working after a cancer diagnosis? 

You can learn more about young adult cancers from these two resources and we hope you join the chat to learn more from individuals and groups with a focus on adolescent and young adult cancer.
    If you want to learn more about how to participate in tweet chats you can read this blog post. We will use both #gyncsm and #mayacc hashtags during this month's tweet chat.

    The #mayacc chats are regularly held on 2nd Tuesdays at 9pmET.

    We look forward to having you join us for the joint #gyncsm #mayacc chat on Wednesday, January 11th at 9pmET.

    Dee
    Co-Founder #gyncsm

    Tuesday, December 20, 2016

    Wednesday, December 14, 2016

    Getting Involved in Research Advocacy - Dec 14th Chat

    We ended this year of chats by discussing Research Advocacy. We were delighted to have Elda Railey (@RANAdvocate), Research Advocacy Network, join us as our guest. The Research Advocacy Network's mission is "to develop a network of advocates and researchers who influence cancer research-from initial concept to patient care delivery-through collaboration, education and mutual support." Among our forty-three participants were a number of cancer research advocates. You may read the transcript here and additional analytics may be found here.

    Below is a sampling of the responses we received to our five topic questions.

    T1: Beyond enrolling in clinical trials, what are some of the ways people can get involved with cancer research? 
    RAN Slide of Opportunities for Research Advocates



    T2: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?







    T3: What does being a "research advocate" involve? How has this role changed as overall patient influence has grown?








    T4: How can people start to get involved with grant review, clinical trials design, research dissemination, and/or conferences?






    T5: What are some tips when it comes to reaching out to Congress about cancer research? What has shown to be effective?





    Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at https://www.smartpatients.com/gyncsm.


    The next #gyncsm chat will be a joint chat with #mayacc on Wednesday, January 11 at 9pmET. Our topic will be "Young Adults: Life Following a Cancer Diagnosis."

    Happy Holidays!
    Happy New Year!


    Dee
    @gyncsm Co-Founder



    RESOURCES

    Research Advocacy Network : General Resources for research advocates
    http://researchadvocacy.org/general-resources
    http://researchadvocacy.org/advocate-institute

    What is a Cancer Research Advocate via @CancerDotNet http://www.cancer.net/blog/2016-12/what-cancer-research-advocate

    Resource | Being A Cancer Advocate via @CancerDotNet http://www.cancer.net/research-and-advocacy/patient-advocates/being-cancer-advocate 

    @theNCI has a great Research Advocacy 101 video
    https://www.cancer.gov/about-nci/organization/oar/research-advocacy/research-advocacy-101

    8 Tips on Gaining Access to Journal Articles via @medivizor https://medivizor.com/blog/2014/12/18/8-tips-gaining-access-to-journal-articles/

    scientist - survivor program offered by @AACR http://www.aacr.org/AdvocacyPolicy/SurvivorPatientAdvocacy/Pages/scientistharr;survivor-program___403E94.aspx#.WD83COErKi5

    OCRFA Advocate Leader Program https://ocrfa.org/advocacy/advocate-leaders/
    OCRFA Advocacy Action Alerts https://ocrfa.org/advocacy/how-you-can-help/

    @NOCC_National calendar has events nationwide: https://t.co/wMkCaD09mb

    PCORI peer reviewer http://www.sciencesupport.org/PCORIpeer/start/index.cfm
    PCORI additional info:
    http://www.pcori.org/research-results/research-dissemination-and-implementation
    http://www.pcori.org/blog/how-cancer-survivors-make-difference-pcori

    Sarcoma Clinical Trials http://www.curesarcoma.org/patient-resources/sarcoma-clinical-trials/

    @GlobalGenes toolkits: https://globalgenes.org/toolkits/from-molecules-to-medicines-how-patients-can-share-their-voices-throughout-the-drug-development-process/introduction/
    and https://globalgenes.org/toolkits/bringing-rare-disease-to-capitol-hill-advocating-for-your-cause/background-information/

    Genetic Alliance Advocacy http://www.geneticalliance.org/advocacy

    Welcome your new research partner: Patients https://blogs.biomedcentral.com/on-medicine/2016/12/09/welcome-your-new-research-partner-patients/

    Former Rep. Gingrey's recent article on Ovarian Cancer Research http://thehill.com/blogs/congress-blog/healthcare/309680-with-no-screening-test-available-research-and-awareness-key-to

    Rare Disease Week on Capitol Hill http://rareadvocates.org/rdw/

    Guest column: Congress should support cancer research http://www.theadvocate.com/baton_rouge/opinion/article_3dc1fbf8-b00f-11e6-8127-9768bdfdcccd.html

    @CureForward Webinar: Precision medicine and clinical trials for #ovariancancerhttps://www.cureforward.com/norma-leah-ovarian-cancer-initiative/

    https://clinicaltrials.gov/
    https://ocrfa.org/patients/clinical-trials/

    Article | Patients Attending Medical Conferences: What’s Happening? https://medivizor.com/blog/2015/05/21/patients-attending-medical-conferences-patients-included/

    https://patientsincluded.org/conferences/

    NCI: How You Can Help Medical Research: Donating Your Blood, Tissue, and Other Samples https://www.cancer.gov/publications/patient-education/help-research-donate-tissue
      
    Research news sources: @HealthNewsRevu @medivizor @PubMedHealth @Medscape  @cancernetwrk @ascopost @cochraneconsumr
     
    Other resources mentioned: @patientslikeme @smart_patients @researchmatch @cureforward @ResearchAmerica @UMR4NIH @ConquerCancerFd @RareAdvocates @EveryLifeOrg

    Thursday, December 8, 2016

    December Chat - Getting Involved in Research Advocacy (12/14)

    In the past our community has chatted about advocating for yourself and others and about being a gyn cancer advocate. This month on Wednesday, December 14 at 9pmET (8pmCT/6pmPT) we would like to extend the advocacy topic to include how those impacted by a gynecologic cancer can become involved in cancer research and become a research advocate.

    Our guest this month will be Elda Railey (@RANAdvocate) from Research Advocacy Network (RAN). You can read more about Elda, a founder of RAN, here.

    We invite all those who are already research advocates and all those who want to learn about getting involved with research and becoming a research advocate to join the discussion, which will be guided by these topic questions:

    T1: Beyond enrolling in clinical trials, what are some of the ways people can get involved with cancer research?

    T2: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?

    T3: What does being a "research advocate" involve? How has this role changed as overall patient influence has grown?

    T4: How can people start to get involved with grant review, clinical trials design, research dissemination, and/or conferences?

    T5: What are some tips when it comes to reaching out to Congress about cancer research? What has shown to be effective?


    In addition to the resources found on the Research Advocacy Network site you may also visit the AACR website's page on Becoming a Advocate for Medical Research.

    We look forward to seeing you on the 14th for our final chat of 2016.

    Dee and Christina
    Co-founders #gyncsm Community

    Thursday, November 17, 2016

    Our Community - 2016 Survey Results

    During September and early October we conducted a #gyncsm community survey. We were so pleased that 84 individuals took our survey. This is up from 37 respondents who completed our 2014 #gyncsm survey. We very much appreciate those who took the time to share their ideas and recommendations. Below are some highlights of the results.
     

    The majority of survey respondents were Gynecologic Cancer Patient / Survivors (70.0%) followed by High Risk Individual or Advocate / Previvor (12.5%), Health Care Provider (11.25%), Caregiver / Loved One of a gynecologic cancer patient / survivor (10%) and lastly Cancer Researcher (5%).

    The patient / survivor breakdown was:

    • 46.8% ovarian
    • 34.3% endometrial/uterine
    • 14.0% cervical
    • 8% fallopian, primary peritoneal, vulvar or GTD
    • 0% vaginal
    • 7.8% breast
    Of the health care professionals who filled out the survey, the majority were nurses (42.8%) or gynecologic oncologists (28.5%). The remaining health care professionals were medical oncologists, radiation oncologists, researchers or genetic counselors.
     

    We were interested in how followers interacted with the #gyncsm hashtag, chats and community. 43% of the respondents read the chat blog posts, 43% retweeted using the hashtag, 36% took part in a chat, 38% tweeted using #gyncsm, and 27% read a chat transcript. Less than 10% of the respondents joined us on Smart Patients platform. When asked specifically about our blog site, we found that 50% of the respondents visited our blog.

    We asked which of the topics covered over the past three years were most important and these were the top five topics for survey respondents:

    1. Survivorship
    2. Advocacy
    3. Side Effects
    4. Personalized Medicine
    5. Clinical Trials and Support

    When asked how they used the information from #gyncsm chats after the chat, the top response was advocating for themselves or others (58%). Also of note, 29% took part in an online support group and used a resource found in our blog posts. 

     

    When we asked how we can better help the community and what topics we should discuss, here's some of what we learned:
    • Sometimes the time is either too early or too late.
    • Sometimes the chat is too quick for a meaningful discussion.
    • We should highlight other gyn cancers - endometrial/uterine, cervical were mentioned in particular. Continue to talk about clinical trials and genetics.
    • Talk about health care disparities and outcomes for women of color.
    • Talk about dealing with grief from the loss of friends.
    • Talk about sexuality after treatment.
    • Talk about what is important to younger patients.

    We also asked respondents to share their thoughts on our #gyncsm chat/community and how it has has impacted their attitude toward their own health. Some of the things we heard are that #gyncsm provided:
    • Hope.
    • Made me feel part of the community.
    • Encouraged me to take more ownership in my own preventive health and advocacy for others.
    • Appreciate the range of resources offered.
    • Feel more empowered, less alone.
    • Led me to follow up more on some of my side effects and secondary challenges.
    • Wish #gyncsm could be leveraged into a new non-profit for all GYN cancers.
    • I felt like I was alone... there were no support groups near me. #gyncsm made me feel a part of a community.
    But we also heard:
    • It is challenging for the hashtag to cover both advocacy/activism AND patient/survivor support - this is a common problem with other disease hashtags.
    • There needs to be more equal support for other cancers.

    Lastly we wanted to know how individuals find out about #gyncsm. Respondents found us via:
    • Twitter
    • Other cancer chats
    • Facebook
    • Dee's Blog
    • From a friend
    • Researching cancer
    • Followed @btrfly12
    • NED twitter handle
    • Randomly found the #gyncsm chat
    • Smart Patients

    Thank you to all who took this survey and for your continued support. We are using the information from the survey as we make our plans for next year. Remember if you have any other comments or concerns feel free to reach out to gyncsm@gmail.com.

    Dee
    #gyncsm Co-founder

    Wednesday, November 9, 2016

    November 9,2016 Your Health Care Team


    Tonight we talked about the health care professionals and allied health professionals who are part of the team involved in the care of women diagnosed with a gynecologic cancer.

    We were pleased to have 26 participants join in the discussion. Additional analytics may be found here. And the complete transcript here

    Here is a quick overview of the topic questions and responses:

    T1: Why is it important to think about who is on your health care team? Do you have a defined health care team?
    • Consider post-Cancer experts you may need (ex. fertility), & recognize team members aren't all physicians (nurse navigators)
    • my team is everyone who has helped me get through dx, treatment and now survivorship
    • You have 2 be able 2 effectively communicate w/ your care team; these shouldn't be people you meet once & trust 4 optimal outcome

    T2: Which professionals do you include in your health care team? What are some important roles to fill?

    Professionals mentioned include: 
    medical oncologist
    gynecologic oncologist
    radiation oncologist
    radiologist
    nutritionist
    genetic counselor
    social worker 
    financial counselor
    therapist
    pharmacist
    nurse (clinical trial, adv practice, treatment)
    primary care physician
    mental health support
    gyn-urologist

    Non-professionals
    those who help with insurance , bills, transportation etc
    patient groups

    T3: What are some possibly over-looked or under-used health care professionals that can have an important impact? 
    radiologists
    pelvic floor physical therapist
    medical librarian 
    pharmacist
    health coach
    nutritionist 
    palliative care specialist

    T4: Let's look at radiation oncology. What role does #radonc play on your team? Positives, negatives, ways to improve?
    •  T4 The role is coming more to forefront, care plan are being developed specifically for post-treatment for radonc profs
    • Historically, while they may be part of care team, radonc was not weighted in the "patient engagement" strategy. That's changing

    T5: For nursing, what have you found to be some of the most valuable impacts? What would you like to see improved? 
    • RNs have a huge role in connecting the dots behind the scenes & caring in clinics 
    • Listening skills and documentation competency!
    • Nurses are also the front line when discussing issues of fertility and sexuality

    T6: How do you handle communication and coordination between the members of your health care team?
    • I think, unfortunately, that there is still a need for patients to have their own documentation to facilitate communication
    • Patient is center of care team. Share concerns & ask questions. Improves communication & satisfaction.
    • ask your clinic what options are available: phone calls, texts, secure/HIPAA compliant email, telemedicine might be available
    • Sometimes I think the wisest course is to assume no one has heard anything from anyone else on the team, no matter how vital 

    Resources: 

    Board Certified Pharmacists as Team members
    https://www.youtube.com/watch?v=GCJyQtgruXQ&feature=youtu.be

    List of team members via @CancerCare
    http://www.cancercare.org/publications/59-your_health_care_team_your_doctor_is_only_the_beginning

    National Society of Genetic Counselors
    http://www.nsgc.org/

    The must-have binder: my key to being an organized patient (or caregiver)
    http://lisabadams.com/2011/03/16/the-binder-what-every-patient-should-have/


    The next #gyncsm chat is Wednesday, December 14th at 9pmET. The topic is Getting Involved in Research.   

    Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at https://www.smartpatients.com/gyncsm.

    See you next month. 

    Dee 
    Co-founder #gyncsm