Wednesday, February 8, 2017

HPV and Cervical Cancer Chat - 2/8/17

During this month's chat discussion on HPV and Cervical Cancer the community learned vital information about screening, vaccination, fertility and how to better educate women on the risks and treatment of cervical cancer. We were joined by forty-nine participants and had over 2.4 million impressions.

Here is a sample of the responses to our topic questions.
T1: Which HPV (Human Papilloma Virus) types cause cervical cancer? How does the HPV vaccination prevent cancer? 
  • HPV causes nearly all cases of cervical cancer. While there are over 150 HPV types, ~14 are known to cause cervical cancer.
  • Usually HPV 16 and 18. But several others. Vaccine prevent against many cancer and wart causing types of HPV
  • Just because you are infected with #HPV - doesn't mean that you will DEFINITELY develop #cervicalcancer
  • Because we can't be sure who will develop cancer - best to PREVENT with #HPVaccine
  • It is also important to note that the HPV infection can develop years after exposure
  • @theNCI comprehensive cancer ctrs statement on HPV vaccination tinyurl.com/je8tujx

T2: What other health issues and cancers are associated with HPV? Why is the vaccine recommended for both boys and girls?
  • @GYNcancer :vaccinate both girls & boys between 11- 13 years. 2 doses . Vacc + screening prevent virtually all CervCa
  • Other HPV-related cancers include: vagina, vulva, penis, anus, rectum, and oropharynx (cancers of the back of the throat) 
  • As of 10/2016, CDC recommends that 11-12 year-olds receive 2 doses of HPV vaccine at least 6 months apart instead of 3
  • Cigarette smoking and conditions that lower the immune system like steroids [increase risk]
  • Cervical dysplasia (not yet cancer) can be as emotionally and mentally taxing for young women
  • The best time to vaccinate is well before any sexual skin to skin contact. 

T3: What are the tools we have to catch cervical cancer in the pre-cancer and early stages? What do we need to know re: guidelines? 
  •  If there is concern based on pap and/or HPV test, then colposcopy (a closer look) is done in office.
  •  HPV test should be first test for cervical cancer screening. Detects 14 high-risk HPV types. via @US_FDA
  • Continued importance of pap/HPV screening based on ASCCP guidelines--this and vaccination best way to protect 
  • ACOG infographic on screening acog.org/Patients/FAQs/…
  •  Imp- Guidelines are based on average risk and should be starting point of discussion with your doctor about your personal risk!
T4: What are options for fertility preservation? What fertility and general resources can help women diagnosed with cervical disease? 

T5: There is still a lot of stigma surrounding women's cancers. How can we ensure ALL women receive the necessary education.

  • Take stigma off of HPV as a "sexually transmitted" disease and change to "human contact" 
  • Keep talking about it until it's not a stigma - it's just a health condition to treat!
  • Recent news @NewsHour @DrJenCaudle #cervical cancer kills more african american women http://www.pbs.org/newshour/bb/cervical-cancer-killing-many-african-american-women-thought/ 
  • Australia has implemented school-based vaccination w/ success in vaccine rates and decreased disease
  • It would help if our education about bodies included penis, vagina, ovaries, testes, etc as consistently as we say "elbow."
  • More education programs in junior high and high schools. School vaccination programs 
  • Celebrities with cervical cancer diagnosis speaking out 
  • Organizations like American Indian Cancer Foundation americanindiancancer.org/cervical help educate and raise awareness
  • Organizations like @iamcervivor work to share stories - stories touch emotions and emotion leads to actions
  • Cancer treatment is far worse than the "stigma" of people knowing you're sexually active




Please scroll down for additional resources. To read the entire transcript please click here.

Remember that patients and caregivers are invited to continue our #gyncsm discussions on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm  .

We invite you to join us next month, Wednesday, March 8, 2017 at 9pm ET for our chat on Gyn Cancer Disparities. 

See you next month! And please use the #gyncsm hashtag to share important information with our community.

Dee
Co-Founder #gyncsm

RESOURCES

@GYNCancer HPV Facts and testing http://www.foundationforwomenscancer.org/educational-materials/cervical-cancer-edmaterials/

@CDCgov has info and resources about #HPV available at     https://www.cdc.gov/hpv/parents/whatishpv.html

ASCCP guidelines available for public http://www.asccp.org/asccp-guidelines

SGO webpage about HPV with good resources sgo.org/hpv/

FDA Resource - Improving odds of cervical health fda.gov/forconsumers/c…

Fertility Preservation in Patients With Cervical Cancer | Cancer Network  http://www.cancernetwork.com/oncology-journal/fertility-preservation-patients-cervical-cancer

#cervicalcancer rates and disparities nytimes.com/2017/01/23/hea…

Time Magazine : Cervical Cancer Rates http://time.com/4643570/cervical-cancer-death-rates-study/

HPV vaccine: A smart way to protect kids from cancer  https://www.mdanderson.org/publications/cancerwise/2013/06/hpv-vaccine-a-smart-way-to-protect-kids-from-cancer.html

How to Talk to Your Kids about HPV https://www.mdanderson.org/publications/focused-on-health/january-2017/HPV-vaccine-talk-to-your-kids.html

Treatments for cervical cell changes: cancer.gov/types/cervical…

Who should be vaccinated against #HPV, and when? Tips from our Dr. Haddad: http://blog.dana-farber.org/insight/2017/01/who-should-get-the-hpv-vaccine/  

Friday, February 3, 2017

Feb. 8, 2017 HPV and Cervical Cancer Chat


While January is officially Cervical Health Month, we're going to continue sharing information and discussing HPV (Human Papilloma Virus), the HPV vaccination, and cervical cancer treatment and survivorship right into February - and beyond.

Cervical cancer forms in the cells lining the cervix. It generally takes several years for normal cells to develop into cervical cancer. The Pap test detects those precancerous cells and the HPV test detects the presence of high-risk HPV types known to lead to cervical cancer.

The most recent numbers available on the incidence of cervical cancer in the U.S. is from 2013. In that year, 11,955 women were diagnosed with cervical cancer (CDC ). The five-year survival rate is 68%. Over the past forty years, death due to cervical cancer has dropped by more than 50% due to the use of the Pap test (http://www.cancer.net/cancer-types/cervical-cancer/statistics).

HPV is responsible for nearly all cases of cervical cancer, with HPV 16 and 18 accounting for more than seventy percent of all cervical cancers. HPV is a very common virus that is transmitted by skin-to-skin contact. Many HPV infections go away by themselves but when they persist they can lead to cervical cancer. Other cancers also associated with HPV include cancer of the vagina, vulva, penis, anus, rectum, and oropharynx (cancers of the back of the throat, including the base of the tongue and tonsils). The goal of vaccination is to prevent a lasting HPV infection after a person is exposed to the virus. (http://www.cancer.net/navigating-cancer-care/prevention-and-healthy-living/hpv-and-cancer)

We hope you will join us and learn more about cervical cancer.

We will use these questions to guide our chat:

T1: Which HPV (Human Papilloma Virus) types cause cervical cancer? How does the HPV vaccination prevent cancer? 

T2: What other health issues and cancers are associated with HPV? Why is the vaccine recommended for both boys and girls?

T3: What are the tools we have to catch cervical cancer in the pre-cancer and early stages? What do we need to know re: guidelines? 

T4: What are options for fertility preservation? What fertility and general resources can help women diagnosed with cervical disease? 

T5: There is still a lot of stigma surrounding women's cancers. How can we ensure ALL women receive the necessary education.

Feel free to read the Cancer.Net website (http://www.cancer.net/cancer-types/cervical-cancer/introduction) and the CDC website (https://www.cdc.gov/cancer/hpv/statistics/cases.htm) for more information on cervical cancer and HPV.

See you on Wed the 8th!

Dee
#gyncsm Co-Founder


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