We were pleased that 61 people participated in this chat with 2.7 million impressions and 658 tweets. You may learn more analytics here.
Some responses to our topic questions include:
T1: What are the types of support patients need at diagnosis, during treatment and after? What is most important for you, your loved one or those you support?
- At first I see a big need to not feel alone. Also a competing desire to learn all you can but also not wanting to overwhelm yourself.
- As many facets as there are in our lives, each of them requires support as cancer touches everything.
- I wished I had someone to navigate and to research for me when first diagnosed. I've been that person to many others. I needed a "me" for me.
- Knowledge is power here. Patients are in need of education and supportive resources
- Support that includes caregivers and family members so they can better support their loved one.
- A combination of support is helpful for different needs.
- There is a benefit to each type of support program and it depends on the person's personality what they're comfortable with. Many orgs, incl. us, offer a variety of support programs so that people can find the best fit.
- online Facebook group only. Once a month at hospital hasn't been convenient.
- All of them. Talking to a person who has gone through it gives you different support than taking part in in-person groups.
Then we moved on to our Digital Health Fair.
Here are a few tweets from each participating organization. You may find and follow each organization on Twitter or on the internet. Please refer to the transcript for additional tweets and information from each participant.
Cancer and Careers
Cancer and Careers (CAC) is a national non-profit that empowers and educates people with #cancer to thrive in their workplace by providing expert advice, interactive tools and educational programs #gyncsm— Cancer and Careers (@CancerAndCareer) September 13, 2018
Cancer Hope NetworkLearn more about our free programs, events and services at https://t.co/1qYAOFCa4p. We're also hosting our 4th annual West Coast Conference on Work & Cancer in L.A. on 10/13! For more info & to register https://t.co/SrZex85Luv #gyncsm— Cancer and Careers (@CancerAndCareer) September 13, 2018
We provide one-on-one support for #patients and #caregivers by connecting trained #SupportVolunteers (like @womenofteal!) who have faced a similar situation. #gyncsm— Cancer Hope Network (@CancerHopeNet) September 13, 2018
We connect people at all stages of their experience - from diagnosis, through treatment and into survivorship. As several have mentioned, tonight, different people need support at different times. #gyncsm— Cancer Hope Network (@CancerHopeNet) September 13, 2018
Clearity exists to help women find credible info about their OC & the treatments that can help them survive. Our goal is to understand each patient’s unique priorities & needs. #gyncsm— Clearity Foundation (@ClearityFnd) September 13, 2018
Over 25% of women who have come to @ClearityFnd over the years have enrolled in #clinicaltrials! Check out our new guided trial finder: https://t.co/XyoauqqI9A #gyncsm— Clearity Foundation (@ClearityFnd) September 13, 2018
Elixir FundThe Clearity Portal is an online community with informational resources and social support for #ovariancancer survivors and patients https://t.co/nN5h5jIy39 @gyncsm— Clearity Foundation (@ClearityFnd) September 13, 2018
The Elixir Fund, https://t.co/lsd79XJZ4u, is dedicated to improving the comfort and care of cancer patients & their caregivers #gyncsm— Elixir Fund (@elixirfund) September 13, 2018
Currently we are expanding the Elixir Fund Registry. A free, online support registry for patients & caregivers to register for the services they need- food, gas/rides, housekeeping, massage, etc. #gyncsm— Elixir Fund (@elixirfund) September 13, 2018
Family, friends or the community can purchase items & the registrant receives a gift certificate, redeemable at a local participating business, for that item. https://t.co/xynKZBEQgN #gyncsm— Elixir Fund (@elixirfund) September 13, 2018
FORCE is a national non-profit organization dedicated to improving the lives of individuals and families affected by hereditary breast, ovarian and related cancer. https://t.co/qzKW6TA2el #hboc #gyncsm— FORCE (@FacingOurRisk) September 13, 2018
HelpsyWe also offer a personalized 1-on-1 Peer Navigation Program and local support groups across the US. Information on clinical trials, current research studies and public policy issues are also available https://t.co/G3jsCoT7t6 #gyncsm— FORCE (@FacingOurRisk) September 13, 2018
Hi, I’m SAN@Helpsy, an AI cancer nurse Symptom management and Navigation. I can help you to prepare for treatment, manage side effects and find community resources for you. #symptoms #forpatients #gyncsm (1/ 4)— helpsy (@helpsyhealth) September 13, 2018
I can help you navigate through the treatment journey by anticipating your needs and try to make sure you are always doing okay and never leave your side #gyncsm #bcsm #btsm #treatmentjourney #navigation (2 / 4)— helpsy (@helpsyhealth) September 13, 2018
Follow us on our Facebook page https://t.co/Yu2AK9kzix and twitter @helpsyhealth, You can find my free app on Apple Store https://t.co/Qy3J5t0CAI. Code - careplanX. You can also use a web based version on https://t.co/GO2DVkDShy #gyncsm(4/4)— helpsy (@helpsyhealth) September 13, 2018
#Cervivor is a community committed to #cervicalcancer advocacy & support. Our advocates have/have had cervical cancer & now advocate for awareness & prevention. We believe our stories can shift the narrative on this disease. Check out our site https://t.co/6rA99ZJ5FE #gyncsm— IamCervivor (@IamCervivor) September 13, 2018
#Cervivor has both in person & online events. #CervivorSchool is an in person educational event to train advocates. We educate our advocates on #HPV #CervicalCancer & provide advocacy training & storytelling. #gyncsm— IamCervivor (@IamCervivor) September 13, 2018
OCRFA is the largest global org fighting #ovariancancer. We advance critical research, support women and families before, during & beyond diagnosis, and work w/all levels of government to ensure ovarian cancer is a priority. https://t.co/iPWcYRcntk #gyncsm— ocrfa (@ocrfa) September 13, 2018
Our Woman to Woman program offers support to gynecologic (not just ovarian) cancer patients & their families, by pairing them with trained volunteer mentors. Participation is on-site at 40+ institutions, or virtual. https://t.co/OAQhTLwUeU #gyncsm— ocrfa (@ocrfa) September 13, 2018
For those who need to talk to someone, our Oncology Social Worker is available M-F, 12-3PM ET. Call 212-268-1002 and ask for Tracy – if she misses you she’ll get back w/in 24 hours. #gyncsm— ocrfa (@ocrfa) September 13, 2018
We have an incredibly supportive, engaged online community of nearly 47K #ovariancancer survivors, caregivers and supporters, thanks to @teaminspire. https://t.co/C4Yj49P4NF #gyncsm— ocrfa (@ocrfa) September 13, 2018
Proactive Genes is developing resources to help parents talk to their children about genetics and hereditary risk. #gyncsm— Proactive Genes (@ProactiveGenes) September 13, 2018
Proactive Genes has a new resource called Mom’s Genes which is a children’s book that parents can use to start a conversation about family health history. #gyncsm— Proactive Genes (@ProactiveGenes) September 13, 2018
SHAREMy heart is SO full today. 💗— Proactive Genes (@ProactiveGenes) August 29, 2018
Mom’s Genes is officially available! 🚀 Please check it out https://t.co/D2xw6eJqVZ and start a convo about family health. 📚 #family #health #cancerprevention
Hi #gyncsm! SHARE is a national nonprofit that supports, educates, and empowers women affected by ovarian cancer. Our mission is to create and sustain a supportive community of women affected by ovarian cancer. More info at: https://t.co/6499uoGXyI— SHARE Cancer Support (@SHAREing) September 13, 2018
Our ovca helpline 866.537.4273 is staffed 7 days/week by peers who have faced an ovca diagnosis and are trained to answer questions, connect you with resources, or just listen. We can also match you with a peer who has a similar situation to you. En Español 212.719.4454 #gyncsm— SHARE Cancer Support (@SHAREing) September 13, 2018
Our support groups are led by trained ovca peers and cover many experiences and topics, so you can get help that's right for you. SHARE offers 10 ovca support groups each month in-person or by phone. Find one for yourself https://t.co/oWrPYaGOCm All gyn cancer welcome! #gyncsm— SHARE Cancer Support (@SHAREing) September 13, 2018
SBPOCSHARE also has an online ovarian community where you can share experiences and get support peer anonymously, anywhere, anytime: https://t.co/XF3MzPU8nq #gyncsm Tweet at us if you have any other questions about SHARE's services!— SHARE Cancer Support (@SHAREing) September 13, 2018
This is a "whisper" now but in Oct @ClearityFnd & SPBOCF will launch Steps Through OC, offering emotional, social, cultural support for life with #ovariancancer. Think: a professional ovarian cancer counselor is your point person. https://t.co/SamtoYBnN9 https://t.co/qH1iHTEsTS— SPBOC Foundation (@SPBOCF) September 13, 2018
Steps Through OC is staffed by licensed counselors w OC expertise-they build a relationship with each participant, holding a 360° view of their clinical and overall life situation, providing individualized resources and anticipating future needs. #gyncsm— SPBOC Foundation (@SPBOCF) September 13, 2018
https://t.co/Vn6IUq0QAi is an online community where patients and their families learn from each other, sharing experiences and info. #gyncsm— Robin Martinez (@RobinSmrtPtient) September 13, 2018
At https://t.co/Vn6IUq0QAi you learn at your own speed about treatments, trials, and scientific developments related to your condition. #gyncsm— Robin Martinez (@RobinSmrtPtient) September 13, 2018
Support Connectionhttps://t.co/Vn6IUq0QAi members talk about everything, find answers, provide reassurance, and share experiences to help. #gyncsm— Robin Martinez (@RobinSmrtPtient) September 13, 2018
Sorry we can't join #gyncsm in person. Check out our website for how we support women with Gyn cancers - https://t.co/QDeo0r4TlB— Support Connection (@SupportConnect) September 13, 2018
#gyncsm WhatNext has over 50K registered users of all types of cancer, but we have a large community of all gyne cancer patients. We offer a place to share first-hand cancer experiences, share your story, inspire, motivate, and educate each other.— WhatNext.com (@WhatNext_Cancer) September 13, 2018
We also celebrated our 5th anniversary as a chat and Twitter community.
Remember if you are a patient or caregiver you may continue this discussion on the Smart Patients Platform ( https://www.smartpatients.com/gyncsm ).
Join us next month on October 10, 2018 at 9pm when we chat about Managing Cancer Pain.
See you then,