Sept 11, 2024 : So You Want To Be An Advocate - Personal, Legislative & Research

This month we celebrated our 11th anniversary as a community and chat on X. 

Christina and I appreciate the support provided to us by patients and caregivers, our health care moderators, advocacy and medical organizations, chat guests, researchers, social workers and navigators as well as. 

We were so pleased to have representatives from GRASP and OCRA join us as we discussed various types of advocacy from personal to research. You may find our transcript here and analytics here.

Here are some highlights from chat:

T1: How do you personally advocate for your own gyn health, the health of your patients or, as a caregiver/loved one, for others?

• I advocate for gyn health by using/sharing resources from OCRA, like our educational materials and support services. Education empowers us to advocate for ourselves & our loved ones. Check out our site for resources for patients & caregivers: http://ocrahope.org/resources-support Advocating for your own health means being informed and proactive. Ask questions, share what matters to you, connect with knowledgeable communities, and seek second opinions when possible.
• I try - not always successfully - to write down my main concerns and questions before each appointment so I can get the most out of the short time in the visit.
• read up! Find research to answer potential questions, distill it to basics and ask doctors to explain it in context to the patient.
• Empowering patients is critical in shared decision making. Each patient is different and therefore recommendations should be tailored to each patients. Simplifying terminology to help patients and families understand diagnosis and treatment is a crucial first step.

T2: What are some tips and resources for being an effective advocate for yourself or your loved ones in the healthcare system? 

• Find the right online resources, connect with cancer organizations, and seek out others with similar diagnoses.
• A key to being your own best advocate? Be proactive! Know your health history, ask questions & seek second opinions if needed. Resources like OCRA’s "Find a Doctor" tool can help locate gyn-oncs, specialists & treatment centers in your area: http://ocrahope.org/resources-support/find-a-doctor
• Many of the disease organizations like @ocrahope @GYNCancer @CancerDotNet
  
• have Questions to Ask Your Doctor lists and other great resources. You are not alone and education helps empower. @ECANAwomen @SHARECancerSupt @ucan2020
• having a list of questions can be very helpful to guide the discussion and make sure all of your questions are answered; having something to take notes and refer back to, inviting a friend or family/caregiver to be an extra set of ears and review is also good.
• Patients are experts in their own bodies. If a patient or family member is concerned about a symptoms then we need to make sure those concerns are addressed. Always always always listen to the patient.

T3: What does being a "research advocate" involve? What are some of the ways people can get involved with cancer research - like grant review, clinical trials design, research dissemination, and/or conferences?

• Being a research advocate means bringing the patient experience into the research process. Your insight is invaluable. Get involved and make your voice heard.
• Being a research advocate involves providing patient insights into the experience of clinical trials. This can include making a trial easier to understand or improving patient feedback procedures. Connect with orgs like OCRA for opportunities: http://ocrahope.org/get-involved/volunteer-engage.
• Online training programs can help you start your journey as a research advocate. Learn the science, but remember: YOU are the expert in your experience.
• Want to get involved in cancer research? Start by connecting with organizations like GRASP that offer training and opportunities to collaborate with researchers
• #gyncsm did a past chat with
• @RANAdvocate
• focused on Research Advocacy - here's the recap with some info and links: http://gyncsm.blogspot.com/2016/12/getting-involved-in-research-advocacy.html
• There are multiple organizations where patient advocates can get involved in research including
• @NRGonc You can also talk to your doctor. Patient voices & community perspectives are essential in research. Working together to improve patient outcomes and experiences.
• Coursera offers a great program on the biology of cancer.
• @AACR has a Scientist to Survivor Program
• Reach out to the Advocate collaborative @AdvocateCollab http://advocatecollaborative.org A great group for support, education and information.
• consider talking to your own Onc team- many GYN oncologist are involved in research and could potentially use a patient advocate on their teams! @NCIResearchCtr NCI designated Cancer centers often have community and patient research advocacy options for engagement!

T4: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?

• OCRA is the largest charity in the world devoted to ovarian & related gynecologic research, having invested $122 million to date. Keep up with the impact, results, and major breakthroughs of this research and learn more about our grantees here: http://ocrahope.org/research/impact-results
• There are a number of groups that share information in lay terms. @theNCI
• has a glossary https://cancer.gov/publications/dictionaries/cancer-terms. You don’t need to understand all of it. But you are the expert. 
• I signed up for emails from @CancerNetwrk and also keep up with@ASCOPost . Their summaries of the journal articles are well written for a general audience to understand. 
• More and more healthcare conferences do include patient advocates and can be a great experience. And organizations like @ocrahope @gyncancer @facingourrisk have conferences just for patients
• Of course, follow the #gyncsm on X during the @ASCO @SGO_org @IGCSociety @myESMO
  
• annual meetings and you will learn the latest research being presented. And it is OK to ask questions of the poster if you don't understand the research.
• Follow gyn onc groups on social media, podcasts, conferences. There are special rates and many times there are funding sources to help patients and advocates attend conferences.
• #gyncsm following major organizations can help pts explore research and consider opportunities for engagement at meetings @GYNCancer @SGO_org @IGCANetwork
• Join the SGO, FWC and ASCO. These organizations are great with providing up-to-date info. Conferences are also a great way to stay informed."
• @MedicalwatchBCMedWatch has a newsletter you can sign up for specific gyn cancers news https://medical.watch

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

• @CancerAdvocacy just posted today about applications for their Cancer Policy & Advocacy Team (CPAT) https://canceradvocacy.org/get-involved/cpat/
• When reaching out to legislators, be clear/specific, provide personal stories and data to illustrate impact, and follow up consistently. Build relationships and participate in advocacy events, such as OCRA’s Advocacy Day. Learn more here: http://ocrahope.org/advocacy/become-an-advocate
• Want to be more involved year-round? OCRA’s Advocate Leaders program trains/supports advocates across the country to develop relationships w/ elected officials & fight for expanded federal resources. Applications for the 2025 cohort open Sep 25 http://ocrahope.org/advocacy/become-an-advocate/advocate-leaders
• @HealthUnion has a wonderful blog with many relevant topics for healthcare advocates: https://socialhealthnetwork.com/stories/advocacy-compensation-tips     https://socialhealthnetwork.com/guest-expert/the-evolution-of-health-advocacy
• I have worked in politics most of my career. I have worked in a Congressional district office. Familiarize yourself with your elected officials local, state, and national. From that perspective when there is legislation that impacts cancer patients send your member a personal message explaining why you are for or against it. Make sure to mention you are a constituent. That is taken much more seriously than a petition with lists of names. There is much more you can do, but that is by far the easiest way to engage with your elected officials.

T6: For gynecologic cancers, what are the barriers in raising awareness and advocating for improvements in care? What issues do you think it's important for the #gyncsm community to advocate around? 

• Barriers to raising awareness include lack of education & limited funding. Advocating for improved care involves addressing gaps in research & funding for gyn cancers, as well as disparities in access to quality care. Join the fight/take action http://ocrahope.org/advocacy/sign-up-for-action-alerts #
•  reach out to your local state legislators from your own district, find out if they have a cancer caucus #gyncsm Consider aligning with larger organizations such as @ASCO @SGO_org @ACSCAN
• I feel like things have come a long way in terms of the stigma of "down there" cancers. That lays the foundation to spread even more education. Thanks to everyone who is using this awareness month to spread #gyncsm facts and information.
• Spreading the word about gyn cancers during #GCAM has become easier and I love the teal ribbons but knowleddge about rarer type of gyn cancers , clear cell OC, Low Grade , Vulvar, Vaginal in the general public is still low. Education is key.
• barriers and disparities along race, ethnicity geography and SES are along the whole continuum of care in #hpvvaccine #genetictesting #access to GYN oncologists; #Clinicaltrials
• I think more awareness of hereditary mutations that lead to gyn cancers needs greater awareness. Impact on family - daughters AND sons is so important. #gyncsm
• T6: Spreading information. Addressing misinformation. Discussing HPV vaccination. Evaluating post menopausal bleeding. Cervical cancer screening. Talking about signs & symptoms of cancer. Financial investments in research. We have come a long way but have a long way to go
• #gyncsm addressing barriers, also means ensuring that there is diversity and representation in all forms of advocacy, including research advocacy. @BCancerCollab1 @KDRichardson924 is a leader in this space!  

We invite you to help us plan future chats by taking our community survey at https://forms.gle/4vABT5nt4RqbVR8x5 . The Survey is open until Sept 30, 2024. 

Remember you can continue our discussion about advocacy on @smart_patients by joining Smart Patients at https://www.smartpatients.com/partners/gyncsm .

See you in December when we are joined by Cervivor to discuss Cervical Cancer. 

Dee and Christina 

Co-moderators

So You Want To Be An Advocate - Personal, Legislative & Research - Sept 11, 2024 Chat

This quarter, our chat occurs during Gynecologic Cancer Awareness Month (#GCAM). What better time than this to have the #gyncsm community chat about the different types of advocacy. 

We are happy that we will have representatives join us from OCRA (Ovarian Cancer Research Alliance @ocrahope) and GRASP (Guiding Researchers and Advocates to Scientific Partnerships @GRASPtweets). We will discuss how you can be an advocate for yourself, how you can advocate at the state and national level to fund research and ensure that gyn cancer patients have access to the best treatments, and how you can be a research advocate. 

Join us on Wednesday, September 11, 2024 at 8pm ET (7pm CT, 5pm PT). Below are the topic questions that will guide our chat.

T1: How do you personally advocate for your own gyn health, the health of your patients or, as a caregiver/loved one, for others?

T2: What are some tips and resources for being an effective advocate for yourself or your loved ones in the healthcare system? 

T3: What does being a "research advocate" involve? What are some of the ways people can get involved with cancer research - like grant review, clinical trials design, research dissemination, and/or conferences?

T4: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?

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

T6: For gynecologic cancers, what are the barriers in raising awareness and advocating for improvements in care? What issues do you think it's important for the #gyncsm community to advocate around? 

In addition to it being #GCAM, this month we celebrate our 11th anniversary as a community and chat. We have so many of you to thank for our success. We appreciate each of you!

Note that we will be sharing a Google Form Survey at the end of the chat, and in the summary chat blog post, so you will be able to share your thoughts and ideas about how #gyncsm can best serve patients, caregivers and health care providers. 

 

We hope to see you on Wednesday night!

Dee and Christina

August 10, 2022 Advocacy for Yourself and Others

The #gyncsm community welcomed twenty-two participants as we discussed Advocating for Yourself and Others.  You may find the transcript here and analytics here. For resources, please see responses to Topic Question 5 . 

Before we started the chat, we took a moment to remember a very special advocate Dicey Scroggins. She advised and inspired so many of us and helped raise patient advocacy to a new level, especially for Black women. She will be missed. #RestinPeace #RememberingDicey

T1: What are some of the different types of healthcare advocacy?

• 1: Healthcare advocacy can involve the full care team or individuals like social workers and nurse navigators. They can help with access to care, make informed healthcare decisions, and all of the insurance tasks that come with treatment.
• Patient advocates can build partnerships with their care team (like @pattiny1) to provide screen and treat events. They can also provide resources about support groups like our Creating Connections to meet others in real-time. No one should ever feel alone.
• Advocacy come in many forms from small scale to large. Sometimes it is you vs your insurance. Sometimes you advocate with your family member's health team. It can be symptom awareness and education. Research advocacy. Lots of ways to speak up
• My list includes Advocating for yourself , advocating for increasing funding of research, legislative and policy advocacy, advocating for patient engagement in clinical trial access,
• T1: Being aware of the community being served which means considering any language or cultural considerations. Also, providing a engaging framework that reaches out to those most vulnerable.
• So many things to work on in this space. Patient advocacy, Research advocacy, Community advocacy, Policy advocacy and across all sorts of areas - screening, diagnosis, clinical care, survivorship, end-of-life care. Whatever you are driven by, there is room for you here
• One can choose to advocate for anything that is important to them or to their families. And if advocacy work doesn’t exist in a certain space, create it! Who will tell you no, especially if it’s needed?

T2a: What are some of the ways that you personally advocate for yourself, loved ones, your patients, or larger groups within healthcare?
T2b: What prompted you to "put on your advocacy hat"?

• We share resources to help patients become more educated on their options, we share our personal stories to help create decisions and changes in policy, and we partner with community leaders to make a difference in our local communities.
• Dee and I have participated in @SaludAmerica @patientchat and other tweet chats to spread education about gynecologic cancers. We also participate in awareness days/month activities online - like #Dazzle4Rare that is happening this week.
• At an individual patient level collecting these resources that are available and sharing them with our patients is very important to have on hand! This can be an important link for patients To have both print or online depending on what patients want!
• T2b: I was 24 and faced a lot of challenges throughout treatment. The only other person I knew who experienced #CervicalCancer passed away at 27. I didn't know about Cervivor. I had a support system but did not know anyone with my cancer. I wanted to change that
• After request from PCP met with his residents to talk about the effects of Cancer/treatment from a patient perspective
• 2b: How could anyone know a patient with gynecologic cancer and not love them and advocate for them?
• T2 I became interested in advocacy after I was dx w/endometrial cancer
• The system didn't have the answers I needed so I set out to find them. For myself & others. Along the way, I identified more gaps/challenges but also tons of motivated people who all are looking to change the narrative in cancer. So I've stayed. T2b
• I run a FB group, serve as a consumer reviewer with the DOD, and, as a freelance healthcare journalist, write about gyn cancer
• Wanting to make a difference beyond myself. My Nana had the same diag/prognosis, basically. Know science/time alone aren't enough. We have to push / demand / work so standard of care isn't standard of fail for so many.

T3: What are some of the skills and tools you think are needed to be an effective advocate in the healthcare system?

• T3: From a provider's point of view: having great listening skills and empathy can go a long way. As a patient advocate: knowledge is power, your personal story has an impact, and persistence is key.
• Progress is so, so slow. So patience and tenacity are needed to be an advocate. Knowledge that it is ok to step back from time to time is important to. Ability to find hopeful things to hold on to. Cultivate relationships with other advocates who "get it"
• Advocacy for yourself or a loved one can mean lots of record keeping - if that's not a skill you have, maybe you can find someone that loves to organize and it is a great way they can feel helpful
• I think the most important resources for healthcare advocacy are (ironically) hope, faith, and love, and the most important is hope. Hoping that something/anything will make a difference for good
• T3 You have to look past the fear of the unknown and the fear of rejection. Advocacy work can sometimes be “thankless” if it feels as if you aren’t accomplishing something important. So focus on YOUR ‘why’ & don’t waver.

T4: What are some of the barriers you have experienced in advocating for yourself and/or others? Any tips to pass along?

• Our community faces: systemic racism, access to care, misdiagnosis, ageism, financial toxicity, lack of medical coverage, and food scarcity. Find your social workers and nurse navigators (if available) or reach out to The Patient Advocate Foundation or @familyreach
• Those in healthcare are not always used to informed, empowered patients. Getting better maybe? Showing up with an open mind and trying to understand the "other side" can help. But also be alert for those just wanting free labor / just "using" your story
• For myself: Old school paternalism and protocol-based care. For others: Access to affordable, quality treatment options. For communities: oh man... #healthquity is one of the biggest challenges in all of healthcare, not just cancer.
• T4 Patient advocates want to be involved but many do not have the $ to attend meetings or participate in presentations/panels. Support from Pharma and the oncology organizations could help. It has improved some but not in all cases.
• For myself: Being a parent & while diagnosed - a single one who had to work for insurance. Better medical options didn't always mesh with needing to work, drive, parent. For others: time/energy is limited & breaking through & finding ways to use skills meaningfully.

T5: What are some of the organizations, programs and resources that have helped you become a more confident advocate and/or provide opportunities for you to advocate? Feel free to share their twitter handle and/or website.

•  Cervivor was the first that gave me hope and the skills to use my voice for change. Then I went back to #Iowa and built partnerships with @ACSCAN, @ABCancer, @BrasfortheCause, @CancerIowa, & @IAPublicHealth.
• Top picks #gyncsm @ASCO Patient advocacy RAN research advocacy network @RAN https://researchadvocacy.org/general-resources Citizen Scientist @ufhealthcenter https://t.co/lHrXp824xK ECANA Endometrial Cancer Network for African American Women @ECANAwomen https://ecanawomen.org/research/seat-at-the-table
• I have to credit the SGO and the FWC for giving me advocacy opportunities as well as SLOCA
• The @AACR scientist to survivor program and others like it are great. @power4patients also has good blog/resources including great advocate tips from @JBBC Also good stuff via @CancerAdvocacy @GlobalGenes
• Pre-Covid Cervivor School was an excellent way to learn about advocacy.
• We're making our way back into things - Like this exciting partnership with @StJude for an #HPV Cancer Survivors School! The application closes on 8/19. Visit:  https://web.cvent.com/event/298dd689-d6a3-4c90-8529-cb8a9d85a1fd/summary?rt=YNd0WApTzkGoW8swuRt6ng
• The @NCCN patient guidelines are a great resource! It benefits all newly diagnosed patients to read the @NCCN disease-specific patient guidelines multiple times in the course of their disease journey.
• Individuals who share about opportunities for advocates as @AMJohnston1315 or @stacy_hurt have done, who take time on the phone, email, video, Twitter to make intros, share info., collaborate. That's also helpful. Those who amplify & invite varied voices.
• @ocrahope
  
  (Survivors Teaching Students), the
  @ClearityFnd
  (podcasts, resources, blog to stay on top of what's current as relates to #ovariancancer), and individuals like @womenofteal @KDRichardson924 @coffeemommy @jillfeldman4
  who mentor.

T6: Are there things that groups focusing on advocating for gyn cancer patients, those with and at-risk for hereditary cancer, and cancer in general could provide to better support you when it comes to advocacy? What issues in the gyn cancer community do we need to draw attention to?

• Non-uniformity of care is a big issue. The care people get for the same disease or condition varies widely. If you don't have an idea of the treatments people get in different places, you don't know what's missing for you and what you can advocate for.
• Cancer Centers / community health centers should be including patient advocates at all levels - patient experience, patient support, SRB, IRB , center priorities etc. 
• Support orgs like all of us, by sharing our stories, supporting our programming, engaging in our social media content, including the patient voice in research, advisory boards, etc. Creating inclusive and culturally competent policies, clinical trials, & resources
• Quick guides to different types of advocacy @TriageCancer https://triagecancer.org/cancer-advocacy

 

We are so happy so many advocates could join us and share their experience and support one another. 

#gyncsm patient-survivors, caregivers, and advocates in the NYC area are invited to attend the Gynecologic Cancer Survivor-Caregiver Summit: Care Beyond the Cure on September 28.Further information may be found at https://igcs.org/advocacy/advocacy-summit/

Gynecologic Cancers Social Media is participating #Dazzle4Rare all week. Learn about some of the rare gynecologic cancers on our blog at https://gyncsm.blogspot.com/2020/09/september-9-2020-rare-ovarian-and-rare.html and follow the #GYNCSM hashtag to learn about other rare diseases.

Save the date for our next #gyncsm chat on Wednesday, September 14th at 8pmET.  We’ll discuss Clinical Trials. September is also Gynecologic Cancer Awareness Month. 

We hope to see you then.

 

Dee and Christina

Advocacy for Yourself and Others - Aug 10, 2022

advocacy  noun : the act or process of supporting a cause or proposal : the act or process of advocating something

From the Merriam-Webster dictionary

 

On Wednesday August 10, 2022 at 8pm ET ( 7pm CT 5pm PT), the #gyncsm community will be chatting about Advocacy. At times, we as patients are advocating for ourselves to ensure we receive the correct and appropriate care. As a caregiver we may be advocating for our loved one in order to have tests done quickly. As a gyn onc, we may be advocating for a patient to receive approval for a test from an insurance company.

But advocacy can be more than that. We may choose to work with an awareness organization to raise awareness of symptoms. Or advocate to increase awareness of inequities in cancer care or in support of the HPV vaccination to reduce cervical cancers. We may also advocate with our state and federal government to increase funding for gynecologic cancer research. We may advocate to be part of our cancer center's patient advisory board or to have a support group formed or for patients to receive more information about diet and exercise. We, at times, may face barriers in our efforts and have to change our methods. 

Join us on Wednesday as we chat about Advocacy for Yourself and Others. Hear from others about different types of advocacy, methods they used, barriers they faced, skills they learned, and groups that focus on advocating for gyn cancer patients.

 

Guiding our discussion will be the following Topic Questions:

T1: What are some of the different types of healthcare advocacy?

T2a: What are some of the ways that you personally advocate for yourself, loved ones, your patients, or larger groups within healthcare?
T2b: What prompted you to "put on your advocacy hat"?

T3: What are some of the skills and tools you think are needed to be an effective advocate in the healthcare system?

T4: What are some of the barriers you have experienced in advocating for yourself and/or others? Any tips to pass along?

T5: What are some of the organizations, programs and resources that have helped you become a more confident advocate and/or provide opportunities for you to advocate? Feel free to share their twitter handle and/or website.

T6: Are there things that groups focusing on advocating for gyn cancer patients, those with and at-risk for hereditary cancer, and cancer in general could provide to better support you when it comes to advocacy? What issues in the gyn cancer community do we need to draw attention to? 

 

See you Wednesday!

Dee and Christina

Finding Balance: “Cancer Life” vs. “Real Life” a #CancerSM Chat 8/14/19

The #gyncsm community was happy to moderate the #cancersm joint cancer hashtag chat titled Finding Balance: “Cancer Life” vs. “Real Life” on August 14,2019 at 9pm ET. The #cancersm hashtag is used by a number of cancer hashtag communities, including #bcsm, #lcsm, #btsm, #mmsm and #ayacsm.

We had 36 participants join us to discuss how cancer patients and survivors find balance in their lives. You may find the complete transcript here and analytics here.

Below are a few highlights from the night's chat.

T1: When you think about finding a balance in your life after a cancer-related or tumor-related diagnosis, what comes to mind?

• i think of being able to do what I liked to do with my “old normal “—travel, go out in the evening to concerts, etc. Right now my consciousness is dominated by cancer related thoughts. #cancersm
• Balance is really hard to find when dxd as cancer sorta takes over your life, yet it's impt to try to find some. #cancersm
• I always considered myself a previvor due to family history, but after the genetic mutation diagnosis I felt much more urgency to give my own health attention vs. career and young kids #CancerSM
• It’s not so much about finding balance but more... rebalancing your scales. Cancer’s impacts are here to stay so it’s about trying to find ways to do your normal life with it always lingering on the sidelines. #cancersm
• When scan time comes up every six months, I find it hard to balance the anxiety with other priorities.
• Finding balance means something different to each of us. #cancersm
• I had no idea, in 2003, how DIFFICULT it would be to find balance. I still haven’t found it yet! #CancerSM

T2: How do you balance your treatment/healthcare schedule with work and/or taking care of children or elderly parents? 

• I try not to do anything cancer related before 10 am or after 7pm and on the weekends Sometimes that is not possible, but that’s my goal
• LOL.   with a smile? Schedule multiple appointments in the same day or after/before work hours so you don’t have to use all of your vacation time. Try not to have a breakdown on the NYC subway, but if you do, it’s okay. #cancersm
• setting boundaries in your own life is a real skill! I’m still learning. #cancersm
• Since my 3rd recurrence I’ve been disabled and spend my extra time/energy volunteering. Focusing on cancer related work means they understand when I’m sick. #cancersm
• when it comes to work you may need to avail yourself of legal benefits like reasonable accommodations, FMLA/state leave, etc. sometimes it can feel like asking for a favor, but those who are eligible should remember it’s a right! @TriageCancer has resources to help! #CancerSM
• @NavSurvivorship @TriageCancer @CancerAndCareer is another great one for that type of info #cancersm

T3: After diagnosis, did you change how you ate or how much you exercised? Did you start a new activity or stop doing an activity?

• There are growing data to support exercise to prevent cancer recurrence - and you get the bonus of stress relief!! #gyncsm #cancersm
• yes!! And expectations can be different but not lowered.
• @gyncsm I remained exercising because I knew it was important. It helped keep my energy up and I felt strong even though I was going through something that made me feel weak mentally. #cancersm
• I was an avid tennis player and gave it up as I am too tired. Not liking my new normal #CancerSM 
• Also some evidence that exercise helps mitigate treatment-related symptoms (fatigue, poor balance, etc). #gyncsm #cancersm
• You gotta cut yourself some slack. Exercise is always important. As is healthy eating. Sometimes neither is doable. That's ok. #cancersm

T4: How much of your "cancer life" do you share with those in your life that haven't been impacted by cancer or a tumor?

•  It’s part of me I can’t hide it. It’s made into who I am today #cancersm
• I was scared at first to share anything. But I slowly started to share on social media, and I got so much support. I enjoy sharing my #cancerjourney story and hearing others! #cancersm
• I talk about the brain tumors A LOT. I think it freaks ppl out, but I gotta talk abt them. Also talk about breast cancer risk too. There’s more than BRCA & I’m gonna say it! LOL #btsm #bcsm #pten #CancerSM
• Surprisingly perhaps, not that much. Not sure if many read my blog even. #cancersm
• hard to say. Most people I know have personal experience of cancer or a family member with cancer...or they are previvors! #cancersm
• Very little. Except in writing (twitter, blogs) but usually strangers are reading those. Absolutely NOTHING about my experiences with #lateeffects. It freaks people out (cancer from cancer treatment?) and I’m still emotional talking about it #cancersm
• I tell my hubby whatever I am thinking or feeling. With my Mom and Grandmother I am more reserved. They understand but also don't understand. They can take things out of context which just creates more issues that I don't want to have to deal with. #cancersm
• Disclosure is SUCH a personal decision and there is no one right answer. BUT, there can be long term ramifications and people should be empowered to know they have choices! https://t.co/ltMxWp6ZBd #cancersm
• I used to kinda keep cancer-land on Twitter and other on Facebook but they both blur now. In person, I sometimes chat about. I do go online mostly to converse with those who "get it". #cancersm
• Being an advocate I openly share with anyone who is interested. I try not to clog up my personal FB page with all Myeloma stuff. I’ve created a separate Myeloma page.#cancersm

T5: How soon after your diagnosis did you start volunteering and/or sharing your story? How do you balance family needs, personal needs, work needs and a desire to advocate for yourself and others?

• I went to a @livestrong survivor summit a year after my dx and my volunteering and advocacy grew from that experience. I learned I could make a difference and knowledge was powerful #cancersm
• I had to stop working because of cumulative effects of chemo, brain surgery (benign meningioma) and PTSD. Before that I was a data analyst and managed research projects. Research Advocacy is how I can benefit myself and others #cancersm
• Exactly 2 years! I went from not wanting to talk about it at all, to realizing I needed to. I’m still trying to figure out the balance part. But hey, aren’t we all? #cancersm
• During my dx, I performed some stand-up about it as a way to battle my shame around a colorectal dx. Then, quiet when I felt lost in the hurt. After attending a retreat with @yacancercanada almost 2 years after my dx, it really activated me as a patient voice. #cancersm
• Advocate burnout is real - for your own care and in your more general patient advocacy. @JBBC is doing some writing on this. Important topic. #cancersm
• I was the face of #childhoodcancer - always accepting invites to speak. After #lateeffects from tx, I didn't speak about it for 7 years. I felt like I failed survivorship. Now you can find me angry tweeting about cancer and NOT talking to my family/friends about it #cancersm

We like to end our chats with TIL standing for Today I Learned... 

TIL (relearned) - that I’m not alone! #CancerSM

TIL: how people accept cancer as part of their experience but don’t let it define them!! #cancersm

TIL that finding a balance, or a new normal, is a process that takes times and many different forms + it's an important consideration for anyone whose life is touched by cancer: from previvors to those no longer in active treatment/survivorship #cancersm #endcancer

TIL:Remission is living peaceful life , wish you all a peaceful life that you strongly deserve, bless you #CancerSM

Not so much a TIL, but more “today I am reminded” that we all struggle and are trying to navigate the aftermath of cancer. I am so thankful for this #cancersm chat for the connection and encouragement! Let’s keep working together!!

Mark your calendars and join us for our next #gyncsm chat on Wednesday, September 11th 9pm ET on "Breast and Ovarian Cancer Connections".   

During September,Gyn Cancer Awareness month  follow #IWishIKnew to hear from real Ovarian Cancer survivors about what they wish they had known before they were diagnosed-- and join the campaign! 

And remember to tweet things of interest to the gyn cancer community by using the #gyncsm hashtag. 

See you next month! 

Dee

#gyncsm Co-moderator