Looking Back, Looking Forward Chat - December 14, 2022

We invite you to join the #gyncsm community as we close out our 2022 chat series. On December 14th our topic will be Looking Back, Looking Forward - a chat topic we have not covered since December 2015. We will use our one-hour time slot to reflect back on 2022 and share our goals heading into 2023 - for ourselves, for gyn cancer advocacy, and for the #gyncsm community. We continue to monitor and assess our Twitter-based Community under the new ownership of Twitter and will include that in our discussion. Here's our six Topic questions:

T1: What are some things you did in 2022 that brought you satisfaction? What steps have improved your overall quality of life?
T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2023?

T3: What are some of the "wins" for gynecologic cancer advocacy/treatment/care over the past year or so? Where are we seeing progress?
T4: What are some areas within the gynecologic cancer space that you want to see more progress made over the next year? Any projects/action steps you already have planned?

T5: What are some of the things you appreciate about the #gyncsm community being on Twitter? What do you find helpful about #gyncsm?
T6: What are your plans for staying or leaving Twitter? Which other platforms have you tried or are you considering? Any thoughts on the future of #gyncsm and what you'd like to see?

We hope you can join us at 8pm ET on Wednesday, December 14th and share your thoughts. 

Interested in what might come next for #GYNCSM post-Twitter? Join the #gyncsm mailing list: HERE

Dee and Christina 

#gyncsm Co-founders

Jan 15, 2020 - Goals of Care Throughout the Cancer Experience

As we start a New Year, many people make resolutions or aspirations. We thought it the perfect time to chat about Goals of Care Throughout the Cancer Experience. We had 18 participants join us to discuss goals from initial diagnosis, through treatment and after treatment. While we will provide some sample tweets posted during the chat in response to our topic questions, you may find the complete transcript here and the analytics here. 

T1: At diagnosis, what are some of the goals for care? Patients - What were your main goals?

• A1: I think the main goals should be 1. Clear understanding of diagnosis. 2. Clear understanding of treatment plan. 3. A comfortable rapport with the care team where all concerns, questions, and side effects can be openly discussed now and later.
• In addition to learning everything I could - Of course my goal was a cure - for forever . But my short term goal was making to my niece’s wedding the following May.
• T1. I didn’t understand the difference between remission and cure so had some unrealistic expectations
• I planned to get cured of Stage 4 disease and get back to normal life!

T2: Patients - Is a specific discussion of "goals of care" something you had with your doctor? Did they help you define your goals? 

Providers - Is this a discussion that you have with your patients and, if so, how often?

• T2: My gyn doc who tested me pretty much referred me along to other providers. My breast surgeon and I specifically discussed goals, which I appreciated. But I think I should spend more time thinking and actually write some things down. For myself and clarity in appts
• A2: I started treatment during summer, so my oncologist asked me about my summer and vacation plans. I appreciated this! My main goal was being well enough for my brother’s birthday, a month and a half after my first surgery.
• T2: I was in such shock at diagnosis (was told a likely cyst) that it was cancer. That was post-op day with nerve complications. I wasn’t prepared for extent/length of surgery. It felt like I was put on a treatment treadmill I couldn’t slow down.
• T2: An actual written plan of care done together would be great. There’s a big learning curve regarding disease, treatment, maintenance & clinical trials. It’s overwhelming for a while.
• As a provider, I think this is critically important to discuss as early as possible! Incorporating shared decision making with a patient, her provider and the family can help set realistic (and hopeful) expectations.

T3: When considering a treatment or clinical trial do you have a discussion about the research results or guideline recommendations? Do you try to match these to your/the patient's specific goals/needs?

• A3: This is obviously a health care provider question, but I as a patient was sure to make sure my voice was heard for my treatment preferences. I also regularly ask about clinical trials and are happy to do them if is a good fit for me.
• Treatment preferences can be important to speak up about and be sure that the "standard of care" or whatever is being offered you fits with your goals/daily life and preferences
• I would encourage every patient to ask her provider at every treatment decision making time point if she would be eligible for a trial—often this is how we can offer exciting, new therapies (sometimes in addition to the standard of care)
• A3 Initial DX I researched the trial I was offered and also talked to my PCP about it. When I recurred I asked for all my options then I took a month to research what option I wanted to do. I was offered a clinical trial but chose surgery then chemo. 
• T3: #gyncsm I was interested in clinical trials, alternative/integrative approaches, things such as fasting during chemo & nutrition but those were not available (as would have been my plan). Made most of drug trials available & clinical team explained process beautifully.
• Many gyn cancers do have treatment guidelines available from @NCCN Patients can ask if their doctor is following the guidelines and have a discussion about why a variation for your case. So much is put on patients when diagnosed
• @ASCO has clinical practice guidelines too that can be reviewed 

T4: What are Progression Free Survival (PFS) and Overall Survival (OS)? How do these endpoints line up with individual treatment goals? with clinical trial goals?

• Clinical trials have end points - Progression free survival or overall survival. Some trial results have better PFS but may not offer any longer overall survival
• T4. Aaah! One of my fave topics! There is much confusion in the PARP community about OS vs PFS. Many patients want PARPs because they think they’ll live longer.
• T4: Here's the best brief overview of the concepts of progression free survival vs. overall survival: https://www.focr.org/clinical-trial-endpoints Any of our healthcare folks have a boiled down couple sentences? So much terminology hurdles in cancer.
• T4: From patient perspective, progression-free survival is jargon & focus on it rather than cure/survival alienating, academic or for benefit of battling drug companies. I’d always thought cure was goal of oncologists & research. Reality has been sobering/depressing.
• @theNCI does have a Cancer Terms widget/dictionary that can be helpful https://www.cancer.gov/publications/dictionaries/cancer-terms
• Yes. It’s not always clear what prolongs length vs. quality of life, what is done with intent to cure rather than delay recurrence, & benefits & risks of them if BRCA negative.
• T4 providers use endpoints like progression-free survival and overall survival to understand the impact of particular treatment on the cancer... but other endpoints like patient reported outcomes (PROs), time without symptoms, quality of life may be as (or more) valuable

T5: How do goals of care change over time? Are they reassessed upon recurrence? How can readjusting goals impact treatment decisions and also daily living?

• A5: I really think this comes down to having a good relationship with care team. A recent example: At my last appointment in December I requested my cancer follow ups to go to yearly instead of bi-yearly. I explained why and they allowed it!
• 5. I realized after end of frontline that I might recur and have to let go of my”cure” fantasy. When I did recur, my goal was to get on a PARP at end of 2d line treatment and have me a good long remission.
• T5: Adjusting goals is part of the process but seems bittersweet - freeing, maybe clarifying, but also tough. As mentioned, having that good relationship with your doctor where goals are part of discussions can help set clear expectations and ease readjustments...
• Side effects impacted my treatment on recurrence so my goals had to change. As we learn more about mutations that could change our goals and treatment too.
• A5 Right now my goal of care is to educate as many women as I can about EC and in the process heal from the scars it has left behind. I’m finding strength there and know now that You fear what you don’t understand

T6: What are some things to consider when setting patient goals for care and in communication between providers and patients about goals of care? What are your tips?

• Care team, be honest! That is what helped me map out some of my future after my diagnosis. They didn’t tell me “you take the thyroid out and you’re done!” A line often repeated by those who don’t understand #thyroidcancer
• It doesn’t hurt to seek outside help. There are lots of resources if you need them. Therapy, a pastor, support groups. Getting help is courageous.
• Being sure we have access to the best and latest information on treatment for our cancer , including clinical trials is crucial in helping set goals of care.
• @abrewi3010, in addition to advocating for goal discussions at every care interaction, suggests that patients share about themselves as a person and get to know their provider as a person. Even a couple minutes can lay foundation for working as team
• A6 Always consider a patient’s level of support. Emotional, Physical and Financial. It has a direct relationship with compliance.
• Great question. I think matching the care to the patient rather than the patient to the care. Being partners & collaborators & open to new ideas, possibilities & approaches.

A recent study involving survivor/advocate @Stigetta "Ovarian cancer survivors' acceptance of treatment side effects evolves as goals of care change over the cancer continuum" was shared https://www.gynecologiconcology-online.net/article/S0090-8258(17)30885-5/abstract

We ended our chat, as we always do, asking for participants to share what was learned during the chat in what we call the TIL - Today I Learned. Here was one response:

TIL that goals should be discussed more at every appointment. Both care goals (exercise, diet, sticking to medication routine) and patient’s goals (school, marriage, new job, birthdays.) Once again: Communication, communication, communication!

Please join us for our next chat on February 12, 2020 at 9pmET when we will be discussing Cancer Pre-hab.

Dee

#gyncsm Co-founder

Goals of Care Throughout the Cancer Experience

Christina and I hope you will join us one week later this month on Wednesday, January 15th at 9pm ET for our chat discussing Goals of Care Throughout the Cancer Experience. We will touch upon goals of care on initial diagnosis, as well as on recurrence. We will also chat about goals when you are involved in clinical trials and the value you place on drugs that provide Progression Free Survival (PFS) but not necessarily show benefits of Overall Survival (OS).

So start off the New Year by meeting, supporting and being supported by others who have been impacted by gynecologic cancer.

Our discussion will cover the following topic areas:

• Goals for care at diagnosis
• Discussion of goals with care team
• Matching goals to treatment plan
• Endpoints - Progression Free Survival (PFS) vs. Overall Survival (OS)
• Readjusting goals
• Tips on setting goals for care

Also during January, which is Cervical Cancer Awareness Month, please see the website of our supporter, Cervivor for specific information about cervical cancer .

See you on the 15th.

Dee
#gyncsm Co-founder

September 14, 2016 Chat - Gynecologic Cancer Advocacy & #gyncsm Community Goals

Today we celebrated our third anniversary as a chat and Twitter cancer community.

We want to take this opportunity to thank this year's health care moderators, Dr. Rick Boulay, Dr. Shannon Westin, Dr. Merry Markham and Dr. Anne Becker-Schutte. We also want to thank one of our founding health care moderators, Dr. Don S Dizon and Dr. Matthew Katz who wrote our Tweet Disclaimer. And to all the organizations and individuals who supported us by sharing our tweets and information about our chat, thank you.

Since September is Gynecologic Cancer Awareness month it was fitting that our chat topic was Gynecologic Cancer Advocacy and #gyncsm goals. We had 34 participants join us for our chat and had over 1.5 million impressions. Additional analytics may be found here.

The questions we used to guide our discussion appear below with some sample responses. Please see our transcript here for the complete responses and the names of additional advocacy organizations.

T1a: What skills have you gained in learning to advocate for yourself / loved ones / patients?

• Using social media as a way of promoting awareness. Advising women to journal their symptoms.
• Still working on speaking up for myself when I'm in the doctor's office. A work in progress. I do fine speaking up re: my kids
• Have learned importance of going into appts prepared as much as possible.  

T1b: Being your own best advocate when it comes to your health isn't always easy. What are some tips and resources?

• Picking up new words quickly. If in person, asking what they mean, how they are spelled, etc., helps me learn.
• If possible, bring a buddy. A second set of ears, voice for clarification, note-taker, etc can make a huge difference
• Society for Participatory Medicine @s4pm is a great group. Talking w/ other patients. @intakeme has ePatient101 online course 
• @power4patients another good resource. @smart_patients community and other communities

T2a: What groups/organizations are you involved w/ that advocate and raise awareness for women's cancer? 

• @Sgo_org @GYNCancer @OCRF
• NOCC of course
• Advocacy organizations are vital to raising awareness @GYNCancer [correct tag @NOCC_national] @OCRFA @CancerSupportCm @gyncsm 

T2b: How will you be advocating for yourself and others this month? Share as well any events/campaigns others can join.

• wearing my teal ribbon bracelet all month and starting conversations, wearing teal on tuesdays, RTs and posts on my personal FB
• Just gave a lecture to our ovarian cancer survivor group, keeping teal on whenever possible, bringing up gyn cancer on twitter!
• Just completed a documentary with PBS "Close to Home: cancer survivorship" airs next week on PBS 39. 

T3: For gynecologic cancers, what are the barriers in raising awareness? 

In advocating for improvements in care?

• All rare diseases are tough to shine the light on
• Women can be afraid to discuss gynecologic cancers - it can be an uncomfortable topic - they feel alone 
• Still see a lot of taboo with gyn cancers. Also, many women are not educated about their own bodies. That is the starting point.
• advocates of less prevalent cancers can definitely gain by working together to amplify their voices - collaborating where can

T4a: In the past 3 yrs, have you seen changes/progress in GYN cancer awareness, treatment and advocacy? 

• Huge patient advocate presence on social media - easier for patients to interact with each other and share knowledge
• There has been a strong increase in advocacy efforts through resources and education from partners like @GYNCancer [correct tag @NOCC_national] @OCRFA
• The cancer moonshot can only help. The PBS documentary on cancer last year helped too.
• Progress with the Immuno-oncology drugs and other biologicals. Slow but steady improvement

T4b: What issues do you think it's important for the #gyncsm community to advocate around?

• Something I wonder about is uterine/endometrial cancer... why no large national organization when more cases than cervical, ovarian
• Encouraging clinical trial participation
• survivorship planning, end of life too
• patient reported outcomes, quality of life, survivorship

T5: What can we do to better fulfill [#gyncsm's] mission? How can we bring more gyn cancer survivors into our community? 

• I'd love to find more participants.
• I'd love to see a .gov or neutral supported site with patient communities listed dr's could feel comfortable referring patients too. 

During tonight's chat we launched our 2016 #gyncsm Community Survey. All followers and chat participants are invited to answer the short 10 question survey which is located at www.surveymonkey.com/r/STHG6RC .
We will collect responses from today until October 11, 2016.

We hope you will join us on Wednesday , October 12th at 9pmET for our chat Warrior? Fighter? The words we use... .

Remember you can always continue this conversation on Smart Patients at https://www.smartpatients.com/gyncsm .

Dee
Co-founder #gyncsm 

Gynecologic Cancer Advocacy & #gyncsm Community Goals - September 2016 Chat

It is Gyn Cancer Awareness Month! What better time to chat about Gynecologic Cancer Advocacy than September. Christina and I are also excited to celebrate #gyncsm's 3rd Anniversary as a chat and a Twitter community. Over the past three years we hope #gyncsm has provided patients, survivors and caregivers of women impacted by gynecologic cancer a place to gain valuable information about gyn cancers, available treatments and emotional support. For the healthcare providers and researchers we have welcomed, we hope #gyncsm has provided insight into the experiences of those impacted by gynecologic cancer. We will wrap up this month's chat speaking with you - our #gyncsm community members - about our goals.

We hope you will join us as we delve into these topic questions:

T1a: What skills have you gained in learning to advocate for yourself / loved ones / patients?

T1b: Being your own best advocate when it comes to your health isn't always easy. What are some tips and resources?

T2a: What groups/organizations are you involved w/ that advocate and raise awareness for women's cancer? 

T2b: How will you be advocating for yourself and others this month? Share as well any events/campaigns others can join.

T3: For gynecologic cancers, what are the barriers in raising awareness? 

In advocating for improvements in care?

T4a: In the past 3 yrs, have you seen changes/progress in GYN cancer awareness, treatment and advocacy? 

T4b: What issues do you think it's important for the #gyncsm community to advocate around?

T5: What can we do to better fulfill [#gyncsm's] mission? How can we bring more gyn cancer survivors into our community? 

Another exciting part of this month's chat will be the launch of our 2nd Community Survey.

This short 10-question survey will launch on the day of our chat, September 14, 2016 and will end on October 11, 2016. We hope to learn more about our members, your background, topics of interest to you, and what we can do to improve your experience and our #gyncsm community.

So be sure to join us on Wednesday, September 14, 2016 at 9pm ET (for your local time click here).

See you then,

Dee
Co-founder #gyncsm

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