December 14, 2022 - Looking Back, Looking Forward

We ended the year with a chat titled Looking Back, Looking Forward. During the chat we reflected on what we did in 2022 and looked ahead to 2023. Sample responses may be found below. 

You may find a transcript here and analytics here. 

T1: What are some things you did in 2022 that brought you satisfaction? What steps have improved your overall quality of life?

• Got back to doing some family traveling this year and really cherish this time as both of my kids are now teens.
• I got organized and I asked for help. That has helped tremendously! I've also made time for meditation and breathing exercises.
• Family, fur-kids, friends and lake time. Reminding myself to keep my self-care a priority.
• In 2022 we made a lot of progress with our free awareness poster program for Gynecologist we are now expanding to include Retirement Centers.
• I am learning that I must take care of me so that I'm healthy to take care of others.

T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2023?

• Our CCAM theme this year was "Take Care of You in 2022." Self-care is a crucial part of our work in the cancer advocacy space.
•  I wish I could have done more fundraising we are deciding to stay located in Dallas and next year we plan on getting connected so we are able to get the funding we need to take care of our patients, survivors, and caregivers
• I wish I had taken more long walks with my dog in the local parks. And spent more time painting. Which makes me think I need to prioritize my time differently
• Giving myself permission to use my anxiety medication (before I’m already in an attack). Plans are for better sleep habits. 

T3: What are some of the "wins" for gynecologic cancer advocacy/treatment/care over the past year or so? Where are we seeing progress?

•  It has been great to see all the global collaboration around #cervicalcancer and #ovariancancer. Also was pleased to see @ocrahope expand a bit beyond the ovary in its focus. And always love how @IamCervivor embraces all areas of gyn cancer and women's health.
• Patients are advocating for better treatment. More research is being conducted. Talking about gynecological cancer. We still have more work to do.
• I know we're beyond thankful to have been a part of the launch of the National Breast and Cervical Cancer Roundtables! Super grateful @tamikafelder was able to represent @IamCervivor and our community with the opening remarks for @FLOTUS
• I am seeing more focus on ovary preservation whenever possible and why it should be done. Hopefully that will become standard of care. Glad I was able to keep mine.

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?

• I'd LOVE to see survivors continue to share their stories, for GYN cancer communities to join together to make a bigger impact, and for the patient voice to be included more.
• It's been my wish for 17 years now but I sure would love to see a detection test for ovarian cancer . I wonder if work on ctDNA might hold the key?
• I'd love to see continued collaboration across gyn cancer and cancer groups. I'd also love to see more programs on basic anatomy and health as a starting point entry to gyn cancer awareness.
• Providers to actively LISTEN to the patient and their concerns. Too many are so preoccupied that they don’t/won’t listen. Also, applies to insurance companies.

The next two questions related to the #gyncsm community and our mission. 

#gyncsm mission: Provide a place where - Those with a gynecologic cancer-related diagnosis and their caregivers can find reliable information and support and - Health care providers can gain insight into the patient experience, discovering what topics/issues are most important to gynecologic cancer patients. 

T5: What are some of the things you appreciate about the #gyncsm community being on Twitter? What do you find helpful about #gyncsm?

• I like that on Twitter there are so many varied groups that can pop in&out of discussions as there is interest. I also really appreciate the healthcare provider participation. Which on some patient community websites, those folks are not there - sometimes by design.
• I appreciate the researchers and gyn oncs who share the results of their studies or when they and other patient advocates tweet live from the oncology meetings they attend.
• I enjoy being able to connect with other survivors, physicians, nonprofits, etc. We cannot do this work alone and we are most certainly stronger together.
• Providers sharing knowledge. The sharing of support for gynecology oncology.

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? 

• Not sure I'm ready to start over anywhere. Heard about Hive and Post as things to maybe try. I belong to a patient community @smart_patients but it isn't the same as an open forum - different goals - and of course it isn't a place for awareness/education.
• Taking it day by day with . Currently on FB, IG and TT.
• I love that we are all able to connect and help each other be great advocates!

Our current plan is to hold 6 chats in 2023, meeting every other 2nd Wednesday at 8pmET. Save the date for our next chat Wed, Jan 11, 2023 at 8pmET when we’ll discuss “Survivorship”. Hope to see you then.

Interested in what might come next for the #gyncsm community in a post-Twitter situation? Keep in touch by joining our email list: https://docs.google.com/forms/d/e/1FAIpQLSd6wIqLCEihexj93JcUPuqO5eZDH3j0VuLyniIEG2pZV657FQ/viewform

Dee and Christina  

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

November 9, 2022 Recurrence - Reducing your Risk, Making Treatment Decisions

Tonight the #gyncsm community chatted about gynecologic cancer recurrences. Fifteen participants joined us for this important discussion which can be summed up in this TIL (Today I Learned): Recurrence is a tough topic, but avoiding the conversation can make things worse. Here's to having the hard conversations and mixing hope with being grounded.

You may find the transcript here and the analytics here. Scroll down for resources shared during the chat. 

Some responses to our questions appear below: 

T1: Was risk of recurrence something you spoke about with your healthcare team? What should doctors be sharing with patients about recurrence?

• Recurrence can be a super uncomfortable topic, but I just remember hearing from far too many ovarian cancer patients that they were completely blind-sided when they recurred - and then learned about the >85% recurrence rate.
• This is so true. We want to remain optimistic and provide hope, while also giving patients the information they need to make the best decision for them.
• No this was not a discussion my provider had with me. It was only after I finished treatment that I was knowledgeable enough to find that information and available resources for myself
• Yes I did. I did brachytherapy for stage1Bgrade1 uterine cancer to lower my chances of recurrence. Gyno onc & care team should talk to patients about their chances of recurrence, the most likely location of recurrence, & symptoms of recurrence to look out 4
• I tend to let patients guide my timing - sometimes I’ll get asked at the time of diagnosis or during active treatment. Most often, this seems to come up as surveillance starts. Your point about the importance that pts not be blindsighted is so true. 
• it was definitely understood esp at dx stage 3 but still not happy when it left and came back (and went away and came back, over and over like an unpleasant relative)

T2: How likely is a recurrence with each of the main GYN cancer types? Has overall risk changed in recent years with the availability of maintenance therapy options or other advances?

• Ovarian cancer has one of the highest recurrence rates of the gyn cancers. Over 85% - but that of course depends on staging, etc. for each individual person. @ocrahope has a breakdown on their page https://ocrahope.org/patients/about-ovarian-cancer/recurrence/
• Cervical cancer recurrence risk can range from 11-64%. Staging matters of course. Not sure about for uterine cancer. 
• Vaginal and vulvar cancer being much rarer, statistics are tough and generalization harder.
• seems inevitable with HGS ovca but with multiple PARP therapies as maintenance (with limited tx duration) we keep pushing the line out for new methods and therapies 
• This is why getting the best initial treatment of cancer is so important. Also why at every stage of the cancer continuum goals of care should be discussed.

T3: Are there things that have been found to reduce the risk of recurrence? What things have you tried or are still doing to reduce your risk?

• There have been some long term studies around diet and exercise in ovarian cancer. There are now also maintenance therapies to consider. There is not a whole lot under our control, but there are small things.
• I wish we understood more about the diet & exercise piece. Hopefully more work on this in the future. Things that are within our control can really feel empowering. 

T4: Fear of recurrence is common. What are some coping mechanisms to reduce the impact of that fear on daily living? What have you found helpful?

• I think that discussing and making a plan for continued monitoring and talking about what to watch for can help reduce anxiety. Also knowing what will happen - what are the steps - should a recurrence be suspected.
• Scanxiety is real. Have something that you treat yourself with on a scan day. Give yourself grace in the days surrounding scans. Name that feeling and then be kind to yourself. It is a normal reaction
• I have found exercise & wildlife/pollinator gardening have helped me deal with fear of recurrence
• Here's a nice resource from @CancerDotNet Coping With Fear of Recurrence https://www.cancer.net/survivorship/life-after-cancer/coping-with-fear-recurrence
• Unfortunately, I think it is something many of us don't think about or connect with immediately after first round treatment. We are literally still trying to catch our breaths but definitely something we should have a toolkit prepared for. "Break Glass..." mentality
• My recurrence happened 12 or so years later and by that time the dust had settled and I had to learn how to get back in the trenches again. It can be a process. 
• Ask about the benefits of routine scanning. They may not be worth the risks to everyone.

T5: How does treatment for recurrence differ from first-line treatment? What needs to be thought about differently than the first treatment plan?

• As @temkins mentioned earlier, goals of care may change - it can be time to review your values and goals knowing what you know about your first line experience and where you are in life now.
• Resource from @CancerDotNet - Dealing With Cancer that Comes Back https://www.cancer.net/survivorship/dealing-with-cancer-comes-back
• I am grateful for all the advancements that have happened in Gyn-Oc in general and hopeful for that that is taking place in EC. I have communities of friends in the right places that I am sure would help guide good decision making for my best outcomes and overall QOL
• The @theNCI has good info on their page for endometrial cancer recurrence #gyncsm https://www.cancer.gov/types/uterine/patient/endometrial-treatment-pdq#_334
• How you responded to your initial treatment, may guide your options for treatment of a recurrence. There are also more and more tests available that can guide treatment decisions.
• Staying informed and empowered is our best defense. Cancer/ recurrence is unpredictable but leaning on the things and people we depend is not as fragile.
• Depending on 1st line therapy & additional patient & tumor factors, potential options are systemic treatments or targeted radiation. Even if RT was used previously, depending location & prior dose re-irradiation is possible. Talking to your doctor is key #gyncsm #knowledgeispower
   

T6: Are there resources to help make treatment decisions when a recurrence occurs? Should trials be considered? Should patients ask about genetic and genomic testing?

• And get a second opinion. There may be more than one treatment option and finding the one that fits to your goals of care is worth it.
• For ovarian, @ClearityFnd has a Treatment Decision Support program https://www.clearityfoundation.org/treatmentdecisionsupport/; @theNCI has a Cancer Information Service https://www.cancer.gov/contact; @CancerCare has Resource Navigation https://www.cancercare.org/resourcenavigation
• @ASCO just updated the PARP guideline to reflect latest research on use of PARP as maintenance and in the recurrent setting. https://t.co/Z4NoDLCZ9e
• Anytime can be a great time to consider a clinical trial, but especially when experiencing a recurrence. It can be overwhelming, but there are great resources out there for those with interest in trials.
• Genetic and genomic testing has come a long way for many cancers. @PanCAN has an amazing tumor profiling program for pancreatic cancer. Patients should ask about what testing can be done
• Patients - esp #ovca and Endometrial should ask about genetic testing. Trials should be considered too. The @NCCN guidelines are helpful when looking at treatments for recurrence. And of course an in depth conversation about your options with your gyn onc.
• Clinical trials are always worth considering but especially at times of recurrence. And yes - in our current era, genomic & molecular testing is really important for treatment & counseling considerations. Ask your MD about this of they don’t bring it up first.
• there may have been updates to genetic testing options for inherited mutations (aka germline testing) depending on when someone was 1st tested. Check in w/ genetics provider to make sure your test is up2date

T7: What are some tips and resources to help patients and families cope with the emotional and physical impact of a recurrence?

• @cancercare has oncology social workers and @stepsthrough is a program for ovarian cancer patients needing emotional support.
• Emotionally I think talking to another women with a recurrence helps - Support groups and orgs like @CancerHopeNet , @SHAREing can provide information and support.

Our next chat, Looking Back and Looking Forward, will take place on Wednesday, December 14 at 8pm ET. We hope to see you then. 

Wishing all a very Happy Thanksgiving. We are thankful for our moderators, supporters, and all participants. 

Dee and Christina 

Co-Founders #gyncsm 

RESOURCES

Patients perceptions of communication with their health care team during chemotherapy for their first recurrence of ovarian cancer https://pubmed.ncbi.nlm.nih.gov/20667778/

@ClearityFnd Treatment Decision Support program  https://www.clearityfoundation.org/treatmentdecisionsupport/-

@CancerCare has Resource Navigation https://www.cancercare.org/resourcenavigation

@theNCI has a Cancer Information Service https://www.cancer.gov/contact

@theNCI has good info on their page for endometrial cancer recurrence https://www.cancer.gov/types/uterine/patient/endometrial-treatment-pdq#_334

@ocrahope has a breakdown on their page https://ocrahope.org/patients/about-ovarian-cancer/recurrence/

@CancerDotNet Coping With Fear of Recurrence https://www.cancer.net/survivorship/life-after-cancer/coping-with-fear-recurrence

@CancerDotNet Dealing With Cancer that Comes Back https://www.cancer.net/survivorship/dealing-with-cancer-comes-back

@ASCO updated PARP guideline including maintenance and recurrence https://ascopubs.org/doi/full/10.1200/JCO.22.01934

Related - May 12, 2021 Risk of Recurrence, Second Cancers, and Other Diseases #gyncsm Chat  http://gyncsm.blogspot.com/2021/05/may-12-2021-risk-of-recurrence-second.html

Recurrence - Reducing your Risk , Making Treatment Decisions

 

On Wednesday, November 9, 2022 at 8pm ET (7pm CT, 5pm PT) the #gyncsm community will chat about Recurrence. We will cover risk of recurrence, ways to reduce risk, how to deal with fear of recurrence, and deciding on treatment when a recurrence occurs. Please join us as we also share tips for coping with the emotional and physical aspects of recurrence.

Guiding our discussion will be the following Topic Questions:

T1: Was risk of recurrence something you spoke about with your healthcare team? What should doctors be sharing with patients about recurrence?

T2: How likely is a recurrence with each of the main GYN cancer types? Has overall risk changed in recent years with the availability of maintenance therapy options or other advances?

T3: Are there things that have been found to reduce the risk of recurrence? What things have you tried or are still doing to reduce your risk?

T4: Fear of recurrence is common. What are some coping mechanisms to reduce the impact of that fear on daily living? What have you found helpful?

T5: How does treatment for recurrence differ from first-line treatment? What needs to be thought about differently than the first treatment plan?

T6: Are there resources to help make treatment decisions when a recurrence occurs? Should trials be considered? Should patients ask about genetic and genomic testing?

T7: What are some tips and resources to help patients and families cope with the emotional and physical impact of a recurrence?

This Cancer.net article Dealing With Cancer that Comes Back https://www.cancer.net/survivorship/dealing-with-cancer-comes-back and this OCRA article on ovarian cancer https://ocrahope.org/patients/about-ovarian-cancer/recurrence/ provide helpful information.

We hope you can join us!




Dee

#gyncsm Co-founder

September 14, 2022 Clinical Trials: When, How and For Whom

There is always so much to discuss about Clinical Trials and this month we concentrated on who should consider a trial, how to finding trials, eligibility, consent as well as what important questions you  should ask. You may find our transcript here and analytics here. 

Below are sample responses and resources shared during our chat. 

T1: What are some basic facts and key points about clinical trials that people should be aware of?

• Infographic covering about the phases and types of trials. There are lots of great resources out there even if you are just starting out. https://www.nih.gov/sites/default/files/about-nih/public-trust/clinical-trials-infographic.pdf
• Women of color are underrepresented in clinical trials . https://www.medstarhealth.org/blog/gynoc-equity
• A lot of trials in the cancer space are testing new treatment vs. current treatment. So participating does not put you at risk for no treatment or less treatment. In fact, you often are super well monitored whether standard or cutting edge
• #clinicaltrials have 3 phases Phase 1 – small group of patients test for safety and side effect; Phase 2 how well does treatment work Phase 3 large group of patients confirm how well treatment works, side effects, compare to other treatments
• Trials are voluntary and also you *always* have the right to say no and leave a trial
• Resources on Clinical Trials #gyncsm @GYNcancer Clinical trial basics https://www.foundationforwomenscancer.org/clinical-trials/clinical-trials-basics/ @GYNcancer Understanding Gyn Clinical trials https://www.youtube.com/watch?v=UFGb8nQkE8c&feature=youtu.be @SGO_org Gyn trials what it means for you video https://www.youtube.com/watch?v=ZdOyBbAvc_c

T2: When should a clinical trial be considered? Does a patient need to bring up their interest in participating in a trial?

• Trials are NOT just a last resort. Trials can be for any part of your cancer experience - even risk reduction pre diagnosis, for nutrition, long-term survival, etc. Any time is a good time to participate! 
• While patients shouldn't always have to start the conversation, they probably should. There are resources to help patients broach the conversation with their doctors.
• There are many different types of clinical trials and can be targeted to different populations and needs. It is important to ask your doctor what clinical trials are ongoing so that you can decide if any are right for you.
• It's great to learn about what clinical trial options are available at any phase of life/treatment. I used to think trials were just when there's no standard of care. I didn't realize we can research them on our own as well as through providers/hospitals
• It also depends where you are at. Sometimes it feels strange being heavily recruited into a trial with a new cancer diagnosis. Other times it feels hard to find a trial one qualifies for even when willing. Varies depending where patient is at.

T3: Before starting their clinical trial search, what information do patients need? What is helpful to consider/decide ahead of time?

• Patients need access to their records... which isn't always the easiest. Patients should decide if they are willing/able to travel for a trial. Patients should think about their own goals/motives in participating to guide decisions and be clear with healthcare team
• Patients should know their type / subtype, stage, if they have been tested any genetic mutations. Consider how far you are willing to travel
• t's good to know where the trial is located, how time & appt. intensive it is, how risky of course, & if expenses/costs will be covered. Also, it's VERY important to know if it's blinded or unblinded, & the phase & what those things mean
• Clinical Trial Jargon Busting Guide from @power4patients: https://powerfulpatients.org/2019/12/02/understanding-clinical-trials-a-jargon-buster-guide/
• It's a good idea to know why you'e considering a clinical trial before trying to pick one. @nih has a great website resource. https://beta.clinicaltrials.gov/
• This @theNCI site offers questions you should ask re-safety etc https://www.cancer.gov/about-cancer/treatment/clinical-trials/patient-safety?cid=eb_govdel
• A great resource is https://clinicaltrials.gov/ which provides a starting point of available trials. You can take this information to your doctor & have a more in depth discussion of what eligibility criteria and requirements are needed for a particular trial. 

T4: How can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers?

• For ovarian cancer, @ClearityFnd has some great #ClinicalTrial resources https://forms.clearityfoundation.org/find-clinical-trials/ as well as a Treatment Decision Support program
•  this @theNCI site talks about how to search for trials . There is a chat feature on the site too! https://www.cancer.gov/about-cancer/treatment/clinical-trials/search?cid=eb_govdel
• Go to https://beta.clinicaltrials.gov/ There's just so much info, and you can input the type of trial you want.
• @OCRAhope has a search engine for finding trials https://app.emergingmed.com/ocra/home/

T5: Who is a “good candidate” for a trial? What is a study protocol? Where can patients get help on the terminology used like informed consent, eligibility, exclusion criteria, etc.?

• @CancerDotNet is a great starting point for many cancer-related topics. Here's their resources page for learning about Clinical Trials and how you might get involved https://www.cancer.net/research-and-advocacy/clinical-trials
• This depends on the specific trial. All trials have different requirements and not meeting the requirements for one does not mean not meeting the requirements for all
• to understand what you need to know about eligibility check out this from @americancancer https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/what-you-need-to-know/what-does-a-clinical-trial-involve.html
• Trials do have "rules" about who can participate. which are in place to make sure the research can answer the questions it is trying to. In recent years, more attn is being paid to making sure these rules are needed for each trial and are not serving as barriers.
• Health equity researchers and advocates are also looking carefully to see if the trial requirements are keeping certain populations out of trial participation and working to build more inclusive language
• It can be overwhelming searching for a trial. It helps to have navigators to narrow down possible matches if at all possible. Patients also need to know we can look into trials outside our hospitals. I didn't always know that

T6: What questions are important to ask when contacting the study team? What factors should be considered? 

• Your doctor may act as a liaison, but you can reach out to the study team directly w/ questions or concerns or just to get more information. Some study teams are better at marketing and communication than others... so patience is another tool when it comes to trials.
• So many ? * # days you will be on site for testing or treatment( if a treatment trial) * types and # scans , blood tests * compensation for travel * how and who to report side effects if you have them? * how long is the trial?

T7: For those who have been involved in a #clinicaltrial: What phase trial was it? What benefits or drawbacks did you experience?

• In maintenance phase, I was in blinded study. It was over 2 years ago & I still don't know if I got a Parp (or not) or Immuno (or not) which would have bene helpful during recurrences. That's been a challenge for me (& medical team)
• t can feel important to be in a trial, to maybe advance science even if one can't benefit personally. And, there are real risks with doses, drugs, & also that even in trials errors happen (medical, scheduling wise, etc. & it can be consequential).
• I was in a ph 1 treatment trial on initial dx. I appreciated having a study nurse I could call with any ?'s I had. Drawback: Long treatment days - 12 hours
• Anyone in the U.S. can participate in the NIH @AllofUsResearch project: https://allofus.nih.gov/

If you have not participated in a clinical trial, what are some reasons you did not?

• I didn’t do a trial or think to ask. Knew I had cancer, found during hysterectomy, but thought to be early. Final path showed 3a. Chemo started one week after my surgery follow up. It was a blur
• There are definitely risks and benefits to be weighed when deciding about a clinical trial. Know your own goals. Make up your own mind. It is okay whatever you decide with the info you have.

We not only chatted about Clinical Trials, we also celebrated our 9th Anniversary as a chat and community on Twitter . Thank you to everyone who has supported us these past 9 years. 

There will be no #gyncsm chat in October 2022. 

Save the date for our next chat on Wednesday, November 9, 8pmET when we’ll discuss Recurrence - reducing your risk and making treatment decisions.

See you in November!

Dee and Christina

Clinical Trials: When, How and For Whom - 9/14/22

It's Ovarian Cancer and Gynecologic Cancer Awareness month! 

Thanks for all you do to raise awareness.

We hope you will join Christina and I on Wednesday September 14, 2022 at 8pm ET as we chat about Clinical Trials. We will concentrate on when and who should consider clinical trials and how to find and take part in a clinical trial. If you have taken part in a clinical trial, we invite you to join us and share your experience and help others feel comfortable taking part in a trial.

And another reason to join us is to help us celebrate our 9th Anniversary as a chat and Twitter community. 

 Guiding our discussion will be the following Topic Questions:

T1: What are some basic facts and key points about clinical trials that people should be aware of?

T2: When should a clinical trial be considered? Does a patient need to bring up their interest in participating in a trial?

T3: Before starting their clinical trial search, what information do patients need? What is helpful to consider/decide ahead of time?

T4: How can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers?

T5: Who is a “good candidate” for a trial? What is a study protocol? Where can patients get help on the terminology used like informed consent, eligibility, exclusion criteria, etc.?

T6: What questions are important to ask when contacting the study team? What factors should be considered?

T7: For those who have been involved in a #clinicaltrial: What phase trial was it? What benefits or drawbacks did you experience?
If you have not participated in a clinical trial, what are some reasons you did not?

For more information on Clinical Trials, here's a Clinical Trial Jargon Busting Guide from PEN: https://powerfulpatients.org/2019/12/02/understanding-clinical-trials-a-jargon-buster-guide/

And did you know that there are different types of clinical studies? Check out the NIH infographic below which shares some helpful information.

See you on Wednesday!

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

June 8, 2022 Gyn Cancer Research News #SGOmtg & #ASCO22

This month we reviewed the research presented during the SGO and ASCO Annual Meetings. We had twenty-six participants and 1.2 million impressions. You may read our transcript here and analytics here. 

Resources may be found at the end of the post. 

T1: What #SGOMtg presentations did you personally find of most interest? Anything practice-changing? 

• @SamBoseMD's study on RAD51 foci formation predicting DNA damage repair deficiency, and how PARP inhibitors may help more women with gyn #leiomyosarcoma
• I appreciated the study on older cervical cancer patients and how the current guidelines to stop screening after 65 are not working well in practice as there are conditions that need to be present to stop. https://www.cancertherapyadvisor.com/home/news/conference-coverage/society-of-gynecologic-oncology-sgo/sgo-2022/cervical-cancer-screening-guidelines-may-need-revision/
• For me Emeline Aviki's ,presentation on “Overspending on Dose-Specific Packaging of Lenvatinib for Endometrial Cancer,” which led to @EisaiUS announcing that it will expand its dose exchange program to cover dose reductions. https://www.sgo.org/news/eisai-adds-all-indicated-doses-to-lenvatinib-dose-exchange-program-after-research-presented-at-sgo-2022-annual-meeting/

T2: Which #ASCO22 studies do you think might be of most interest to patients?

• The ATHENA-MONO trial was very impressive - confirming benefit of #PARPi in the frontline maintenance setting for women with #OvarianCancer #ASCO22
• @NassifElise's presentation on the gut microbiome & response to #immunotherapy. Eat more fiber! (Unless you're prone to bowel obstructions)
• study done in Japan : bevacizumab (Avastin) added to first-line chemotherapy led to statistically significant improvements in PFS and (OS) in patients with advanced ovarian clear cell carcinoma (OCCC). Important those those with clear cell
• #ClinicalTrial examines combo #immunotherapy for #ovariancancer #gyncsm #ASCO22 #womenshealth https://www.uc.edu/news/articles/2022/06/trial-examines-combo-immunotherapy-for-ovarian-cancer.html

T3: What are some of the current "hot topics" in gynecologic cancer research? Are there things still up for debate that patients/survivors/advocates should be aware of?

• For me ~ anything that involves #immunotherapy or #targetedtherapy is something I want to know more about in #cancer treatment 
• There seems to finally be some great momentum around endometrial cancer and addressing disparities. That is exciting to see and long overdue
• Maximizing #treatment/#maintenance in HRD test negative #OvarianCancer remains a critical unmet need! 
•  Better understanding of how we can use molecular profiling in endometrial cancer to make treatment decisions is an important area of ongoing research. Where can we de-escalate treatment and who needs a more aggressive approach? 

T4: What research on palliative care, exercise, nutrition, survivorship do you think will impact patients lives the most - or that survivors should ask their providers about?

• Studies showing ethnic minorities, especially black women, are less likely to understand their prognosis, less likely to use hospice and more likely to end up in the ICU. We need better communication! 
• Don’t be afraid to ask about #sexualhealth or body image concerns. We don’t talk about these issues enough and they are so common in the wake of cancer treatment. 
• I saw a study on better genetic education for ovarian cancer patients, but I don't remember a lot of quality of life studies in general. It was nice to see emphasis on financial toxicity though. 
• Genetics and genomics become more and more important for cancer patients to understand and advocate for treatment plans that include testing.
• COUNSELING! Diagnosis, treatment, aftercare, terminal care. It’s important for EVERYONE involved.
• @fumikochino has done great work in the area of financial toxicity.
• New Small Study finds virtual mindfulness-based intervention for sexual health as a feasible treatment option for #ovariancancer & #breastcancer survivors ⁦@NewsMedical⁩ #gyncsm #bcsm #womenshealth https://t.co/RZDW2qK9uA

T5: Which equity issues were presented at #SGOmtg and #ASCO22? Are we seeing progress?

• T5 Black cancer patients aren’t offered the chance at clinical trials--but over 80% would consider joining one if offered. #gyncsm #ASCO22 The survey was led by Stephanie Walker.
• The data on black patients and endometrial cancer is sobering. So was the ASCO study about black patients not being offered clinical trials. Look forward to seeing studies with practical steps and program models.
• #COVID-19 Outcomes in Patients With Gynecologic Cancer ⁦@CancerTherAdvsr⁩ #gyncsm #ASCO22 #womenshealth https://www.cancertherapyadvisor.com/home/news/conference-coverage/american-society-of-clinical-oncology-asco/asco-2022/covid-19-gynecologic-cancer-patient-outcomes/

T6: For our last topic, we'll let our participants ask any questions they have about recent gynecologic cancer research. Also, what do you want to see research resources focused on? Are there gaps in research you would like to see addressed?

• I'd like women with gyn #leiomyosarcoma who are treated in a private practice to know that they can get a second opinion from a #sarcoma medical oncologist. Collaboration helps patients know all of their options for treatment.
  
• T6 I heard about women having PARP resistance - like becoming platinum resistant. I wonder how many cycles of PARP does this start? 
• https://www.lmsdr.org/ is partnering with @SARCtrials to help @JoannaPrzybyl with her research on ctDNA in #leiomyosarcoma. It would be great if ULMS could be better detected before surgery
• We are excited about our @MDAndersonNews #PARPi alone trial for women with #OvarianCancer that have #BRCA mutations and need neoadjuvant therapy! Data coming soon

We will not be chatting in July but we hope to see you on August 10, 2022 at 8pmET for our chat on Advocacy for Yourself and Others. 

Have a safe July! 

Dee and Christina

 

RESOURCES 

Search Twitter for #SGOmtg  #ASCO22  #gyncsm  #leiomyosarcoma

 

SGO meeting : 

@stigetta - https://ocrahope.org/2022/04/ovarian-cancer-highlights-society-of-gynecologic-oncology-meeting-2022/

ASCO Post https://ascopost.com/Meetings/?m=SGO+2022+Annual+Meeting+on+Women%E2%80%99s+Cancer

Cancer Network https://www.cancernetwork.com/conference/sgo

Cancer Therapy Advisor https://www.cancertherapyadvisor.com/home/news/conference-coverage/society-of-gynecologic-oncology-sgo/sgo-2022/

ASCO Meeting :

ASCO Abstracts https://conferences.asco.org/am/abstracts-posters

ASCO Post https://ascopost.com/Meetings/?m=2022+ASCO+Annual+Meeting