Survivorship - January 11, 2023

The #gyncsm community will start out 2023 with a chat about survivorship. We hope you can join us at 8pm ET (7pm CT, 5pm PT) on Wednesday, January 11, 2023.

The NCI definition of survivorship states:

In cancer, survivorship focuses on the health and well-being of a person with cancer from the time of diagnosis until the end of life. This includes the physical, mental, emotional, social, and financial effects of cancer that begin at diagnosis and continue through treatment and beyond. The survivorship experience also includes issues related to follow-up care (including regular health and wellness checkups), late effects of treatment, cancer recurrence, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience.

We will examine the needs and support at different stages of survivorship - initial diagnosis, during treatment, as well as care after treatment ends. 

T1: What comes to mind when you hear the term "survivorship"?

T2: Do you seek out survivorship stories? What do you find helpful about patient stories?

T3: Which effects of survivorship - i.e. physical, emotional, social and financial - have impacted your life most?

T4: What are some of the types of support patients need at diagnosis, during treatment, and after? What tools or support have helped you with your survivorship?

T5: Do you experience a fear of recurrence? If so, what do you find helpful when dealing with that feeling?

T6: Do you ever feel survivors' guilt? How have you dealt with that?

T7: What has been your experience with follow-up and long-term care? After initial treatment, did you receive a survivorship plan? If so, how has it helped you during your survivorship?

Join us as we share organizations and resources to help you have the best survivorship possible.

See you on Wednesday, January 11th, at 8pm ET.

Dee and Christina

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