April 8, 2020 Open Mic on COVID19

Thank you to everyone who joined us tonight for our Open Mic chat on COVID-19.

We were happy to have the co-chairs of the SGO COVID-19 Task Force, gyn-oncologists Amanda Nickles Fader, MD (@amandanfader), Joshua Kesterson, MD (@KestersonJoshua), Bhavana Pothuri, MD, MS (@BPothuri) and patient advocate and Task Force member Annie Ellis (@stigetta) join us for this important discussion. 

You may find the transcript here and the analytics here.

We covered a number of different areas related to COVID-19 and the gyn cancer patient experience. 

Concerns and Difficulties  

• I’m having a really hard time deciding whether to go for my next blood test and then infusion during COVID-19 risk. I skipped one infusion already
• I am concerned about surgery delays in light of COVID 19
• Every surgical procedure potentially exposes the patient and a dozen HCW to #COVID19. #PPE is still an issue in many places. And access to testing has been an issue as well.
• Not too bad since doing chemo gave a taste of isolation. But i miss going outside to stay active 
• Many lynch syndrome patients get annual tests, especially colonoscopies, so having them put off by even a few months can be stressful 
• The human connection is so important and what I love about caring for patients. With social distancing, it is challenging. 

SGO Task Force - Guidelines and Care

• @SGO_org COVID-19 Task Force has been working around the clock to develop strategies for doctors to continue to provide the very best care possible to their patients during these difficult times 
• Goal is to keep patients safe and in this current crisis, that involves avoiding an infection with no cure. SGO COVID 19 Task Force developing guidelines so no patients left behind/forgotten.
• The SGO COVID-19 Task Force guidelines are specific for GYN cancers. https://www.sgo.org/clinical-practice/management/covid-19-resources-for-health-care-practitioners/
• Hang in there! Cancer care is still being prioritized, but changes are being made to minimize patients' risk of exposure - especially important as we recognize that cancer patients may be at high risk for becoming quite ill from COVID-19. 
• Please understand that you all are very important and we are making the best decisions we can during this time of greater infection risk and increased resource limitations. Thank-you for your patience and understanding #COVID19 #GYNcsm #SGOCOVID19

Treatment / Follow-up Care

• Depends on how you are feeling and what your treating #MD thinks whether risks are greater than benefit; These are hard decisions and need to be individualized.
• I think the issue is that we don't know how long this is going to last - and we certainly want to keep you on track for your treatment. It's a difficult decision 
• Agree they can be stressful, but know it is more risky to come in now for a screening test.
• Delays in cancer screening and health check ups should only be temporary. Trying to balance risks of medical care with exposures to COVID-19. 
• Yes in high #COVID burden areas this is the case. But even in these areas we are able to do cases that we deem are necessary. Working hard to maintain care so it does not impact outcomes. 

Telemedicine

• But telemedicine allow us to keep very close tabs and communicate regularly with our cancer survivors. 
• Agree, @temkins. Telemedicine is a great alternative to deliver care for our patients and cancer survivors. 
• Something good has to come out of the COVID crisis and telemedicine and the improved patient access and convenience is going to be one of those positives.
• Hope we will also see sustainable improvement in accessibility of second opinions with reimbursement for televisits. 
• Telemedicine is one option but there are different laws/regulations across states 
• This is important! We are limited in #telehealth by regulations - we need legislators to learn from this issue and expand our ability to provide care across state lines 
• Language differences are also a challenge; interpreting clinic appointments is often challenging baseline, still need to find more #equitable solutions in order for telemedicine to not create/increase disparities imo 

Disparities

• As we hear more about the rates of infection/deaths of African Americans with COVID19, I worry we will continue to be excluded from clinical trials due to existing comorbidities.
• #clinicaltrials are the key to innovation in oncology and enrolling a representative patient population is good science. 
• I hope this COVID crisis draws attention to the disparities in outcomes for African-Americans as well as based on economic status, geographic location, etc. and serves as a call for equality for all
• In light of the high mortality rates, the financial health disparities will also become a factor as they will be faced with paying for costs of burial for those without insurance.
• And no, we shouldn’t wait to address this when it’s all over, as some suggest. We should tackle it now. We should recognize there are certain communities that are in greater need for resources, testing, access now. Should not accept these worse outcomes are inevitable. 

Genetics Counselors

• Genetic counselors across U.S. have been shifting our clinics to telephone/video & finding creative work-arounds to help patients access recommended genetic testing; we're doing our best to keep everyone safe, but missing in-person support of patients & families 

Support 

• You can connect with a patient mentor through OCRA's Woman to Woman Program. https://ocrahope.org/patients/peer-support-woman-to-woman/find-support/ #gyncsm
• As far as the emotional side of all of this. Enjoyed these patient perspectives: @nancyspoint https://nancyspoint.com/when-surgery-cancer-care-emotions-covid-19-collide/ Annie Ellis via @Globeathon http://globeathon.com/blog/living-with-uncertainty-during-uncertain-times/ Cervivor @IAmCervivor https://cervivor.org/deploying-cancer-coping-strategies-during-the-covid-19-crisis/
• Try your local cancer support community such as @CancerSupportNJ . They have an Decisions program to help with treatment decisions 

Survey 

Patient survey: Any person w/ #ovariancancer #fallopiancancer or #peritonealcancer is invited to complete this survey from research advocate @Stigetta on survivors' experiences during the COVID-19 pandemic. https://www.surveymonkey.com/r/OvcaCV19



Additional resources shared during the chat may be found at the end of this blog. 

Save the date for our next #gyncsm chat: 

Wed May 13, 2020 9pmET .
Topic: Side effects of Surgery

We'll end this blog with Tweets from two participants. 

I want to give the biggest of thanks to all the health care providers and medical staff. You guys are amazing each and every day! In Irish, thank you is “go raibh maith agat” which means “may you have goodness” I wish all the goodness for you! ❤️ 

Please spread the word to stay home to #flattenthecurve #GYNcsm #SGOCOVID19

Wishing wellness and safety for all,

Dee and Christina 


OTHER RESOURCES SHARED:
Covid19 resources for gyn cancer patients: Foundation for Women’s Cancer @GYNcancer
https://www.foundationforwomenscancer.org/news-stories/covid-19/
https://www.foundationforwomenscancer.org/covid-19-helpful-resources/

Questions? Comments? Concerns? for @SGO_org & @GYNCancer? You can leave a post FWC’s Facebook page! https://www.facebook.com/foundationforwomenscancer/

The @SGO_org website is a great resource for #COVID19 
https://www.sgo.org/clinical-practice/management/covid-19-resources-for-health-care-practitioners/ 

Covid19 webinars this week for cancer patients: 
Join @CancerAdvocacy Thursday, April 9, Noon ET: https://register.gotowebinar.com/register/3253972083140234252 
Join @SHAREing and @GYNCancer on Friday, April 10 at 2pm ET https://register.gotowebinar.com/register/8945691880708190222 #gyncsm

@DrMarkham- What People With Cancer Need to Know
https://www.cancer.net/blog/2020-04/coronavirus-and-covid-19-what-people-with-cancer-need-know on @CancerDotNet

@SHAREing COVID-19 Updates for Gynecologic Cancer Patients
https://www.youtube.com/watch?v=5z4umo0VYLc&feature=youtu.be

@FacingOurRisk has put out some great resources: 
Coping with Hereditary Cancer During the COVID-19 Pandemic
https://www.facingourrisk.org/about-us/about/covid-19.php 
A second helping of stress: Coping with hereditary cancer during the COVID-19 pandemic - register to view https://register.gotowebinar.com/recording/4410816644974202125 

@CancerAdvocacy Coronavirus and Cancer Resources for Survivors 
https://www.canceradvocacy.org/blog/coronavirus-cancer-resources-for-survivors/?mc_cid=d94d24cb7d&mc_eid=14aaa5ca15 

How long is it safe to delay gynecologic cancer surgery? By @RobinsonRossiGO 
https://www.mdedge.com/chestphysician/article/219514/coronavirus-updates/how-long-it-safe-delay-gynecologic-cancer-surgery/page/0/1 

Practicing self-care during the Time of Coronavirus @JBBC for @power4patients
 https://powerfulpatients.org/2020/03/24/practicing-self-care-in-the-time-of-coronavirus-how-to-mind-your-mental-health-and-well-being-during-covid-19/ #gyncsm #patientchat

Livestrong @livestrong Tips and Tools for living with Cancer during Covid-19 
https://blog.livestrong.org/tips-tools-for-living-with-cancer-during-covid-19-7c1ac49ea260?gi=f945388c302f

International Gynecologic Cancer Society @IGCSociety 
https://igcs.org/covid-19/

Here's what the FDA has to say so far re: clinical trials during COVID 19 
https://www.fda.gov/regulatory-information/search-fda-guidance-documents/fda-guidance-conduct-clinical-trials-medical-products-during-covid-19-pandemic?utm_source=&utm_medium=&utm_campaign= 

For AYA’s, check out @ElephantsTea ‘s #COVID19 resource page https://www.elephantsandtea.com/covid-19/
I love @DansHouseofHope, @LacunaLoft, and @MDAndersonNews Cancer 180 program also for additional resources! 

@CancerDotNet Coronovirus info
https://www.cancer.net/blog/tags/coronavirus

OCRA Covid19 info for ovarian cancer patients
 https://ocrahope.org/patients/information-on-covid-19-for-ovarian-cancer-patients/

Open Mic on Covid-19

With the ongoing global coronavirus pandemic, we decided to "host" an Open Mic on Covid-19 instead of our original April topic about communicating with your health care professionals. We hope to host a chat on that topic later this year.

We know from our interactions on Twitter, Facebook and other patient platforms that gynecologic cancer patients and survivors have concerns about risks and questions about how Covid-19 will impact their care. From delaying a port flush or follow-up scan to delaying treatment. Women are also wondering about clinical trial participation in the ever changing Covid-19 environment.

We are excited that the co-chairs of the SGO COVID-19 Task Force - gyn-oncologists Amanda Nickles Fader, MD (@amandanfader), Joshua Kesterson, MD (@KestersonJoshua), and Bhavana Pothuri, MD, MS (@BPothuri), and patient advocate Annie Ellis (@stigetta), will be joining us on Wednesday, April 8, 2020 at 9pm ET.


Please join us as we gather to share about Covid-19 and those impacted by gyn cancers. Bring your questions and share what's on your mind:

• What are your greatest concerns surrounding the Covid-19 pandemic?
• Has Covid-19 impacted your treatment and follow-up care? 
• Have you used Telemedicine to communicate with your health care provider? 
• Is being a gyn cancer patient/ survivor putting you at increased risk for Covid-19?
• Has clinical trial enrollment / participation been impacted during the Covid-19 outbreak? 
• What measures have you taken to reduce the emotional issues related to the Covid-19 outbreak?
• Where can you find the best online support and information available for cancer patients related to Covid-19? 
• What can the #gyncsm community do to help patients and healthcare providers through this difficult time?

We look forward to being able to spend time with each other while sharing important resources. See you Wednesday.

Dee
#gyncsm Co-Founder

Rare Disease Day Feb 29, 2020

"Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases."


Did you know that many gynecologic cancers are considered rare diseases in the US  by the NIH's Office of Rare Diseases Research? They are:

Ovarian

Uterine, including Sarcomas

Endometrial,

Fallopian tube,

GTD (Gestational Trophoblastic Disease),

Vaginal 

Vulvar 

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org).  To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.

Dee

February 12, 2020 Cancer Pre-hab and Rehab

On Wednesday, February 12, 2020 the #gyncsm community welcomed Dr. Timothy Marshall (@MarshallTF_PhD), Acting Executive Director of the Kean University, School of Physical Therapy in New Jersey, for our discussion on Cancer Pre-hab and Rehab. Thirteen participants join us for this important discussion. You may find a link to our complete transcript via @Symplur here  and analytics may be found here. 


T1: What is cancer pre-habilitation? Is prehab important for those having surgery?

• P1: Cancer prehabiltiation are interventions delivered after receiving a cancer diagnosis but before treatment begins #gyncsm
• P2: One aim of prehabilitation is to establish baseline levels of function and identify preexisting impairments or limitations, such as limited shoulder range of motion, which could be a problem later on in treatment #gyncsm
• P3: A second aim of prehbailitation is to improve a patient’s muscle strength and endurance, flexibility and cardiopulmonary health before treatment begins #gyncsm
• P4: This may be accomplished through an individualized exercise plan with the goal of reducing the incidence and severity of treatment-related side effects #gyncsm
• P5: Prehabilitation may be important for someone who is about to undergo surgery because strengthening the involved muscles before surgery may enable them to better tolerate the trauma of surgery and improve the recovery process #gyncsm
• P6: Strengthening the heart and lungs before surgery may help the patient’s heart and lungs better tolerate the surgery’s anesthesia and reduce post-operative complications and reduction in length of stay in the hospital #gyncsm
• Prehabilitation such as discontinuation of smoking improves overall surgical outcomes. #gyncsm

T2: What is cancer rehabilitation? What is impairment driven rehabilitation?

• P1: Cancer Rehabilitation refers to services delivered by healthcare professionals to treat physical, emotional, & cognitive problems that developed during cancer treatment #gyncsm
• And can be provided concurrently with cancer treatment to mitigate side effects/toxicity. This can improve tolerance to therapy. #GYNCSM
• P2: The goal of cancer rehabilitation is to reduce treatment-related side effects and improve function to promote independence. Physical problems appropriate for cancer rehab may include, but not limited to, pain, swelling, weakness and loss of strength, decrease flexibility, decreased inductance, lymphedema, fatigue, balance issues, sexual dysfunction, problems swallowing #gyncsm
• A1: Often patients with a new cancer diagnosis want surgery as soon as possible, but in some cases improving fitness will improve surgical outcomes without compromising oncologic outcomes #CancerPrehab #GYNCSM
• P3: Mobility problems may include, but not limited to, difficulties getting out of a chair or bed, navigating steps, walking, getting dressed and showering #gyncsm
• P4.:Cognitive & emotion problems may include difficulty multitasking, difficulty thinking clearly, memory trouble, depression, anxiety #gyncsm

T3: When is the right time to ask about cancer rehab and who should I ask? Will insurance pay for this service?

• T3: As early as possible in the pre-op appointment process. Likely with surgeon and oncologist. I think knowing what post-op life will look like is helpful mentally, emotionally, and also enables better planning. #GYNCSM
• T3. Thats absolutely right; as soon as possible! Ask you Oncologist, a nurse, or any other healthcare provider managing your care #gyncsm
• Agree. And usually insurance will cover this service. Some of what is learned can carry over into other phases of the cancer continuum. #GYNCSM
• T3: Cancer Rehabilitation services provided by licensed healthcare professionals are commonly covered by insurance #gyncsm
• T3: Services provided by exercise physiologist, which usually consist of exercise programs aimed at improving cardiovascular and muscular health and function are often NOT covered #gyncsm
• T3: Insurance coverage for prehabilitation is limited, spotty at best, because it aims to prevent issues than treat ones that exist, which does seem counterintuitive, but that is where we are right now #gyncsm

T4: Where are cancer pre-hab and rehab services offered? How would a patient go about finding these services in their community?

• T4: I believe @livestrong also has some programs at local Y's. #gyncsm
• This is a great question. Because prehabilitation services are siloed into different departments, you can rarely find them in one convenient place. #gyncsm
• T4 some @CancerSupportHQ communities offer programs after treatment too. #gyncsm
• T4 There are also programs like this Cancer Thriving and Surviving program, like this one in NJ 

T5: How is it determined which exercise/other rehab program is best for each patient?

• T5: This can be the tricky part. While the American College of Sports Medicine published updated Cancer Exercise Guidelines in 2019, what remains missing are tools for screening and referring to the appropriate rehabilitative service #gyncsm
• T5: Speaking as a patient, I hope the care team would consider ability levels and help the patient find what works for them. I believe medical professionals should stay up on exercise trends and have good, reliable information on them! #GYNCSM
• T5: I am involved in two projects, led by @NicoleStoutPT and @kcrov to develop tools for clinicians and patients to guide individuals to safe end effective rehabilitation and exercise programs to optimize treatment related side effects & improved functio #gyncsm
• T5: Here are ACSM Cancer Exercise Guidelines https://journals.lww.com/acsm-msse/Fulltext/2019/11000/Exercise_Guidelines_for_Cancer_Survivors_.23.aspx
• T5: However, and generally speaking, if treatment-related symptoms are severe, impairments are presenting and function is limited making it difficult to participate in activities or daily living or exercise, rehabilitation services may be most appropriate #gyncsm
• T5: Supervised exercise may more appropriate when treatment-related side effects and impairments are mild with minimal mobility issues and functional concerns; but, please check with your Oncologist or primary healthcare provider before engaging in any services #gyncsm

#gyncsm pic.twitter.com/QToiAFElsC

— Tim Marshall, PhD (@MarshallTF_PhD) February 13, 2020

T6: Can a patient who may have finished treatment a year or more ago do any exercise/rehab to help with the side effects of treatment?

• Yes! We’ve seen good results with pelvic floor physical therapy.
• T6: Yes! I heard a doctor at @MDAndersonNews speak about exercise helping cancer related fatigue, even years after treatment. I’m sure more benefits can come from a exercise/PT plan post treatment! #GYNCSM 
• Yes post treatment exercise interventions can help reduce the severity of post-treatment side effects and help regain strength/stamina/endurance that may have been reduced during treatment #gyncsm
• What also should not be lost or overlooked is the power of exercise for improving emotional health ( i.e. reducing anxiety, feelings of depression, etc) #gyncsm

Thank you Dr Marshall for taking the time to prep,  participate and share such valuable information with our community. 

There will be no #gyncsm chat in March. Save the date for our next chat Wednesday April 8, 2020 at 9pm ET on “Communication With your Healthcare Team and Asking for supportive care”.

See you in April!

Dee
Co-founder #gyncsm


Resources

@Cancerdotnet https://www.cancer.net/survivorship/rehabilitation/what-expect-cancer-rehabilitation

@JulieSilverMD Cancer Prehabilitation and Rehabilitation in Cancer Survivorship  http://www.nationalacademies.org/hmd/~/media/Files/Activity%20Files/Disease/NCPF/2017-JUL-24/Silver.pdf

Exercise Guidelines for Cancer Survivors  https://journals.lww.com/acsm-msse/Fulltext/2019/11000/Exercise_Guidelines_for_Cancer_Survivors_.23.aspx

Relaxation Resources https://www.loyola.edu/department/counseling-center/students/relaxation

Cancer Pre-Habilitation and Rehabilitation

Many people are familiar with rehabilitation after orthopedic surgery, other types of surgery, or long hospitalizations. But recently there has been more talk about pre-habilitation and rehabilitation surrounding cancer surgery and treatment.

On Wednesday, February 12, 2020 at 9pm ET, the #gyncsm community is pleased to welcome Dr. Timothy Marshall (@MarshallTF_PhD), Acting Executive Director of the Kean University, School of Physical Therapy in New Jersey, for our discussion on cancer pre-hab and rehab. Dr. Marshall is the author of a number of articles including Consensus- Building Efforts to Identify Best Tools for Screening and Assessment for Supportive Services in Oncology. Journal of Disability and Rehabilitation. 

After defining pre-habilitation and rehabilitation, we will discuss how programs for patients are developed as well as who to speak with about these services using the following topic questions:

• T1: What is cancer pre-habilitation? Is prehab important for those having surgery?
• T2: What is cancer rehabilitation? What is impairment driven rehabilitation? 
• T3: When is the right time to ask about cancer rehab and who should I ask? Will insurance pay for this service?
• T4: Where are cancer pre-hab and rehab services offered? How would a patient go about finding these services in their community?
• T5: How is it determined which exercise program is best for each patient?
• T6: Can a patient who may have finished treatment a year or more ago do any exercise to help with the side effects of treatment?  

We hope you will join us and Dr. Marshall for this month's chat.

Dee
#gyncsm Co-founder

New to tweetchats?

A Guide to Tweet Chats

Twitter Basics - 2019
Tweetchat Etiquette

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