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/
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