March 2019

Happy International Women's Day!

Just a short note that there will not be a #gyncsm chat this March. 

Save the Date! 
We hope you will join us on Wednesday, April 10th at 9:00pmET with guest @ronny_drapkin to discuss the origins of high grade serous ovarian cancer. 

While we are off, we invite you to check out these other great healthcare conversations happening each month on twitter: 
http://gyncsm.blogspot.com/2019/01/looking-for-cancersocialmedia-chat.html

Christina Lizaso
#gycnsm Co-Founder

Getting Into a Clinical Trial - February 13, 2019

This month's chat, Getting Into a Clinical Trial, allowed our participants to learn from experts and our community to share resources which help patients find and decide on a clinical trial.

In addition to our health care moderators Drs Temkin, Westin and Becker-Schutte, we were joined by Dr. Christina Annunziata (@CMAnnunziata), Clara Health (@aaronjun_, @Clara_Health), Clearity Foundation (@ClearityFnd), Lilly Trials (@LillyTrials) and Smart Patients (@RobinSmrtPtient, @smart_patients). Twenty-seven participants created 1.4 million impressions during the hour chat. You may find more analytics here.

Below is a sampling of responses to our questions. A full transcript may be found here.

T1: Before looking for trials, what information do patients need? What is helpful to consider/decide ahead of time?

• T1 it's important to know your medical history before looking for a #clinicaltrial. Type of cancer, stage, prior treatment.
• Clinical trials can work for women at any point in their #ovariancancer experience and should be considered along with standard of care. Physicians may not always suggest a trial. It's important to speak up and ask questions. Find out more at: https://www.clearityfoundation.org/clinical-trials-can-help/
• Before starting to look for trials, it can be helpful to read about the differences between standard care and receiving treatment as part of a trial. We wrote a guide highlighting the differences here! https://guides.clarahealth.com/preparing-for-your-clinical-trial/
• Every trial protocol is different, so knowing what matters in your trial search before you get started can help you narrow down the options. For example, how far you're able to travel, if there is family who can help take you to visits, taking time off work etc.
• at any point in decision making, patients need to know a much as they can about their disease state/progression, resources (financial, logistical, medical team, etc.), & approved treatment/therapy options. Without that info, it’s hard to make an informed choice. 

T2: Where can patients search for trials? What key words are helpful? Are there specific search sites for gyn cancers?

• Your doctor should want to discuss the possibility of #Clinicaltrials with you. And help decide what's right for you.
• Our Guided Trial Finder is the only #ovariancancer focused clinical trial search engine that currently exists, free of charge. To find a trial, click here: https://forms.clearityfoundation.org/find-clinical-trials/ 
• Search engines on clinical trial databases like https://www.clinicaltrials.gov/ or https://www.lillytrialguide.com/en-US are a great place to start learning about enrolling clinical trials across conditions or diseases.
• To find a #clinicaltrial - there are a number of key resources. Your MD can help, as can a local research navigator. Search engines like https://clinicaltrials.gov/ or local institution websites can help too! 
• T2: Clearity’s search tool for clinicaltrials is user friendly. The Emerging Med site looks promising (the clinical search tool done with SHARE). And FORCE has a clinical trial search tool specific to hereditary cancers.
• Aside from finding a trial, the steps to connect with the right individual from the clinic, insurance, and travel can be its own (huge) challenge. https://clarahealth.com/ not only helps patients find a trial but also joins them through the entire process of enrolling
• To find @theNCI trials, they have their own finder and an 800 number with navigators https://www.cancer.gov/about-cancer/treatment/clinical-trials/search
• T2: There are several key trials specifically for women with gyn cancers. some can be found through @NCICCR_WMB https://ccr.cancer.gov/womens-malignancies-branch 

T3: What should patients look for in a trial? Where can patients get help on the terminology used in trial listings? What are eligibility criteria? 

• @SGO_org has a clinical trial glossary to help understand the terms used https://www.sgo.org/patients-caregivers-survivors/clinical-trials/clinical-trials-glossary/
• Each person has their own trial preferences, but if you ever feel like you’re being pressured to sign up for a trial without the time to make an informed decision, DO NOT CONSENT. It’s not informed consent if you don’t have time to be informed. 
•  Whether the trial is open AND currently accepting patients is definitely important to figure out. Then you can start looking into if you qualify - some things may keep you out (exclusion criteria) and some will match (inclusion criteria)
• @theNCI dictionary of cancer terms is helpful as your read through trial descriptions: https://www.cancer.gov/publications/dictionaries/cancer-terms
• T3: When designing a study, the research team specifies guidelines about what kind of patients the treatment is meant to target, which are the "eligibility criteria" that specify who can participate.
• @CISCRP has great resources on explaining what a clinical trial is & what eligibility criteria are.
• We find that @ClearityFnd has really great, SPECIFIC resources that are super helpful for folks looking into gyn cancer trials.
• Smart Patients has an integrated glossary and members who can explain terminology and inclusion/exclusion 

T4: When contacting the study team, what questions are important to ask? What factors need to be considered?

• T4. Get exact contact name and send your materials directly using FedEx - must deliver to that exact person! Mail goes astray. 
• T4: Tip: Prior to meeting with the research coordinator or doctor, write down possible questions to ask. You may find it helpful to bring a friend or relative with you as another set of ears to hear the responses to your questions.
• T4: Prior to enrolling in a trial, specifically phase I studies, questions about the # of patients already treated, drug effectiveness & side effects are important to ask. Check out our list of helpful q's to ask when contacting the study team: https://www.clearityfoundation.org/trials-questions-to-ask/ 
• You can ask them 1) what are your alternative options, 2) goals of the #clinicaltrial, 3) how long you will stay on the trial, 4) adverse events, 5) logistics/travel 

T5: How can patients best prepare for the onsite interview? What is a study protocol? What is informed consent? 

• Have your records ready, read over the protocol (if you need help, https://clarahealth.com/ offers 24/7 live chat for all patients, just sayin). And remember you aren't bound to joining. Ask any question you have.
• During informed consent, a member of the trial team will go over the trial in depth to make sure you understand all the details. Bringing a family/friend if possible to help take notes can reduce the information overload from the long informed consent process! 
• Every clinical trial must have a study protocol approved by an Institutional Review Board and FDA. Key features of the study protocol are available to the public on websites like https://www.clinicaltrials.gov/ 
• Bring a Caregiver/ friend . Two ears are better than one. Have some questions written out ahead of time, take notes. Don't be afraid to ask questions and for a tour of the treatment area.
• T5: Study protocol: complete outline of study often looks intimidating. Ask about what you don't understand. Write down trial NUMBER
• T5 Making sure you have had the opportunity to ask all of your questions. A copy of the consent with study team contact information should be provided. Take a day to think it over! 

T6: What advice do you have for patients who are choosing between trials when there are several options?

• T6: Look for a trial that guarantees you the treatment you want (no undesirable treatment arms in the study)
• T6: "Patients can check our website to see if the effectiveness and side effects of any of the trial drugs have already been reported. We show results for all standard chemotherapies and drugs in advanced clinical trials.” (1/2)
• T6: "We want to make it easy to find these results so that women don't have to spend hours trying to find the right information to help them make informed choices about treatment options.” – Clearity’s Scientific Director, Dr. Deb Zajchowski (2/2)
• T6: If possible, after speaking with the study teams, you may want to talk to your family, primary care physician, and an additional source for a second opinion before choosing which to enroll in. Everyone can bring a different (equally important) perspective!
• T6: you can choose the right trial for you based on if it is selected for your tumor type vs. an "all comers" design. Other considerations are toxicity, logistics, and any known efficacy
• T6: If you want to learn more about the investigational drug in the study, you can search for published information in peer-reviewed medical journals.
• T6: consider the phase of the trial (1,2,3), whether it is randomized (some get experimental drug, some get standard care), and whether it is specifically designed for your particular type of cancer (biomarker, histology, gene mutation, etc)

These two comments are important for everyone to know:

• Participating in a #clinicaltrial is voluntary
• You *always* have the right to say no & leave a trial. 

In addition to those resources shared in the comments above, you may find additional resources below.

A special congratulations to #gyncsm health care moderator Dr Shannon Westin for being chosen for CURE Media Group 2019 Ovarian Cancer Heroes®.

We will not be holding a #gyncsm chat in March. Please save the date and join us on April 10, 2019 at 9pm ET as we discuss The Origination of High Grade Serous Ovarian Cancer with Dr Ronny Drapkin.

Remember to share information of interest to our community by using the #gyncsm tag.

See you in April!

Dee
#gyncsm Co-founder

ADDITIONAL RESOURCES

LillyTrial's TrialGuide Blog
https://blog.lillytrialguide.com/

Lilly 10 Things You Need to Know about a Clinical Trial
https://www.lillytrialguide.com/en-US/about-clinical-trials?twitterfocus=3#/tenthings?utm_source=twitter&utm_medium=organic&utm_campaign=ltg&utm_content=ltg_117

Clara Health's Step by Step Guide to Finding and Participating in Clinical Trials https://guides.clarahealth.com/how-to-find-and-participate-in-clinical-trials/

Understanding Gynecologic Clinical Trials - Video Produced by the Society of Gynecologic Oncology (SGO) and the Foundation for Women’s Cancer (FWC)
https://youtu.be/UFGb8nQkE8c

@CancerTodayMag Tomorrows Trials https://t.co/xpCxw99tZt

@cure_magazine Clinical Trial Exclusions https://t.co/t3dLp1lZOz

February 13, 2019 - Getting Into Clinical Trials Chat

During the past few years our community has talked about Clinical Trials a number of times. We talked about different types of clinical trials, how clinical trials have changed, new trial designs - such as basket trials and the @ASCO TAPUR trial - and the inclusion of Patient Reported Outcomes in clinical trials. A theme that kept repeating during these chats was the difficulty gyn cancer patients had in finding clinical trials they could enroll in. So this month #gyncsm will spend time talking about Getting Into a Clinical Trial. 

Prior to the chat, we encourage you to review these resources

Lilly's TrialGuide Blog
https://blog.lillytrialguide.com/

Clara Health's Step by Step Guide to Finding and Participating in Clinical Trials https://guides.clarahealth.com/how-to-find-and-participate-in-clinical-trials/

and watch this video from The Foundation for Women's Cancer

Understanding Clinical Trials

Guiding our discussion will be the following Topic Questions (T:)

T1: Before looking for trials, what information do patients need? What is helpful to consider/decide ahead of time?

T2: Where can patients search for trials? What key words are helpful? Are there specific search sites for gyn cancers?

T3: What should patients look for in a trial? Where can patients get help on the terminology used in trial listings? What are eligibility criteria?

T4: When contacting the study team, what questions are important to ask? What factors need to be considered?

T5: How can patients best prepare for the onsite interview? What is a study protocol? What is informed consent?

T6: What advice do you have for patients who are choosing between trials when there are several options?

Bonus Topic - time permitting: Outside of eligibility criteria, what kept you or a patient you know from enrolling in a trial? How are trials changing to reduce trial participation barriers?

Invite your friends and join us on February 13, 2019 at 9pm ET (8pm CT, 6pmPT) for an informative discussion. We will have a number of researchers and clinical trial experts joining us. 

See you then.

Dee 

#gyncsm Co-Founder

Vaccines in Cancer Care and Risk Reduction January 9, 2019

For our first chat of 2019, we had twenty-eight participants discussing Vaccines in Cancer Care and Risk Reduction. You may find the transcript here and additional analytics here.

Some responses to our questions may be found below.

T1: What vaccines are available before you develop cancer to reduce your risk? Are there different types? 

• T1 The #HPV vaccine is cancer prevention for six cancers-cervical, vaginal, vulvar, penile, & oropharyngeal. #gyncsm
• T1: Cancers that are caused by viruses can be vaccinated against. HPV vaccine protects against cervical and other HPV-related cancers. The HepB vaccine can help protect against liver cancer
• the #HPVvaccine has been available since 2006 -- initially it offered protection against HPV16 and HPV18, the types of HPV that causes 70% of #cervicalcancer #gyncsm
• the FDA approved Gardasil 9 in 2014 -- which protects against another 20% of the most dangerous subtypes of #HPV #gyncsm 

T2: What cancers can be caused by HPV? How does the HPV vaccine reduce the risk of HPV-related cancers?

• T2 Cervical, vaginal, vulvar, anal, penile, & oropharyngeal cancers are caused by HPV. Every year in the US, HPV causes 33,700 cancers in men and women
• #HPV can cause #cervicalcancer and some types of ear-nose-and-throat, vulvar, vaginal, penile, and anal cancer. The CDC recently release a report about trends in HPV-related cancers. #gyncsm cdc.gov/mmwr/volumes/6…
• T2 -- interestingly, in recent years oropharyngeal cancers are now the most common type of HPV-related cancer. #HPV #gyncsm
• T2 The HPV vaccine protects against an HPV infection-persistent infection can lead to cell abnormalities & cancer.
• T2: It takes a long time for a persistent HPV infection to cause cervical disease and pre-cancer. The vaccine helps keep the body from being infected after exposure. Approx 80% of people are exposed to HPV at some point in their life
• It's better to get vaccinated before exposure to #HPV - that way your body is already immune!
• A2 from @cochranecollab Among women aged 15 to 26 years, vaccines reduced the risk of cervical precancer associated with HPV16/18 from 341 to 157 per 10,000. HPV vaccination reduced also the risk for any precancer lesions from 559 to 391 per 10,000.

T3: What are the current U.S. recommendations for HPV vaccination? Who should get vaccinated, when and how many doses?

• T3 The HPV vaccine is recommended for all girls & boys who are 11 or 12 years old. The series can be started as young as 9 years. #gyncsm
• T3 -- currently the @CDCgov suggest offering vaccination for boys and girls starting at age 9, and recommends it starting at age 11-12.
• T3 -- however, in October 2018 the @US_FDA has approved the use of Gardasil 9 for men and women up to age 45. #hpvvaccine #hpv #gyncsm https://www.statnews.com/2018/10/06/fda-expands-hpv-vaccine-use-to-age-45/
• And Vaccines for Children (VFC) Program offers vaccines ( including HPV) at no cost for eligible children cdc.gov/vaccines/progr…
• Yes -- for individuals who start the vaccine series younger than age 15, two shots of the #hpvvaccine is recommended.
• The @HPVRoundtable has a bunch of great parent materials.
• You can also check out yesterday's tweet blast by @StopHPVCancer for some great HPV resource links 

T4: What are cancer treatment vaccines? How do they work? When are they used - after front-line?

• T4: There are cancer vaccines that can be created the patient's own tumor! They have been explored in #ovariancancer as a maintenance strategy after primary treatment #gyncsm
• Specific #HPVVaccines are being combined with #immunotherapy to treat #cervicalcancer and head and neck cancers @MDAndersonNews
• T4: "Cancer treatment vaccines boost the immune system's ability to recognize and destroy antigens. Often, cancer cells have certain molecules called cancer-specific antigens on their surface that healthy cells do not have." https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines
• T4: Some cancer vaccines are made from the person's tumor sample for them. Other cancer vaccines target specific cancer antigens and are given to people whose tumors have those antigens on the surface of the tumor cells.
• T4 this article talks of the steps producing the vaccine Provenge for prostate cancer and examples of types of cancer vaccines. #gyncsm historyofvaccines.org/content/articl…   

T5: In which gynecologic cancers are treatment vaccines being studied? Has there been progress in this area?

• I found 15 clinical trials when I searched on clinicaltrial.gov for ovarian cancer vaccines https://clinicaltrials.gov/ct2/results?term=vaccine&cond=Ovarian+Cancer&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=
• Results from one #ovariancancer trial last spring via @ocrahope ocrahope.org/2018/04/vaccin…
• Cancer Vaccines in Ovarian Cancer: How Can We Improve? gives overview of research being done in this area in 2016 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344251/
• T5 -- to me, it seems that the most progress with vaccines as a treatment strategy has been in #ovariancancer. There certainly is a lot of interest in this area given the innovation in #immunotherapy #gyncsm cancertherapyadvisor.com/gynecologic-ca

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

Be sure to join us next month on February 13, 2019 at 9pm ET for our chat "Getting Into a Clinical Trial". 

You can also join us for a collaborative chat across all #cancer communities presented by #LCSM this Thurs Jan 10th at 8pm ET/5pm PT on "Immunotherapy: What Patients Need to Know". More here: https://lcsmchat.com/2019/01/06/lcsm-chat-2019-01-06-immunotherapy-what-patients-need-to-know/ 

And on January 16 at 9pm ET join the #CervivorChat (@IamCervivor) for support and discussion about HPV and cervical cancer. 

See you there!

Dee
Co-moderator #gyncsm Chat

RESOURCES: 

Trends in HPV 
https://www.cdc.gov/mmwr/volumes/67/wr/mm6733a2.htm

Hepatitis B Vaccination : What Everybody Should Know 
https://www.cdc.gov/vaccines/vpd/hepb/public/index.html 

Recap from our #gyncsm Feb 2017 chat on HPV and Cervical Cancer 
http://gyncsm.blogspot.com/2017/02/hpv-and-cervical-cancer-chat-2817.html

@theNCI site 
https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-vaccine-fact-sheet 

HPV vaccine: A smart way to protect kids from cancer @jburzawa
https://www.mdanderson.org/publications/cancerwise/hpv-vaccine-a-smart-way-to-protect-kids-from-cancer.h00-158830434.html 

American Academy of Pediatrics - HPV 
https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/adolescent-sexual-health/Pages/HPV.aspx 

Vaccines for Children (VFC) Program 
https://www.cdc.gov/vaccines/programs/vfc/parents/qa-detailed.html 

NCI-designated Cancer Centers Urge HPV Vaccination for the Prevention of Cancer http://www.cinj.org/sites/cinj/files/documents/NCI_HPV_Consensus_Statement_012716.pdf 

Cancer.Net 
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines

Phase 2 Trial on HPV Indications 
http://ir.inovio.com/news-and-media/news/press-release-details/2018/Inovio-Announces-Initiation-of-Phase-2-Trial-in-New-HPV-Indications/default.aspx

Cancer Vaccines in Ovarian Cancer: How Can We Improve? 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344251

First Chat of 2019 - Vaccines in Cancer Care and Risk Reduction 1/9/19

"Vaccine therapy is a type of treatment that uses a substance or group of substances to stimulate the immune system to destroy a tumor or infectious microorganisms such as bacteria or viruses." - NCI

We have talked in this community about how the HPV vaccination reduces the risk of cervical cancer (HPV and Cervical Cancer - 2/2017). Did you know it may also help reduce head and neck cancers caused by HPV? Did you know that the Hepatitis B vaccine helps reduce long term infection with HPV which can lead to liver cancer? Did you know that vaccine research to treat ovarian cancer is currently taking place? 

If you would like to learn more about the use of vaccines to treat and reduce your risk of cancer, please join us on Wednesday January 9, 2019 at 9pmET (8pmCT, 6pmPT) as the #gyncsm community chats about Vaccines in Cancer Care and Risk Reduction.

Since January is Cervical Cancer Awareness Month, we will include the HPV vaccine and latest CDC recommendations. We will also look at current ovarian cancer trials and how a patient's immune system can be trained to fight cancer tumor cells.

Guiding our discussion will be the following Topic (T:) questions:

T1: What vaccines are available before you develop cancer to reduce your risk? Are there different types?

T2: What cancers can be caused by HPV? How does the HPV vaccine reduce the risk of HPV-related cancers?

T3: What are the current U.S. recommendations for HPV vaccination? Who should get vaccinated, when and how many doses?

T4: What are cancer treatment vaccines? How do they work?

T5: In which gynecologic cancers are treatment vaccines being studied? Has there been progress in this area?

You may learn about our topic on this Cancer.Net page:
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines

See you on Wednesday!
Dee
Co-moderator

Looking for a #_CancerSocialMedia Chat?

[updated August 2022]

If you are a reader of this blog you know that the #gyncsm (Gynecologic Cancer Social Media) community holds a regular Tweet chat on most 2nd Wednesdays at 8pm Eastern Time. Did you know that there are other Twitter chats and communities for those impacted by cancer? As we begin the New Year, we wanted to take a moment and share with you a number of regular #_csm chats that may be helpful to you, a friend or loved one.

#bcsm breast cancer social media  Handle: @BCSMChat

No longer holds regularly scheduled chats

#lcsm  lung cancer social media  Handle: @lcsmchat

No longer holding regularly scheduled chats

#btsm brain tumor social media  Handle: @BTSMchat 

Chat: First Sunday each month at 9pm Eastern Time

The chat was inspired by the #bcsm chat and was founded in February 2012. Information on how to participate in the chat may be found at https://thelizarmy.com/2013/05/how-to-participate-in-the-btsm-tweet-chat/  Moderated by @cblotner_ @thelizarmy @adamhayden

#MMSM Multiple Myeloma Social Media Chat
Chat: Wednesdays 3-4pm Central Time
Find out more information by following #MMSM on Facebook
https://www.facebook.com/MultipleMyelomaMMSMTweetChat/

#PANCChat Pancreatic Cancer Tweet Chat 

Chat: Last Tuesday of each month at 8pm Eastern Time

Founded in April 2016, the chat was developed to provide relevant, credible, and timely information to the PC community. Read more in the journal article http://ascopubs.org/doi/abs/10.1200/JCO.2018.36.4_suppl.242

Co-hosts: @PanCAN, @DrAllysonOcean and guest experts

#ayacsm Adolescent and Young Adult Cancer Chat 

Chat: First Tuesday of the month at 8pm ET
Chats are attended by advocates, health care providers and survivors and offer topics of interest to adolescents and young adults.
Host: @EK_Drake

#EPIChat 

Chat: First Sunday of the month at 3pm ET [8pm GMT, 9pm CET, 12 noon PST]

Founded in 2014 and moderated by leukaemia survivor Nóirín O'Neil @ONeillHealthca1, #EpiChat is
a community for those who want to talk about the Emotional & Psychological Impact of Cancer.

Symplur lists cancer-related hashtags on their Cancer Tag Ontology page (https://www.symplur.com/healthcare-hashtags/ontology/cancer/)

Other chats that may be of interest to our followers include:

#hpm chat Hospice and Palliative Medicine Chat @hpmchat
Chat: Every Wednesday at 6pm PT/9pm ET.
Moderators @ctsinclair, @rfberry, @EOLnavigator, @GraniteDoc or @acderinger
To be notified of chats please visit - http://www.hpmchat.org/

#HCLDR Health Care Leader Chat @hcldr
Chat: every Tuesday at 8:30pm ET (GMT-5)
A community ( patients, health care providers, caregivers, IT, policy makers etc)  of people who share a passion for improving healthcare.
More information may be found at https://hcldr.wordpress.com/
Founded in 2012. Moderators  @colin_hung and @JoeBabaian

#CureConnect Chat
Chat: Monthly
Hosted by CURE Magazine

#WegoHealthChat 
Chat: Periodic
Hosted by the Social Health Network / WEGO Health to bring patient leaders together to discuss issues that are important to their various communities.
https://www.wegohealth.com/2017/04/11/10-tips-for-participating-twitter-chat/

#PatientChat Empowered Patient Chat

Chat: Bi-weekly on Fridays 1pm ET

Hosted by Patient Empowerment Network

https://powerfulpatients.org/resources/empowered-patient-chat/

#PatientsHavePower Chat
Chat: Periodic
Hosted by Clara Health/Breakthrough Crew

#WTFix Chat
Chat: Periodic
Hosted by HealthSparq


If you moderate a chat for those impacted by cancer, please let us know and we will add you to this list.

Happy New Year! 

Pelvic Health After a Gyn Cancer Diagnosis Chat - Dec 12, 2018

We finished another wonderful year of informative chats by discussing Pelvic Health After a Gyn Cancer Diagnosis. We were pleased that Dr Tracy Sher (@PelvicGuru1), pelvic physical therapist, was able to join us as our guest.

Some responses to the topic questions may be found below. You may find the complete transcript of this chat here and the analytics here.

T1: What is pelvic health and why is it important?

• Great question because most people don't know what #pelvichealth is. It involves the entire area of the bony pelvis, lower abdomen, genitals, reproductive organs, muscles, bowel/bladder/sexual function, nerves...and more (for male and female parts).
• @bcmhouston website states : "Pelvic Health is best possible functioning & management of the bladder, bowel, and reproductive organs. It is not merely the absence of disease or weakness in these organs." 

T2: How do treatments for gynecologic cancers impact women's pelvic health? 

• Treatment for GYN cancers often create issues with other organs & systems in the pelvis. GYN survivors often have bladder/bowel issues after radiotherapy & surgical treatment
• During #brachytherpay, radiation is applied directly to the cervix. While effective in treating #cervicalcancer, it’s side effects can be devastating to the pelvis and vagina.
• Pelvic cancers impact pelvic health - both disease and the treatment can cause pain and organ dysfunction - both surgery and radiation can effect function of the bowel and bladder
• hysterectomy to treat cancer has complications which need proper care. Hormonal Changes in pelvic structure (improved with pelvic Physio for MSK training which has level 1 evidence Bø et al.)
• The pelvis is a complex space - with bowel, nerves, bladder, blood vessels - cancer or cancer treatment can impact any of the components.

T3: What options are there for alleviating pelvic pain? What specialists typically treat pelvic pain? What has been your experience with pelvic pain?

• Many women in our Cervivor community are finding relief from pelvic pain after working with a Pelvic Floor Therapist. However, for those in more rural areas, they may not have this option
• So, we highly recommend seeking out professionals who know about pelvic pain. Such as GYNs, Urogynecologists, Urologists, Pelvic Physical Therapists, OTs, NPs (to name a few) who attend conferences or take courses in pelvic pain care. (Such as @PelvicPainOrg
• Seems like several specialists are involved in overall pelvic health - gynecologist, gastroenterologist, urologist, GI docs and there is even a urogynecologist. Seems like patients would need navigation related to their particular symptoms.
• Here are just some of the things @MayoClinic lists as pelvic pain treatment options: Medication, Physical therapy, Stretching, massage and other relaxation techniques, TENS, Neurostimulation (spinal cord stimulation), injections and psychotherapy. https://www.mayoclinic.org/diseases-conditions/chronic-pelvic-pain/diagnosis-treatment/drc-20354371

T4: How does pelvic health impact intimacy and sexual health? What are tips and resources to maintain intimacy and sexuality after gyn cancer?

• It’s hard to feel sexy with pelvic pain. 
• "Asking about sexual pain and dyspareunia and performing a thorough physical examination are essential steps to guide management, which must be tailored to individual patient goals."   Yes! Tailor treatment to the needs of patients https://www.ncbi.nlm.nih.gov/pubmed/27607852
•  Don’t give up on intimacy. Be patient with yourself. If you have a partner, COMMUNICATE. Communication is KEY to finding what will work for you and your partner.
• #SexualHealth IS #pelvichealth. It's important for those who have partners to continue to have all sorts of emotional and touch intimacy. Not just penetration focus. I see so many cases where this changes.
• From a needs assessment in 2010 "Greater than 40% of survivors expressed interest in receiving sexual healthcare, but few had ever sought such care" 
• It was recommended for me to follow excellent work by people like @will2lovedotcom for resources. Check this out at https://www.will2love.com/ 

T5: What is pelvic physical therapy? How long after pelvic surgery can it be helpful? 

• Like all physical therapy, pelvic PT can help break up scar tissue, help regain strength and range of motion and help restore function. https://www.pelvicsanity.com/single-post/2017/06/21/Pelvic-Physical-Therapy-after-Surgery---Why-Pelvic-and-Abdominal-Surgeries-Need-PT-Too
• @PelvicGuru1 website explains what pelvic physical therapy is https://pelvicguru.com/2013/12/28/what-is-pelvic-physical-therapy-and-why-doesnt-everyone-know-about-it/
•  Physical therapy is a profession,not an intervention or a technique. What happens in a visit depends on who is the therapist. A pelvic health PT can do a careful (not painful) eval and help set up an individual program

T6: What are some pelvic health resources for those impacted by cancer-related diagnoses? What have you found helpful?

• Love this question because so many people still don't realize that there are physical therapists who specialize & care for pelvic health conditions. Doing this 20 years and my mentors many more. Patients often say "WHY didn't I know this type of care existed before!?"
• You can also find excellent people at @APTAtweets @womens_PT @HermanWallace and ask her on twitter with #pelvicmafia
• Typically, there's a recommendation to wait at least 6-8 weeks after a gyn surgery to do any type of internal/vaginal assessments/treatments for pelvic PT, but there's so much we can do even before that in terms of movement, touch, education, etc.
• In addition to those organizations and practitioners joining along on #gyncsm, many find the @hystersisters site - not a nonprofit btw and does have ads - helpful. https://www.hystersisters.com/vb2/article_757741.htm

We look forward to having you join us next year on January 9, 2019 when we discuss Vaccines in Cancer Care and Risk Reduction.

Our wishes for the #gyncsm community.:

Dee
Co-moderator

Resources 

@GYNCancer Renewing Intimacy & Sexuality after Gynecologic Cancer brochure https://www.foundationforwomenscancer.org/wp-content/uploads/Sexuality-Brochure_Final.pdf

@DanaFarber Sexual Health, Intimacy and Cancer https://www.dana-farber.org/health-library/articles/sexual-health,-intimacy,-and-cancer/

Gynecologic cancers predict coexisting pelvic floor disorders Publish date: March 30, 2015 https://www.mdedge.com/familypracticenews/article/98401/oncology/gynecologic-cancers-predict-coexisting-pelvic-floor

Life After Cancer: The Role of Pelvic Physical Therapy
https://pelvicpainrehab.com/female-pelvic-pain/2983/life-after-cancer-the-role-of-pelvic-physical-therapy/

American Physical Therapy Association
https://www.apta.org/

Urinary incontinence
https://www.womenshealthapta.org/wp-content/uploads/2013/11/Urinary_Incontinence.pdf

Pelvic Pain
https://www.womenshealthapta.org/wp-content/uploads/2013/11/Pelvic_Pain.pdf