How do we #MoveTheMessage? Raising Awareness of Gyn Cancers 9/13/2023

We hope you can join us on Wednesday, September 13, 2023 at 8pm ET for our chat about raising awareness of gynecologic cancers titled How do we #MoveTheMessage ? We will be joined by Gail O'Hara, Director of Corporate and Foundation Relations for the Foundation for Women's Cancer to share information about the types of gyn cancers - ovarian, endometrial, vulvar, cervical and vaginal. We'll also have guests from Cervivor, ECANA, and Powell-Drescher Ovarian Cancer Research Foundation.

Are you doing anything special this month to raise awareness? Are there organizations you work with to help raise awareness and educate about cancers below the belt? If there are, we hope you will share their information with our community. Our discussion will be guided by these questions:

T1: What are some of the things you, or your organization, do to raise awareness of GYN cancers? Are there things you've tried in expanding your reach to underserved communities?

T2: What are some of the key points to share when raising awareness about #CervicalCancer? What do you wish others knew?

T3: What are some of the key points to share when raising awareness about #UterineCancer and #EndometrialCancer? What do you wish others knew?

T4: What are some of the key points to share when raising awareness about #OvarianCancer? What do you wish others knew?

T5: Vaginal, vulvar, and several other gyn cancer types are rare. With fewer advocates and organizations to speak about these cancers, how can we educate more people? What is most important to know?

There is another reason why we hope you will join us this month. GYNcancer community will be celebrating our tenth anniversary as a community and chat on X (/Twitter) .

We appreciate the support and guidance provided by so many in our community that made our community a success and helped us achieve our mission to provide a place where those with a gynecologic cancer-related diagnosis and their caregivers can find reliable information and support, and to provide a place where health care providers can gain insight into the patient experience, discovering what topics/issues are most important to gyn cancer patients. We'd love your feedback on the following questions:

 

#GYNCSM Community Question 1: Approximately how long have you followed the #gyncsm hashtag? What has the cancer community on this platform meant to you?

#GYNCSM Community Question 2: How are you feeling about the cancer community on this platform now? Do you have back-up plans if/when this platform is no longer a good fit for you?

 #GYNCSM Community Question 3: What chat topics have you found most helpful? What topics would you like #gyncsm to cover in future chats?

See you on Wednesday at 8pm. 

Dee 

Co-founder #GYNcsm Community 

July 12, 2023 Gyn Cancer Research News

At this month’s chat, the #gyncsm community discussed gynecologic cancer research presented at the #SGOmtg and #ASCO23 meetings. We had eleven participants and you may find the transcript HERE and additional analytics HERE.

Below are some responses to our topic questions.

T1: What #SGOMtg presentations did you find most interesting? [Acronym buster: SGO = Society of Gynecologic Oncology]

• SGO mtg round-up from @CancerNetwrk https://www.cancernetwork.com/conference/sgo
• @Stigetta did an excellent job highlighting SGO mtg research https://ocrahope.org/news/highlights-2023-annual-meeting-of-the-society-of-gynecologic-oncology-sgo/
  
• I found the Pembrolizumab versus Placebo in Addition to Carboplatin and Paclitaxel for Measurable Stage 3 or 4a, Stage 4b or recurrent Endometrial Cancer : Phase 3 NRG GYO18 Study (Keynote 868) study extended survival most interesting. Median Prog free survival 13 months Pembro versus 8 month survival
• There was also the Ruby Trial at #SGOmtg this tweet talks about both. https://twitter.com/eugeniagirda/status/1640481843664265222?s=61
• @womenofteal also covered #SGOMtg on her blog https://womenofteal.blogspot.com/search?q=SGO

T2: Which #ASCO23 studies do you think may be of most interest to patients? [Acronym buster: ASCO = American Society of Clinical Oncology]

• I found this @CancerNetwrk Gyn Cancer round-up page highlighted the main #ASCO23 studies for #gyncsm https://www.cancernetwork.com/clinical/gynecologic-cancer
• The Shape trial for Cervical cancer: phase III trial comparing radical hysterectomy and pelvic node dissection (RH) vs simple hysterectomy and pelvic node dissection (SH) in patients with low-risk early-stage cervical cancer (LRESCC) : fewer side effect w/ simple 
• Here's @womenofteal coverage of #ASCO23 https://womenofteal.blogspot.com/search?q=ASCO23&max-results=20&by-date=true
• Lots of discussions on Antibody drug conjugates at #ASCO23 eye toxicities with ADC’s can be handled with steroids. https://twitter.com/womenofteal/status/1664752857885581314?s=61

T3: In the last year, have there been any practice-changing gyn cancer studies patients should know about? (cervical, endometrial/uterine, ovarian. vaginal, vulvar, or other)

• The Future of Endometrial Cancer Treatment Based on Practice-Changing SGO Abstracts https://www.targetedonc.com/view/the-future-of-endometrial-cancer-treatment-based-on-practice-changing-sgo-abstracts via @targetedonc
• T-DXd May be ‘Practice Changing’ in HER2+ Gynecologic Cancers https://www.cancernetwork.com/view/t-dxd-may-be-practice-changing-in-her2-gynecologic-cancers via @CancerNetwrk 
• Cervical Cancer OS from Keynote 826 https://twitter.com/ShannonWestin/status/1665088788157063172

T4: What are some of the "hot topics" in gynecologic cancer research currently?

• For me, from what was reported at SGO/ASCO, antibody drug conjugates and immunotherapies were the hot topics.
• Cancer Glossary via @theNCI antibody-drug conjugate https://www.cancer.gov/publications/dictionaries/cancer-terms/def/antibody-drug-conjugate
• It feels like we've been talking about targeted therapies and immunotherapy for years, but research is a long game and there are more studies each year on applying these newer modalities to gyn cancers. Here's to these staying on the hot topic lis
• The best practices for PARP use in OC is an important discussion too. https://twitter.com/womenofteal/status/1679290551173103616
• hot topic: Radical hysterectomy and Cervical cancer: SHAPE Trial https://dailynews.ascopubs.org/do/shape-trial-radical-hysterectomy-may-not-needed-early-stage-low-risk-cervical-cancer

T5: Both #ASCO23 and #SGOmtg held sessions on disparity and equity in cancer care. What was highlighted and how can we work to decrease disparities in gynecologic cancer care?

• We can point out all the voices that are missing from conversations. 
• It also feels like we've been talking about disparity and equity for years, but I do see more and more studies taking deep dives and it is great to see gyn-specific studies that are fully about disparities or at least have incorporated it into the research. #gyncsm
• Disparity and Equity are complicated to study, but it is entirely possible to not only study but design practical interventions to address. It can seem daunting but when we include more voices we can go far
• Should we treat Pacific Islanders the same as Asian population? https://twitter.com/dholakiamd/status/1640733888988213258
  

T6: Cancer drug shortages were highlighted at both #SGOMtg and #ASCO23. What resources for health care providers and patients are available?

• T6 @SGO_org has been working hard to highlight the impact of shortages on patients with the Congress and the public https://www.sgo.org/news/drugshortages5/
• @ASCO Drug Shortages Resource Page https://old-prod.asco.org/practice-patients/practice-support/drug-shortages

Note there is no #gyncsm chat in August. Stay tuned for information about our next chat which will be held in September during Gynecologic Cancer Awareness Month / Ovarian Cancer Awareness Month.



See you in September,

Dee and Christina
Co-Moderators

Gyn Cancer Research News - July 12, 2023

We are happy to once again be sharing the latest Gynecologic Cancer Research News as we cover studies from this year's #SGOmtg and #ASCO23 Annual Meetings. Join us on Wednesday, July 12, 2023 at 8pm ET (7pm CT, 5pm PT) as we discuss findings that may impact how gynecologic cancers are treated in the future.

We will discuss topics in gyn cancer research presented at both meetings, presentations that oncologists and patients who attended found most interesting, which research may make the greatest impact on patient lives, and cancer equity topics. What studies were of most interest to you - Gynecologic cancer screening, treatment and research with regard to antibody drug conjugates? PARP inhibitors? Immunotherapy? We will also touch on the impact of drug shortages on patients and on clinical trials.

The Society of Gynecologic Oncology Annual Meeting on Women’s Cancer (SGO)

News Round-up from Cancer Network: https://www.cancernetwork.com/conference/sgo

American Society of Clinical Oncology (ASCO) Annual Meeting

GYN Cancer News from Cancer Network: https://www.cancernetwork.com/clinical/gynecologic-cancer

We'll use the following topic prompts (T#) to guide our discussion:

T1: What #SGOMtg presentations did you find most interesting?

T2: Which #ASCO23 studies do you think may be of most interest to patients?

T3: In the last year, have there been any practice-changing gyn cancer studies patients should know about? (cervical, endometrial/uterine, ovarian. vaginal, vulvar, or other)

T4: What are some of the "hot topics" in gynecologic cancer research currently?

T5: Both #ASCO23 and #SGOmtg held sessions on disparity and equity in cancer care. What was highlighted and how can we work to decrease disparities in gynecologic cancer care? 

T6: Cancer drug shortages were highlighted at both #SGOMtg and #ASCO23. What resources for health care providers and patients are available?

(Bonus if time) T7: Are there recent studies surrounding palliative care, survivorship, and psychosocial research that could help gyn cancer survivors?

We hope to see you on Wednesday July 12th! 

Dee and Christina 
Co-founders #gyncsm 

May 10, 2023 Urogynecology and Pelvic Health

 

The #gyncsm Community welcomed Jocelyn Fitzgerald, MD (@jfitzgeraldMD) and Theresa Feeley, PT, DPT, PRPC (@drtpelvichealth) as our guests to chat about Urogynecology and Pelvic Health. Eighteen participants, which included survivors, patients and physicians, joined us.

You may find the transcript and analytics for this chat on Symplur, part of Real Chemistry.

Here is summary of the topic questions and answers. 

T1: What is pelvic health and how can it be impacted by gynecologic cancer treatments?

• T1. Pelvic health involves the pelvic floor muscles. These are muscles that create a sling between the hip bones and lower spine. They assist in the stability of the hip girdle and support of the pelvic organs.
• T1: These muscles aide in bowel, bladder and sexual function. To do this, they need a balance of strength and flexibility. They lift up to hold things in (urine, stool, gas) and relax down to let things out (urine/stool) or to allow intercourse, tampon use, GYN exams.
• T1: Surgical and radiation interventions with gynecological cancer care can alter the muscle function, creating scar tissue and weakness. This sometimes leads to vaginal or pelvic pain, pain with intercourse, urinary/stool incontinence, to name a few.
• T1: "Pelvic Health is the best possible functioning and management of the bladder, bowel, and reproductive organs... not merely the absence of disease or weakness... Pelvic health plays an important role in ... physical, mental, social, and sexual well-being." @bcmhouston
• T1: Gyn cancer treatments, such as surgery, chemotherapy, and radiation, can all be used to cure cancer or reduce symptoms, and can also result in short & long term effects that can impact quality of life. Always important to talk to your doctor.

T2: What role does a urogynecologist play in the care of those diagnosed with a gyn cancer?

• Both Urologists and Gynecologists can do fellowship training in female specific pelvic floor issues and become a Urogynecologist. We specialize in bladder issues like incontinence, recurrent UTI, pain vaginal prolapse, sexual dysfunction, vulvar issues, fistula, birth trauma, vaginal stenosis, fecal incontinence, etc.
• T2 What on Earth Is Urogynecology https://pennmedicine.org/updates/blogs/womens-health/2015/june/what-on-earth-is-urogynecology via @PennMedicine
• "What Is the Difference Between a Urologist and a Urogynecologist? Urology is a more general field than Urogynecology. For example, urologists treat women, men, and children. Urogynecologists, on the other hand, deal only with matters of a woman's pelvic floor.

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

• Physical therapist use conservative options for alleviating pain. PT can do manual soft tissue massage throughout abdomen, incision sites, hip girdle and also in vaginal canal directly on pelvic floor muscles to relieve tension creating pain.
• We can do several things. We can do combined surgery with Gyn/Onc (for example, repair prolapse or treat incontinence at the same time as cancer surgery, and we can help manage symptoms like GenitoUrinary Syndrome of menopause, recurrent UTI, and sexual pain we can also help with fecal incontinence, radiation changes, urinary urgency, etc.

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

• The muscles of the pelvic floor need to relax and stretch for intercourse. When there is increased tightness in these muscles, penetration can be painful. Soft tissue work (with a PT or done yourself) can reduce the tightness to allow for pain free intimacy.
• I recommend talking about this early and often. For men with prostate cancer, for example, sexual changes they can expect from treatment come up right away. The same is not done for women, so you should advocate for yourself. Ask what anatomic changes you can expect. Will you have a partial vaginectomy? Will your ovaries be removed? Will you have radiation or chemo? All of those things can affect sexual function in different ways.
• Tightness in the pelvic floor muscles can create a referred pain to the vagina, vulva and inner thighs. This also affects intimacy. I have heard it referred to as burning or cat’s nails. It's a similar effect to a knot in your neck that refers pain into your arm.
• Ask what can be done to protect the vaginal and vulvar tissues, ask about hormonal treatments like vaginal estrogen. Ask about hormone replacement
• Lubrication can be very helpful for pain free intimacy. Muscle tightness, medications, surgeries, stress, hormonal levels and many other things can result in dryness in the vaginal tissues increasing pain.
• Pelvic floor wands are tools made to use in the vaginal canal to address muscular tightness. This can be done at home to compliment pelvic floor therapy.
• T4: Dilators are a cylinder-shaped device that it used to help stretch the vaginal canal to work towards pain free intercourse. They are inserted similar to a tampon, in a comfortable position for 15-20 minutes. They progressively get larger to increase the stretch.

T5: What is pelvic floor physical therapy? How are patients evaluated for the need?

• Pelvic floor physical therapist evaluate the muscles of the pelvic floor. We can assess strength, endurance, tension and pain both externally and internally with a finger placed in the vaginal canal. We also assess the hip girdle, lower spine, abdomen and breathing. The pelvic floor works with your breath. Using your breath in specific stretches or yoga poses with help to release tension in muscles. This will allow the muscles to relax and decrease pain
• We combine many techniques based on the specific person. We can use massage externally and internally to loosen tissues. We sometimes focus on hip mobility, stretching, breathing and yoga poses. We also use a ton of education and home exercise programs.
• A wonderful form of physical therapy that rehabilitates the pelvic floor muscles and connective tissues so that they can perform their functions in a coordinated, pain-free fashion. It also involves breathing techniques and other maneuvers.

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

• "Come As You Are" by Emily Nagoski is a great resource for intimacy and sexual health. It does not address pain with intercourse, but talks about your relationship with your body and women's sexual health
• Foundation for Women’s Cancer @GYNCancer publication Sexuality & Intimacy: Your Guide https://foundationforwomenscancer.org/wp-content/uploads/2019-FWC-Patient-Education-Handouts-Sexuality_FINAL.pdf
• I found this info helpful before I started PT at @AtlanticPT https://atlanticpelvichealth.com/pelvic-floor

Thank you Drs. Jocelyn Fitzgerald and Theresa Feeley for sharing your expertise with our community. We will not be holding a chat in June. Join us for our next chat on July 12th at 8pmET as we discuss GYN Cancer Research News from this year’s ASCO and SGO Annual Meetings.


Dee and Christina
#gyncsm Co-Founders

Urogynecology and Pelvic Health - May 10, 2023

It has been over 4 years since the #gyncsm community chatted about pelvic health, which is one of our highly requested topics. We are so happy to welcome Jocelyn Fitzgerald, MD (@jfitzgeraldMD) and Theresa Feeley, PT, DPT, PRPC (@drtpelvichealth) as our guests on this month's #gyncsm chat on Urogynecology and Pelvic Health. Dr. Fitzgerald is an Assistant Professor in the Department of Obstetrics, Gynecology and Reproductive Sciences, Division of Urogynecology and Reconstructive Pelvic Surgery at the University of Pittsburgh (https://www.obgyn.pitt.edu/people/jocelyn-fitzgerald-md). Dr. Feeley is the Director of Pelvic Health and Wellness Center at Atlantic Physical Therapy Center (https://atlanticptcenter.com/theresa-wilk-freehold-nj-pt-dpt-pelvic-floor-pt/ )

We know surgery and other cancer treatments can adversely affect the pelvic health of those diagnosed with a gynecologic cancer. Join us on May 10th at 8pm ET (7pm CT, 5pm PT) as we learn how a urogyneocologist and a pelvic floor physical therapist can help improve pelvic health. 

Here are the topic questions that will guide our chat.

T1: What is pelvic health and how can it be impacted by gynecologic cancer treatments?

T2: What role does a urogynecologist play in the care of those diagnosed with a gyn cancer?

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

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

T5: What is pelvic floor physical therapy? How are patients evaluated for the need?

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

 

We look forward seeing you at 8pm on May 10th. 

 

 

Dee and Christina 

Co-founders and Co-moderators #gyncsm 

March 8, 2023 Open Mic and 100th Chat

What better day than International Women's Day to celebrate our 100th Chat. We had fifteen participants join us. You may find our transcript here and additional analytics here.

We began the chat by sharing our updated logo.  

The colors now reflect more gynecologic cancer awareness colors. 

We shared how #gyncsm chat sessions have been used in three different journal articles. You can view links to these as well as links to articles that reference cancer hashtag communities on our blog's  Publications page: http://gyncsm.blogspot.com .

Next we talked about our chat topics through the years. Check our Chat Topics page (http://gyncsm.blogspot.com/p/chat-topics.html) on our blog to see other topics. Here are three chats mentioned. 

• "Research Advocacy" with @RANAdvocate
• "Immunotherapy" with@CSHinrichsMD and patients @SurvivorSueWDC @mandmsportsmom who shared directly about being in a trial.
• "Reading Scientific Posters" with @KDRichardson924 and SASEP team

Next we discussed the OCRA Ovarian Cancer Screening and Symptom Awareness Consensus Statement . 

"#gyncsm re use of symptoms; important of course for early care advocating for work up but it is important re nuances also bc many pts coming blaming themselves for not knowing or coming in earlier when sometimes not be possible. I liked this summary,"

Two participants shared projects or campaigns they are working on. 

We are a nonprofit raising funds for #ovariancancer research, and promoting scientist/survivor collaboration in research. Sending 2 advocates to AACR next month to participate in SSP. #gyncsm

— Powell-Drescher Ovarian Cancer Research Foundation (@PowerOvarian) March 9, 2023

I'm starting a non-clinical gynecologic oncology patent navigator practice. I've been busy applying for grant funding. I will also handle financial matters. #gyncsm

— Codemo Writing Services (@roberta_codemo) March 9, 2023

We closed our chat in the usual way asking for TIL "Today I learned" and @gyncsm began by sharing:

From #gyncsm Chat #1:
TIL: This community is fantastic. I have high hopes for us - and glad to have found all of you. @drmarkham

TIL: A new way to connect and share with a community of people living with, advocating for and caring for GYN cancers! awesome! @eberrygynonc

— Christina Lizaso (@btrfly12) March 9, 2023

There is no chat in April but Save the date for our next #gyncsm chat on Wednesday, May 10th, at 8pmET to talk about “Urogynecology and Pelvic Health”. 

Dee

Open Mic and 100th Chat March 8, 2023

 

Christina and I are happy to invite you to #gyncsm's Open Mic and 100th Chat on Wednesday March 8. 2023 at 8pm ET. It seems like only yesterday when together with three gynecologic oncologists, Drs Dizon, Markham, and Boulay, we held our first chat in September 2013. 

To celebrate our 100th chat, we updated our logo.  

We've added three intersecting ovals (teal, peach, purple) to represent the intersection of those impacted by different gyn cancers into one community.

We thank each and every guest host and health care provider and researcher for providing important information to countless patients, survivors, advocates and caregivers through these chats. Our topic list is lengthy, but we focused our chats on the gyn cancers and their risks, advocacy, caregiving, quality of life, clinical trials, research results, news from medical conferences, genetics and personalize medicine, emotional and physical support, survivorship issues, recurrence, and how to work best with your doctor. Have a look at them all here.

On Wednesday we will open the floor to questions from this broad community in this 8th edition of an "Open Mic" chat. 

What's on your mind? 

• Do you want to discuss OCRA's  recent consensus statement on fallopian tube removal to reduce risk of ovarian cancer? Or how to participate in OCRA's program free genetic testing program? 
• Do you want to share your experience in a clinical trial? Or how to discuss clinical trials with your doctor?
• Do you want to discuss the latest research in treating endometrial cancer?
• Do you want to know what you can do to improve equity of treatment?  
• Do you want to discuss the  use of mirvetuximab soravtansine-gynx, Elahere,for women with recurrent ovarian cancer? 
• Do you want to know if others are experiencing QOL issues like yours? 
• Do you want to discuss low-dose aspiring use for ovarian cancer risk reduction? 
• If you are a health care provider, do you want to know where your patients get information? 
• Do you want to talk about getting involved in advocacy? 

 

What better day to join with other patients, survivors and health care providers that on International Women's Day. We hope to see you on Wednesday. 

Dee and Christina

#gyncsm co-foudners