June 14, 2017 Chat: Radiation Oncology - What is it? When is it used?

This month on Wednesday June 14, 2017, the #gyncsm community will be discussing:

Radiation Oncology - What is it? When is it used? 

There are a number of gynecologic cancers where the treatment protocol includes radiation therapy.

We are pleased that #gyncsm community supporter and #gyncsm Tweet Disclaimer author, Dr. Matthew Katz (@subatomicdoc), will be our guest for this important discussion. Dr. Katz is a radiation oncologist with Radiation Oncology Associates, Lowell Massachusetts. He is a contributor to ASCO Connection and co-founder of the radiation oncology journal club, #radonc and @Rad_Nation. He is also Chair of the Massachusetts Medical Society (@MassMedical) Communications Committee.

Our topic questions are:

T1: What is radiation oncology? How does it work to treat cancer?

T2: Which gynecologic cancers are treated with radiation therapy? Under what circumstances is radiation therapy recommended?

T3: What professionals are involved on the care team for radiation therapy? Who on your team did you find most helpful?

T4a: What are the differences in radiation therapy types for gyn cancer - external, internal, etc.?
T4b: Patients/Survivors/Loved Ones: Were the questions you had about radiation therapy answered for you?

T5: What side-effects and risks are associated w/ pelvic radiation? What tips do you have for controlling side effects? 

T6: What are some things a women can do to take care of herself during radiation treatments? Where can women learn more?

To learn more more about radiation therapy prior to our chat, please read Cancer.net's:
Understanding Radiation Therapy
http://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/understanding-radiation-therapy

We look forward to discussing this important topic with our community.

Dee and Christina
#gyncsm Co-founders

May 10,2017 Womanhood, Femininity and Cancer

This month the #gyncsm community discussed how cancer-related diagnoses affect a women's perception of her femininity and womanhood.

We were happy to welcome some new participants as well as catch up with our regulars. We had 29 participants and over 1.5 million impressions. You may find a transcript of our chat here and additional analytics here.

The following are the topics questions along with some responses. Resources shared during the chat are listed at the end of the post.

T1: Growing up, what did womanhood and femininity mean for you? How did you relate to these ideas?

• Womanhood / femininity = watching mom makeup high heels pretty clothes
• I always liked girly things, but never felt limited as a girl. Math/science were always my favorite. But love a good lipstick!
• city grandma gave me etiquette books - farm grandma led by example could do anything man could. I was tomboy
• I was never a traditionally"girly" girl--largely because I associated being a girl with being limited/different rules 

T2: How do patients and loved ones react when they learn female organs (ovaries, tubes, uterus, cervix, etc) may need to be removed?

• It seems to vary from person to person...some women "want everything out/I don't need these organs" to preferring no/minimal surgery 
• Even though I was in my late 40's when dx . It saddened me to loose what had nurtured my 2 children
• I know that I have worked with clients who struggle with losing body parts that are so identified as "female."
•  I'm more concerned with being around for my kids, but I certainly feel the weight of what body change may mean.

T3: How concerned were you with ideas of womanhood, femininity, and body image as you started treatment? Do patients bring this up?

•  I was surprised to see so little written outside of the breast cancer space on the topic if femininity and cancer...
• The very large scar - now that bothered me for a long time. Bothered me more than loosing my hair
• "Treatment" is so nebulous - always wondering when next shoe will drop.
• although my husband and I had decided not to have more children, I struggled that the option was taken away from me 

T4: In what ways has your diagnosis impacted your relationships, sexuality and your image as a women? Where do you seek support? 

• The Hystersisters group has some resources and community for those thrown into menopause.
• @cancerLGBT http://cancer-network.org/ has good resources including related to HPV, ovarian in lesbian, bi-sexual and transgender
• I always hope that people facing these choices are getting good mental health support.  

T5: What are some pelvic health resources for those impacted by cancer-related diagnoses?

• Good resource for some with pelvic radiotherapy side effects, or concerns of them http://www.prda.org.uk/
• Pelvic physical therapy is something I've only head about recently.
• Biofeedback PT is commonly used for pelvic floor therapy after childbirth. Impt to find a specially trained therapist
• one resource is @PelvicGuru1

Patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/gyncsm.  

We hope you will join us on Wednesday June 14, 2017 at 9:00pmEST as we discuss Radiation Oncology - What is it? When is it used? 

Remember to please tweet things of interest to our community using the #gyncsm hashtag between chats.

See you soon.

Dee

#gyncsm Co-founder


RESOURCES
"Altered Sexuality and Body Image after Gynecological Cancer Treatment: How Can Psychologists Help?"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3092554/

"Gender Identity Issues in Online Early-stage Gynecological Patient Discussions"
http://marketeching.com/gender-identity-issues-online-early-stage-gynecological-patient-discussions/

"Quality of life and psychosocial adjustment in gynecologic cancer survivors" https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-1-33

"Psychosocial adjustment in gynecologic cancer survivors:longitudinal study risk factors for maladjustment"
http://www.cancernetwork.com/oncology-journal/how-can-we-effectively-address-medical-and-psychological-concerns-survivors-pelvic-malignancies

"Assault on our Womanhood"
http://www.dailymail.co.uk/health/article-440358/Assault-womanhood.html

Susan Gubar's "Living With Cancer" articles touch on femininity-related issues:
https://www.nytimes.com/column/living-with-cancer

"A Letter To My Gynecologist"

http://www.ihavelynchsyndrome.org/letter-gynecologist/#

Blog post | "Redefining Womanhood:. A look back at 365 days cancer free…"
http://www.girlmeetsgeek.com/2014/05/28/redefining-womanhood/

"Cancer Treatment and Pelvic Health" By Elizabeth E. Houser, MD
http://awomanshealth.com/cancer-treatment-and-pelvic-health/

"How Can We Effectively Address the Medical and Psychological Concerns of Survivors of Pelvic Malignancies?"
http://www.cancernetwork.com/oncology-journal/how-can-we-effectively-address-medical-and-psychological-concerns-survivors-pelvic-malignancies

“I Feel Different”: Ovarian Cancer and Sexual Self-Concept “Women's reproductive health”
http://www.tandfonline.com/doi/abs/10.1080/23293691.2017.1276371?scroll=top&needAccess=true&journalCode=uwrh20

Video: "Ask The Doctor: Physically I feel good, but I feel sad."
http://www.hystersisters.com/vb2/videoshow.php?vid=514

"Post-treatment sexual adjustment following cervical and endometrial cancer"
http://onlinelibrary.wiley.com/doi/10.1002/pon.639/full

"Sexuality after gynaecological cancer: A review of the material, intrapsychic, and discursive aspects of treatment on women's sexual-wellbeing"
http://www.maturitas.org/article/S0378-5122(11)00212-X/abstract

"Tackling the Impact of Ovarian Cancer"
http://www.nursinginpractice.com/article/tackling-psychological-impact-ovarian-cancer

Womanhood, Femininity and Cancer- May 10th

We know that a cancer diagnosis and treatment can effect women in many different ways. Studies have shown that women who undergo a mastectomy perceive a loss of femininity. This month the #gyncsm community will discuss how a gyn cancer related diagnosis, surgeries and treatments can affect a women's femininity. How has surgery, chemotherapy treatments, scars and emotional issues affected you as a woman since your diagnosis?

Join us on Wednesday, May 10, 2017 at 9pm ET ( 8pm CT/ 6pm PT) as we use these questions to guide our discussion:

 

T1: Growing up, what did womanhood and femininity mean for you? How did you relate to these ideas?

T2: How do patients and loved ones react when they learn female organs (ovaries, tubes, uterus, cervix, etc) may need to be removed?

T3: How concerned were you with ideas of womanhood, femininity, and body image as you started treatment? Do patients bring this up?

T4: In what ways has your diagnosis impacted your relationships, sexuality and your image as a women? Where do you seek support?

T5: What are some pelvic health resources for those impacted by cancer-related diagnoses?

You can prepare for this chat by reviewing these resources:

"Altered Sexuality and Body Image after Gynecological Cancer Treatment: How Can Psychologists Help?" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3092554/

"Gender Identity Issues in Online Early-stage Gynecological Patient Discussions"
http://marketeching.com/gender-identity-issues-online-early-stage-gynecological-patient-discussions/

Christina and I look forward to seeing you on the 10th. 

Dee

#gyncsm Co-Founder

You can use THIS TOOL to determine the chat time in your local time zone.

Your Voice has Power- World Ovarian Cancer Day May 8, 2017

World Ovarian Cancer day is May 8, 2017. The theme of this year's day is Your Voice Has Power.

We can all spread the word and help others understand how ovarian cancer can affect women worldwide.

"Ovarian cancer is diagnosed annually in nearly a quarter of a million women globally, and is responsible for 140,000 deaths each year. Statistics show that just 45% of women with ovarian cancer are likely to survive for five years compared to up to 89% of women with breast cancer. "

In addition here are five key facts women throughout the world should know.
1. All women are at risk of ovarian cancer.
2. Awareness of the early warning signs of the disease could save lives.
3. Diagnosis at an early stage vastly improves a woman’s chance of survival.
4. Ovarian cancer is often diagnosed at a late stage.
5. Many women mistakenly believe the cervical smear test (Pap test) will detect ovarian cancer.

Source: World Ovarian Cancer Day website http://ovariancancerday.org/.

You may read our co-moderator Dee's story as well as other survivor stories on the World Ovarian Cancer website (http://ovariancancerday.org/personal-stories/dee/)

If you are on Twitter, help spread the word about World Ovarian Cancer Day. Tweet with the hashtags #WOCD #OvarianCancerDay to join the conversation.

Dee and Christina
Co-founders #gyncsm

SGO Annual Meeting Research Review and ASK the Docs - April 12, 2017

During this month's chat we discussed research reported on at the 2017 SGO Annual Meeting. We had 29 participants and over 1.5 million impressions.

If you would like to read the complete transcript please visit this Symplur webpage. Analytics may be found here.

Below please find some sample answers to the questions we asked during the chat.

T1: What #SGOMtg presentations did you personally find of most interest? Also, what were some of the "hot topics" of discussion?

• PARP inhibitors for RX of #ovariancancer continue to be a hot topic at #SGOMtg
• Was glad to see the study re: the HPV vaccine dosing - supporting that it can be reduced from 3 doses to 2
• lots of imp news. See my OCRFA SGO report https://t.co/bABRIboozG
• Very interesting to see the activity of #PARPi across all pts regardless of #BRCA status. Strongest effect in #BRCA mutant or HRD
• Sadly, maintenance treatment with taxanes in the upfront setting for #ovariancancer did not improve survival compared to placebo
• Sexual Health Ed Forum w/Don Dizon & Joanne Rush fantastic! tech info + how to talk abt sex & feelings abt talking abt sex 

T2: Which #SGOMtg studies do you think will most interest patients? Were there findings survivors need to take immediate note of? 

• I found this ERAS study of interest - how to make surgery less impactful on quality of life: https://t.co/ul4lYu0h81
• Carbo desensitization highlighted https://t.co/BRLcoQYs1S
• Sentinel lymph node mapping in #endometrial and #cervicalcancer was a hot topic at #SGOMtg - great way to reduce side effects!

T3: What was the #Trials4GynCancerNow campaign which took part during the #SGOMtg? How does gyn cancer trial access impact care? 

• Fewer trials means slower progress. Also means less access to novel therapies for patients who have limited options. #gyncsm 
• Our #gyncsm blog post https://t.co/JvU8IHk3oi
•  restructuring cooperative groups impacted number too
• This is a huge issue - #GynCancers are no longer the priority of the cooperative group
• 90% reduction in phase 3 clinical trial participation is startling to me

T4: What was something you learned or were reminded of during #SGOMtg that you plan to implement or follow-up on? 

• earlier palliative care study was important for patients to hear as well as health care providers
• This has been shown in multiple cancer types - earlier palliative care involvement yields better outcomes
• palliative (or supportive) care is valuable in dealing w/ side effects of cancer and treatment no matter where in journey
• There is a big push 4 pt reported outcomes - a great way to measure impact on #QOL - especially when drugs have similar outcomes 

T5: For our last topic, we'll let our participants ask questions they have about gynecologic cancer research. Also, what do you want to see research resources focused on? what are some gaps in research?

•  So many approved PARPi for treatment and maintenance, is there a preferred order of use? What do we know about serial PARPi S/Es? These are questions that we need to answer- there are a few differences in first use side effects - we don't know about serial 
• I'm wondering what the mood was like about the future of cancer research funding and the cancer moonshot initiative? I know the young researchers at my NCI Comprehensive Ca center were worried about support.
• Is any research being done on psych wellbeing, supportive care mindfulness etc combined with meds? I tend to see studies like that coming out of Oncology Nursing Society ONS 
• I'd like to see more resources dedicate to ensuring current research can be more easily implemented in practice
• Good to see some research on rarer gyn cancers like this one on Vulvar cancer https://t.co/jTCQC18Boy 

Abstracts from the SGO Annual Meeting may be found at
https://sgo.confex.com/sgo/2017/meetingapp.cgi/ModuleSessionsByDay/0
For addition Resources, please scroll down.

Patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/gyncsm

We hope you will join us on Wednesday, May 10, 2017 as we discuss Womanhood, Femininity and Cancer. 

See you then.

Dee
#gyncsm Co-Founder

RESOURCES

Highlights from the 2017 SGO meeting- OCRFA, Annie Ellis 
https://ocrfa.org/wp-content/uploads/2017/03/Ellis-2017-SGO-summary.pdf

Summary article from @cancernetwrk
http://www.cancernetwork.com/sgo-2017

@cure_magazine Highlights from #SGOmtg
http://www.curetoday.com/conferences/sgo-2017?p=2

@StephanieVBlank of @NYULMC will present the latest info on #ovariancancer from @SGO_org 's annual meeting: https://www.sharecancersupport.org/ovarian-cancer/educational-programs/?lm=https://share-web.fcny.org/listings/programs/ovarian_cancer_what_s/?bu=https://share-web.fcny.org/listings/programs/%3Faction%3Dview%26category%3D128175%26location%3D-%26language%3Den-us%23ovarian-cancer-what-s-new

#Trials4GynCancerNow campaign
http://gyncsm.blogspot.com/2017/03/advocating-for-gynecologic-oncology.html

Crisis in Gyn Cancer Trials
https://www.sgo.org/wp-content/uploads/2012/09/SGO-Clinical-Trial-Crisis-FINAL.pdf

Foundation for Womens Cancer: Closer Look
https://www.youtube.com/watch?v=sVObSzkf_B0&feature=youtu.be

#CTAW2017 (Clinical Trials Awareness Week) chat on Tue May 5th at 1pmET 

Past #SGOMtg Research Recap #gyncsm chats: 2014 https://t.co/wUiAM3hp9K 2015 https://t.co/w1ZwfH1xQH and 2016 https://t.co/5sqJnrCGNY

Tweet summaries from #SGOMtg  @womenofteal 's blog http://womenofteal.blogspot.com/ - See March 2017 posts

April 12th Chat: SGO Annual Meeting Research Review and ASK the Docs

This month's #gyncsm chat, on April 12th at 9:00pm EST, will focus on research news from the 2017 SGO Annual Meeting on Women's Cancer including a segment we call ASK the DOC. 

The SGO (Society of Gynecologic Oncology) Annual Meeting on Women's Cancer (#SGOmtg) was held in National Harbor, MD on March 12th to the 15th. You may access the meeting agenda, speakers and presentations by visiting:
https://sgo.confex.com/sgo/2017/meetingapp.cgi/Home/0

We will begin our chat on Wednesday by discussing research results reported at this year's annual meeting and then have participants "ask our Docs" questions. 

These questions will guide our chat: 

T1: What #SGOMtg presentations did you personally find of most interest? Also, what were some of the "hot topics" of discussion?

T2: Which #SGOMtg studies do you think will most interest patients? Were there findings survivors need to take immediate note of? 

T3: What was the #Trials4GynCancerNow campaign which took part during the #SGOMtg? How does gyn cancer trial access impact care? 

T4: What was something you learned or were reminded of during #SGOMtg that you plan to implement or follow-up on? 

T5: For our last topic, we'll let our participants ask questions they have about gynecologic cancer research.

If you would like a preview of some of the research presented at the meeting, please read this excellent report on Highlights from the 2017 Annual Meeting on Women's Cancer by research advocate, Annie Ellis (@Stigetta) or visit the Cure Magazine Conference page for eleven articles discussing research presented at the meeting. Or view the Foundation for Womens Cancer video below. 





See you on the 12th!

Dee
Co-moderator #gyncsm 

Advocating for Gynecologic Oncology Clinical Trials - #Trials4GynCancerNow

The SGO (Society of Gynecologic Oncology) is conducting their Annual Meeting March 12-15, 2017. You can follow research presented at the meeting by following the hashtag #SGOMtg on Twitter. Note that we'll discuss SGO Meeting highlights during our April 12th #gyncsm chat. 

During their annual meeting, SGO will be conducting a social media campaign to advocate for gynecologic cancer clinical trials. #gynscm is please to support this campaign and we hope you will join us.

There has been a steep decline in the number of clinical trials in gynecologic cancer since the restructuring of the NCI-sponsored cooperative groups in 2012.  Information about the campaign can be found in this SGO document.

You can join us as we support this campaign by tweeting the following starting on Monday, March 13th at 9:35amEST:

Women with #gyncancer deserve progress. Fund trials now @realDonaldTrump #Trials4GynCancerNow @SGO_org

Feel free to send additional tweets using #Trials4GynCancerNow to encourage increased funding of NCI trials. 

Thanks, 

Dee

#gyncsm Co-Founder