Dec. 11, 2019 Survey Results and Open Mic

What a nice way to end 2019, by sharing the results of our Community Survey followed by an Open Mic night. We were happy to have 17 participants. It was great to see some regulars and to welcome some new folks to the evening's chat. You may find additional analytics here. A complete transcript may be found on Symplur.

We shared five graphics showing some of the results of our survey.

Who responded to our 2019 survey?

How did participants interact with the community?

What was learned and used by survey participants?

 What were the most important topics covered in #gyncsm chats? 

How can #gyncsm do better? 

We then moved on to the Open Mic portion of the hour. We opened the floor for comments or questions from the community. Comments and responses may be found below. 

1. The difficulties women with ovarian cancer have getting into phase 3 clinical trials and recruiting minorities to clinical trials. 

• Clinical trials are tough as each one is so different and finding even the right contact person at each site is a challenge. @power4patients and others have good resource collections but still daunting
• You can find all the clinical trials open in the country on https://clinicaltrials.gov/  You can search under ovarian cancer. Or often times your local health networks will have them on their website.
• Is it based on location, I wonder, or other factors about age, stage, and treatment? I wonder if that will change when a PARBs more readily available earlier no matter what BRCA status?
• Women get frustrated by exclusion criteria too. Very disheartening for those who feel they’ve run out of options.
• Helping Cancer Patients Navigate #ClinicalTrials #gyncsm #ovariancancer Via ⁦@biospace⁩ https://www.biospace.com/article/helping-cancer-patients-navigate-clinical-trials/

2. It still seems that minority pops are overlooked in clinical trials, yet the data from these groups is crucial. Minority participation still stand at around 4%, well below the national averages. Why is this? 

• That's a great question. My cancer center just opened a Health Disparities center to try to understand and increase numbers of minorities who participate. As for why - I'll start with Language barriers, travel, child care,
• Black and Hispanic women are definitely under-accrued to clinical trials in ovarian cancer but this disparity is less pronounced in endometrial and cervical cancer
• That question has been explored quite a bit. There are a number of findings. The first is language barriers make it difficult to explain studies to nonEnglish speaking people. The second are cultural barriers formed by mistrust of The medical establishment.
• Those are some real issues, especially the issue of trust. But that places a lot of the ownership on the populations, not the industry. I'd include the fact that clinical trial orgs often use the old pipelines for trials & are not inclusive and they need to be.
• Enrollment of Racial Minorities in Clinical Trials: Old Problem Assumes New Urgency in the Age of Immunotherapy | American Society of Clinical Oncology Educational Book https://ascopubs.org/doi/full/10.1200/EDBK_100021#_i6

3. Surgery for Recurrence Ovarian Cancer Does Not Improve Survival    https://www.cancer.gov/news-events/cancer-currents-blog/2019/ovarian-cancer-surgery-recurrent-survival

• I’m still assuming that additional surgery is good for women who don’t respond well to chemo..?
• That's disheartening. I'll have to read it later. I wonder if that conclusion applies to all cell types and grades of ovca.

4. Research and ovarian cancer advocate @Stigetta was involved in this paper that just came out: A Priorities Assessment Tool to Support Shared Decision Making, Maximize Appointment Time, and Increase Patient Satisfaction in Women With Ovarian Cancer

https://ascopubs.org/doi/abs/10.1200/JOP.19.00455?utm_source=Email&utm_medium=Email&utm_campaign=JOP+ETOCs+9.4.19+Ongoing&email=865aa94a58f0b27b9edd2aa71d80e9a99b924971f7ce90316a0d742b2e9c9b1c&

5. Did you see this Nature article: Both fallopian tube & ovarian surface epithelium are cells-of-origin for HGSOC https://www.nature.com/articles/s41467-019-13116-2#Sec10

Please join us in January - one week later than usual - on Wednesday Jan 15, 2020 for our chat about “Goals of Care throughout the Cancer Experience” . 

Happy Holidays everyone! 

Dee

#gyncsm Co-founder 

Resource links shared, but not included above:

Coping with the holidays while in treatment for cancer - http://globeathon.com/blog/holidays-past/

Social Media Hashtags - https://www.sgo.org/social-media/social-media-hashtags/

Summaries of all #gyncsm chats - http://gyncsm.blogspot.com/p/chat-topics.html

Patient Empowerment Network Clinical Trial Resource Pages - https://powerfulpatients.org/hub/generalhealthinfo/general-health-information-treatment-clinicaltrials/

The generalizability of NCI-sponsored clinical trials accrual among women with gynecologic malignancies - https://www.gynecologiconcology-online.net/article/S0090-8258(16)31432-9/abstract

Why Are Uterine Cancer Rates Rising So Drastically in Black Women? - https://www.self.com/story/uterine-cancer-black-women

#gyncsm Survey results and Gyn Cancer Open Mic Chat - Dec 11,2019

We will end our chat year with a discussion of the results of the #gyncsm Community Survey we conducted in September and also allow our community to ask questions.

Some of the information we will provide about the survey is:

• Who responded to our survey?
• How did respondents interact in our community?
• What was learned and how was what was learned use?
• What were the most important chat topics we have discussed over the past few years?
• How can we have a better community? 

For the remainder of the chat hour we will hand the "mic" over to you to bring up topics of interest. This is our 4th "open mic" chat and we always enjoy the chance to bounce around where the topics take us. You may feel free to ask us about future #gyncsm chat topics (we are working on our 2020 schedule), about something you heard in the news that you found interesting or are curious about, about what questions others ask their nurse or doctor, or anything related to this community and the cancers that impact it. If we don't have an answer, we will happily research it for you and get back to you. We hope sharing your experiences and questions may help others in their experience.

We hope you can join us on Wednesday, December 11, 2019 at 9pm ET. 

See you then,

Dee 

Co-Founder #gyncsm 

November 13, 2019 Stress and Cancer Chat

The #gyncsm Community chat topic on November 13, 2019 was Stress and Cancer. We were pleased to see many familiar faces and to welcome some newcomers to our community. We had 26 participants with 1.8 million impressions. For complete analytics see this Symplur page and for the transcript please visit this page.

We began the chat by asking What is stress? 

“stress is a physical, mental, or emotional factor that causes bodily or mental tension. Stresses can be external (from the environment, psychological, or social situations) or internal (illness, or from a medical procedure).” 

https://www.medicinenet.com/script/main/art.asp?articlekey=20104

“Stress is the body's reaction to any change that requires an adjustment or response. The body reacts to these changes with physical, mental, and emotional responses.”

https://my.clevelandclinic.org/health/articles/11874-stress

Below are a few topic question responses. Please refer to the transcript for all the responses. 

T1: What are some of the internal and external factors which can lead to stress/tension when dealing with a cancer-related diagnosis? How can stress differ at diagnosis, during treatment, and following initial treatment?

• T1: Stress morphs throughout the cancer continuum. The stress of "not-knowing" at the beginning, the stress of the schedule and treatment during therapy, the stress about potential recurrence after the completion of therapy #gyncsm
• T1 being newly dx'd can itself be stressful internally. letting stress continue has been known to increase cancer-related mortality https://medicalxpress.com/news/2019-08-stress-cervical-cancer-patients-higher.html
• T1 External stress can be visits from family or holiday prep
• Internal things include our thoughts and emotions we are experiencing and how these influence our behaviors and coping. (T1) #gyncsm
• T1 This is an area where #SDOH comes into play. The stresses associated with social determinants of health can contribute to mortality rates for minorities dx'd w/ gynCA #gyncsm
• T1:Financial concerns were an enormous stressor for me. What if I couldn’t work? How would I support myself. #gyncsm

T2: What are some changes doctors and other healthcare providers could make to reduce stress along various points in the patient experience?

• T2 Social workers or navigators trained to help with practical things helps.
• T2 Physicians and other clinicians can take care of themselves so their stresses aren't projected onto patients. #gyncsm
• T2: Establish with the patient ahead of time whether they prefer to receive a cancer diagnosis in person. #gyncsm
• A2: Social workers trained for specific cancers. I met an #AYACancer social worker at @MDAndersonNews at the AYA clinic and it was life changing! She really understood my issues and had solutions. #GYNCSM
• T2 try & keep to the schedule & not have patients waiting endlessly in waiting room to be seen #gyncsm

T3: What steps can patients take to reduce stress and to address the physical, mental and emotional responses to stress? What do you find to be helpful?

• T3 I exercise - blow off steam #gyncsm
• A3: Be honest! With everyone! Care team, family, friends, coworkers, spiritual advisors, neighbors, it doesn’t matter. Share what you need and don’t feel bad about it!! Need space? Cool. Need food and Netflix? Invite me! #GYNCSM
• Early access to #PalliativeCare can improve symptom control and cancer-related outcomes. Our group helps deal with stress and anxiety as well! #gyncsm
• T3 therapy. Ask for help finding a therapist who is skilled at working with folks with a life-altering illness and uncertainty. #gyncsm
• No one likes this answer - but EXERCISE Improved quality of life during treatment and in survivorship. 30 minutes, 5 days a week @AmericanCancer #gyncsm
• T3 seek out support from others LIKE THIS GROUP. There is strength and growth in connection. #gyncsm
• T3 Patients should work with their doctor and/or therapist to develop coping mechanisms. Yoga could be a possibility or simple #mindfulness exercises or recreation #gyncsm
• I also tell patients to decide on a goal - have something to look forward to. A trip, a birthday, an anniversary... #gyncsm.
• T3: Address #stress in a whole-person approach: adequate nutrition, rest, daily movement, emotional support. One of the things I found most helpful was a good therapist & support group. That, and giving myself permission to not be okay. #gyncsm

T4: Some studies show use of a stress-lowering heart drug (beta-blocker) by women w/ #ovariancancer is associated w/ a longer OS (overall survival). https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.29392
(2015) Is this drug and/or other stress reduction protocols now included in treatment plans?

• This study #gyncsm is fascinating. But whether an improvement in outcomes from a beta-blocker is generalizable for all patients with ovarian cancer is yet unknown.
• T4 I just quicking review NCCN guidelines for Ovarian CA and survivorship and at this point beta blockers are not included in recs. #gyncsm
• .@DrRamondetta went on to combine this with chemotherapy in a #clinicaltrial - it was feasible! The study was too small to determine if the combination impacted survival outcomes #gyncsm

T5: What are some signs that stress is becoming "distress" and/or impactful enough on daily activities that additional help is needed? What is known about PTSD in patients?

• T5 There is a lot of research now in cancer diagnosis and treatment as trauma. So makes sense that cancer survivors experience PTSD. #gyncsm
• T5 Sustained elevated BP can be a sign that stress has become distress. Anxiety and manic moods could also be a sign that stress has increased. #gyncsm
• When stress is getting in the way of functioning it is escalating to distress and beyond. Its time to ask for help. #gyncsm
• PTSD/PTSD-like symptoms can happen during cancer diagnosis, treatment, and survivorship. I found the NCIs site for more info/resources: https://www.cancer.gov/about-cancer/coping/survivorship/new-normal/ptsd-pdq #gyncsm
• T5 Sometimes you can keep stress from becoming distress by logging off, shutting the electronic down and taking some me-time. Grab a little #netflixandchill #gyncsm
• T5 lets not forget the healing power of laughter---even laughing at ourselves. Humor can be a powerful tool. #gyncsm
• PTSD linked to increased risk of ovarian cancer - Reuters https://www.reuters.com/article/us-health-ovarian-cancer-ptsd/ptsd-linked-to-increased-risk-of-ovarian-cancer-idUSKCN1VY2BB #gy…

T6: A recent study showed stress is associated w/ #ovariancancer risk
https://cancerres.aacrjournals.org/content/79/19/5113.short What is the difference between associations, correlations and causes of cancer?

• T6: I'm guessing studies in this area - stress and cancer risk - are just coming out and there are many questions to answer. Here's some basics on "Correlation, Causation, and Association: What Does It All Mean?" https://www.psychologytoday.com/us/blog/all-about-addiction/201003/correlation-causation-and-association-what-does-it-all-mean #gyncsm

T7: Overall, what does research show about the relationship between the nervous system and the spread of cancer?

• There is this recent article on nerves and the spread of cancer https://t.co/9cX9FT5wfV #gyncsm An interesting article.
• T7 I think the research is fairly basic in this space. There needs to be more robust study of cancer survivors. #clinicaltrials #gyncsm
• T7 part 2 study of survivors in terms of risk for recurrence, coping, anxiety, depression, other stress sources, supports etc. #gyncsm
• Measuring stress is tricky. What's stressful for one person may not be so bad for another. Definitely we need more tools and research #gyncsm.
• T7 Central Nervous System Metastases in Patients With Cervical Carcinoma. - PubMed - NCBI https://www.ncbi.nlm.nih.gov/pubmed/27654265 #gyncsm

You may find resources mentioned during the chat at the end of this page. 

Please join us for our Open Mic and Discussion of #gyncsm Survey Results chat on Wednesday December 11, 2019 at 9pmET.

Wishing our community members in the US a very Happy Thanksgiving!

See you in December!

Dee

#gyncsm Co-founder

RESOURCES

Stress in Cervical Cancer Patients Associated with a Higher Risk of Cancer-specific Mortality

https://medicalxpress.com/news/2019-08-stress-cervical-cancer-patients-higher.html

PTSD Linked to increased risk of ovarian cancer 

https://www.reuters.com/article/us-health-ovarian-cancer-ptsd/ptsd-linked-to-increased-risk-of-ovarian-cancer-idUSKCN1VY2BB

Cancer related PTSD

https://www.cancer.gov/about-cancer/coping/survivorship/new-normal/ptsd-pdq

Correlation, Causation and Association What Does It All Mean

https://www.psychologytoday.com/us/blog/all-about-addiction/201003/correlation-causation-and-association-what-does-it-all-mean

Central Nervous System Metastasis in Patients with Cervical Cancer Carcinoma

https://www.ncbi.nlm.nih.gov/pubmed/27654265