Our 2nd Anniversary Chat 9/9/15 : GCAM and a Spotlight on Uterine Cancer

Christina and I want to thank our health care moderators, supporters and chat participants for being a part of the #gyncsm community. This month marks our Second Anniversary and we would not be an active vibrant community without your help and support.

This month we will be talking about Gynecologic Cancer Awareness Month and will also chat about uterine (endometrial) cancer. We are pleased to be joined by Lynne Braden (see her story here on our blog), uterine (endometrial) cancer survivor and founder of GynCAN (Gynecological Cancer Awareness Network). We are also pleased to be joined by Carrie Oliveira, uterine (endometrial) survivor and founder of The Iris Foundation.

The questions guiding our chat include:

T1: Let’s start with Gyn Cancer Awareness Month #GCAM. What do you wish others knew about your gyn cancer? What are some key points?

T2: Share ways you are raising awareness during #GCAM, everything small to big. Let's replicate great ideas and amplify the message!

T3: What are the #uterinecancer #endometrialcancer risks and symptoms? Survivors, what symptoms did you experience? How diagnosed? 

T4: What treatments are used for #uterinecancer #endometrialcancer? Which side effects have the biggest impact?

T5: Why do you advocate for yourself and others? How has your life changed because of a gyn cancer diagnosis?

For more information about uterine (endometrial) cancer, please view this video by the Foundation for Women's Cancer.

We hope you can join us on September 9, 2015 at 9pm EST.

New to twitter or tweetchats? View our tips:

Tweetchat Basics

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Tweetchat Etiquette

Dee
Co-Founder / Co-Moderator #gyncsm

Dealing with the Short and Long Term Side Effects of Gyn Cancer Treatments - August Chat

In last year's survey we asked participants what topics we should cover during this year's chats. A large number of survey takers chose Dealing with Short and Long Term Side Effects. Women diagnosed with a gynecologic cancer may have surgery, chemotherapy, radiation or targeted therapies. All of these treatments may lead to side effects - some more common than others. We look forward to sharing information about side effects and ways to deal with them on Wednesday August 12, 2015  ( 9pm EST) .

Here are chat questions:

T1: Let’s start w/ surgery side effects...  Which affected you most? Which do patients say are most impactful? Tips to address?

T2: Now let's talk about chemo. What were your side effects? Which are common? How aware of side effects are patients before start?

T3: What are some of the side effects of radiation? Which did you experience? What are patients most concerned about?

T4: For targeted therapy (TT) - Oliparib, Avastin, etc. - what are the side effects? Different from chemo?

T5: What side effects persist? Have you talked to your provider about them? Other side effects we haven't covered so far?

T6: What impacts are you willing to deal with to get more effective treatment? Have we seen changes in how side effects are managed?

Check out the information on side effects on the Patient Resource (@PRPCancerGuide) website (https://www.patientresource.com/Gynecologic_Side_Effects.aspx).

We look forward to having you join us for a lively and informative discussion.

Dee
#gyncsm co-moderator

July 8th chat - Dealing with Anxiety

This month on Wednesday July 8, 2015 the #gyncsm community will be discussing "Dealing with Anxiety".

Anxiety is defined as "a feeling of worry, nervousness or unease". The NCI states that anxiety disorders include excessive anxiety, worry, fear, and/or dread.

We hope that you will join us in sharing what aspects of cancer cause you anxiety and what you have learned that helps you cope with anxiety.

Below are the questions that will guide our discussion.

T1: What instances seem to cause the greatest anxiety among cancer patients and survivors? What are your triggers?

T2: Have you spoken to your healthcare provider about what causes your anxiety? Did it help? Do providers bring up and provide info?

T3: What are tips and resources to relieve anxiety? What have you found to be helpful in dealing with anxious feelings?

T4: In the bigger picture, what are ways that we can change the healthcare system itself so that patients experience less anxiety?

To prepare for the chat, here is a topic overview from the National Cancer Institute: "Adjustment to Cancer: Anxiety and Distress".  

We look forward to having you join us at 9pm (EST) on the 8th.

Dee

#gyncsm co-moderator

June 10th Chat - Palliative Care (A Joint Chat with #hpm )

Graphic by Christian Sinclair

This month on June 10th (9pm EST) we will be discussing Palliative Care. We are so happy to be hosting a joint chat with the #hpm (Hospice and Palliative Medicine) community. The #hpm chat founder, Christian Sinclair (@hpmchat / @ctsinclair) a palliative care and hospice medical doctor at the University of Kansas Medical Center and editor at Pallimed will be joining us. We also will welcome #hpm moderators Ashley and Niamh.

Our discussion will be guided by the following questions:

T1: What does the term "palliative care" mean to you? How do you think palliative care differs from hospice?

T2A: Have you discussed palliative care with your doctor? Who brought it up? How did it make you feel?

T2B: When in the patient's treatment do they tend to get referred to a palliative care specialist? When is ideal?

T3: Are there medical / insurance requirements to obtaining palliative care?

T4: What do you wish you would have known about palliative care? Doc's: What do you wish your patients knew?

T5: For those with experience with palliative care, what were the positives / negatives?

To prepare for the chat you may read this palliative care fact sheet from the NCI (@NCI).

http://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet

Also this article from Cancer.Net (@cancerdotnet).

http://www.cancer.net/navigating-cancer-care/how-cancer-treated/palliative-care/caring-symptoms-cancer-and-its-treatment

And this journal article Comprehensive Care in Gynecologic oncology: The importance of Palliative Care. 

Remember if you want to learn more about how to participate in tweet chats you can read this blog post. For this joint chat, include both #gyncsm and #hpm in your tweets.

We look forward to having you join our discussion or come and "lurk and learn".

Questions? Contact us at gyncsm@gmail.com.

Dee

#gyncsm co-founder and co-moderator

May Chat : Advances in Personalized Medicine for GYN Cancer

Our October 2013 chat topic was "Genetics and Personalized Medicine". Many new developments and initiatives have occurred since then. During our May 13, 2015 (9pm EST) chat we will provide an update on advances made in personalized medicine and how they impact the care of patients with gynecologic cancers.

In addition to our regular Health Care Moderators, Dr. Scott Richard (@sdr2md) Director of the Division of Gynecologic Oncology at Hahnemann University Hospital and Kelly Mellott and Dr. Juan Avila from Helomics™ Corporation (former known as Precision Therapeutics; they will be tweeting as @HelomicsCancer) will join us for this important discussion. Helomics™ Corporation is a healthcare company that develops innovative diagnostics for the oncology field. PLEASE NOTE: Helomics' participation in this chat is NOT an endorsement of the company's products or services by the #gyncsm community or our health care moderators.

The discussion questions are:

T1A: What are some misconceptions you've heard about personalized medicine?
T1B: What personalized medicine options are currently available to gyn cancer patients? What is tested - tumor tissue, blood?
T2: How does genetic testing impact treatment decisions? What genetic tests are recommended for gyn cancers?
T3: How can I discuss personalized medicine options with my cancer care team? What if my doctor doesn't believe in these options?
T4A: How do you think the President’s Precision Medicine Initiative will affect patients/ research?
T4B: What are the challenges to bringing the benefit of personalized medicine to gyn cancer patients? How will patient care change?

To prepare for our discussion you may read  President Obama's Precision Medicine Initiative Fact Sheet . Additional articles/resources may be found on the CDC's Public Health Genomics page and on the NCI's Precision Medicine and Targeted Therapy page.

We look forward to having you join our discussion or come and "lurk and learn".

Dee
#gyncsm co-founder and co-moderator

April Chat: SGO Annual Meeting Recap and ASK the DOC

This month's #gyncsm chat ( 4/8/15, 9pm EST) will focus on news from the SGO Annual Meeting on Women's Cancer including a segment we call ASK the DOC. 

The SGO's  (Society of Gynecologic Oncology) Annual Meeting on Women's Cancer was held in Chicago on March 27th to the 31st. The SGO " is the premier medical specialty society for health care professionals trained in the comprehensive management of gynecologic cancers" and they encourage research and provide education for women's cancer care. The agenda included presentations and poster sessions on the prevention and screening of gyn cancers, novel approaches to the management of gyn cancers, translational research, improvements in patient outcomes as well as the implications of global research. 

We will begin our chat on Wednesday by discussing research results reported at this year's annual meeting. Some of the studies include:

FANG vaccine for ovarian cancer 

GOG 213 (a randomized trial comparing carboplatin and paclitaxel with or without bevacizumab in platinum sensitive relapsed ovarian cancer patients.)

Immunotherapy

Parp inhibitors including  Cediranib and Endometrial cancer

An HPV study on cervical cancer & the CTC (Circulating Tumor Cells)  / Bevacizumab (Avastin) study  

BRCA 1 & 2 mutations: One study showed that a  majority of BRCA carriers don’t have family a family history of breast or ovarian cancer while a second study showed that most ovarian cancer patients don’t know their BRCA status. 

Benefits to being treated at a high volume hospital

Join us as we discuss how studies such as these will impact surveillance, education and treatment.

You may read the abstracts from the meeting here. While videos from the meeting including "Meet the Professor" may be found here. Some tweets related to studies reported on at the annual meeting may be found on the blog posts SGO From a Distance and SGO From a Distance Part 2. 

OCNA has provided highlights from the meeting that are of particular interest to ovarian cancer survivors here. Additional highlights provided by Cancer Network (home of the Journal Oncology) may be found here. 

Included in this chat will be our ASK the DOC segment. All chat participants (patients, survivors, caregivers, advocates, etc.) will have the opportunity to ask our docs questions related to the research reported on at the meeting. Maybe there is a research area we had not covered that you are interested in learning more about. ASK the DOC is the perfect time to get your questions answered. 

We are pleased that this month our health care moderators (Dr. Don S. Dizon, Dr. Rick Boulay, Dr. Merry-Jennifer Markham, Dr. Ann Becker-Schutte) will be joined by Dr. William Winter III, a gynecologist oncologist and lead guitarist with NED The Band. Dr. Winter will be tweeting as @NEDthemovie. 

We look forward to you joining us as we talk about the latest research on gynecologic cancers. 


Dee
#gyncsm co-moderator

March Chat: "No One Ever Told Me..."

We invite all gynecologic cancer survivors, caregivers and health care providers to join us for our March Tweet Chat on Wednesday, March 11th, at 9pm EST ( 8pm CST / 7pm MST / 6pm PST). This month we will ask you to share your thoughts on what you (or your patients) wish you knew about gynecologic cancers, treatment and survivorship. We will also ask you to share tips that helped you through the various parts of your life as a survivor / thriver.

We hope these topic questions will provide food for thought. 

T1A: For patients/survivors/loved ones, share "No one ever told me  ___ ". 
T1B: For our healthcare professionals/advocates, what do patients seem to be most surprised about or even blindsided by? 

T2A: Are there things you wish you knew before your (or your loved one's) treatment (incl. surgery, chemo, radiation)? 

T2B: Healthcare professionals: What are you surprised that patients don't ask about?

T3: What pre and post surgery and/or pre and post chemo tips seem to help the most or you wish someone had told you?

T4: For those who have completed initial treatment, what do you wish people told you about survivorship - physical & mental? What are the on-going care needs and issues that surprised you or you wish you had more information about beforehand?

Remember survivors and caregivers can also join the discussion on Smart Patients - before and after the chat. You can sign up at  https://www.smartpatients.com/gyncsm .

We look forward to having a lively discussion. 

Dee

Co-moderator

February Chat: Care Beyond Medical Care

This month's chat will take place on Wednesday, February 11, 2015 at 9pm EST (8pm CST / 7pm MST / 6pm PST). 

Our  topic will be Care Beyond Medical Care. We will be joined by Reimagine: "Medicine treats your cancer, we help you take your life back. Take a class today."
( reimaginecancer.com | @Reimagine_ME )

For further reading on this topic, here's an OpEd piece by Cindy Finch of Reimagine.ME
http://www.latimes.com/opinion/opinion-la/la-ol-cancer-treatment-psychosocial-healthcare-20150121-story.html

Topic Questions: 

T1: Many patients feel they lose control of their life while in treatment. What can help? What did you do to take control? 

T2: Did you pamper yourself while in treatment? What did you do? What did others do for you? Tips for those in treatment now? 

T3A: Dealing with a gyn cancer can cause stress. What things do you find helpful in reducing stress? What are some resources?

T3B. Did you ever feel pressured to be "happy" and "positive" ? How did you respond to people who said you needed to be.

T4: Feeling sad & experiencing depression is common for survivors. What helps you deal w/these feelings? Did you bring up w/ doctor?

We look forward to having you join us for a lively and informative discussion. 

Dee

#gyncsm co-moderator

January Chat Topic Questions : Gynecologic Cancer Risk Factors

Happy New Year!

We begin this year's chats on January 14, 2015 at 9 pm EST. We will be discussing the risk factors for gynecologic cancers. "A risk factor is anything that increases a person’s chance of developing cancer." - @cancerdotnet.  

Following the questions you will find links to information from Cancer.Net, the Mayo Clinic and the Foundation for Women's Cancer on the risk factors of each gynecologic cancer.

Topic Questions:
T1A: Are you aware of the risk factors for gyn cancers? When did you learn them? How have they influenced your health decisions?

T1B: Providers - Have your patients asked you about risk factors before or after diagnosis?

T2: Viral infections caused by HPV virus raise risk for cervical, vaginal & vulvar cancers. What do women & parents need to know?

T3: What is DES (Diethystibestrol)? How are women exposed to the hormone? What are the risks?

T4: Genetics are thought to account for as much as 25% of GYN cancers. BRCA has received media attn. What are other genetic risks?

T5: Have you tried to reduce your risk for cancer, recurrence or other cancers? What can women do w/ the info about risk factors?


Links for Gyn Cancer Risks:

Risk factors for ovarian cancer  from @cancerdotnet http://www.cancer.net/cancer-types/ovarian-cancer/risk-factors-and-prevention

Risk factors for cervical cancer from @cancerdotnet

http://www.cancer.net/cancer-types/cervical-cancer/risk-factors

http://www.cancer.net/cancer-types/cervical-cancer/prevention

Risk factors for uterine cancers from @cancerdotnet

http://www.cancer.net/cancer-types/uterine-cancer/risk-factors-and-prevention

Risk factors for endometrial cancer from @MayoClinic

http://www.mayoclinic.org/diseases-conditions/endometrial-cancer/basics/risk-factors/con-20033696

Risk factors for fallopian tube cancer @cancerdotnet

http://www.cancer.net/cancer-types/fallopian-tube-cancer/risk-factors-and-prevention

Risks for vaginal cancer from @cancerdotnet

http://www.cancer.net/cancer-types/vaginal-cancer/risk-factors-and-prevention

Risk for vulvar cancer from @MayoClinic

http://www.mayoclinic.org/diseases-conditions/vulvar-cancer/basics/risk-factors/con-20043483

Risks for GTD @GYNcancer

http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/gestational-trophoblastic-disease-gdt/risk-factors/

Risks for #primaryperitoneal cancer @GYNcancer

http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/primary-peritoneal/risk-factors/

We look forward to having you join us. 

Dee

Co-moderator

December Chat Topic Questions- Surviving the Holidays

Below are the topic questions for this month's ( 9pm EST on Dec 10, 2014 ) chat on "Surviving the Holidays". We are pleased to have The Robert H. Lurie Comprehensive Cancer Center of Northwestern University ( @LurieCancer ) join us for our discussion.

T1: How has your experience with cancer impacted your holiday traditions and celebrations?

T2: What tips can you offer to those going through the holidays while in active treatment?

T3: What's your advice on handling family and friends who still expect you to create the “perfect” holiday?

T4: How will your holidays be different this year? Will you ask for help? Did you ask your healthcare team about food & activities?

Christina and I look forward to having you join us for a lively and helpful discussion. 

Dee

#gyncsm Co-moderator

Topic Questions For Our November Chat

Wednesday's (November 12, 2014 at 9pm EST) #gyncsm chat topic will be "Complementary and Alternative Therapies".

Below are the questions that we will be asking during the chat. We will share helpful resources from the NCI, NIH and NCCAM as well as welcome Lynne Feldman, author of Integral Healing and Meg McQuarrie, founder of the  Elixir Fund to our chat. 

T1: Are you familiar with complimentary therapies? How do patients hear about? Which have you tried?

T2: Which complementary therapies from your viewpoint seem to be most helpful? Ones to avoid/delay under certain circumstances?

T3A: If you looked into or pursued alternative therapy, pls share your decision process, experience, outcomes.
T3B: What are the provider thoughts when it comes to alternative therapies?

T4: What guidelines/considerations can help patients explore options? Certain therapies providers would feel uncomfortable with? 

We look forward to you joining us.

Dee

Topic Questions for our Oct 8th Chat

Wednesday's ( October 8, 2014 at 9pm EST) #gyncsm chat topic will be "Recurrence- What Now?".

Here are the questions that we will be asking during the chat. You will see that some questions are addressed to health care providers and some are directed toward those dealing with a gyn cancer diagnosis and their caregivers. 

T1A: What are the signs of recurrence for the main GYN cancer types & how is recurrence confirmed? 

T1B: If you had a recurrence, what signs/ symptoms did you have? Please include in answer which gyn cancer you had.

T2A: How likely is a GYN cancer recurrence and where might the recurrence occur?

T2B: If you had a recurrence, where did your recurrence occur? Please share cancer type in your tweet.

T3A: What treatments might be offered for a recurrence? Different than first-line?

T3B: Survivors: What factors did U consider when choosing a treatment 4 recurrence? Did U consider #clinicaltrials? join trial?

T3C: From the provider perspective, what factors do you feel patients should consider? How do clinical trials fit in?

T4A: What tips & resources can help patients and families cope w/ the emotional impact of a recurrence? also the fear of recurrence?

T4B: If you had a recurrence, what did you find helpful? Survivors, what helps you cope with fear of recurrence?

We have some exciting news to share with all of you on Wednesday or check this blog on Monday for our announcement. 

See you Wednesday night!

Dee

Co-moderator

November Topic- Clinical Trials

Our next #gyncsm chat will be held on Wednesday November 13, 2013 at 9pm EST. The topic of the night will be clinical trials.

Do you have questions about clinical trials?
How to find a clinical trial that is right for you?
Do you wonder why it takes so long for a drug to go from clinical trial to patient use?
Have you taken part in a clinical trial and want to share your experience with others.

If you answered yes to any of these questions then be sure to join us on the 13th.

Dee
co-moderator

Welcome to our Community

Welcome to the #gyncsm Community blog. This Community is for those impacted by gynecologic cancers.  Women diagnosed with gynecologic cancers (cervical, ovarian, uterine, primary peritoneal, endometrial, fallopian tube, GTD, vaginal, vulvar) their families, caregivers and health care providers  are invited to join us. We are an online presence at #gyncsm and tweet as @gyncsm.

Please join us for our regular monthly tweetchat on the second Wednesday of the Month at 9pm EST. The first chat will be on September 11, 2013. Our topic will be the treatment of gynecologic cancers by gynecologic specialists and ovarian cancer symptoms and awareness.

The community and chat is moderated by Dee Sparacio, an ovarian cancer survivor (@womenofteal)  and Christina Lizaso, a passionate gynecologic cancer advocate (btrfly12). We will be joined by our health care moderators Dr Rick Boulay (@journeycancer), Dr Don S Dizon (@drdonsdizon) and Dr MJ Markham (@DrMarkham).

We welcome your comments and suggestions for future chats. You may e-mail us at gyncsm@gmail.com

DAS