December 13, 2017: I've Survived - Dealing with Side Effects and Other Losses

This month, during our chat I've Survived - Dealing with Side Effects and Other Losses, we discussed physical and emotional losses experienced by gynecologic cancer patients and survivors.

We were pleased to welcome a number of new participants among the 26 people who joined us.  You may find our analytics here and a transcript here.

Below are the questions Christina used to guide our discussion along with some sample answers. Please read the complete transcript for all the comments.

T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? 

• When I think of losses I think friends lost to OC, the organs that allowed me to have my children, my ability to recall words quickly.
• T1 loss of control, loss of carefree living, loss of ability to assume things are ok even if it’s a false assumption
• T1: For me, it's the faces of ovarian cancer survivors I have worked with over the years who are no longer here to advocate.
• Cancer is a string of losses - of many kinds, so of course, there is lots of grieving as well. How could there not be?

T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you.

• T2 Physically- organs: repro, vagina, bladder, portions of sm & lg intestine, left kidney, nephrosis of rt kidney, gall bladder, thyroid,
• T2 Feeling the toes in my left foot, My thick hair ( after losing it twice it is thin) 
• T2 whatever physical losses, care team must take seriously their effects on function and quality of life 
• And it seems that physical losses tend to change how we see ourselves socially, emotionally...

T3: Has the death of women with a similar diagnosis affected you? What tactics do you put into action to deal with losses of friends and family? 

• When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge
• T3 A year after my recurrence I lost 4 friends from my support group. I was devastated, guilty, and scared of recurrence. Speaking to the Social worker helped. She gave coping skills.
• T3- Yes. I have helped women as mentor locally and distance & have spoken at multiple services. Having been diagnosed as 'terminal' this has impacted me terribly, major SURVIVOR'S GUILT!!!

T4: Women diagnosed w/ gyn cancers have said the loss of sexual intimacy has been difficult for them. What advice do you have for others? 

• It’s mind-blowing that many doctors avoid talking about fertility & sexual health. We are all adults. There’s no room for stigma, taboos. Patients need answers to pressing questions & reali life concerns.
• T4- Intimacy does NOT require being physical. Have not had 'sex' in 7+ years. But this does not mean we've not been intimate. Be adventurous. Find joy in the simplest things, a soft touch, kissing, etc. If done properly, partners can find MORE INTIMACY without sex.
• T4: Even for the tough things, good to know there are lots of resources out there when you are ready. Being open to talking about it first step..
• many of my brca+ friends who've had ooph talk about painful intercourse/vaginal dryness and feeling a loss of sexuality. Luckily they've worked with their providers to overcome those hurdles

T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? 

• All of them.
• T5: As we learn more about all of the losses, research has to focus on how we support women to LIVE fully despite the loss.
• T5: The goal is to have more cancer survivors, but we have to plan for how to support them as well.
• Also more scientific research to bring therapies from bench to bedside.
• T5: I'd also love to see more research surrounding getting ahead of neuropathy. Chemo nurses have tips but nothing universal

Please scroll down to see a list of Resources shared during the chat. 

You may continue to discuss these questions with us on the Smart Patient Platform (https://www.smartpatients.com/partners/gyncsm). 

Mark your calendar for our first chat of 2018 on January 10th.  We will discuss Caregivers - their needs and wants with guest Lauren Hand, Gynecologic Oncology Fellow, Magee-Womens Hospital of UPMC.

We wish everyone Happy Holidays! See you in 2018!

Dee and Christina

Founders #gyncsm

RESOURCES

Nancy's Point There Will Be Tears at Christmas http://nancyspoint.com/will-tears-christmas/

Cancer rehabilitation @cancerDotNet https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/rehabilitation

Renewing Intimacy & Sexuality after Gynecologic Cancer   http://www.foundationforwomenscancer.org/wp-content/uploads/Sexuality-Brochure_Final.pdf

Women's Guide to Sexuality During & After Cancer Treatment

https://www.oncolink.org/support/sexuality-fertility/sexuality/women-s-guide-to-sexuality-during-after-cancer-treatment

@cancdotnet Managing menopause and side effects from treatment 
https://www.cancer.net/blog/2016-08/survivorship-after-gynecologic-cancer-managing-menopause-and-treatment-side-effects

In Shock  by Rana Awdish (book)

Society for Participatory Medicine @S4PM (organization)

Chemo Induced Peripheral Neuropathy - Participating in a Clinical Trial

http://womenofteal.blogspot.com/2017/12/chemo-induced-peripheral-neuropathy.html

December '17 Chat: I've Survived - Dealing with Side Effects and Other Losses

On various social media platforms we have heard women diagnosed with gynecologic cancers discuss the difficulties they have after diagnosis. They ask: When will I feel less tired? When will my hair grow back? When will the numbness in my hands and toes stop? When will I feel comfortable being intimate? Or they will share that they feel sad because they are unable to have children or because the friend they made during chemo has passed away. And others ask why they feel so isolated when all around them family and friends are happily celebrating the holidays. 

We will discuss these physical and emotional losses during this month's #gyncsm chat, I've Survived - Dealing with Side Effects and Other Losses on Wednesday, December 13, 2017 at 9pm ET. We welcome all those impacted by gyn cancer, wherever you are in your experience, along with previvors, caregivers, loved ones, advocates, healthcare professionals and those impacted by other cancers and serious illness.

We will use the following questions to guide our discussion:

T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? 

T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you.

T3: Has the death of women with a similar diagnosis affected you? What tactics do you put into action to deal with losses of friends and family? 

T4: Women diagnosed w/ gyn cancers have said the loss of sexual intimacy has been difficult for them. What advice do you have for others? 

T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? 

We look forward to you joining us at 9pm ET on Wednesday, December 13th. 

Dee

#gyncsm Co-founder

We are Grateful

During this Thanksgiving Holiday we are especially grateful for our health moderators-  Dr. Rick Boulay, Dr. Merry Markham, Dr. Shannon Westin and Dr. Ann Becker-Schutte as well as our supporters Dr Don Dizon, Dr Matthew Katz, SGO,  and Iamcervior (Tamika Felder). Our community appreciates the sharing of your time and talents with all of us.

Dee and Christina
#gyncsm co-founders

Nov 8, 2017 #gyncsm Chat: Spotlight on Cancers of the Uterus

This month we put the spotlight on Cancers of the Uterus. We discussed risk factors, symptoms and treatments of endometrial / uterine cancers as well as uterine sarcomas. 

We were pleased to have 24 participants join us including the Peach Society an organization devoted to raising awareness of endometrial cancer. 

You may find a complete transcript here and more analytics here. 

The following are some sample responses to out topic questions. You may find additional resources shared with the community at the end of the post. 

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role? 

• Risk factors for uterine cancers from @cancerdotnet https://t.co/wptvJ7lIGE
• T1: uterine/endometrial cancer risks include: Age, obesity, reproductive history, hormone therapy, as well as genetics
• T1: #endometrialcancer is the malignancy most closely associated with obesity. Of course genetics #Lynch can play a role as well.
• About 3% of endometrial cancer is due to a hereditary cause, called Lynch syndrome. If you have a family history of endometrial and colon cancers,you may want to meet w/ a Genetic Counselor to learn more  
• T1: some of the genetic links are Lynch syndrome (up to 60% risk), Cowden syndrome (up to 30% risk), and a small risk with PJS
• All of these factors increase systemic estrogen which is implicated in the most common types of #endometrial cancer. 

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?

• T2: Any vaginal bleeding after menopause is uterine cancer until proven otherwise.
• T2 Via Canadian Cancer Society Signs and symptoms http://www.cancer.ca/en/cancer-information/cancer-type/uterine/signs-and-symptoms/?region=on&utm_content=buffere910b&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
• @OncLive: Dr. Haldorsen on the Role of Imaging in the Diagnosis of Endometrial Cancer  http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer
• My main symptom included abnormal bleeding.

T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects? 

• @CancerDotNet website : surgery/radiation/ chemotherapy https://www.cancer.net/cancer-types/uterine-cancer/treatment-options
• T3 Most are treated surgically with up to 50% receiving radiationa as well. 10-20% receive chemotherapy.
• T3: We discussed radiation oncology during our July 2017 #gyncsm chat - recap and resource links: http://gyncsm.blogspot.com/2017/06/radiation-oncology-what-is-it-when-is.html
• Post treatment side effects are related to the type and intensity of treatments used
• vaginal brachytherapy is a kind of radiation treatment

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?

• Sarcomas are more rare, and often more aggressive. They often start in the muscle tissue of the uterus
• T4: Uterine Carcinosarcoma (formerly called MMMT) - info: http://gcsproject.org/carcinosarcoma-facts/
• T4: Leiomyosarcoma is a rare type of uterine sarcoma.
• T4: Endometrial Stromal Sarcoma - Info: http://ess-sarcoma.com/
• T4 : Brittany Sullivan’s Story w/ Sarcoma https://connection.asco.org/magazine/society-member-news/conquering-sarcoma-clinical-research-doctor-and-her-patient-are-paving

T5: Are there any special support services for cancers of the uterus? Where can people learn more? 

• T5: For all the gynecologic cancers, @GYNCancer (The Foundation for Women's Cancer (FWC)) had great guides and resources.
• T5: Resource | Foundation for Women's Cancer (2017): Endometrial Cancer - Your Guide http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Endometrial-Cancer-Your-Guide-website.pdf
• For support some great organizations like @CancerSupportHQ and for one on one support @CancerHopeNet are two I would recommend.
• Short overview of uterine cancer via @gyncancer http://www.foundationforwomenscancer.org/category/blog/uterine-cancer/
• @Peach_Society: You can get more information at http://www.peachsociety.net/ 

Please join us next month on Wednesday, December 13, 2017 (9pm ET/ 8pm CT / 6PM PT) for a chat on  I've Survived - Dealing with Side Effects and Other Losses

Wish all the members of our community a very Happy Thanksgiving!

See you in December. 

Dee
Co-founder #gyncsm 

RESOURCES

@MayoGynecology video obesity and endometrial cancer https://t.co/rJcT0ryuRL

Peach Outreach symptom cards, visit: http://peachoutreach.com/symptomcards/

Imaging and endometrial cancer diagnosis http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer

Nov #gyncsm Chat: Spotlight on Cancers of the Uterus

This month we will be putting the spotlight on Cancers of the Uterus or Cancers of the Womb as it is called in the United Kingdom. We will discuss risk factors, symptoms and treatments of endometrial / uterine cancers. We will also discuss uterine sarcomas and how they differ from other cancers in presentation and treatment.

Guiding our discussion will be the following Topic Questions:

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role?

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?

T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects?

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?

T5: Are there any special support services for cancers of the uterus? Where can people learn more? 

You will find helpful information on this month's topic in a booklet produced by the NCI What You Need to Know About - Cancer of the Uterus. 

We look forward to you joining us on Wednesday, November 8, 2017 at 9pm ET (8pm CT, 6pm PT).

Dee
#gyncsm Co-founder


Related Chats:
Radiation Oncology - What is is? When is it used? 2017
You never heard of Primary Peritoneal Cancer and Gestational Trophoblastic Disease? 2017
Gyn Cancer Awareness Month and Spotlight: Uterine and Endometrial Cancers 2015
 

Oct 11, 2017 #clinicaltrials - How have they changed.

We were very pleased to have ASCO, American Society of Clinical Oncology (@ASCO), join us to discuss the importance of clinical trials and their TAPUR Study as part of our chat on #clinicaltrials. This month's chat participation number was our 4th largest ever with fifty-one participants.

You can find the complete transcript here and analytics here.

To provide you with an idea of what our chat discussion was like, below you will find a sampling of the answers to our questions.

T1: What role do #clinicaltrials play in cancer treatment advances? What are some of the key trial design changes in the past 5 yrs?

• T1: #Clinicaltrials are key to helping us better prevent & detect cancer, find new & better treatments, & manage side effects
• T1: New trial designs let us study multiple cancers/treatments at the same time & learn which therapy works best for each patient
• T1: It's important for patients to understand that #clinicaltrials are NOT the treatment of last resort.
• T1: New trial design: "basket trial" offer single treatment for all cancers with specific biomarker (like ROS1 fusions)
• T1: "Umbrella" trials have multiple therapies for one type of cancer (ie ovarian) - the arm may be chosen based on molecular testing
• Immunotherapy is definitely trending as a treatment for many types of cancer and it is only in its infancy. Exciting!
• Another non- randomized Trial is the precision medicine trial know as NCI-MATCH Trial

T2: What is TAPUR? Why did @ASCO develop this trial? Who can participate? What makes TAPUR different from other trials?

• T2: #TAPUR stands for the Targeted Agent and Profiling Utilization Registry Study and is our first clinical trial ever
• T2: The study matches pts w/ targeted therapies based on tumors’ specific genomic profiles 
• http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/what-tapur-study
• T2: Our CMO @rschilsky and Past Pres. @DrJulieVose explain why ASCO developed the TAPUR study in this video: https://t.co/j9qEuIY3tY
• T2: TAPUR is for pts >12yo w/ adv. cancer & at least 1 genomic alteration targetable by a study drug. More: https://www.tapur.org/patients
• T2: TAPUR is designed to include a broader patient population than most trials & to mirror real-world clinical practice
• T2: Check out the study website https://www.tapur.org/ & FAQs https://www.tapur.org/node/31 for more details! 
• T2: TAPUR is an option for patients to access targeted drug that is approved for a different cancer than theirs
• T2: For example, patient with ROS1+ cancer that started in colon can get ROS1 targeted drug approved for lung cancer

T3: What are Patient Reported Outcomes (PRO)? What progress have you seen on ensuring that trials meet patients' needs/interests?

• T3: PROs are anything reported directly by the patient, like symptoms or emotions. They reflect how patients feel & function
• T3: PROS - patient reported outcomes help determine the impact novel treatments in a clinical trial have on #QOL (quality of life)
• T3: More trials are incorporating PROs so outcomes can be measured against pts’ needs/interests https://am.asco.org/daily-news/rise-patient-reported-outcomes-oncology
• T3: Research has shown that when patients self-report symptoms, they have better outcomes https://t.co/cjl8npOxVE
• Self-reporting symptoms can serve to make patients feel more involved and they may be more open to sharing symptoms. This is great!
• Critically important to include & capture. Preferred Dr outcomes vs patient outcomes sometimes don't align

T4a: Have you been involved in a #clinicaltrials?

• T4 my brother was in a clinical trial for stage 4 colon cancer. It looked at EGFR+ drugs +/- avastin
• T4a: My cancer progressed after two different lines of chemo/rads. Targeted therapy clinical trial had me NED at first scan!
• I've participated in some interview studies and am signing up for PROMPT re: genetic variants related to cancer. 
• I was in a phase 1 on initial DX for OC. I also have - or rather my tumor tissue has been in a few other trials
• I have been involved as an investigator in #clinicaltrials for years! Have never participated in one - but I would…
• T4a gathering tests/labs to begin immune therapy trial next week PPC 3c

T4b: If yes, what benefits or drawbacks did you experience? If no, what were some of the reasons? Were trials offered to you?

• Drawbacks of trials: hard to find "best" trial for you, may require travel & time away from family, varying level of risk
• T1b: Benefits of trials: receive AT LEAST standard of care, see top cancer docs, might help future patients as well
• my brother did well on trial, extended his life. trial helped clarify treatment. Brother also saw altruistic benefits
• T4b not offered. Have asked onc about using AI to prevent recurrence. Answer: not studied. Me: R U studying? Ans: no.
• A lot of doctors mention only the #clinicaltrials at their hospital.
• Patient communities continue to be one of the best places to find out about trials. There are groups trying to make it easier
• Because of #sarcoma & gynonc silos, women with sarcoma may not hear about trials run by different docs.

T5: Per @SGO_org, there is a crisis in gyn cancer trials. How can #gyncsm support research and encourage participation in #clinicaltrials?

• T5: #gyncsm can continue great advocacy work and spread the word about the benefit of #clinicaltrials
• T5: Educate yourself & share info with others! Online patient communities & chats like this one are a great start
• T5: Find ways to help more #gyncsm patients get molecular testing and join "basket trials" for any solid tumor type.
• Resource | Gyn Trials Crisis Fact Sheet from @SGO_org https://www.sgo.org/wp-content/uploads/2012/09/SGO-Clinical-Trial-Crisis-FINAL.pdf
• T5 @CancerDotNet has great resources on clinical trials: http://www.cancer.net/research-and-advocacy/clinical-trials
• T5: Call your congress person.
• T5: Contact your lawmakers & urge them to support research by increasing funding for @NIH and @theNCI
• T5: Consider having your #gyncsm tumor undergo broad genomic testing to help researchers identify targetable genomic drivers.
• @ClearityFnd can help with tumor profiling for #ovariancancer
• @SGO_org working on a #gyncsm specific #clinicaltrial search engine that we hope will simplify the process

We appreciate the insights and knowledge of those who participated in tonight's chat. And we hope as a community we will continue to educate women and their caregivers about clinical trials.

Additional resources from the chat are shared below. 

We hope you will join us on November 8, 2017 at 9:00pm EST for our chat on Endometrial and Uterine Cancers. See you then.  

Dee

#gyncsm Co-founder

RESOURCES:

Video | Understanding Gynecologic Cancer Clinical Trials from @GYNcancer
https://www.youtube.com/watch?v=UFGb8nQkE8c&feature=youtu.be

Understanding Clinical Trials - Your Guide from @GYNcancer
http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Clinical-Trials-Your-Guide-Brochure-web_updated.pdf
 
Diversity in Trials 
http://www.cancertodaymag.org/Summer2017/Pages/A-New-Look-for-Clinical-Trials-Diversity.aspx

ASCO guide: new trial designs & precision medicine
http://www.asco.org/research-progress/clinical-trials/clinical-trial-resources/clinical-trial-design-and-methodology

ASCO Broadening Trial Eligibility Criteria to Make Clinical Trials More Representative
http://www.asco.org/research-progress/clinical-trials/clinical-trial-eligibility-criteria 

Designing trials for adolescents 
http://www.cancertodaymag.org/Summer2017/Pages/More-Options-for-Adolescents-in-Clinical-Trials.aspx

NCI-MATCH info
https://www.cancer.gov/about-cancer/treatment/clinical-trials/nci-supported/nci-match

TAPUR
https://www.tapur.org/

About TAPUR on @cancerdotnet 
http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/what-tapur-study

The National Quality Forum report on PROs
https://www.qualityforum.org/Projects/n-r/Patient-Reported_Outcomes/Patient-Reported_Outcomes.aspx

Patient Safety in Clinical Trials | Video by @theNCI 
https://www.youtube.com/watch?v=y7TDwbrD7GQ&feature=youtu.be

Patients’ willingness to participate in clinical trials
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4706669/

Physician and Patient Participation in Cancer Clinical Trials
https://www.ncbi.nlm.nih.gov/books/NBK220370/

Oct 2017 Chat: #clinicaltrials - How Have They Changed

While we have mentioned clinical trials in a few of our recent chats, we have not devoted an entire chat to the topic since 2014. On Wednesday October 11, 2017 at 9pm ET (8pm CT, 6pmPT) we will chat about "#clinicaltrials - How Have They Changed". 

We are happy that ASCO TAPUR Study Administrators will be joining us to discuss the TAPUR Study and how it differs from traditional trials.

Our topic questions are:

T1: What role do #clinicaltrials play in cancer treatment advances? What are some of the key trial design changes in the past 5 yrs?

T2: What is TAPUR? Why did @ASCO develop this trial? Who can participate? What makes TAPUR different from other trials?

T3: What are Patient Reported Outcomes (PRO)? What progress have you seen on ensuring that trials meet patients' needs/interests? 

T4a: Have you been involved in a #clinicaltrial? 

T4b: If yes, what benefits or drawbacks did you experience? If no, what were some of the reasons? Were trials offered to you? 

T5: Per @SGO_org, there is a crisis in gyn cancer trials. How can #gyncsm support research and encourage participation in #clinicaltrials?

In preparation for the chat, you can review this Clinical Trials : Your Guide brochure:  

http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Clinical-Trials-Your-Guide-Brochure-web_updated.pdf

or view this video provided by the Foundation for Women's Cancer:

Please also see this fact sheet on the Gyn Cancer Clinical Trials Crisis:

We look forward to seeing you on Wednesday the 11th at 9pmET!

Dee
Co-Founder #gyncsm

Related #gyncsm Chats
Clinical Trials Part 1 - 11/2013
Clinical Trials Part 2 - 2/2014

Sept. 13, 2017 A Balanced Life - advocacy, survivorship, new normal

As we celebrate our 4th Anniversary, we want to thank everyone who has participated in or followed our chats and all who have supported us by using the #gyncsm hashtag to share information of value to our community. 





This Gynecologic Cancer Awareness Month our topic was finding a Balanced Life after a cancer-related diagnosis. We focused on survivorship, a new normal and advocacy.

We were joined by health care providers, survivors and caregivers to answer these questions:

T1: During treatment, what adjustments did you make (nutrition/exercise/work) to help you stay balanced physically and emotionally?

• for emotional support I reached out to @cancerHopeNet
• The most important thing to do during Rx is practice self care - whatever that means for you - exercise, food, time
• I think it is important to remember to go easy on yourself. We can be our own worst critics. Remind self it is ok to falter.
• My experiences as a doc are that most patients attend to the treatment needs and have little energy to do anything further
• I was a hard core exerciser before. I had to learn to be easier on myself. I did a lot of beginner/gentle yoga. It helped

T2: When you finished first line treatment, how did you feel? What things did you go back to doing and what stayed changed?

• People expect you to "be over it" and move on as if nothing happened. 
• I felt like a rudderless ship. Had no control of my life for so long, then see you in a month
• still do same stuff;work,volunteer, make lunch and dinner, son's sports, friends but I don't feel the same. Cancer is always there
• People expect you to "be over it" and move on as if nothing happened.

T3a: What does the term “new normal” mean to you?

• The new normal is the development of new habits patterns and thoughts as a result of the cancer journey
• I think there's so much pressure on patients to have cancer change them in some profound way and when it doesn't they're lost
• I think that "new normal" is an interesting phrase. For some it is helpful, and for others, it draws negative feelings.
• the term new normal I guess acknowledges that there has been a turning point. An anchor in your own timeline.
• My new normal as a caregiver is a recognition of the fragility of life and how a diagnosis can change absolutely everything

T3b: What does your own new normal currently look like? Where are you in your search for balance?

• I often encourage clients to find whatever version of "new normal" helps them acknowledge that cancer creates permanent change
• I'm in denial with a touch of overwhelmed in making preventative treatment decisions. So still in the thick of it and unclear
• And even if clients can return to work, exercise, other activities, there is always the knowledge of vulnerability.
• And mentally people have completely changed. The old normal is no longer applicable .Cancer is a period of accelerated change

T4: How soon after your diagnosis did you start volunteering and/or sharing your story? What are you involved in for awareness month?

• I started sharing my family's cancer story when we started up #gyncsm. So, about 4 years ago
• I took part in @livestrong summit 6 mo after chemo.Learned & was motivated to advocate for myself and others 
• This awareness month seems less active than last year... I've been doing a tweet a day from me and another from @gyncsm

T5: Do you ever feel the need to take a break from all things cancer? What do you do and where do you turn when you reach that point?

• I believe breaks are critical. We need time to recharge, to do what we love, to remember our dx is not our identity.
• As a doctor, I get here often - need to take breaks - coach baseball/softball, exercise, take a weekend off from everything
• Absolutely need to step back,For me esp after #GCAM - so much going on ( walks, events) and remembering those lives lost
• I would love to. But I can't. I just can't. Survivorship leaks from every pore.
• It is tough to stay in a constant advocacy mode. Esp. when a string of advocates pass away. Need time to recharge 
• So appreciative of long-term survivors who stay active in patient communities IRL and online. Also understand when they go in/out.

You may find a complete transcript here, analytics here and resources below.

You can continue tonight's discussion, A Balance Life, on Smart Patients at
 https://www.smartpatients.com/partners/gyncsm 

We hope you will join us next month on Wednesday October 11, 2017 at 9pm for our chat - #Clinical Trials - How have they changed?.

See you then.
Dee
#gyncsm co-moderator

RESOURCES
"Survivorship is Not a Phase"  #newnormal http://theendoflinearity.com/survivorship-is-not-a-phase-part-two/

New Normal Adjustment after Cancer http://awomanshealth.com/new-normal-adjustment-after-cancer/

The power of vulnerability | Brené Brown https://www.youtube.com/watch?v=iCvmsMzlF7o&feature=youtu.be

@afreshchapter started a patient advocate retreat called Refresh

via @TealDivaNC - Vulnerable http://www.tealdivanc.org/single-post/2017/09/02/vul%C2%B7ner%C2%B7a%C2%B7ble-%CB%88v%C9%99ln%C9%99r%C9%99b%C9%99l

via #MedX: 5 things I tell people who think they can't be advocates https://medicinex.stanford.edu/2017/09/03/5-things-i-tell-people-who-think-they-cant-be-advocates/

A bit of Advocate in all of us https://www.sharecancersupport.org/2017/01/a-bit-of-advocate-in-all-of-us/

What happens next #ovca https://targetovariancancer.org.uk/guides/what-happens-next

Ovarian Cancer Survivors’ Experiences of Self-Advocacy: A Focus Group Study @TLHagan https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4021021/

September #gyncsm Chat: A Balanced Life - advocacy, survivorship, new normal

Christina and I have seen many posts on social media related to finding a new normal, how to become involved in advocacy (self, research, legislative), and issues that affect survivorship. We feel that this month, Gynecologic Cancer Awareness Month, is a perfect time to focus on issues of finding a Balanced Life after a cancer-related diagnosis. While we mainly focus on gyn cancers, this topic is important to anyone who has received a major diagnosis - regardless of the type - and we invite everyone to join us.

This month we are also excited to be celebrating our anniversary. A special thanks to our moderators Drs. Markham, Westin, Boulay and Becker-Shutte and to the OCRFA, SGO and Foundation for Women's Cancer for your support - without which we would not be able to continue serving those whose lives have been impacted by gynecologic cancers.

Here are the topic questions that will guide our hour long chat on finding a balanced life following diagnosis:

T1: During treatment, what adjustments did you make (nutrition/exercise/work) to help you stay balanced physically and emotionally?

T2: When you finished first line treatment, how did you feel? What things did you go back to doing and what stayed changed?

T3a: What does the term “new normal” mean to you?
T3b: What does your own new normal currently look like? Where are you in your search for balance?

T4: How soon after your diagnosis did you start volunteering and/or sharing your story? What are you involved in for awareness month?

T5: Do you ever feel the need to take a break from all things cancer? What do you do and where do you turn when you reach that point?

We hope you can join us on September 13, 2017 at 9pmET (8CT/6PT) and share your experience with finding a "balanced life" with all of us.

Dee
#gyncsm moderator

The Clare Project -What matters most to young adults with cancer as they make choices about fertility preservation?

In the past the #gyncsm community has held chats about fertility and life as a young adult following a gynecologic cancer diagnosis. Recently we learned about the Kaiser Permanente Washington Health Research Institute's Clare Project. The Project is a research study to understand how adolescent and young adults with advanced cancer make medical decisions. 
This blog post first appeared in Medium. 

What matters most to young adults with cancer as they make choices about fertility preservation?

In 2016, we launched The Clare Project to understand how adolescent and young adult (AYA) patients with advanced cancer make medical decisions. Our study is a memorial to a family member, Karen’s sister-in-law, who died in 2014. Our goal is to improve care for young people with cancer by asking them what they need, want, and value.

We spoke to 22 patients, caregivers, and clinicians sharing their stories with us. We heard that AYA patients are balancing hope of increased survival with the risk of treatment that can be debilitating and at times fatal. Patients recognize that they are essentially playing a “chess game” they will eventually lose to cancer, but they don’t want to use up all of their pieces too soon. We learned that AYA want clearer communication from their clinicians about their prognosis, and when additional treatment will no longer prolong life.

We also learned that one important concern was the decision to undergo — or not undergo — fertility preservation. We have now launched a second phase of our study to understand how this decision is made, and how young adults with cancer think about family building.

We are looking for young adults, aged 18 or older, who were diagnosed with cancer between the ages of 15–39 years, and are willing to do a one-time phone interview. We also want to talk to clinicians who care for young adults who were diagnosed with cancer between the ages of 15–39 years.

By sharing your experience with us, you will help us understand what matters most to young adults with cancer when making decisions about building a family. It is important that we hear first-hand from real people who have had to make decisions about cancer care and have thought about whether and how to have a family.

What does the interview involve?

• The interview will ask questions about your experience with cancer care and fertility preservation or other forms of family building.
• If you are a clinician, the interview will ask about your experience helping young adults with cancer make decisions about fertility preservation or other forms of family building.
• It will last about an hour.
• The interview will be recorded and written down, but will not include your full name.
• The interview is voluntary.
• You will receive $50 as a thank you for your time.
• You must be at least 18 years old to join this study.

How do I volunteer or find out more?

If you want to be part of this study or learn more about it, please review our study information sheet. Email the Clare Project if you want to join the study or if you have questions. We hope to hear from you soon.

FB page is: https://www.facebook.com/theclareproject/

Twitter handle is: @clareproject

Kaiser Permanente website on the Clare Project: https://www.kpwashingtonresearch.org/get-involved/be-part-study/clare-project/

Dee

#gyncsm Co-Founder

#Dazzle4Rare - Rare Disease Campaign 2017

We are pleased to once again support the #Dazzle4Rare Campaign sponsored by @hesaonlineorg. Last year was the first time we partnered with #Dazzle4Rare to raise awareness of rare diseases. You may read least year's blog post here.

A number of gynecologic cancers are considered rare diseases by the NIH. Ovarian, Endometrial/Uterine, Fallopian Tube, Vaginal and Vulvar Cancers are rare as are the two gynecologic cancers we discussed during this month's chat, Primary Peritoneal and Gestational Trophoblastic Disease. 

You may learn more about how you can get involved in this year's #Dazzle4Rare Campaign at  https://www.daycause.com/hesaonlineorg/dazzle4rare-2017

Feel free to share tweets like this one from August 13 to the 20th.

#Dazzle4Rare Learn about PPC & GTD rare gynecologic cancers http://gyncsm.blogspot.com/2017/08/august-92017-chat-you-never-heard-of.html #gyncsm

or

#Dazzle4Rare Vulvar, Vaginal and Fallopian Tube are rare gyn cancers   http://gyncsm.blogspot.com/2016/02/february-chat-rare-gyn-cancers-vuvlar.html #gyncsm

If you would like to share your story with a rare gynecologic disease with the #gyncsm community please e-mail us.


Dee and Christina
Founders, #gyncsm Community

August 9,2017 Chat: "You never heard of Primary Peritoneal Cancer or GTDisease?"

This month we were pleased to raise awareness and provide information on two rare gynecologic diseases - primary peritoneal cancer (PPC) and GTD (Gestational trophoblastic disease).

We had 43 people participate in the chat with a total of 1.56 impressions and 370 tweets in the hour. You may find more stats here and the complete transcript here via Symplur. 

Below you may read some of the tweets shared in answer to our topic questions. For complete information please read the transcript or check the Resources at the end of the post. 
 
T1: What is Primary Peritoneal Cancer (PPC)? Why is it treated like ovarian cancer?

• The peritoneum is a thin membrane that forms the lining of the abdomen. It covers all of the organs within the abdomen.
• PPC arises is in the peritoneum (lining of the abdomen). It responds to a similar combo of surgery and chemo used for ovar ca
• PPC is often diagnosed at stage III/IV but can still be completely cleared in the upfront setting
• The histology (cell type) of PPC is same as #ovariancancer and Fallopian tube
• And genetically the same as well. Also the same proteins are on the cell surfaces.
• The most common cell type of PPC, serous carcinoma, is also the most common cell type in #ovariancancer
• Important fact - a woman can get Primary Peritoneal Cancer even if her ovaries have been removed.
• PPC most commonly treated like epithelial ovarian cancer w/ surgery and chemo. NCCN guidelines: https://www.nccn.org/patients/guidelines/ovarian/index.html
• The only way to distinguish PPC vs. #ovariancancer is by path looking at the ovarian surface & stroma to see where cancer arises

T2: Are there risk factors and symptoms of Primary Peritoneal Cancer (PPC)? Is there a known genetic mutation that increases risk?

• #BRCA mutation can put pts at risk for PPC - even if the ovaries have been removed
• Primary #peritonealcancer in #BRCA carriers after prophylactic bilateral salpingo-oophorectomy #gyncsm ncbi.nlm.nih.gov/pmc/articles/P…
• The symptoms & Risk factors are the same for #PrimaryPeritoneal & Ovarian cancer
• Risk factors for PPC are the same as #ovariancancer - significant exposure to estrogen - early menarche, late menopause
• The major risk factor for Primary Peritoneal Cancer is advancing age. #gyncsm
• PPC symptoms are more commonly gastrointestinal - abdominal bloating, changes in bowel habits, and an early feeling of fullness.
• Like #ovariancancer, no effective screening for PPC
• Risk of PPC in BRCA positive patients following risk reducing BSO surgery is 1-3% in most studies
• All women w/ invasive epithelial PPC meet guidelines for genetic counseling & testing, just like ovarian cancer

T3: What is Gestational trophoblastic disease (GTDisease)? What types of GTDisease are there? Are they all malignant? 

• Normal cells of the placenta, called trophoblast cells,
• a group of diseases from abnormal proliferation of trophoblasts-- these are cells from the placenta
• GTDisease is a group of rare diseases in which abnormal trophoblast cells grow inside the uterus after conception. #gyncsm
• Most GTD is not cancer and does not spread, but some types become cancer and spread to nearby tissues or distant parts of the body
• GTD buff.ly/2vkVH9e GTD: -Hydatidiform -Invasive Mole -Choriocarcinoma -Placental trophoblastic tumor -Epithelioid
• Molar pregnancy, persistent mole, invasive mole choriocarcinoma .. most need only a D and C. Some need chemo.…

T4: What are the risk factors and other important things to know for GTDisease? Is there a known genetic mutation that raises risk? 

• Important to know: About 1/2 from molar pregnancies, 1/4 from miscarriages or ectopic and 1/4 from normal or preterm pregnancies 
• Invasive GTN characterized into high risk and low risk subgroups which determines adjuvant chemotherapy
• GTDisease treatments include surgery (removing tumor only or hysterectomy), chemo and radiation
• Main GTDisease Risk: Age and previous molar pregnancy. Symptoms include abnormal vaginal bleeding and a larger than normal uterus.
• There's not known genetic mutation related to GTDisease. A family history of molar pregnancy has been found in rare cases.
• Ethnicity (Asian) also plays a role in GTD
• Also important to get chest CT. About 40% will have micrometastases to the lungs that were negative on chest x-ray

T5: Are there any special support services for these two rare cancers? Where can people learn more? 

• Martha C. Kinnecom Primary Peritoneal Cancer Foundation primaryperitonealcancer.org
• You may want to contact @smart_patients which has online health communities
• There are a couple of centers nationally that focus on GTD bit.ly/2uqYvDi
• #RareDisease resources include: @GlobalGenes @RareAdvocates @RareDiseases @rarediseaseday #Dazzle4Rare
• Important to receive care for rare cancers with a specialist, such as a gynecologic oncologist
• Check out CART-WHEEL for rare cancers cart-wheel.org
• There are some support groups on FB for rare tumors facebook.com/groups/1542683…

#gyncsm is joining the #Dazzle4Rare campaign August 13-19. Learn more about rare diseases and share your own story (https://www.daycause.com/hesaonlineorg/dazzle4rare-2017 )


We hope you will join us next month on Wednesday, September 13, 2017 at 9pm ET for our chat A balanced life- advocacy, survivorship, new normal. And continue this discussion rare diseases on Smart patients at https://www.smartpatients.com/partners/gyncsm 

Dee
Co-moderator #gyncsm Chat

RESOURCES: 

Primary Peritoneal Cancer

NCCN Guidelines for OC and PPC - https://www.nccn.org/patients/guidelines/ovarian/index.html

Primary Peritoneal Cancer in BRCA carriers after prophylactic bilateral salpingo-oophorectomy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4922728/

@gyncancer Primary Peritoneal Disease Information : http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/primary-peritoneal/

PPC from Macmillan UK http://www.macmillan.org.uk/information-and-support/primary-peritoneal-cancer

PPC information Medscape http://emedicine.medscape.com/article/2156469-overview

Peritoneal Cancer Clinical Research Trials @CenterWatch https://www.centerwatch.com/clinical-trials/listings/condition/553/peritoneal-cancer

Goodman :Incidence of Ovarian, Peritoneal, and Fallopian Tube Carcinomas in the United States, 1995–2004 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706690/)


GTD

Gestational Trophoblastic Disease Treatment (PDQ®)–Patient Version via @theNCI https://www.cancer.gov/types/gestational-trophoblastic/patient/gtd-treatment-pdq#section/all

Patient Information on Gestational Trophoblastic Disease from @gyncancer http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/gestational-trophoblastic-disease-gdt/

What is GTD American Cancer Society https://www.cancer.org/cancer/gestational-trophoblastic-disease/about/what-is-gtd.html

Gestational Trophoblastic Disease via @CancerDotNet http://www.cancer.net/cancer-types/gestational-trophoblastic-disease