Wednesday, November 8, 2017

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?



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? 



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


Friday, November 3, 2017

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
 



Wednesday, October 11, 2017

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?

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?

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/

Friday, October 6, 2017

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:

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

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

Wednesday, September 13, 2017

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/

Wednesday, September 6, 2017

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

Thursday, August 24, 2017

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.
Twitter handle is: @clareproject

Dee
#gyncsm Co-Founder