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

Sunday, August 13, 2017

#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

Wednesday, August 9, 2017

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? 


#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

Friday, August 4, 2017

August #gyncsm Chat - "You never heard of Primary Peritoneal Cancer or GTDisease?"

In the past three years we have hosted chats dedicated to a number of the different gynecologic cancers - Cervical, Endometrial/Uterine, Fallopian Tube, Ovarian, Vulvar and Vaginal. This month we are going to discuss two more of the rare gynecologic cancers - primary peritoneal and GTD (Gestational trophoblastic disease).



What are these cancers?

Primary Peritoneal Cancer (PPC) forms in the peritoneum (the tissue that lines the abdominal wall and covers organs in the abdomen), and has not spread there from another part of the body. Primary peritoneal cancer sometimes spreads to the ovary. It is similar to ovarian epithelial cancer and is staged and treated the same way.
-NCI Definition

In data from 1995-2005, Goodman* found that the incidence rate in the U.S. for PPC was 6.78 per million women compared to 119 per million for ovarian cancer. Women with PPC were diagnosed at a later age (mean 67 years) than ovarian cancer (mean 63 years). (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706690/)

GTD (Gestational trophoblastic disease) is a rare condition in which abnormal cells grow inside the uterus from tissue that forms after conception (the joining of sperm and egg). This tissue is made of trophoblastic cells, which normally surround the fertilized egg in the uterus and help connect the fertilized egg to the wall of the uterus. These cells also form part of the placenta (the organ that passes nutrients from the mother to the fetus). Most GTDs are benign (not cancer) and do not spread, but some types are malignant (cancer) and spread to nearby tissues or other parts of the body. The two main types of GTDs are hydatidiform mole and choriocarcinoma. Also called gestational trophoblastic disease, gestational trophoblastic tumor, and GTT.
-NCI Definition

GTD occurs in 1 out of 1000 pregnancies in the US. It less than 1% of all gynecologic cancers. GTD is more common in Africa and Asia than in North America. (http://www.cancer.net/cancer-types/gestational-trophoblastic-disease/statistics)

You can learn more about GTD or Primary Peritoneal Cancer by joining our chat and reading these pages on the NCI website.

You can also read a GTD survivor story here on our blog:
http://gyncsm.blogspot.com/2015/04/survivors-story-gtd-and-me-story-of.html

Part of #gyncsm's mission is to support those impacted by all gynecologic cancers. One way we can do this is to offer information on rare gynecologic cancers and support survivors of those cancers. #gyncsm will be participating in the #Dazzle4Rare social media campaign during August 13-19. Check out that tag to learn more about rare disease and share your own story.

We hope you will join us as we raise awareness of the risks of these rare gynecologic cancers, support the women impacted by them, and support the clinicians and researchers who focus on treating these rare cancers.

We look forward to chatting with you on Wednesday, August 9th at 9pm EST (8pm CST/ 6pm PST).

Guiding our discussion will be the following topic questions:
T1: What is Primary Peritoneal Cancer (PPC)? Why is it treated like ovarian cancer?

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

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

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

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


Dee
Co-founder #gyncsm

*Goodman Study

Sunday, July 16, 2017

Sarcoma Awareness Month - Add your support

Guest post by patient advocate Suzie Siegel (@SuzieSiegel)


Many women never hear of sarcoma until they get it.

Sarcoma Awareness Month can teach women about rare gynecological cancers — then give them hope and resources to survive.

The National Cancer Institute, the American Society of Clinical Oncology, the American Association for Cancer Research and the American Cancer Society all recognize July as Sarcoma Awareness Month.

But the White House and Congress have never made it official. Once again, sarcoma nonprofits have a petition going, and we would love to have your help. 

Please add your name to the petition to officially designate July as 
Sarcoma Awareness Month: 

Sarcoma is a cancer of muscle, bone and other connective tissues. It represents 20% of childhood cancer cases but only 1% in adults. It can arise anywhere in the body at any age, from newborns on up.

In women, sarcoma can occur anywhere in the reproductive tract although the uterus is the most common. The different types are:
1.     Carcinosarcoma (formerly known as malignant mixed mullerian tumor or MMMT). Sarcoma specialists often don’t consider this a true sarcoma.
2.     Leiomyosarcoma. The Cancer Genome Atlas is expected to separate gynecologic leiomyosarcoma from LMS found elsewhere in the body.
3.     Endometrial stromal sarcoma. It has been divided into low-grade, high-grade and undifferentiated uterine sarcoma.
4.     Adenosarcoma.
5.     Embryonal botryoides or rhabdomyosarcoma found in infants.
6.     PEComa.

Risk factors include previous pelvic radiation and use of Tamoxifen.

Women often are diagnosed first by an OB/GYN and may then be referred to a gynecologic oncologist. Many also choose to see a medical oncologist who specializes in sarcoma, too.

Sarcoma nonprofits can help women find specialists as well as financial and emotional help. Let us help you!

—————
I’m a 15-year survivor of metastatic leiomyosarcoma that started in my vagina and spread to my right lung. I volunteer for the Sarcoma Alliance, Sarcoma Foundation of America, Imerman Angels and MD Anderson Cancer Center’s MyCancerConnection. You can contact me at suziesiegel@tampabay.rr.com

Suzie Siegel is pictured here at SGO 2017 with Dr. Don Dizon
at her table for the Sarcoma Foundation of America




















Wednesday, July 12, 2017

What's on your Mind? #gyncsm Open Mic Night -July 12, 2017


We didn't have a set series of topic questions for this month's chat but rather allowed our participants to share what was on their minds. We had nineteen participants and over 1.4M impressions. You may find more analytics from Symplur here.

The hour's discussion revolved around these main areas:

Emotional support of women after treatment
  • I'm struggling in post treatment life. Unknowns, grief, plus effects from chemo, rads. :/
  • Post-treatment is really tough for so many people. It's tough to go from the intensity of treatment to the uncertainty of after. 
A petition to make July Sarcoma Awareness Month which led to a discussion of - What is sarcoma? Which are gynecologic?

  • Via @suziesiegel Sarcoma is a cancer of connective tissues. The main types of gyn sarcoma are leiomyosarcoma ,low- & high-grade endometrial stromal sarcoma, & undifferentiated uterine sarcoma. Some include carcinosarcoma
  • Risk factors include exposure to radiation & use of Tamoxifen, plus genetic issues such as Li-Fraumeni Syndrome

Educating the public about the importance of HPV vaccination
  • Caleb's Feet Foundation http://www.calebsfeetfoundation.org/ brings information about cervical cancer and the HPV vaccination to the community. 
  • studies show pediatricians have a huge influence on whether kids get vaccinated - parents do listen to doc rec
  • good to focus on doc's and then community influencers - churches, centers
  • The @GlobalGenes site has some amazing free toolkits for health advocates. Can also check out blogs from @JBBC re: health marketing 
  • HPV vaccination could reduce global deaths from #cervicalcancer by as much as two-thirds
Support for women cancer researchers 
  • I really want to (1 day) discuss the lack of funding 4 female researchers, tasked w/ post BrCa Dx research
  • Issues affecting women's health still does receive equitable share in research dollars. It's time that changes
  • Awarding rates 4 female applicants (14.9%) are systematically lower than those for male applicants (17.7%) 
The science behind the connection between genetic mutations (other than BRCA) and how they may raise the risk of  Breast, Ovarian Color Cancer 
  • I'm in a FB group for CHEK2 and many previvors reporting getting ovaries out though science isn't there yet on that.
  • CHEK2 is the name of a gene...when there is an inherited change (mutation) in CHEK2 = some increased risk for specific cancers
  • Risks to removing ovaries in these young women-->early menopause w/o known cancer risk reduction benefit

You may find the complete chat transcript here.

Please scroll down for Resources mentioned during the chat.

Remember you can always join our discussion on the Smart Patients Platform. (https://www.smartpatients.com/partners/gyncsm )

Be sure to join us next month on Wednesday August 9, 2017 at 9pm ET | 8pmCT | 6pmPT  as we discuss "You never heard of Primary Peritoneal Cancer or GTDisease?".

Remember to tweet things of interest to our community by using the #gyncsm hashtag.

See you in August!

Dee
#gyncsm Co-founder

RESOURCES:

Petition to make July Sarcoma Awareness Month
https://petitions.whitehouse.gov/petition/officially-designate-july-sarcoma-awareness-month

Calebs Feet Foundation
http://www.calebsfeetfoundation.org/

Magenta Study Genetic testing study at MD Anderson
https://magenta.mdanderson.org/magenta_mobile/index.html

Sex Bias in Surgical Research
http://www.physiciansweekly.com/sex-bias-in-surgical-research/

@nccn guidelines for "Hereditary Colorectal Cancer"
https://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=294

Friday, July 7, 2017

What's on your Mind? #gyncsm Open Mic Night



This month we are opening the discussion to topics our participants want to discuss.

What is on your mind?

Are you considering a PARP and want to know more? 
Are you interesting in taking part in a clinical trial but have questions? 
Do you want to know if others are experiencing Quality of Life (QOL) issues like you are?
Do you have questions about seeing a Genetic Counselor for genetic testing?  
Do you want to discuss the results of the Our Way Forward Survey
Do you want to discuss how to communicate with your health care team?
Did you see the latest research on obesity and ovarian cancer and wonder if it applies to you? 
If you are a health care provider, do you wonder how much information your patient wants to hear about their condition?

Join us on July 12th at 9pmET | 8pmCT | 6pmPT and bring your thoughts, questions and comments for our third "Open Mic" #gyncsm session.


Dee
Co-Founder #gyncsm Chat