Fertility and Sexuality - June Chat

More than 40 participants joined us in this month's chat on Fertility and Sexuality. Those participants helped us make over 2,500,000 impressions- our highest ever.

The topics questions were:

T1: When in the cancer journey are sexual intimacy issues discussed w/ health care provider? Who brings it up?

T1a: What sexual concerns are more prevalent? Are sexual issues a common side effect of treatment?

T2: What are tips & resources to maintain intimacy and sexuality after cancer? Any for GYN cancer specifically?

T3: Before or after dx, were fertility issues discussed? With who? What advice was given?

T4: What are some fertility resources out there  - especially ones focused on cancer patients?

T5: Where do you go to find emotional support for fertility and sexuality issues?

If you were unable to join us, a transcript for the chat can be found here.

Next chat: 
Demons of the mind - PTSD and mental health concerns 
Wed July 9, 2014 at 9pmET


Sexuality and Fertility Resources:

Booklet - Ovarian Cancer Sexuality & Intimacy, by calling 1-888-OVARIAN or by sending an e-mail to NOCC@ovarian.org

Center for Intimacy After Cancer Therapy, INC. CIACT http://www.renewintimacy.org/  Coping with Cancer magazine - Is There Sex For Women After Cancer  by Dr. D. Dizon

http://copingmag.com/cwc/index.php/wellness/wellness_article/is_there_sex_for_women_after_cancer

North American Menopause Society

http://www.menopause.org/for-women/sexual-health-menopause-online 

Article: Sexual health as a survivorship issue for female cancer survivors Dr. D. Dizon

http://www.ncbi.nlm.nih.gov/m/pubmed/24396051/

LiveSTRONG - Fertile Hope Initiative

http://www.livestrong.org/we-can-help/fertility-services/

The Oncofertility Consortium at Northwestern University / The Hormone Foundation

http://www.myoncofertility.org/

http://www.savemyfertility.org/pocket-guides/fertility-preservation-women-diagnosed-cancer

Resolve - National Infertility Association  Fertility and Cancer: Understanding Your Options  http://www.resolve.org/diagnosis-management/infertility-diagnosis/fertility-and-cancer-understanding-your-options.html

Fertility Preservation and Pregnancy in Women With and Without BRCA Mutation–Positive BC

http://m.theoncologist.alphamedpress.org/content/17/11/1409.long

Fertile Action (cancer patient focus)

http://www.fertileaction.org/

Cancer.Net Sexual and Reproductive Health

http://www.cancer.net/coping-and-emotions/sexual-and-reproductive-health

DES and Fertility - Video

https://www.youtube.com/watch?v=05JhROgU9wI

See you all in July, 

Dee

Co-moderator

Long Term Ovarian Cancer Study

In case you missed our mention of this study during May's tweet chat we wanted to help spread the word about the Long Term Ovarian Cancer Study. Here are the highlights:

The Study is being done by The Consortium for Long-Term Survival (A Department of Defense-Funded Project , Massachusetts General Hospital , Michael Birrer PI, Lari Wenzel Co-PI). The goal of the study is to identify molecular, cellular and quality of life patterns that are similar in women initially diagnosed with Stage III or IV who achieve long term survival ( 10+ years) and different women who did not survive long term.  The information learned will help to develop new therapies and diagnostic tools for ovarian cancer.

The aims as presented in the project description are:

• Evaluate the genomic features in long-term versus short-term survivors. All cases will also be analyzed for the presence of immune cells and a correlation between these immune cells and genomic features will be studied. This aim will use material collected with the support of other DoD grants to identify biomarkers of ovarian cancers.
• Validate a genomic signature that can predict whether a cancer will re-occur after treatment. This aim leverages an ongoing DoD-funded project that focuses on generating a genomic signature that distinguishes recurrent from non-recurrent early-stage, advanced stage ovarian cancers.
•  Determine the extent to which quality of life measures predict long-term survival of patients with advanced stage ovarian cancer.
• Examine, as an exploratory aim, the potential relationship between quality of life and genomic features predicting disease recurrence.

Survivors who were diagnosed late stage and are close to 10 years from diagnosis may be eligible. Also survivors who recurred during that 10 year period may also be eligible.

I     If you are interested in this project and want to know more about it, feel free to contact the project coordinator, Giulia Fulci, at: Email gfulci@partners.org; Tel (617) 643-5130

       

      Dee 

     #gyncsm Co-moderator

Parenting with Cancer - May Chat

Twenty-nine participants, including survivors, children of women diagnosed with cancer and health care providers, joined us last night for our chat about parenting with cancer.

The topic questions were:

T1: What are some of the biggest worries when caring for children while in treatment?  What worried you most? 

T2: Where can patients and caregivers turn to for help? What resources have been most helpful for you or ur patients? 

T3: When in the process did you tell children/were you told about the DX? How does age impact timing and content? 

 T4: After being told, how often was cancer discussed? and how did you feel about that? 

T5: Looking back, what would you do differently when parenting during that time of your life? or that you now wish ur parents had done? 

 If were not able to join us you can still catch up on wonderful advice and information that was shared by reading the transcript here.

Resources:

Scott Simpson: The Simpson Blog, Broadcaster Scott Simpson leaves Halifax, NS for London, ON to help his wife fight cancer and raise a baby.

http://www.thesimpsonblog.com/

I Wish Cancer Would Get Cancer and Die - Blog

http://iwishcancerwouldgetcanceranddie.wordpress.com/

ASCO's Parenting While Living With Cancer

http://www.cancer.net/coping-and-emotions/communicating-loved-ones/parenting-while-living-cancer

Cancer Support Community's Parenting Through Cancer

http://www.cancersupportcommunity.org/MainMenu/Family-Friends/Parenting-Through-Cancer.html

The Hardest Conversation, article by Lisa Bonchek Adams

http://www.huffingtonpost.com/lisa-b-adams/conversation-parents-kids-cancer_b_2622619.html

Parenting With Cancer

http://parentingwithcancer.com/

Helping Children When a Family Member Has Cancer

http://www.cancer.org/treatment/childrenandcancer/helpingchildrenwhenafamilymemberhascancer/index

MGH Parenting At a Challenging Time's (PACT) A Dozen Lessons Learned

http://www.mghpact.org/for-parents/a-dozen-lessons-learned

MSKCC Parenting with Cancer On-line Support Group

http://www.mskcc.org/events/support-meeting/supporting-children-and-teens-through-parents

NOCC's Communicating with Children

http://www.ovarian.org/caregivers_communicating_with_children.php

ACS's How Should Children Be Told That a Parent Has Cancer?

http://www.cancer.org/treatment/childrenandcancer/helpingchildrenwhenafamilymemberhascancer/dealingwithdiagnosis/dealing-with-diagnosis-how-to-tell-children

Cancer Care's Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis

http://www.cancercare.org/publications/49-helping_children_understand_cancer_talking_to_your_kids_about_your_diagnosis

The topic for our June 11th chat will be fertility and sexuality. Hope you can join us. 

Dee

Co-moderator

May 8th is World Ovarian Cancer Day

Two weeks from today on May 8th World Ovarian Cancer Day will take place. World Ovarian Cancer Day is a great way to raise awareness of the disease worldwide. Around 140,000 women worldwide will loose their lives to ovarian cancer. The first World Ovarian Cancer Day was held in 2013.

The #gyncsm community supports the efforts of World Ovarian Cancer Day to raise awareness of the symptoms of the disease, the importance of family history and the need to fund research.

We urge our followers to visit the World Ovarian Cancer Day website and to sign the pledge to share information about ovarian cancer with  five other women. If you are on Twitter you can spread the word using the hashtags #WOCD and #WorldOvarianCancerDay. You can also visit them on Facebook at facebook.com/WorldOvarianCancerDay.

Help us spread the word!

Dee
#gyncsm co-moderator

News from the Annual SGO Meeting- April Chat

The Society of Gynecologic Oncologists met in Florida at the end of March for their annual meeting. During tonight's chat we asked the doctors and researchers these questions:

T1a: What SGO presentation did you find of most interest?

T1b: What SGO presentation do you think will interest patients most? What were some of the studies of note?

T2: In what areas is new research lacking? 

T3: Is there anything patients/survivors/advocates need to take immediate note of?

T4: Were there other session topics that resonated for you?


You can find the transcript of the night's talk here and analytics here.

Links for studies mentioned during the chat:

High volume cancer centers have better outcomes for gyn cancer pts; >1 year overall survival (OS) https://t.co/7PHsHbt5Rq

Risk of high risk uterine cancer in BRCA patients -  http://t.co/qveUn8w0J3

Smarca4 in hypercalcemic type small cell ovary cancer  http://www.nature.com/ng/journal/vaop/ncurrent/full/ng.2922.html

BRCA1 link to higher risk of aggressive uterine cancer https://t.co/DBDt9mOnTp

"Cancer doesn’t end women’s sex life” http://t.co/ST2qiLKIOs

Obese women who had bariatric surgery 3 ½ times less likely to get uterine cancer than without surgery https://t.co/RWfcJzZQvW

JAMA paper on electric morcellation risks http://t.co/slkaN2O4WT

SGO had a position statement in Dec 2013 on morcellation too https://t.co/SQmL5ZatDL

SGO recommends genetic testing for all women dx w #ovca. even if no family history - a new position paper http://t.co/GjqF8dewR6

Meeting Abstracts:
SGO website  https://t.co/2CRcIIJhqT

Videos:

2014 SGO Mtg surgery & translational science overview http://t.co/3Z0ab6WHlK  2014 SGO Mtg #ovarian cancer overview http://t.co/EWp08G36yn 2014 SGO Mtg #cervical cancer overview http://t.co/00m3qDM9vo 2014 SGO Mtg #uterine cancer overview with @dsmgyo http://t.co/BG4SKpcmRU

World Ovarian Cancer Day is May 8th http://t.co/jKTa0Efvdk #WOCD #WorldOvarianCancerDay

Feel free to e-mail us (gyncsm@gmail.com)  or tweet us (@gyncsm)  if you have any questions. 

See you Wednesday May 14, 2014 9pm EST Topic: Parenting after a gyn cancer diagnosis

Dee
Co-moderator

Impact of Gynecologic Cancers on Caregivers & Family Members - March Chat

Last night a diverse groups of health care providers, researchers, patients, caregivers and organizations joined us for a chat about the impact of gynecologic cancers on caregivers and family members. As you can see from the questions below we looked at the the impact from both the patient's and caregiver's point of view.

T1a: Communication is key in any relationship. How did you handle sharing ur diagnosis with caregiver/family? Children? 

T1b: Looking back, what might you have done differently? Your advice for those facing these tough conversations?

T2: Do you ever refrain from sharing info with your caregiver? Why/Why not? 

Caregivers on this chat – we’d love to hear from you. 

T3: Being a caregiver 24/7 is draining. What have you done to prevent “burn-out”? 

T4: Caregivers – What do you wish you knew at the beginning? Your advice for those in the caregiver role? 

T5: Survivors – What words would u share with caregivers? Caregivers – What words would u share with survivors? 

T6: Let’s all share some resources that are out there for caregivers and our thoughts on this subject. 

To see the responses to those questions please see our transcript here.

We hope more of our readers and followers will join us on April 9, 2014 at 9pm EST for our discussion on the research presented at the Society of Gynecologic Cancer Annual Meeting.

Resources shared throughout the chat and in response to T6 are listed below.

In Sickness and in Health: How to Help a Loved One with Cancer - http://www.lvhn.org/conditions_treatments/cancer/available_support/other_resources_we_provide/in_sickness_and_in_health:_how_to_help_a_loved_one_with_cancer

17 Tips for Cancer Caregivers - http://copingmag.com/cwc/index.php/article_review/article/17_tips_for_cancer_caregivers

Virtual Hospice - http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx

Caring for the Caregiver Toolbox (audio & pdf) - http://www.canceradvocacy.org/resources/cancer-survival-toolbox/special-topics/caring-for-the-caregiver/

ACS Survivorship Facts & Figures - http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-033876.pdf

About Reimagine University (skill building for patients and their loved ones) - http://youtu.be/nz4YZy8kSoY

Four Steps to Being a Healthier Caregiver - http://meals-to-heal.com/blog/4-steps-to-being-a-healthier-caregiver/

CancerCare's caregiving resource page - http://www.cancercare.org/tagged/caregiving

National Ovarian Cancer Coalition's caregiving resource page - http://www.ovarian.org/caregivers_what_you_can_do.php

Task Rabbit - https://www.taskrabbit.com/

Caring Bridge - http://www.caringbridge.org/

Lotsa Helping Hands - http://www.lotsahelpinghands.com/

Cancer Support Community - http://www.cancersupportcommunity.org/

Offering Thanks for Caregivers - http://well.blogs.nytimes.com/2012/11/21/living-with-cancer-offering-thanks-for-caregivers/?_php=true&_type=blogs&_php=true&_type=blogs&_r=1

Oral Chemo Parity, how to get involved - https://www.prescriptionprocess.com/know-the-facts/barriers-to-prescription-access/OralChemoParity.aspx

Tyze.com - http://tyze.com/

Cancer Connection - http://cancerconnection.ca/

Caregiver Exchange - http://caregiverexchange.ca/content.aspx

See you next month. 

Dee

Co-moderator