Wednesday, August 13, 2014

Where To Go For Support- August 2014 Chat

Tonight our topic was "Where to Go For Support". Support is needed for many aspects of a cancer patients life - educational support, financial support, physical support and emotional support. The support can take many forms - support groups, transportation services,  inspirational stories,  meals, peer to peer support and much more.  We were pleased to have Dr Matthew Katz, Dr Emily Berry and Dr Shannon Westin join us as our healthcare moderators. Thank you to all those who shared their sources of support.

The topic questions were:

T1: Let’s start off with - What types of support are needed at diagnosis, during treatment and after?

T2: On the practical support side - Where do you go for help with transportation, cleaning the house, insurance issues, work, etc?

T3A: Let’s discuss emotional support.  Do U attend in person groups, online groups, one-on-one? Why or why not?
T3B: How did you learn about those groups/organizations? What are other sources of emotional support?
T3C: Healthcare professionals - where do you find emotional support re: your work in the cancer field?

T4: What advice would you give to a woman who is not “Connected” - are there magazines / articles / books you could recommend?

T5: We’ve discussed types of support - if you could improve the support you currently get what would it be?

If you missed the chat the complete transcript can be found here. The analytics of the chat can be found here.

Our next chat is "Advocating for Yourself and Others". We will also be celebrating the anniversary of our first chat. Please join us on Wednesday September 10, 2014 at 9pm EST (6 PCT) to learn from other gyn cancer advocates.


Online Services to Coordinate Support:

Help with Insurance and Health Care Access:

Angel Flight

House cleaning:
Clean 4 a Reason @clean4areason

Work issues:

Patient Caregiver Wish List:
Elixir Fund @elixirfund

Help with health hardships and needs:
Med Gift @MedGift
Give Forward

Gynecologic Cancer Organizations: Peach Outreach (Endometrial Cancer)
@GYNCancer Foundation for Womens Cancer
@tandherfrenz Tamika and Friends -Cervical Cancer
@StopHPVCancer National Cervical Cancer Coalition
@NOCC_National National Ovarian Cancer Coalition 
@OCNA Ovarian Cancer National Alliance
@OCRF Ovarian Cancer Research Fund
@prim_peritoneal Martha C Kinnecom Primary Peritoneal Cancer Foundation
@hystersisters Hyster Sisters Hysterectomy Support

Organizations that offer Support to Cancer Patients/ Survivors:
Cancer Support Community@CancerSupportCm
Tower Cancer Foundation (Los Angeles County)
Gildas Club
Road to Recovery- @AmericanCancer
LiveSTRONG @Livestrong
Cancer Care @CancerCare
Stupid Cancer (Young Adults)@StupidCancer
Patient Navigator Programs
Stand Up 2 Cancer

Peer Support:
Cancer Hope Network @CancerHopeNet
Imerman Angels

Online Support groups:
@smart_patients Smart Patients
@teaminspire Inspire

Books / Magazines:
Not Your Mother's Hysterectomy
Dr John Lee's books on menopause & cancer (

The Light Within by Lois M. Ramondetta (
Byron Katie - Loving What Is (
Life Over Cancer by Dr. Block (

@COPING_cancer Coping Magazine 
@AWomansHealth Womans Health 
@cure_magazine Cure Magazine 
@CancerTodayMag Cancer Today Magazine 

Other Resources:
Perceived threat and PTSD symptoms in women undergoing surgery for gynecologic cancer or benign conditions.

Online courses to improve Quality of life

Crowdfunding for Medical Care

Starbrydge Health

Medicine X Conference
MedX Global Access

"For the secret of the care of the patient is in caring for the patient" Francis Peabody

Co-moderator of #Gyncsm

Power Morcellation: What You Should Know

Morcellation has been in the news recently so we thought we would pass on some information provided by Judy Cohen, Outreach Coordinator, American Recall Center

Power Morcellation: What You Should Know
Practically everyone knows someone who has undergone a hysterectomy. Recently, however, a medical device commonly used for some hysterectomy procedures has come under scrutiny by the FDA. This device, a 'Power Morcellator', is used to cut fibroid tissue into smaller pieces for easier removal from the body. Power morcellators are deemed to be responsible for the spread of formerly undetected cancer cells throughout the abdominal cavity and pelvis of women. Shockingly, the mortality rate of women who have undergone accidental morcellation of a cancerous tumor is quite high with a life expectancy of only 24-36 months following the procedure.

The FDA has come to the conclusion that there is no known fully accurate and reliable method for preoperatively determining whether fibroids in the female may also contain a uterine sarcoma. Results of studies done on power morcellation were released in April. Based on those studies, the FDA states that approximately 1 in 350 women undergoing a hysterectomy or myomectomy for the treatment of fibroids likely has an undetected uterine cancer. Leiomyosarcoma (LMS), a particularly aggressive uterine sarcoma, has a poor prognosis which the power morcellator only exacerbates. If you or someone you know has had a procedure using this device, be sure to keep all follow-up appointments with your doctor!

On July 10th and 11th, the FDA met to discuss the inherent dangers and the possible future of morcellation procedures. A final decision is currently under discussion. Meanwhile, in late July, one of the largest manufacturers of power morcellators, Johnson & Johnson, issued a voluntary recall of the device. Determining the procedure to be too risky, they are in the process of removing all existing devices from the marketplace. The more awareness that can be raised about this dangerous device, the faster we can put an end to the spread of avoidable and deadly cancers in women.

Co-moderator #gyncsm chat