Cancer Patients on Twitter: A Patient Summit Presentation

Last week Alicia Staley and I presented "Building Community in 140 Characters"at the Eye for Pharma Patient Summit 2015 in Philadelphia. 

Before we talked about the #bcsm and #gyncsm communities we gave some background on Twitter, hashtags, The Health Hashtag Project and research on twitter communities.

Did you know that in June'15:

• there were 316 Million monthly Twitter users?
• there were 500 Million tweets sent per day? 
• 19% of all adults are  on Twitter?

Did you know that the Symplur Healthcare Hashtag Project ( Sept 2015) :

• includes almost 8000 healthcare hashtags?
• covers over 15,000 healthcare topics? 

Did you know that patients have been the driving force behind the cancer hashtags and chats? 
Examples of patient let communities include: 
—#BCSM-breast cancer social media
#BTSM-brain cancer social media
#ayacsm- adolescent & young adult cancer social media
#gyncsm-gynecologic cancer social media
—#lcsm-lung cancer social media 
#panscm-pancreatic cancer social media  #mmsm-multiple myeloma social media

We also presented information from the poster  Dr Matthew Katz, et al  presented at the ASCO 2015 Annual Meeting.

Disease Specific Hashtags for Online Communication about Cancer Care concluded that: 

Hashtags can organize online conversations about health
The use of organized, cancer-specific hashtags on Twitter by a variety of stakeholders in cancer care is not only possible but has grown
Use of the Cancer Tag Ontology (CTO) indicates the potential value of online interaction around specific diseases
Further study is needed to determine whether the CTO: Improves access to accurate information or clinically relevant patient outcomes


Alicia Staley presented information about the #BCSM community including this study published in the Journal of Medical Internet Research which found that 67% of the women who initially reported high anxiety before the chat reported no or low anxiety after participating.

Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey

http://www.jmir.org/2015/7/e188/

They concluded that "breast cancer patients' perceived knowledge increases and their anxiety decreases by participating in a Twitter Social Media support group.  

I presented information about the #gyncsm community including what we learned from our 2014 community survey.

Why did you participate?

–To chat with others with same interests but from different perspectives

–learn, share, support

–to help the community of survivors

—After participating in the chat:

–41% of the participants made a change in your personal or professional routine/practice

–37% of the participants advocated for yourself or another

–54% of the participants used or refer someone to one of the resources mentioned in a chat or listed on our blog  

 In conclusion we noted that: 

There are active, engaged patients who are helping each other but many also want to be at the table in making changes in healthcare. Come find us on Twitter and listen.

Dee

Every Day is a Blessing!

Gynecologic Cancer Symposium: Striving for a Healthier Tomorrow, Today

On November 19, 2015 Striving for a Healthier Tomorrow, Today a gynecologic cancer symposium will take place at Mercer County Community College in West Windsor, NJ. 

The Symposium is open to health care providers, nurses, survivors, caregivers  and community members.  This activity has been submitted for approval to provide 5 CEU Credits. 

What:

Medical experts will present discussions on:

• Research and newest developments 
• Cancer prevention and detection 
• Genetic determinants, risk assessment and management
• Gynecologic cancer impact on sexuality and intimacy 
• Immunotherapy, diagnosis and treatment, improved risk predictors
• Patient centered clinical trials
• A panelist of gynecologic cancer survivors will discuss symptom awareness; personal health choices, fear of recurrence, post-treatment, and life beyond cancer.

When:

Thursday, November 19th 2015 from 8:00 am - 3:30 pm 

 

The Conference Center At Mercer CollegeMercer County Community College
1200 Old Trenton Rd
West Windsor Township, NJ 08550

How to register:
Online at: 
https://www.eventbrite.com/e/gynecologic-cancer-symposium-striving-for-a-healthier-tomorrow-today-registration-17034044285?ref=esfb

After looking at the agenda there will be a wealth of information shared that day. 


Dee
Every Day is a Blessing

Supporting Those Diagnosed with Cancer - Cancer Hope Network Chrysalis Gala

Last night at Cancer Hope Network's (CHN) Chrysalis Gala, I had the honor of telling my story as an ovarian cancer survivor and a CHN support volunteer . Cancer Hope Network provides one-on-one peer phone support for newly diagnosed or recurrent cancer patients and their caregivers. I have been a support volunteer for over seven years now. Last night at the Hanover Marriott many of CHN's supporters of the past 30+ years were present to celebrate the support provided and to raise funds to continue the support they provide to cancer patients.

Below are the main points I shared with the audience.

2005 started out as a pretty good year. I was looking forward to  celebrating my 50^th birthday at DisneyWorld with family and friends -12 in all. In late May during my annual visit with my gynecologist I mentioned a pain I had on the left side of my abdomen. In early June after a transvaginal ultrasound the pain got worse and I ended up in the ER. After an  MRI  I learned my ovaries were enlarged. I was quickly referred to the gynecologic oncologists at the Rutgers Cancer Institute of NJ. 

On July 29th one month after my birthday my world changed. I woke up from surgery and to learn I had stage 3B ovarian cancer. I went into that surgery knowing there was a chance it could ovarian cancer but up to that point I had been more fearful of being diagnosed with breast cancer. My sister passed away from breast cancer at the age of 47.

2 weeks after that major debulking surgery. I started chemotherapy. I chose to be part of a clinical trial. The trial added selenium to the standard of care - carboplatin and taxol. It was tough loosing my hair and developing neuropathy but what I was most upset about was the fact that I had not met one other woman with ovarian cancer. What made it worse - any time I mentioned ovarian cancer the response was – Oh Gilda Radner  who played Roseanne Roseannadanna on Sat Night live have ovarian cancer. Yes– she had that disease. But she didn’t live. 
  
I also knew the statistics about women diagnosed with late stage ovarian cancer. Only 30% lived 5 years. I wanted to be in that 30% and I needed to talk to someone who had the disease and lived.

When I saw a brochure for Cancer Hope Network in the waiting room of my gynecologic oncologist’s I picked it up and brought it home. I hesitated at first to call. At the time I wasn’t too keen on calling anyone and talking about ovarian cancer. But one afternoon as I laid in bed too tired to get up I went ahead and called. 

I told the person who answered the phone that I just needed to talk to someone who had ovarian cancer and lived. She took all my information and said she would call back when she had a match. The very next day she called and said she could connect me right then and there with a volunteer named Judy. I spent the next half hour talking to a women diagnosed with stage 3b OC, she lived in NJ, she had the same surgery and chemotherapy ,her son worked at the college my son was attending, and even better Judy was a 5 year survivor. It was wonderful. I was not alone. This meant I could survive too!
 
When I was out of treatment one year I called Cancer Hope Network and said I wanted to be one of their support volunteers. I did the training and within a week or two I was talking to other women with ovarian cancer. I did that until I recurred on my liver and spleen in 2008 and had to have surgery and more chemotherapy I had to take a break. But once treatment was done I was back on the phone able to offer a perspective of being a survivor of recurrent ovarian cancer. I have been volunteering ever since.
 
I have spoken to women from NY, Florida, California, Indiana and Kentucky just to name a few. I have spoken to women treated in the top cancer centers in the country and those going to small community cancer centers or their local oncologists. I have talked to women who are a short ride from their doctor’s offices and infusion centers.  And also women who drove eight hours or took a plane and stayed overnight at  hotels when they had treatment. They did all this to get their life saving treatments.

There were women who went to in person support groups and others that took part in online groups. But each and every one of them wanted to talk one –on –one with another survivor who understood. At some point in most of the conversations I have had after I have say  "I felt that way too" the reply has always been the same " thank goodness I thought it was just me."

Thank you Cancer Hope Network for allowing me to provide hope and to give back to other women the hope and support you gave to me.   

I look forward to continuing to volunteer with CHN and to support women diagnosed with ovarian cancer for many years to come.

Dee
Every Day is a Blessing! Blessed to have found CHN when I was initially diagnosed.

It Is More Than Pink and Teal

It is about research.

In October, I see posts online from women diagnosed with ovarian cancer and other gynecologic cancers complaining and peeved about being surrounded by pink ribbons - on TV , in stores, on shirts, etc. Even women who have breast cancer write about how they see pink ribbons on items that appear to just be a way to sell products. They note that the  percentage of money earned from these products actually going to an organization is small.There are other complaints about a large breast cancer non-profit and how so much of the money raised doesn't go to research. Women with metastatic breast cancer are asking to be "seen and heard".  They want a greater amount of funds used for metastatic breast cancer research. I can understand why each person complaining or asking for recognition of ovarian cancer feels the way they do.  And believe me I have my share of teal shirts , earrings, etc and a few pink things too.  In October 2011, I even wrote a post about the "pinking" of the NFL.

My friend Christina and co-moderator of the #gyncsm chat said this on twitter.

fall musings... gyn cancers struggling for basic awareness, breast cancer struggling to move from awareness to action. #gyncsm #bcsm

— Christina Lizaso (@btrfly12) October 10, 2015

 

So true. But what should that action be?

My life has been impacted by cancer in many ways in addition to my ovarian cancer diagnosis. My sister at the age of 42 was diagnosed with breast cancer and had a mastectomy and chemotherapy. She had a bone marrow transplant when her cancer metastasized. She passed away five years later. It has been twenty years since her passing.  And metastatic breast cancer continues to kill women - as does ovarian cancer in the ten years since my diagnosis.

Why is that? Cancer is a very complex disease. After attending medical conferences and listening to researchers I know that.  But how does spending money on items that are pink or teal for that matter make a difference?So the next time you make a donation to an organization or buy a product check out how much of the dollars raised actually goes to research.

Let's spend money on research. Because  the only way we will be able to understand cancer - breast, ovarian, kidney, lung, pancreatic   is through research.

What will you do to support cancer research?


Dee
Every Day is a Blessing!