The Days of ASCO - Connections

In addition to being a medical conference where new research results and discussions take place,  the ASCO Annual Meeting is a great place to make connections with oncologists, researchers and advocates. I was able to rekindle friendships with advocates I met at the 2006 LiveSTRONG Survivors Summit and Stanford MedX 2014 and meet in real life folks I have been following on Twitter.

I stopped to say hello to Sarah from CHN. I volunteer with CHN.

I ran into one of my former RCINJ pharmacists in the Oncology Professionals Hall.

 

I got to spend time with the #gyncsm Health Care Moderators, Drs Markham, Westin and Boulay at the ASCO Tweet-Up 

@corrie_painter and @womenofteal meet in person for the first time at the ASCO Tweet Up

#bcsm friends ( @stales, @DrAttai) and @SheWithLynch

@AliveAndKicknDD, @coffeemommy, @trwoodhull

So pleased I got to meet Lucy Kalanithi.(far right)  She spoke during the ASCO Book Club session about her husband, Dr Paul Kalanithi's book, When Breathe Becomes Air

 

 

 

 

 

 

As I finish this last ASCO post I feel honored to have spent time with these amazing advocates, oncologists , physicians and researchers. I want to thank Conquer Cancer Foundation for supporting my scholarship to attend. 

Dee
Every Day is a Blessing!

#gyncsm - A Gynecologic Cancer Community on Twitter

In January this year I wrote a post titled "New Years Aspirations" for the SGO Blog page. The post  listed what I aspired to do in 2013. One of those aspirations was to help set up and participate in a regular tweet chat for gynecologic cancer survivors. I have taken part in a number of #bcsm (breast cancer social media) chats and thought it would be helpful to have a chat for women with gynecologic cancers.

In early July, I read an ASCO Connection article, "Hashtag Folksonomy for Cancer Communities on Twitter" by Matthew S. Katz, MD.  Dr Katz, who also participates in #bcsm, was thinking along the same lines I was in January. In the article, he speaks about developing a hashtag nomenclature for building online cancer communities and for sharing information and news. I recommend reading that article and the comments provided by advocates and health care professionals to learn more. You might also be interested in reading Hashtags:High Time or Half-baked.

Over the past few days I have been a part of an interesting conversation among a number individuals 
( @womenofteal @SGOChrissy @drdonsdizon @subatomicdoc @DrMarkham @journeycancer @colleen_young @btrfly12  @tamikafelder @LurieCancer ) interested in developing a community for those diagnosed with gynecologic cancers.I am excited to announce that we are moving forward with a gynecologic cancer community on Twitter.  @btrfly12 has set up a twitter account for @gyncsm and the hashtag  #gyncsm ( gynecologic cancer social media) will be used for the online community of gynecologic cancers including cervical, endometrial, ovarian, primary peritoneal uterine, vulvar, and vaginal. There is still work to do regarding moderators, topics, date, time etc. so the start date for the Tweet chat is not yet finalized. If you are on Twitter be sure to follow @gyncsm for more information.  I will post additional information on this blog also.

Social media like Twitter is wonderful for sharing experiences, news and other information but there are drawbacks. Things posted on Twitter are public so there may be women who will refrain from participating due to a lack of privacy. Also a single tweet is 140 characters so at times it may be difficult to convey a complex topic but posting links may allow sharing of this type of information. I feel in the long run that the benefits will outweigh the negatives an I look forward to the first chat.


Dee
Every Day is a Blessing!

Do you have a Survivorship Plan?

Updated 2/4/13
Last week, I joined the Breast Cancer and Social Media (#bcsm) tweet chat. The topic of discussion was survivorship plans.  A few years ago the Institute of of Medicine (IOM) studied what care was provided survivors after they finished treatment . They found that little support was available for survivorsor their doctors regarding medical or pyschosocial issues. The IOM suggested that each survivor on completion of treatment be provided a summary of their treatments and a follow-up care plan.

Kathy LaTour editor of  Cure Magazine and author of the recently published article "Planning for Cancer Survivorship" was part of the discussion. She tweeted that only 43% of the NCI comprehensive cancer centers provide their patients Survivorship Care Plans (SCP)when they finish treatment. Since a large survivors are treated at their community facilities a majority of survivors do not have plans. I know I did not get a survivorship plan when I finished treatment although I had discussions with my doctor about what I should look out for and of course I had kept copies of all my scans and treatment summaries .  But I was very interested in hearing what she and other participants said about the key items of information that should be in the Plan.

Not only did we discuss what information should be included in a SCP but a few participants shared links to sample SCPs. Just because survivors are not provided personalized SCP does not mean they shouldn't have one. They can develop their own with the help of some great resources. And then the next time you see your oncologist/ radiation specialist you can have them fill in the blanks. Here are some great sources on SCPs.

You can download a sample plan from the article Kathy LaTour wrote.
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2023

Here is a survivorship plan ( pdf file) for ovarian cancer which is part of the SGO Survivorship toolkit.
https://www.sgo.org/wp-content/uploads/2012/09/SGO-Ovarian-cancer-survivorship-care-plan_FINAL_form.pdf

Here is a link to the IOM's fact sheet on Cancer Survivorship Plans.
http://iom.edu/~/media/Files/Report%20Files/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition/factsheetcareplanning.pdf

LiveSTRONGCare Plan  / Penn Medicine Oncolink
Answer a few questions and this program will develop a plan that you can discuss with your health care team
http://www.livestrongcareplan.org/

ASCO provides forms that you can fill in with your doctor
http://www.cancer.net/survivorship/asco-cancer-treatment-summaries

Memorial Sloan Kettering provides a concise 2 page form you can fill in with your doctor.
http://www.mskcc.org/sites/www.mskcc.org/files/node/3019/documents/summary-cancer-treatment-and-follow-plan.pdf

So fellow cancer survivors at your next follow-up visit be sure to ask your doctor about a SCP or better yet bring one of the forms with you and ask for help to fill in the blanks. This is one thing we can do to make our survivorship better.


Dee
Every Day is a blessing!