Wednesday, April 13, 2016

Re-envisioning Ovarian Cancer Survivorship -April 2016 Chat

Tonight our guests were Massachusetts General Hospital and Harvard Medical School's Dr Don S Dizon (@drdonsdizon) and Dr Teresa Hagan (@TLHagan) . We discussed various aspects of ovarian cancer survivorship with our 43 participants. More chat analytics may be found here.

Below are our topic questions with a few responses. For the complete transcripts please visit this Symplur page.

T1a: What does survivorship mean to you? What is it to be an ovarian cancer survivor?
  • Survivorship in all cancers is defined as any time after diagnosis.
  • Learning to live one's best thru treatment & beyond despite uncertainty, loss of control that ovca dx brings
  • survivorship is defined by the individual. If they like the term
  • Survivorship seems so straightforward, yet it's so subjective and personal
  • Although "survivorship" is defined, everyone interprets differently

T1b: Do you use the term survivor? If not, what term do you prefer?
  • My wife prefers the terms "Experienced cancer" She's an 8 year CML survivor still in treatment. She doesn't like "survivor"
  • I use the term remission. After all I have researched it makes the most sense to me
  • While in tx for 1st recurrence questioned if I really was "survivor," Decided I am as long as I am breathing in & breathing out
  • I'm in search of JUST the RIGHT word to replace 'survivor', personally; I am a well person with a history of cancer.
  • think that "survivor" has baggage for many because it has been linked with NED, so some folks w/mets feel left out of term.
  • everyone should feel free to use whatever word fits best for them. Too much pressure to be positive, to fight & survive
* note: The October #gyncsm chat topic will be on the terms used by those diagnosed with cancer. 

T2: What needs and concerns did you have when you were first diagnosed and treated? How were they addressed? What was lacking?
  • I certainly hear from some of my clients that the mental health/emotional coping wasn't addressed as fully as they needed.
  • Things happened very quickly first-line. No major complications. Lots of concerns AFTER tx ended. Thank goodness 4 support grp!
  • I feel what is missing is more stories of women living with OC. When I was first diagnosed I was sure I would not survive
  • Just because many are still alive doesn't mean they're doing well. #QualityOfLife issues are minimized.
  • I think honesty is lacking in those up front days with regard to the spectrum of emotions: shock, grief, loss, fear, panic.
  • Women seem to seek first to know they are not alone and also practical concerns that come with treatment.
  • Most lacking was when treatment ended the first time. I was a rudderless ship. Looked for other women dx for support
  • palliative care needs to be integrated with the entire experience

T3: How was the topic of recurrence addressed with you? Did you find it helpful or not helpful at the time - and now looking back?
  • Recurrence is such a hard topic, but I've read too many stories of women who felt slammed b/c it wasn't discussed at all
  • It was addressed but I was told the likelihood was considerable. When I wanted to remove my power port I was asked why.
  • so worried about trying to figure out how to avoid recurrence and survive, what we really need is help to focus on living
  • Discussion about weight is an opportunity to impact risk of other disease and length of life 
  • thinking of the experience as chronic is so important regardless of disease state

T4a: What are your needs and concerns now? (After recurrence or As you live past diagnosis and initial treatment of ovarian cancer)
  • Now that third remission is 8+ years, distinguishing btn symptoms indicating another recurrence and normal aging process
  • 7 years from recurrence Still worry. Then there is  Chemobrain and neuropathy
  • Was far more afraid of recurrent ovca that I had, than new cancer that MIGHT show up 10 years down the road, fast approaching

T4b: What issues - physical, emotional or other - currently give you the most difficulty?
  • Need clear guidelines 4 long-term remission after multiple recurrences follow-up-scans, CA-125. GynOnc & MedOnc opinions differ
  • Leg pain from carb/taxol still present. Issues with my sleep. 6 months post chemo. Told leg pain was a chemo gift and would stay
  • Knowing reporting ANY gyn symptom gets me a ride in a machine, concerned w/past rads exposure (25CTs 5PETs +rads for BreastCA)

T5: What actions have you taken in living past your ovarian cancer diagnosis and treatment? Were you given a Survivorship Care Plan?
  • Serve ovarian cancer community as research advocate and provide peer support. I was not given ovarian cancer survivorship plan
  • Refuse to let ovarian cancer define who I am. Take frequent breaks from being all teal to being just me
  • Went back to running. Completed two 5ks in last two weeks. Working on my diet and trying to find ways to reduce stress
  • Don't always have to be a survivor. Sometimes its good to just be you
  • Lynch team at Dana Farber gave me a Lynch plan. No other plan given except come back every three months. I have to call and book

We always end our chats by asking participants to complete the phrase "Today I learned..." (TIL). Here are a few from today's chat.

TIL: Survivor is not necessarily the term of choice. Need to continue to work on the language around this for gyn cancer patients
TIL there is still room for growth in making sure that all #gyncsm patients feel that their mental health & QOL are supported.
TIL We still have work to do to improve gyn patient education on side effects emotional needs 
TIL dismissal of pt needs, fears and lack of transparency in Communication impedes pts attainment of quality of life

We appreciate the support and RT's by our followers especially OCRFA, NOCC and SGO.

Do you want to join in the conversation or continue to discuss this topic? Join us on Smart Patients at

Our next chat topic will be "Getting Social with Your Health". Join us will special guest @teaminspire on May 11 at 9pm E.

See you then.

#gyncsm co-moderator

Link shared during chat
Living With Cancer: Coming to Terms by Susan Gubar

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