The #gyncsm community started the new year off with a chat on Survivorship. We welcomed patients, survivors, caregivers, and physicians to our one hour discussion. You may find analytics here. Resources (there were so many good ones tonight) are located at the bottom of the post.
Here is some examples of the responses we received to our questions. Be sure to check out the transcript here for all the responses.
T1: What comes to mind when you hear the term "survivorship"?
- I look at survivorship as a way of rewriting your life. Kind of a rebirth. I've changed a lot from the person I was before cancer and I can't thank @IamCervivor for helping me find that voice. I may still be dealing with the aftermath of cancer but I am living my way. https://t.co/49DzZPjgla
- when I hear the term survivorship what comes to my mind is your life being a cancer patient after frontline treatment ends.
- When I hear "suvivorship" I think about the day-to-day of dealing with a cancer-related diagnosis. The stuff that is more guided by peer input than healthcare professional input. But it is really all encompassing I guess
- I can’t relate to the word survivorship. At least not yet. Don’t feel like I survived anything. Feel like I’m in a fight that will last the rest of my life.
- as a caregiver, I always thought of survivorship as what happened "after the bell." I've come to learn that those 12 letters hold entire worlds of joy and pain and everything in between
T2: Do you seek out survivorship stories? What do you find helpful about patient stories?
- When I was first diagnosed I reached out to @cancerhopenet to speak to a volunteer who was the same age and had the same diagnosis and was out 5 years from chemo. She gave me hope! So yes, I find survivorship stories helpful .
- Absolutely 100%. In the work we do at @IamCervivor it is imperative we elevate the stories of patients and survivors because not everyone experiences the same cancer journey but someone may identify with a part of your story that can help them.
- when I was first diagnosed I couldn't read enough survivor stories. I would try to compare each story to my own & try to find similarities which would indicate a potential positive outcome for me.
- I believe there's incredible power in patient stories - for the new survivors, who can find inspiration and a roadmap through their treatments - and for the survivors telling the stories.
T3: Which effects of survivorship - i.e. physical, emotional, social and financial - have impacted your life most?
- The emotional is number 1. I still deal with a bit of PTSD. The physical with post-treatment side effects that will never go away. The social to really focus on what is important in my relationships and friendships going forward. And it was financial for a long time.
- I would add a new category - mental. I’m a much more negative person than I was before. My mental health definitely suffered.
- I would say the physical effects of survivorship have been the toughest. Between surgical menopause & chemo after effects, my body has changed a lot.
- so many women dx before menopause so the effects after surgery are instant and tough to handle along with a cancer dx and treatment effects
T4: What are some of the types of support patients need at diagnosis, during treatment, and after? What tools or support have helped you with your survivorship?
- Some organizations with tools I hear good things about are @afreshchapter @livestrong @stepsthrough The amount of resources can be overwhelming but glad there are a variety. Disease-specific org's can help with recommendations
- I would have loved to have a community like @IamCervivor sooner than I did (after treatment ended). I would have loved financial support and more information on what questions to ask at appointments, etc
- Ways to handle the added financial stress seems to be lacking. Resources and options to cover costs are a godsend.
- at dx patients should be made aware if their hospital has a patient to patient peer program. Speaking w a survivor who went through it & can provide hope was instrumental for me & the reason I am a P2P volunteer. @MSKCancerCenter + @SHAREing
T5: Do you experience a fear of recurrence? If so, what do you find helpful when dealing with that feeling?
- I've had one metastatic recurrence and I've feared it every day since. It's gotten a little better over the years but while I'm waiting to see if Friday's scan provides me with year number 7 of NED status...I have a ton of anxiety.
- I've found breathing exercises, meditation, reading, photography, and in all honesty - burying myself in work to help in reducing the anxiety.
- the fear of recurrence has never gone away but has lessened. I try to keep in mind the women I know who have recurred & are still here many years later. A lot of mental gymnastics
- I would describe it as less a fear of it coming back and more a fear that it never left. Despite being NED I still can’t convince myself it’s gone- especially since I still feel so sick and exhausted all the time (possibly due to PARP drugs.)
T6: Do you ever feel survivors' guilt? How have you dealt with that?
- Definitely. I have often wondered why I am still here and others aren't. I've questioned the "what ifs". I understand things are out of my control but I can help share my story and others to prevent others from going through this.
- When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge
- I do feel survivor's guilt. I honor the friends I've lost by continuing all of my advocacy work. I keep them all in my heart & I always preach to others that aging is a gift.
- Every day. I lost my mentor/good friend three years ago. I'm very involved as an advocate and have lost many people I know. I keep in mind what my mentor told me: I was dx early so that I could be a voice for others, and I took that to heart. I can't turn my back and walk away after dealing with this disease.
- When I worked at a cancer org, I had a drawer with scraps, notes, memories, memorial programs. I carry those stories with me still.
T7: What has been your experience with follow-up and long-term care? After initial treatment, did you receive a survivorship plan? If so, how has it helped you during your survivorship?
- I was dx 15+ years ago, before plans were shared with patients. I am seen by an Adv Practice nurse as part of a survivorship program now. We talk & decide together what my follow-up should be based on guidelines. I can always call if I feel something not right.
- I feel that many hospitals lack adequate survivorship programs & survivors need to be better supported. I have had to find my own way & advocate for myself. We should be assigned "survivorship doulas"!
- After eight years, I recently graduated to every 6 month follow-ups. My gyn oncologist is very good at staying on top of things and I can contact him whenever I have a concern.Once you're his patient, you're his patient for life.
- This is so true —> we have much work to do to better provide #survivorship support for patients & their families.
We closed this chat as we do every one, by asking participants to share their TIL - "Today I Learned".
TIL: Survivorship much like cancer diagnosis, treatment, etc. looks different for everyone - and there is NO shame in that! We have some really great communities blending together with resources too.
We will not be chatting in February but do join us on Wednesday, March 8, 2023 at 8pm ET for our 100th Chat which will be an Open Mic night.
Please continue to tweet information of importance to our community using the #gyncsm hashtag.
See you in March.
Dee and Christina
RESOURCES
Tools/ Support - Twitter Handles
Survivorship Plans / Toolkit
