We were so happy to have twenty-six participants join us for tonight's #gyncsm chat on Finding Emotional Support. See the transcript here and other analytics here.
Here are some highlights from our chat. Note that the highlights from Question 7 include links to emotional health resources.
T1: What are some of the emotions that come with a cancer-related diagnosis? How have yours changed over time?
- T1 Mine ran the gamut – shock, fear, sadness, anger, grief, and also gratitude for living close to an NCI comprehensive Cancer Center.
- T1. I don’t know why I was so surprised now looking back! Fear has passed as well
- T1: Is overwhelmed an emotion? When I found out I had the genetic mutation behind all the cancer in the family, it felt good to know but also terrible. I now feel like a fell into a no-mans-land in healthcare.
- I think guilt is there too. What could I have done differently? What will this mean for my kids?
T2: When you have needed emotional support, who did you reach out to? Was your healthcare team involved?
- T2. Family, friends, fellow advocates, 100% healthcare team
- T2: I ended up not reaching out a lot. Part who I am. Part because my best friend was in end stage MBC. My husband was my rock, but I know he was overwhelmed, too
- T2: blessed to have a friend introduce me to @stepsthrough https://stepsthrough.org/ They offer FREE counseling for OC patients and caregivers
- When I was first dx Family was the first support then I reach out to @CancerHopeNet and spoke one-on-one volunteer after seeing a flyer in my cancer ctr. Support groups at @RutgersCancer & @Cr4Hope helped me through the years.
- We sometime stigmatized patients (especially women) for having mental health need including self-censorship. Your care team should be there to help you find the support you need.
- I sought out a psychotherapist who specialized in people with #hereditarycancersyndromes. I believe my genetic counselor referred her.
T3: What do you see as some of the impacts that the global pandemic is having on the emotional needs of those facing a cancer-related diagnosis? How has the pandemic impacted your need for emotional support?
- T3: Can't image how hard it must be to go through treatment now during the pandemic, being immunosuppressed, having visitor restrictions. I miss having my husband with me during routine followups
- T3: Cancer is super isolating to begin with! I guess I think every emotion has got to be more intense when people are already stressed and stretched emotionally.
- Agree. Also, people are afraid of being in groups which make it more isolating when seeking help
T4: Based on your experience and perspective, what types of emotional support do patients need most and what areas do you see as lacking adequate resources?
- T4. It’s comforting to talk to survivors of your specific cancer. They totally understand what you are going through & are a good resource for hope & info
- T4: As someone mentioned, it is important that doctors make referrals and be the one to bring it up. Open the door for that conversation. I see the “we saved your life, now you are on your own” kind of experience changing but a ways to go re: whole-person healthcare
- T4 For me I needed more help after I finished treatment handling the emotions - not seeing my gyn onc as frequently I admit freaked me out a bit. I needed a way to handle the fear of recurrence.
- T4: Yes, this right here. My cancer center was great that first year post treatment, with referral to therapist. Now I sense they are impatient with me.
- T4. #gyncsm I think many woman do seek out some sort of support -- it's the men who have #hereditarycancersyndromes that concern me the most. They just don't want to talk about it or deal with it. #Lynchsyndrome
- 4. Support at different stages - early dx, active treatment, survivorship - matters. Long-term survivors like @womenofteal provide such comfort to women facing challenges when "normal life" is actually "new normal."
T5: What have you found to be most helpful in providing emotional support? In-person or virtual support groups, other online platforms, one-on-one peer support, friends/family, counseling, other?
- T5: As an introvert, I think I could definitely handle a Zoom meeting better than in-person. Nice that the options are increasing.
- T5: Reading books about #Hereditarycancer and connecting on Twitter with other advocates like @BRCAresponder has been super helpful to me. Meeting someone who truly understands what you're feeling and experiencing makes all the difference in the world. You feel less alone.
- ...it takes a village of support options to provide emotional support when, where, and in the way that's best for each individual.
- I prefer online platforms like @smart_patients and @FacingOurRisk discussion boards. I do better in written formats like Twitter :)
- There is no one size fits all. This is why it is so important to have multiple choices for emotional support. We need a healthcare system that can point you to the resource options. Including different types of technology
- Having so many resources is great. And also overwhelming at first. Be sure to offer resources all along the way and not just in the beginning when processing info is difficult and needs not yet known. #gyncsm :)
T6: How do you think disparities in care and access to care impact emotional support needs following a cancer-related diagnosis?
- #gyncsm disparities in care can make it difficult to get that initial diagnosis!! It was a challenge for me and I have access and knowledge. #SystemicRacism is prevalent in this area. Advocacy & awareness a needed.
- T6: We know Black women's physical pain tends to be dismissed more than white women's, so I can imagine their emotional pain is, too
- #SystemicRacisim and the health disparities it causes runs the spectrum of your #gyncsm journey from diagnosis to emotional support.
- Let alone those who are transgender
- https://ascopubs.org/doi/full/10.1200/JCO.21.01249 This was a very powerful piece. @JCO_ASCO
- #gyncsm The #healthdisparities amongst minorities are enormous and disconcerting. Minorities often to not get the basic care they need, require and deserve, let alone the emotional support. It's sad and we must do better on this front. #MinorityHealth
T7: What resources, organizations, groups, and/or people have offered you the best emotional support? What resources do you recommend for those looking for emotional support?
- T7: Organizations with oncology social workers you can talk to on the phone include: @CancerCare Hopeline 800-813-HOPE (4673) and for #ovariancancer (Ovarian Cancer Research Alliance) @ocrahope 212-268-1002
- @ocrahope has online support groups ocrahope.org/patients/stayi… and @stepsthrough @ClearityFnd has a 6 month program of free professional counseling in tandem with education, referrals and other resources for any woman facing ovarian cancer, her family and active caregivers.
- Cancer peer matching via @ImermanAngels @CancerHopeNet @ocrahope and also @afreshchapter 's mission is to help people make sense of the complex emotions of cancer and give them the tools, support, and community to thrive – even in the midst of challenging circumstances.
- Tips for care via @oncosocialwork https://aosw.org/patients-caregivers/tips-for-care/ and Cancer Support Community @CancerSupportHQ has a live webchat and many other resources cancersupportcommunity.org
- @SHAREing has a great "Let’s Talk about It: Ovarian Cancer" monthly online group. @CancerHopeNet one-on one and @ClearityFnd and I also like @teaminspire @smart_patients and recently @advovarianca_hu (Advanced Ovarian Cancer )
- #OvarianCancer @stepsthrough stepsthrough.org via @ClearityFnd The. Best. Ever!! #gyncsm Life saving on so many levels!!
T8: As patients, advocates, and healthcare professionals, burn-out is a problem that has for many only intensified in recent years. Where do you find emotional support for interacting with the healthcare system?
- T8: I think it is important as advocates to give ourselves permission to step back from time to time. And also to give yourself a healthcare/cancer-land break when you can.
- T8: #gyncsm: Limiting interaction -- social media detox is always helpful.
- T8 Some oncology organizations like @ASCO are addressing provider burn-out and offering support .
- T8: I’d have to say colleagues, friends, family, counselors. People with an open ear and a willingness to listen and provide support and help with resiliency.
We invite you to join us for our next #gyncsm chat on Wednesday March 9th at 8pmET as we discuss “Cervical Cancer Updates and Global Initiatives”.
Have a good month!
Dee and Christina
