Wednesday, January 10, 2018

January 10, 2018 Chat: Caregivers Wants and Needs



Happy New Year!

We were pleased to have Lauren Hand (@LCooperHand) a Gynecologic Oncology Fellow at Magee-Womens Hospital of University of Pittsburg Medical Center and investigator on "The Essential Elements of Caregiver Support in Gynecologic Oncology", join us as our guest for this month's chat.

Forty-six participants joined us as we discussed #carepartners and #caregiver needs and wants. You may find additional analytics here.

We asked six questions and have included some responses to those questions below. For the complete transcript please visit Symplur.

T1: What are the top two things you would tell healthcare providers about the needs of caregivers that you think they need to hear?
  • Caregivers need to make time to care for themselves mentally and physically and they need to accept help from others
  • I'd tell providers that caregivers suffer the same level of burnout that physicians experience & that it should a consideration when designing a care plan
  • T1: 1. Importance of self care. 2. See number 1.
  • #Carepartners need access to information for care coordination. What forms/permissions need to be granted to allow carepartners to consistently speak on patients behalf & engage w/ care team.
T2: What would you share with those new to caregiving? What do you wish you or your caregiver had known about the caregiving role?
  • T2: Be sure you have a HIPAA clearance in place so you can get your person's medical info and give input to the doctor when the patient cannot or does not.
  • A2: It is essential to have your own support system. Seek out a support group and/or a professional therapist to address your own feelings and struggles. If people offer help, take it. You do not have to do it all and you shouldn’t
  • T2: That any decision your patient and you make is the right decision for now, regardless of how it turns out. We can't see the future. Jump on the horse and ride it!
  • Caregiving is one of the hardest roles ever. Important for caregivers to make time for themselves, allow help, ASK for help.
T3: What are some of the barriers to family caregivers getting access to and utilizing the support services they want and need?
  • T3 I’m my biggest barrier. I feel no one will give my loved one the care that I will because I love them
  • Barriers to accessing and utilizing support services are often rooted in lack of awareness of what is available or that they even exist, financial concerns, and time. Additionally, many caregivers place personal/internal pressure on themselves to do it all. 
  • The biggest barriers are realization that caregivers need help themselves. Actually finding and tapping into resources is also tough
  • Speaking from a tech side, interoperability deficits keep patients and caregivers from connecting the dots of their care & support. Access is a peculiar thing when communication is an obstacle
T4a: What resources for caregiver support have you found in your area (formal and informal)? Have you utilized these resources?
  • my hospital offers a caregiver support group, but my husband never went. Too busy, inconvenient time of day. 
  • caregivers in US and Canada can reach out to @cancerhopenet to be matched to support volunteers who are caregivers. 
  • my cancer dx and tx propelled us to finally find a spiritual home in joining a church. Not exactly caregiver support, but we can’t do this living and needing alone 
  • @Smartpatients is good for helping caregivers, patients, and concerned friends get up to speed with all the terminology involved in disease and care. No question is too small or too large. 
  • T-4 There has only been one local resource which was found late after my dx, not used. However, multiple online resources were utilized: @teaminspire was one. I also helped start a FB group called Friends and Family just for this purpose.
T4b: How did you find out about local caregiving resources - physician, nurse, cancer center, nonprofit, etc.?
  • none of the above. It was all found via personal online searching. Great reason for office liaisons
  • I heard about Caregiver resources from my cancer center's social worker.
  • It was not easy! I found out about local resources through online searches and some support groups post their information in the local paper. Word of mouth/friends can be a good resource, as well as the hospitals in the area.
T5: If you could design a local family caregiver support program, what would that look like? What would you see as most important?
  • I think some online modules or TELhealth style for quick consults could be helpful in taking time when you find that free 15min 
  • Include a 24/7 support line when you need someone available to talk through the difficult times.
  • I'd love to see #carepartners be able to reach out to another #caregiver at the same cancer center to help navigate the maze of paperwork , tests, insurance, scheduling. Every center has their own routine, requirements
  • You know, even basics, like a list of the grocery stores in the area that do Click and Ship and help setting up - practical things
  • Honestly, I think it should be multifaceted. Not every patient/caregiver responds in same way. I would make sure KIDS were an area of focus. I may also divide care by severity of disease at this can greatly impact the level of necessary care
  • I would like a caregiver support group that addresses the needs of younger families/caregivers. This includes better and more flexible scheduling. My particular area lacks non-English speaking support groups, which leaves a lot of people without resources.
T6: What national/digital resources for caregivers have you found helpful? How can national and local programs work together?
A complete list of resources shared during the chat may be found below. 

The Essential Elements of Caregiver Support in Gynecologic Oncology project:
If you are a caregiver of or a patient with gyn cancer interested in sharing more ideas about caregiving in a formal survey you are invited to participate in an online survey. Participation would involve 2-3 hours of your time through online surveys. Please contact (Lauren Hand) at handlc@upmc.edu.

Continue this conversation by joining us on the Smart Patients platform  (https://www.smartpatients.com/partners/gyncsm).

The February #gyncsm chat topic will be "Let’s Talk - Communication" focusing on patient-doctor communication.

We hope to see you then.

Dee
#gyncsm Co-founder

RESOURCES
@cancerhopenet Cancer Hope Network

@CancerSupportHQ Cancer Support Community https://www.cancersupportcommunity.org/caregivers

@Smartpatients Smart Patients Caregivers Group

@CancerDotNet Cancer.net

@SHAREing SHARE Caregiver Support https://www.sharecancersupport.org/caregivers-support/

@theNCI https://www.cancer.gov/resources-for/caregivers

@AmericanCancer American Cancer Society https://www.cancer.org/treatment/caregivers.html

@livestrong LIVESTRONG https://www.livestrong.org/we-can-help/caregiver-support

@CancerCare Caregiver resource page https://www.cancercare.org/tagged/caregiving

@ASCO Cancer.net international patients caregiver info https://www.cancer.net/coping-with-cancer/finding-support-and-information/international-patient-information


Family Caregiver Alliance https://t.co/6FgV2vrN3N (800) 445-8106

Friday, January 5, 2018

January '18 Chat: Supporting Caregiver Wants and Needs

Happy New Year to our community!



We will begin a new year of chats on Wednesday, January 10, 2018 with a discussion on Supporting Caregiver Wants and Needs. Our guest will be Lauren Hand, (@LCooperHand) a Gynecologic Oncology Fellow at Magee-Womens Hospital of University of Pittsburg Medical Center. Ms Hand is an investigator on The Essential Elements of Caregiver Support in Gynecologic Oncology, a project through the University of Pittsburgh. The goals of the project are to identify the unmet needs of family caregivers, summarize the current state of practice of supporting caregivers, and propose a set of essential and actionable elements to be included in any caregiver support program in gynecologic cancer.

The questions that we will use to guide are discussion are:

T1: What are the top two things you would tell healthcare providers about the needs of caregivers that you think they need to hear?

T2: What would you share with those new to caregiving? What do you wish you or your caregiver had known about the caregiving role?

T3: What are some of the barriers to family caregivers getting access to and utilizing the support services they want and need?

T4a: What resources for caregiver support have you found in your area (formal and informal)? Have you utilized these resources?
T4b: How did you find out about local caregiving resources - physician, nurse, cancer center, nonprofit, etc.?

T5: If you could design a local family caregiver support program, what would that look like? What would you see as most important?

T6: What national/digital resources for caregivers have you found helpful? How can national and local programs work together?

You may want to check out Cancer.net's pages on Caregivers Taking Care of Themselves:
https://www.cancer.net/coping-with-cancer/caring-loved-one/caregivers-taking-care-themselves

We look forward to chatting with you on Wednesday. 

Dee and Christina 
Founders Gyncsm

Wednesday, December 13, 2017

December 13, 2017: I've Survived - Dealing with Side Effects and Other Losses

This month, during our chat I've Survived - Dealing with Side Effects and Other Losses, we discussed physical and emotional losses experienced by gynecologic cancer patients and survivors.




We were pleased to welcome a number of new participants among the 26 people who joined us.  You may find our analytics here and a transcript here.

Below are the questions Christina used to guide our discussion along with some sample answers. Please read the complete transcript for all the comments.

T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? 
  • When I think of losses I think friends lost to OC, the organs that allowed me to have my children, my ability to recall words quickly.
  • T1 loss of control, loss of carefree living, loss of ability to assume things are ok even if it’s a false assumption
  • T1: For me, it's the faces of ovarian cancer survivors I have worked with over the years who are no longer here to advocate.
  • Cancer is a string of losses - of many kinds, so of course, there is lots of grieving as well. How could there not be?
T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you.
  • T2 Physically- organs: repro, vagina, bladder, portions of sm & lg intestine, left kidney, nephrosis of rt kidney, gall bladder, thyroid,
  • T2 Feeling the toes in my left foot, My thick hair ( after losing it twice it is thin) 
  • T2 whatever physical losses, care team must take seriously their effects on function and quality of life 
  • And it seems that physical losses tend to change how we see ourselves socially, emotionally...
T3: Has the death of women with a similar diagnosis affected you? What tactics do you put into action to deal with losses of friends and family? 
  • When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge
  • T3 A year after my recurrence I lost 4 friends from my support group. I was devastated, guilty, and scared of recurrence. Speaking to the Social worker helped. She gave coping skills.
  • T3- Yes. I have helped women as mentor locally and distance & have spoken at multiple services. Having been diagnosed as 'terminal' this has impacted me terribly, major SURVIVOR'S GUILT!!!
T4: Women diagnosed w/ gyn cancers have said the loss of sexual intimacy has been difficult for them. What advice do you have for others? 
  • It’s mind-blowing that many doctors avoid talking about fertility & sexual health. We are all adults. There’s no room for stigma, taboos. Patients need answers to pressing questions & reali life concerns.
  • T4- Intimacy does NOT require being physical. Have not had 'sex' in 7+ years. But this does not mean we've not been intimate. Be adventurous. Find joy in the simplest things, a soft touch, kissing, etc. If done properly, partners can find MORE INTIMACY without sex.
  • T4: Even for the tough things, good to know there are lots of resources out there when you are ready. Being open to talking about it first step..
  • many of my brca+ friends who've had ooph talk about painful intercourse/vaginal dryness and feeling a loss of sexuality. Luckily they've worked with their providers to overcome those hurdles
T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? 
  • All of them.
  • T5: As we learn more about all of the losses, research has to focus on how we support women to LIVE fully despite the loss.
  • T5: The goal is to have more cancer survivors, but we have to plan for how to support them as well.
  • Also more scientific research to bring therapies from bench to bedside.
  • T5: I'd also love to see more research surrounding getting ahead of neuropathy. Chemo nurses have tips but nothing universal
Please scroll down to see a list of Resources shared during the chat. 

You may continue to discuss these questions with us on the Smart Patient Platform (https://www.smartpatients.com/partners/gyncsm). 

Mark your calendar for our first chat of 2018 on January 10th.  We will discuss Caregivers - their needs and wants with guest Lauren Hand, Gynecologic Oncology Fellow, Magee-Womens Hospital of UPMC.

We wish everyone Happy Holidays! See you in 2018!



Dee and Christina
Founders #gyncsm

RESOURCES

Nancy's Point There Will Be Tears at Christmas http://nancyspoint.com/will-tears-christmas/

Cancer rehabilitation @cancerDotNet https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/rehabilitation

Renewing Intimacy & Sexuality after Gynecologic Cancer   http://www.foundationforwomenscancer.org/wp-content/uploads/Sexuality-Brochure_Final.pdf

Women's Guide to Sexuality During & After Cancer Treatment

@cancdotnet Managing menopause and side effects from treatment 
https://www.cancer.net/blog/2016-08/survivorship-after-gynecologic-cancer-managing-menopause-and-treatment-side-effects

In Shock  by Rana Awdish (book)

Society for Participatory Medicine @S4PM (organization)

Chemo Induced Peripheral Neuropathy - Participating in a Clinical Trial

Friday, December 8, 2017

December '17 Chat: I've Survived - Dealing with Side Effects and Other Losses


On various social media platforms we have heard women diagnosed with gynecologic cancers discuss the difficulties they have after diagnosis. They ask: When will I feel less tired? When will my hair grow back? When will the numbness in my hands and toes stop? When will I feel comfortable being intimate? Or they will share that they feel sad because they are unable to have children or because the friend they made during chemo has passed away. And others ask why they feel so isolated when all around them family and friends are happily celebrating the holidays. 

We will discuss these physical and emotional losses during this month's #gyncsm chat, I've Survived - Dealing with Side Effects and Other Losses on Wednesday, December 13, 2017 at 9pm ET. We welcome all those impacted by gyn cancer, wherever you are in your experience, along with previvors, caregivers, loved ones, advocates, healthcare professionals and those impacted by other cancers and serious illness.

We will use the following questions to guide our discussion:
T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? 

T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you.

T3: Has the death of women with a similar diagnosis affected you? What tactics do you put into action to deal with losses of friends and family? 

T4: Women diagnosed w/ gyn cancers have said the loss of sexual intimacy has been difficult for them. What advice do you have for others? 

T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? 

We look forward to you joining us at 9pm ET on Wednesday, December 13th. 

Dee
#gyncsm Co-founder

Wednesday, November 22, 2017

We are Grateful


During this Thanksgiving Holiday we are especially grateful for our health moderators-  Dr. Rick Boulay, Dr. Merry Markham, Dr. Shannon Westin and Dr. Ann Becker-Schutte as well as our supporters Dr Don Dizon, Dr Matthew Katz, SGO,  and Iamcervior (Tamika Felder). Our community appreciates the sharing of your time and talents with all of us.

Dee and Christina
#gyncsm co-founders

Wednesday, November 8, 2017

Nov 8, 2017 #gyncsm Chat: Spotlight on Cancers of the Uterus



This month we put the spotlight on Cancers of the Uterus. We discussed risk factors, symptoms and treatments of endometrial / uterine cancers as well as uterine sarcomas. 

We were pleased to have 24 participants join us including the Peach Society an organization devoted to raising awareness of endometrial cancer. 

You may find a complete transcript here and more analytics here

The following are some sample responses to out topic questions. You may find additional resources shared with the community at the end of the post. 

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role? 

  • Risk factors for uterine cancers from @cancerdotnet https://t.co/wptvJ7lIGE
  • T1: uterine/endometrial cancer risks include: Age, obesity, reproductive history, hormone therapy, as well as genetics
  • T1: #endometrialcancer is the malignancy most closely associated with obesity. Of course genetics #Lynch can play a role as well.
  • About 3% of endometrial cancer is due to a hereditary cause, called Lynch syndrome. If you have a family history of endometrial and colon cancers,you may want to meet w/ a Genetic Counselor to learn more  
  • T1: some of the genetic links are Lynch syndrome (up to 60% risk), Cowden syndrome (up to 30% risk), and a small risk with PJS
  • All of these factors increase systemic estrogen which is implicated in the most common types of #endometrial cancer. 

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?



T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects? 



T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?



T5: Are there any special support services for cancers of the uterus? Where can people learn more? 



Please join us next month on Wednesday, December 13, 2017 (9pm ET/ 8pm CT / 6PM PT) for a chat on  I've Survived - Dealing with Side Effects and Other Losses

Wish all the members of our community a very Happy Thanksgiving!

See you in December. 

Dee
Co-founder #gyncsm 

RESOURCES

@MayoGynecology video obesity and endometrial cancer https://t.co/rJcT0ryuRL

Peach Outreach symptom cards, visit: http://peachoutreach.com/symptomcards/

Imaging and endometrial cancer diagnosis http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer


Friday, November 3, 2017

Nov #gyncsm Chat: Spotlight on Cancers of the Uterus



This month we will be putting the spotlight on Cancers of the Uterus or Cancers of the Womb as it is called in the United Kingdom. We will discuss risk factors, symptoms and treatments of endometrial / uterine cancers. We will also discuss uterine sarcomas and how they differ from other cancers in presentation and treatment.

Guiding our discussion will be the following Topic Questions:
T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role?

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?


T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects?

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?


T5: Are there any special support services for cancers of the uterus? Where can people learn more? 
You will find helpful information on this month's topic in a booklet produced by the NCI What You Need to Know About - Cancer of the Uterus. 

We look forward to you joining us on Wednesday, November 8, 2017 at 9pm ET (8pm CT, 6pm PT).

Dee
#gyncsm Co-founder


Related Chats:
Radiation Oncology - What is is? When is it used? 2017
You never heard of Primary Peritoneal Cancer and Gestational Trophoblastic Disease? 2017
Gyn Cancer Awareness Month and Spotlight: Uterine and Endometrial Cancers 2015