Wednesday, November 8, 2023

11/8/23 Patient Navigation in Gyn Cancers

We were pleased to have Roberta Codemo (@roberta_codemo), Patient and Financial Navigator and Debra Rundles (@RundlesDe), Oncology Nurse Navigator join the #gyncsm community for tonight's chat about patient navigation. 

You may find our transcript here and analytics here. Resources shared during the chat may be found at the end of the post. Below is a sampling of the responses to our topic questions. 

T1: What is a patient navigator? Are there different types? Do all patients have nurse navigators?

  • There are lay (non-clinical) navigators and nurse navigators. The primary distinction between the two are that nurse navigators hold a RN license.
  • from@OncNav ONNs (Oncology Nurse Navigators) patients “navigate” the healthcare system and help them get timely care and helps reduce disparities 
  • "Navigation is the process of helping patients overcome healthcare system barriers and providing them with the timely access to quality medical and psychosocial care from before cancer diagnosis through all phases of their cancer experience"
  • UCAN serves as patient navigators. We find sevices that are available beyond what we are able to do for patients. We also bring in nurses and doctors to help give advice during our support sessions to help navigate as well.
  • Patient navigators work as part of the health care team and help patients overcome barriers to care and help them understand the health care system. Barriers to care include transportation, child care, food insecurity, and housing
  • Oncology Nurse Navigator: A professional RN with oncology-specific clinical knowledge who offers individual assistance to patients, families, and caregivers to help overcome healthcare system barriers. throughout all phases of the cancer continum
  • Oncology Patient Navigator: A professional who provides individualized assistance to patients and families affected by cancer to improve access to healthcare services. A patient navigator may work within the healthcare system
  • Oncology Social Work Navigator: A professional social worker with a master’s degree in social work and a clinical license (or equivalent as defined by state laws) with oncology-specific and clinical psychosocial knowledge who offers individual assistance to patients

T2: What are some of the types of things that patient navigators do for patients? Do they also support caregivers?
  • Yes navigators support caregivers. Navigators rely on the patient to discuss who their support system and team will be and receive direction on what role each caregiver has in their treatment plan.
  • Patient navigators work with patients and their families to ensure that patients get the care that they need from diagnosis through survivorship.

T3: At what stage in a patient’s diagnosis does a navigator most often play a role?
  • Starting at the time of diagnosis, navigators will meet with patients and do an assessment to understand what a patient's needs are be it housing, transportation, child care or food insecurities.
  • Once a patient's needs have been assessed, navigators will refer patients to resources so they can get the help that they need and ensure that patients will be able to move forward with their care plan.
  • Navigators can help from initial diagnosis through survivorship: The Role of the Nurse Navigator in Women's Health jons-online.com/issues/2018/au from @oncnav

T4: Are there certifications for patient navigators?
  • Academy of Oncology Nurse & Patient Navigators (@OncNav) has a certification program for nurse navigators. 
  • In addition to formal patient navigator certifications, there is a cool certification program via @socialhealthnet Patient Leader Certification Program https://socialhealthnetwork.com/resources/5-reasons-to-consider-the-health-union-patient-leader-certification-program
  • I have Certificates of Completion in Patient Navigation and Financial Navigation through George Washington University. There are no formal training programs.
  • Yes. Currently there are Certification ONN-CG (Oncology Nurse Navigator Certified Generalist) and OPN-CG (Oncology Patient Navigator- Certified Generalist) Certifications occur via AONN.

T5: Where can a patient find navigation services?
  • Most major cancer centers have navigators on staff, though not all. There is a huge demand for navigators. You can also go to Advo Connectionand the National Association of Healthcare Advocacy websites to find private navigators.
  • Based on the conversation with those diagnosed with Uterine cancer we hear that they were offered no navigation services. I wasn't either back in 2009.
  • Since patient navigation is still emerging, I would imagine anywhere online patients gather - like through cancer centers or sites like @smart_patients @InspireIsHealth- is one of the best places to get referrals for navigators if your cancer center does not offer.
  • Usually through the organization but the initial contact can be through the medical provider.
  • services can be found at physician offices, hospitals, and some resource organizations. Sometimes patients and medical professionals are not aware of the value of navigation. Resource: CONQUER magazine"

Note there is no #gyncsm chat in December. Stay tuned for information about our 2024 chats. 

Happy Thanksgiving and Happy Holidays!

Dee and Christina


Resources 


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Friday, November 3, 2023

Patient Navigation in Gyn Cancers - November 8, 2023

 


We hope you can join us on Wednesday November 8, 2023 at 8pm ET (9pm CT, 5pm PT) for the last #gyncsm chat of 2023. Out topic of discussion will be Patient Navigation. 

The American Cancer Society states that "Patient Navigators can help with practical needs, physical needs and social and emotional needs". We will have patient navigators Roberta Codemo and Debra Rundles joining us to share more details about the role navigators play in the lives of gynecologic cancer patients. 

Questions guiding our chat will include:

T1: What is a patient navigator? Are there different types? Do all patients have nurse navigators?

T2: What are some of the types of things that patient navigators do for patients? Do they also support caregivers?

T3: At what stage in a patient’s diagnosis does a navigator most often play a role?

T4: Are there certifications for patient navigators?

T5: Where can a patient find navigation services?

If you have been helped by a patient navigator we hope you can stop by and share your experience with our community. 

We hope you can join us on X on the 8th! 

Dee and Christina 
#gyncsm Community Co-founders 
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Wednesday, September 13, 2023

9/13/2023 How do we #MoveTheMessage? Raising Awareness of Gyn Cancers


As we celebrated our 10th Anniversary as a Community on X/Twitter we were happy to be joined by Foundation for Women's Cancer, Cervivor, and Powell-Drescher Ovarian Cancer Research Foundation to discuss how to raise awareness of gynecologic cancers.

We had 19 participants and 1.2 million impressions. You may find more analytics here and the transcript here. 

Here are some tweets that highlighted key points mentioned during the chat.  

T1 What are some of the things you, or your organization, do to raise awareness of GYN cancers? Are there things you've tried in expanding your reach to underserved communities? 

 


T2: What are some of the key points to share when raising awareness about #CervicalCancer? What do you wish others knew? #gyncsm #MovetheMessage 

 


T3: What are some of the key points to share when raising awareness about #UterineCancer and #EndometrialCancer? What do you wish others knew? #gyncsm #MovetheMessage 


T4: What are some of the key points to share when raising awareness about #OvarianCancer? What do you wish others knew? #gyncsm #MoveTheMessage

T5: Vaginal, vulvar, and several other gyn cancer types are rare. With fewer advocates and organizations to speak about these cancers, how can we educate more people? What is most important to know? #gyncsm #MovetheMessage

You can visit the #gyncsm community blog Resources page to find links to some of the groups and/or info for the rarer forms of gyn cancer gyncsm.blogspot.com/p/resources_9.

We'd love your feedback on these three #gyncsm community questions. Feel free to comment in the box below or on Twitter.

Question 1 : Approximately how long have you followed the #gyncsm hashtag? What has the cancer community on this platform meant to you?

Question 2: How are you feeling about the cancer community on this platform now? Do you have back-up plans if/when this platform is no longer a good fit for you?

 Question 3: What chat topics have you found most helpful? What topics would you like #gyncsm to cover in future chats? 


Note there is no #gyncsm chat in October. Stay tuned for information about our next chat in November on Wednesday, November 8th at 8pm ET. 

Thanks again to all our health moderators and supporters through the years.

Dee and Christina 

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Thursday, September 7, 2023

How do we #MoveTheMessage? Raising Awareness of Gyn Cancers 9/13/2023


We hope you can join us on Wednesday, September 13, 2023 at 8pm ET for our chat about raising awareness of gynecologic cancers titled How do we #MoveTheMessage ? We will be joined by Gail O'Hara, Director of Corporate and Foundation Relations for the Foundation for Women's Cancer to share information about the types of gyn cancers - ovarian, endometrial, vulvar, cervical and vaginal. We'll also have guests from Cervivor, ECANA, and Powell-Drescher Ovarian Cancer Research Foundation.

Are you doing anything special this month to raise awareness? Are there organizations you work with to help raise awareness and educate about cancers below the belt? If there are, we hope you will share their information with our community. Our discussion will be guided by these questions:
T1: What are some of the things you, or your organization, do to raise awareness of GYN cancers? Are there things you've tried in expanding your reach to underserved communities?

T2: What are some of the key points to share when raising awareness about #CervicalCancer? What do you wish others knew?

T3: What are some of the key points to share when raising awareness about #UterineCancer and #EndometrialCancer? What do you wish others knew?

T4: What are some of the key points to share when raising awareness about #OvarianCancer? What do you wish others knew?

T5: Vaginal, vulvar, and several other gyn cancer types are rare. With fewer advocates and organizations to speak about these cancers, how can we educate more people? What is most important to know?

There is another reason why we hope you will join us this month. GYNcancer community will be celebrating our tenth anniversary as a community and chat on X (/Twitter) .


We appreciate the support and guidance provided by so many in our community that made our community a success and helped us achieve our mission to provide a place where those with a gynecologic cancer-related diagnosis and their caregivers can find reliable information and support, and to provide a place where health care providers can gain insight into the patient experience, discovering what topics/issues are most important to gyn cancer patients. We'd love your feedback on the following questions:
 
#GYNCSM Community Question 1: Approximately how long have you followed the #gyncsm hashtag? What has the cancer community on this platform meant to you?

#GYNCSM Community Question 2: How are you feeling about the cancer community on this platform now? Do you have back-up plans if/when this platform is no longer a good fit for you?

 #GYNCSM Community Question 3: What chat topics have you found most helpful? What topics would you like #gyncsm to cover in future chats?


See you on Wednesday at 8pm. 

Dee 
Co-founder #GYNcsm Community 

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Friday, July 14, 2023

July 12, 2023 Gyn Cancer Research News

At this month’s chat, the #gyncsm community discussed gynecologic cancer research presented at the #SGOmtg and #ASCO23 meetings. We had eleven participants and you may find the transcript HERE and additional analytics HERE.

Below are some responses to our topic questions.

T1: What #SGOMtg presentations did you find most interesting? [Acronym buster: SGO = Society of Gynecologic Oncology]

T2: Which #ASCO23 studies do you think may be of most interest to patients? [Acronym buster: ASCO = American Society of Clinical Oncology]

T3: In the last year, have there been any practice-changing gyn cancer studies patients should know about? (cervical, endometrial/uterine, ovarian. vaginal, vulvar, or other)

T4: What are some of the "hot topics" in gynecologic cancer research currently?

T5: Both #ASCO23 and #SGOmtg held sessions on disparity and equity in cancer care. What was highlighted and how can we work to decrease disparities in gynecologic cancer care?

  • We can point out all the voices that are missing from conversations. 
  • It also feels like we've been talking about disparity and equity for years, but I do see more and more studies taking deep dives and it is great to see gyn-specific studies that are fully about disparities or at least have incorporated it into the research. #gyncsm
  • Disparity and Equity are complicated to study, but it is entirely possible to not only study but design practical interventions to address. It can seem daunting but when we include more voices we can go far
  • Should we treat Pacific Islanders the same as Asian population? https://twitter.com/dholakiamd/status/1640733888988213258

T6: Cancer drug shortages were highlighted at both #SGOMtg and #ASCO23. What resources for health care providers and patients are available?


Note there is no #gyncsm chat in August. Stay tuned for information about our next chat which will be held in September during Gynecologic Cancer Awareness Month / Ovarian Cancer Awareness Month.



See you in September,

Dee and Christina
Co-Moderators

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Wednesday, July 5, 2023

Gyn Cancer Research News - July 12, 2023


We are happy to once again be sharing the latest Gynecologic Cancer Research News as we cover studies from this year's #SGOmtg and #ASCO23 Annual Meetings. Join us on Wednesday, July 12, 2023 at 8pm ET (7pm CT, 5pm PT) as we discuss findings that may impact how gynecologic cancers are treated in the future.

We will discuss topics in gyn cancer research presented at both meetings, presentations that oncologists and patients who attended found most interesting, which research may make the greatest impact on patient lives, and cancer equity topics. What studies were of most interest to you - Gynecologic cancer screening, treatment and research with regard to antibody drug conjugates? PARP inhibitors? Immunotherapy? We will also touch on the impact of drug shortages on patients and on clinical trials.

The Society of Gynecologic Oncology Annual Meeting on Women’s Cancer (SGO)
News Round-up from Cancer Network: https://www.cancernetwork.com/conference/sgo

American Society of Clinical Oncology (ASCO) Annual Meeting
GYN Cancer News from Cancer Network: https://www.cancernetwork.com/clinical/gynecologic-cancer

We'll use the following topic prompts (T#) to guide our discussion:
T1: What #SGOMtg presentations did you find most interesting?

T2: Which #ASCO23 studies do you think may be of most interest to patients?

T3: In the last year, have there been any practice-changing gyn cancer studies patients should know about? (cervical, endometrial/uterine, ovarian. vaginal, vulvar, or other)

T4: What are some of the "hot topics" in gynecologic cancer research currently?

T5: Both #ASCO23 and #SGOmtg held sessions on disparity and equity in cancer care. What was highlighted and how can we work to decrease disparities in gynecologic cancer care? 

T6: Cancer drug shortages were highlighted at both #SGOMtg and #ASCO23. What resources for health care providers and patients are available?

(Bonus if time) T7: Are there recent studies surrounding palliative care, survivorship, and psychosocial research that could help gyn cancer survivors?

We hope to see you on Wednesday July 12th! 

Dee and Christina 
Co-founders #gyncsm 
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Wednesday, May 10, 2023

May 10, 2023 Urogynecology and Pelvic Health

 
The #gyncsm Community welcomed Jocelyn Fitzgerald, MD (@jfitzgeraldMD) and Theresa Feeley, PT, DPT, PRPC (@drtpelvichealth) as our guests to chat about Urogynecology and Pelvic Health. Eighteen participants, which included survivors, patients and physicians, joined us.

You may find the transcript and analytics for this chat on Symplur, part of Real Chemistry.

Here is summary of the topic questions and answers. 

T1: What is pelvic health and how can it be impacted by gynecologic cancer treatments?

  • T1. Pelvic health involves the pelvic floor muscles. These are muscles that create a sling between the hip bones and lower spine. They assist in the stability of the hip girdle and support of the pelvic organs.
  • T1: These muscles aide in bowel, bladder and sexual function. To do this, they need a balance of strength and flexibility. They lift up to hold things in (urine, stool, gas) and relax down to let things out (urine/stool) or to allow intercourse, tampon use, GYN exams.
  • T1: Surgical and radiation interventions with gynecological cancer care can alter the muscle function, creating scar tissue and weakness. This sometimes leads to vaginal or pelvic pain, pain with intercourse, urinary/stool incontinence, to name a few.
  • T1: "Pelvic Health is the best possible functioning and management of the bladder, bowel, and reproductive organs... not merely the absence of disease or weakness... Pelvic health plays an important role in ... physical, mental, social, and sexual well-being." @bcmhouston
  • T1: Gyn cancer treatments, such as surgery, chemotherapy, and radiation, can all be used to cure cancer or reduce symptoms, and can also result in short & long term effects that can impact quality of life. Always important to talk to your doctor.
T2: What role does a urogynecologist play in the care of those diagnosed with a gyn cancer?
  • Both Urologists and Gynecologists can do fellowship training in female specific pelvic floor issues and become a Urogynecologist. We specialize in bladder issues like incontinence, recurrent UTI, pain vaginal prolapse, sexual dysfunction, vulvar issues, fistula, birth trauma, vaginal stenosis, fecal incontinence, etc.
  • T2 What on Earth Is Urogynecology https://pennmedicine.org/updates/blogs/womens-health/2015/june/what-on-earth-is-urogynecology via @PennMedicine
  • "What Is the Difference Between a Urologist and a Urogynecologist? Urology is a more general field than Urogynecology. For example, urologists treat women, men, and children. Urogynecologists, on the other hand, deal only with matters of a woman's pelvic floor.
T3: What options are there for alleviating pelvic pain? What has been your experience with pelvic pain?
  • Physical therapist use conservative options for alleviating pain. PT can do manual soft tissue massage throughout abdomen, incision sites, hip girdle and also in vaginal canal directly on pelvic floor muscles to relieve tension creating pain.
  • We can do several things. We can do combined surgery with Gyn/Onc (for example, repair prolapse or treat incontinence at the same time as cancer surgery, and we can help manage symptoms like GenitoUrinary Syndrome of menopause, recurrent UTI, and sexual pain we can also help with fecal incontinence, radiation changes, urinary urgency, etc.
T4: How does pelvic health impact intimacy and sexual health? What are tips and resources to maintain intimacy and sexuality after gyn cancer?
  • The muscles of the pelvic floor need to relax and stretch for intercourse. When there is increased tightness in these muscles, penetration can be painful. Soft tissue work (with a PT or done yourself) can reduce the tightness to allow for pain free intimacy.
  • I recommend talking about this early and often. For men with prostate cancer, for example, sexual changes they can expect from treatment come up right away. The same is not done for women, so you should advocate for yourself. Ask what anatomic changes you can expect. Will you have a partial vaginectomy? Will your ovaries be removed? Will you have radiation or chemo? All of those things can affect sexual function in different ways.
  • Tightness in the pelvic floor muscles can create a referred pain to the vagina, vulva and inner thighs. This also affects intimacy. I have heard it referred to as burning or cat’s nails. It's a similar effect to a knot in your neck that refers pain into your arm.
  • Ask what can be done to protect the vaginal and vulvar tissues, ask about hormonal treatments like vaginal estrogen. Ask about hormone replacement
  • Lubrication can be very helpful for pain free intimacy. Muscle tightness, medications, surgeries, stress, hormonal levels and many other things can result in dryness in the vaginal tissues increasing pain.
  • Pelvic floor wands are tools made to use in the vaginal canal to address muscular tightness. This can be done at home to compliment pelvic floor therapy.
  • T4: Dilators are a cylinder-shaped device that it used to help stretch the vaginal canal to work towards pain free intercourse. They are inserted similar to a tampon, in a comfortable position for 15-20 minutes. They progressively get larger to increase the stretch.

T5: What is pelvic floor physical therapy? How are patients evaluated for the need?

  • Pelvic floor physical therapist evaluate the muscles of the pelvic floor. We can assess strength, endurance, tension and pain both externally and internally with a finger placed in the vaginal canal. We also assess the hip girdle, lower spine, abdomen and breathing. The pelvic floor works with your breath. Using your breath in specific stretches or yoga poses with help to release tension in muscles. This will allow the muscles to relax and decrease pain
  • We combine many techniques based on the specific person. We can use massage externally and internally to loosen tissues. We sometimes focus on hip mobility, stretching, breathing and yoga poses. We also use a ton of education and home exercise programs.
  • A wonderful form of physical therapy that rehabilitates the pelvic floor muscles and connective tissues so that they can perform their functions in a coordinated, pain-free fashion. It also involves breathing techniques and other maneuvers.

T6: What are some pelvic health resources for those impacted by cancer-related diagnoses? What have you found helpful?

Thank you Drs. Jocelyn Fitzgerald and Theresa Feeley for sharing your expertise with our community. We will not be holding a chat in June. Join us for our next chat on July 12th at 8pmET as we discuss GYN Cancer Research News from this year’s ASCO and SGO Annual Meetings.


Dee and Christina
#gyncsm Co-Founders


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Friday, May 5, 2023

Urogynecology and Pelvic Health - May 10, 2023

It has been over 4 years since the #gyncsm community chatted about pelvic health, which is one of our highly requested topics. We are so happy to welcome Jocelyn Fitzgerald, MD (@jfitzgeraldMD) and Theresa Feeley, PT, DPT, PRPC (@drtpelvichealth) as our guests on this month's #gyncsm chat on Urogynecology and Pelvic Health. Dr. Fitzgerald is an Assistant Professor in the Department of Obstetrics, Gynecology and Reproductive Sciences, Division of Urogynecology and Reconstructive Pelvic Surgery at the University of Pittsburgh (https://www.obgyn.pitt.edu/people/jocelyn-fitzgerald-md). Dr. Feeley is the Director of Pelvic Health and Wellness Center at Atlantic Physical Therapy Center (https://atlanticptcenter.com/theresa-wilk-freehold-nj-pt-dpt-pelvic-floor-pt/ )

We know surgery and other cancer treatments can adversely affect the pelvic health of those diagnosed with a gynecologic cancer. Join us on May 10th at 8pm ET (7pm CT, 5pm PT) as we learn how a urogyneocologist and a pelvic floor physical therapist can help improve pelvic health. 

Here are the topic questions that will guide our chat.

T1: What is pelvic health and how can it be impacted by gynecologic cancer treatments?

T2: What role does a urogynecologist play in the care of those diagnosed with a gyn cancer?

T3: What options are there for alleviating pelvic pain? What has been your experience with pelvic pain?

T4: How does pelvic health impact intimacy and sexual health? What are tips and resources to maintain intimacy and sexuality after gyn cancer?

T5: What is pelvic floor physical therapy? How are patients evaluated for the need?

T6: What are some pelvic health resources for those impacted by cancer-related diagnoses? What have you found helpful?

 

We look forward seeing you at 8pm on May 10th. 

 

 

Dee and Christina 

Co-founders and Co-moderators #gyncsm 

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Wednesday, March 8, 2023

March 8, 2023 Open Mic and 100th Chat

What better day than International Women's Day to celebrate our 100th Chat. We had fifteen participants join us. You may find our transcript here and additional analytics here.

We began the chat by sharing our updated logo.  

The colors now reflect more gynecologic cancer awareness colors. 

We shared how #gyncsm chat sessions have been used in three different journal articles. You can view links to these as well as links to articles that reference cancer hashtag communities on our blog's  Publications page: gyncsm.blogspot.com .

Next we talked about our chat topics through the years. Check our Chat Topics page (http://gyncsm.blogspot.com/p/chat-topics.html) on our blog to see other topics. Here are three chats mentioned. 


"#gyncsm re use of symptoms; important of course for early care advocating for work up but it is important re nuances also bc many pts coming blaming themselves for not knowing or coming in earlier when sometimes not be possible. I liked this summary,"


Two participants shared projects or campaigns they are working on. 

We closed our chat in the usual way asking for TIL "Today I learned" and @gyncsm began by sharing:

There is no chat in April but Save the date for our next #gyncsm chat on Wednesday, May 10th, at 8pmET to talk about “Urogynecology and Pelvic Health”. 

Dee

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Friday, March 3, 2023

Open Mic and 100th Chat March 8, 2023

 


Christina and I are happy to invite you to #gyncsm's Open Mic and 100th Chat on Wednesday March 8. 2023 at 8pm ET. It seems like only yesterday when together with three gynecologic oncologists, Drs Dizon, Markham, and Boulay, we held our first chat in September 2013. 

To celebrate our 100th chat, we updated our logo.  


We've added three intersecting ovals (teal, peach, purple) to represent the intersection of those impacted by different gyn cancers into one community.

We thank each and every guest host and health care provider and researcher for providing important information to countless patients, survivors, advocates and caregivers through these chats. Our topic list is lengthy, but we focused our chats on the gyn cancers and their risks, advocacy, caregiving, quality of life, clinical trials, research results, news from medical conferences, genetics and personalize medicine, emotional and physical support, survivorship issues, recurrence, and how to work best with your doctor. Have a look at them all here.

On Wednesday we will open the floor to questions from this broad community in this 8th edition of an "Open Mic" chat. 

What's on your mind? 

  • Do you want to discuss OCRA's  recent consensus statement on fallopian tube removal to reduce risk of ovarian cancer? Or how to participate in OCRA's program free genetic testing program? 
  • Do you want to share your experience in a clinical trial? Or how to discuss clinical trials with your doctor?
  • Do you want to discuss the latest research in treating endometrial cancer?
  • Do you want to know what you can do to improve equity of treatment?  
  • Do you want to discuss the  use of mirvetuximab soravtansine-gynx, Elahere,for women with recurrent ovarian cancer? 
  • Do you want to know if others are experiencing QOL issues like yours? 
  • Do you want to discuss low-dose aspiring use for ovarian cancer risk reduction? 
  • If you are a health care provider, do you want to know where your patients get information? 
  • Do you want to talk about getting involved in advocacy? 
 
What better day to join with other patients, survivors and health care providers that on International Women's Day. We hope to see you on Wednesday. 

Dee and Christina
#gyncsm co-foudners
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Wednesday, January 11, 2023

January 11, 2023 - Survivorship Chat

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 
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