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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