#gyncsm Community: 2018

Wednesday, December 12, 2018

Pelvic Health After a Gyn Cancer Diagnosis Chat - Dec 12, 2018

We finished another wonderful year of informative chats by discussing Pelvic Health After a Gyn Cancer Diagnosis. We were pleased that Dr Tracy Sher (@PelvicGuru1), pelvic physical therapist, was able to join us as our guest.

Some responses to the topic questions may be found below. You may find the complete transcript of this chat here and the analytics here.

T1: What is pelvic health and why is it important?

Great question because most people don't know what #pelvichealth is. It involves the entire area of the bony pelvis, lower abdomen, genitals, reproductive organs, muscles, bowel/bladder/sexual function, nerves...and more (for male and female parts).
@bcmhouston website states : "Pelvic Health is best possible functioning & management of the bladder, bowel, and reproductive organs. It is not merely the absence of disease or weakness in these organs."

T2: How do treatments for gynecologic cancers impact women's pelvic health?

Treatment for GYN cancers often create issues with other organs & systems in the pelvis. GYN survivors often have bladder/bowel issues after radiotherapy & surgical treatment
During #brachytherpay, radiation is applied directly to the cervix. While effective in treating #cervicalcancer, it’s side effects can be devastating to the pelvis and vagina.
Pelvic cancers impact pelvic health - both disease and the treatment can cause pain and organ dysfunction - both surgery and radiation can effect function of the bowel and bladder
hysterectomy to treat cancer has complications which need proper care. Hormonal Changes in pelvic structure (improved with pelvic Physio for MSK training which has level 1 evidence Bø et al.)
The pelvis is a complex space - with bowel, nerves, bladder, blood vessels - cancer or cancer treatment can impact any of the components.

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

Many women in our Cervivor community are finding relief from pelvic pain after working with a Pelvic Floor Therapist. However, for those in more rural areas, they may not have this option
So, we highly recommend seeking out professionals who know about pelvic pain. Such as GYNs, Urogynecologists, Urologists, Pelvic Physical Therapists, OTs, NPs (to name a few) who attend conferences or take courses in pelvic pain care. (Such as @PelvicPainOrg
Seems like several specialists are involved in overall pelvic health - gynecologist, gastroenterologist, urologist, GI docs and there is even a urogynecologist. Seems like patients would need navigation related to their particular symptoms.
Here are just some of the things @MayoClinic lists as pelvic pain treatment options: Medication, Physical therapy, Stretching, massage and other relaxation techniques, TENS, Neurostimulation (spinal cord stimulation), injections and psychotherapy. https://www.mayoclinic.org/diseases-conditions/chronic-pelvic-pain/diagnosis-treatment/drc-20354371

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

It’s hard to feel sexy with pelvic pain.
"Asking about sexual pain and dyspareunia and performing a thorough physical examination are essential steps to guide management, which must be tailored to individual patient goals." Yes! Tailor treatment to the needs of patients https://www.ncbi.nlm.nih.gov/pubmed/27607852
Don’t give up on intimacy. Be patient with yourself. If you have a partner, COMMUNICATE. Communication is KEY to finding what will work for you and your partner.
#SexualHealth IS #pelvichealth. It's important for those who have partners to continue to have all sorts of emotional and touch intimacy. Not just penetration focus. I see so many cases where this changes.
From a needs assessment in 2010 "Greater than 40% of survivors expressed interest in receiving sexual healthcare, but few had ever sought such care"
It was recommended for me to follow excellent work by people like @will2lovedotcom for resources. Check this out at https://www.will2love.com/

T5: What is pelvic physical therapy? How long after pelvic surgery can it be helpful?

Like all physical therapy, pelvic PT can help break up scar tissue, help regain strength and range of motion and help restore function. https://www.pelvicsanity.com/single-post/2017/06/21/Pelvic-Physical-Therapy-after-Surgery---Why-Pelvic-and-Abdominal-Surgeries-Need-PT-Too
@PelvicGuru1 website explains what pelvic physical therapy is https://pelvicguru.com/2013/12/28/what-is-pelvic-physical-therapy-and-why-doesnt-everyone-know-about-it/
Physical therapy is a profession,not an intervention or a technique. What happens in a visit depends on who is the therapist. A pelvic health PT can do a careful (not painful) eval and help set up an individual program

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

Love this question because so many people still don't realize that there are physical therapists who specialize & care for pelvic health conditions. Doing this 20 years and my mentors many more. Patients often say "WHY didn't I know this type of care existed before!?"
You can also find excellent people at @APTAtweets @womens_PT @HermanWallace and ask her on twitter with #pelvicmafia
Typically, there's a recommendation to wait at least 6-8 weeks after a gyn surgery to do any type of internal/vaginal assessments/treatments for pelvic PT, but there's so much we can do even before that in terms of movement, touch, education, etc.
In addition to those organizations and practitioners joining along on #gyncsm, many find the @hystersisters site - not a nonprofit btw and does have ads - helpful. https://www.hystersisters.com/vb2/article_757741.htm

We look forward to having you join us next year on January 9, 2019 when we discuss Vaccines in Cancer Care and Risk Reduction.

Our wishes for the #gyncsm community.:

Dee
Co-moderator

Resources

@GYNCancer Renewing Intimacy & Sexuality after Gynecologic Cancer brochure https://www.foundationforwomenscancer.org/wp-content/uploads/Sexuality-Brochure_Final.pdf

@DanaFarber Sexual Health, Intimacy and Cancer https://www.dana-farber.org/health-library/articles/sexual-health,-intimacy,-and-cancer/

Gynecologic cancers predict coexisting pelvic floor disorders Publish date: March 30, 2015 https://www.mdedge.com/familypracticenews/article/98401/oncology/gynecologic-cancers-predict-coexisting-pelvic-floor

Life After Cancer: The Role of Pelvic Physical Therapy
https://pelvicpainrehab.com/female-pelvic-pain/2983/life-after-cancer-the-role-of-pelvic-physical-therapy/

American Physical Therapy Association
https://www.apta.org/

Urinary incontinence
https://www.womenshealthapta.org/wp-content/uploads/2013/11/Urinary_Incontinence.pdf

Pelvic Pain
https://www.womenshealthapta.org/wp-content/uploads/2013/11/Pelvic_Pain.pdf

Saturday, December 8, 2018

Dec 12 : Pelvic Health Chat

Updated 12/10/18

We close this year of chats with a discussion of Pelvic Health After a Gynecologic Cancer Diagnosis. Join us on Wednesday, December 12, 2018 at 9pmET for an interesting discussion.

We know that women are impacted in many ways by the treatments they receive for a gyn cancer. This month's questions will be:

T1: What is pelvic health and why is it important?

T2: How do treatments for gynecologic cancers impact women's pelvic health?

T3: What options are there for alleviating pelvic pain? What specialists typically treat 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 physical therapy? How long after pelvic surgery can it be helpful?

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

In preparation for this chat, please check out Pelvic Guru's (https://pelvicguru.com/for-patients/) patient pages.

We look forward to having you join us.

Dee

#gyncsm co-moderator

Wednesday, November 14, 2018

Cancer and Careers - Nov 14.2018 Chat

This evening we held our first discussion on Cancer and Careers. While a representative from Cancer and Careers (@cancerandcareers) was not able to join us tonight we appreciate the information they provided to us to share with our participants.

Below you will find our topic questions and a sampling of responses. You may find the transcript here and the analytics here.

T1: Did you work during treatment? What brought you to the decision to work or not work?

Providers - Do you have a sense of what percentage of your patients work during treatment? Do you discuss this with patients?

Many women in our community continue to work through treatment, when possible, to keep “normalcy” for themselves and their families.
Some gyn cancers might be though of as older women's cancers but the age range is pretty wide even if some ages more likely. Also people are working longer. Work and career is a component of cancer care that needs discussion.
For some patient work helps to have something other than cancer to focus on. For others it is a financial necessity and a way to stay insured.
Others find that taking a leave from work is helpful. We encourage women to speak with their provider about what is best.
The decision to continue working or not is very variable person-to-person and even with the same chemo. Data presented at @ASCO on employment changes and healthcare use in the year after #cancer diagnosis....more in next tweet http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.6551
48% pts reported being employed since diagnosis. Among employed pts, 56% reported making an employment change. Most common employment changes were taking extended paid time off (53%), unpaid leave (40%), switching to a flexible schedule (29%).
more data on Timing of Employment changes: most were made at initial diagnosis (18.3%), during treatment (70.6%), and ≤12 months post-treatment (26.2%); 28.6% made more than one change.

T2: If you were working when you or your loved one were diagnosed, how much information did you share with your employer?

What are some guidelines when making decisions about how much to share and when?

@CancerAndCareer ’s Checklist for Healthcare Professionals’ features questions that can help facilitate a conversation with your patient or client about some of the issues related to balancing work after a cancer diagnosis: https://www.cancerandcareers.org/en/healthcare-professionals/checklist
Going straight to the horse's mouth: US Equal Employment Opportunity Commission @USEEOC has a Q/A about #Cancer in the Workplace and the Americans with Disabilities Act (ADA) https://www.eeoc.gov/laws/types/cancer.cfm

T3: What issues did you have if you worked during treatment?

Are there laws to protect cancer survivors and patients in the workplace during and after treatment? How do you ask for accommodations due to your diagnosis?

#cancer survivors can experience challenges in the workplace like managing side effects, deciding whether to disclose, understanding legal protections and getting the appropriate support from employers & coworkers and so much more via @CancerAndCareer

T4:What do those unable to work due to their cancer diagnosis need to know about state and federal disability laws? What are some resources in this area?

What did you find helpful?

States have fair employment laws, many provide additional protection beyond what federal laws offer. Check @triagecancer’s Chart of State Laws covers all of areas of Employment, Estate Planning, Disability & Health Insurance: https://triagecancer.org/statelaws @CancerAndCareer
It's important to become familiar with laws in your state regarding work during cancer treatment. Often a nurse navigator or social worker in your hospital or treatment center can help with this info.
Patient Advocate Foundation can help patients and their insurers, employers and creditors resolve insurance and job retention issues. https://www.patientadvocate.org/

T5: After a cancer diagnosis, how do you handle applying for a new job? What are some guidelines for if, when and how much to disclose?What has been your experience?

There are many things to consider when deciding whether to disclose your #cancer history during the job search process. @cancerandcareer outlines things to think about as you approach each phase of job hunting: https://www.cancerandcareers.org/en/looking-for-work/job-search-disclosure/managing-disclosure-when-looking-for-a-job
Check out @cancerandcareer ’s FREE Resume Review Service for #cancer patients and survivors! Submit your resume and get personalized feedback from a professional career coach: https://www.cancerandcareers.org/resume_reviews/new

Remember you can join us on SmartPatients ( https://www.smartpatients.com/partners/gyncsm) and continue the conversation.

We will finish up the year with a chat on Pelvic Health After a Gyn Cancer Diagnosis. Join us on Wednesday, December 12, 2018 at 9pmET.

Happy Thanksgiving Everyone!