Friday, February 21, 2020

Rare Disease Day Feb 29, 2020



"Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases."


Did you know that many gynecologic cancers are considered rare diseases in the US  by the NIH's Office of Rare Diseases ResearchThey are:

Ovarian
Uterine, including Sarcomas
Endometrial,
Fallopian tube,
GTD (Gestational Trophoblastic Disease),
Vaginal 
Vulvar 

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org).  To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.



Dee

Wednesday, February 12, 2020

February 12, 2020 Cancer Pre-hab and Rehab

On Wednesday, February 12, 2020 the #gyncsm community welcomed Dr. Timothy Marshall (@MarshallTF_PhD), Acting Executive Director of the Kean University, School of Physical Therapy in New Jersey, for our discussion on Cancer Pre-hab and Rehab. Thirteen participants join us for this important discussion. You may find a link to our complete transcript via @Symplur here  and analytics may be found here


T1: What is cancer pre-habilitation? Is prehab important for those having surgery?

  • P1: Cancer prehabiltiation are interventions delivered after receiving a cancer diagnosis but before treatment begins #gyncsm
  • P2: One aim of prehabilitation is to establish baseline levels of function and identify preexisting impairments or limitations, such as limited shoulder range of motion, which could be a problem later on in treatment #gyncsm
  • P3: A second aim of prehbailitation is to improve a patient’s muscle strength and endurance, flexibility and cardiopulmonary health before treatment begins #gyncsm
  • P4: This may be accomplished through an individualized exercise plan with the goal of reducing the incidence and severity of treatment-related side effects #gyncsm
  • P5: Prehabilitation may be important for someone who is about to undergo surgery because strengthening the involved muscles before surgery may enable them to better tolerate the trauma of surgery and improve the recovery process #gyncsm
  • P6: Strengthening the heart and lungs before surgery may help the patient’s heart and lungs better tolerate the surgery’s anesthesia and reduce post-operative complications and reduction in length of stay in the hospital #gyncsm
  • Prehabilitation such as discontinuation of smoking improves overall surgical outcomes. #gyncsm

T2: What is cancer rehabilitation? What is impairment driven rehabilitation?

  • P1: Cancer Rehabilitation refers to services delivered by healthcare professionals to treat physical, emotional, & cognitive problems that developed during cancer treatment #gyncsm
  • And can be provided concurrently with cancer treatment to mitigate side effects/toxicity. This can improve tolerance to therapy. #GYNCSM
  • P2: The goal of cancer rehabilitation is to reduce treatment-related side effects and improve function to promote independence. Physical problems appropriate for cancer rehab may include, but not limited to, pain, swelling, weakness and loss of strength, decrease flexibility, decreased inductance, lymphedema, fatigue, balance issues, sexual dysfunction, problems swallowing #gyncsm
  • A1: Often patients with a new cancer diagnosis want surgery as soon as possible, but in some cases improving fitness will improve surgical outcomes without compromising oncologic outcomes #CancerPrehab #GYNCSM
  • P3: Mobility problems may include, but not limited to, difficulties getting out of a chair or bed, navigating steps, walking, getting dressed and showering #gyncsm
  • P4.:Cognitive & emotion problems may include difficulty multitasking, difficulty thinking clearly, memory trouble, depression, anxiety #gyncsm

T3: When is the right time to ask about cancer rehab and who should I ask? Will insurance pay for this service?

  • T3: As early as possible in the pre-op appointment process. Likely with surgeon and oncologist. I think knowing what post-op life will look like is helpful mentally, emotionally, and also enables better planning. #GYNCSM
  • T3. Thats absolutely right; as soon as possible! Ask you Oncologist, a nurse, or any other healthcare provider managing your care #gyncsm
  • Agree. And usually insurance will cover this service. Some of what is learned can carry over into other phases of the cancer continuum. #GYNCSM
  • T3: Cancer Rehabilitation services provided by licensed healthcare professionals are commonly covered by insurance #gyncsm
  • T3: Services provided by exercise physiologist, which usually consist of exercise programs aimed at improving cardiovascular and muscular health and function are often NOT covered #gyncsm
  • T3: Insurance coverage for prehabilitation is limited, spotty at best, because it aims to prevent issues than treat ones that exist, which does seem counterintuitive, but that is where we are right now #gyncsm

T4: Where are cancer pre-hab and rehab services offered? How would a patient go about finding these services in their community?

  • T4: I believe @livestrong also has some programs at local Y's. #gyncsm
  • This is a great question. Because prehabilitation services are siloed into different departments, you can rarely find them in one convenient place. #gyncsm
  • T4 some @CancerSupportHQ communities offer programs after treatment too. #gyncsm
  • T4 There are also programs like this Cancer Thriving and Surviving program, like this one in NJ 

T5: How is it determined which exercise/other rehab program is best for each patient?

  • T5: This can be the tricky part. While the American College of Sports Medicine published updated Cancer Exercise Guidelines in 2019, what remains missing are tools for screening and referring to the appropriate rehabilitative service #gyncsm
  • T5: Speaking as a patient, I hope the care team would consider ability levels and help the patient find what works for them. I believe medical professionals should stay up on exercise trends and have good, reliable information on them! #GYNCSM
  • T5: I am involved in two projects, led by @NicoleStoutPT and @kcrov to develop tools for clinicians and patients to guide individuals to safe end effective rehabilitation and exercise programs to optimize treatment related side effects & improved functio #gyncsm
  • T5: Here are ACSM Cancer Exercise Guidelines https://journals.lww.com/acsm-msse/Fulltext/2019/11000/Exercise_Guidelines_for_Cancer_Survivors_.23.aspx
  • T5: However, and generally speaking, if treatment-related symptoms are severe, impairments are presenting and function is limited making it difficult to participate in activities or daily living or exercise, rehabilitation services may be most appropriate #gyncsm
  • T5: Supervised exercise may more appropriate when treatment-related side effects and impairments are mild with minimal mobility issues and functional concerns; but, please check with your Oncologist or primary healthcare provider before engaging in any services #gyncsm



T6: Can a patient who may have finished treatment a year or more ago do any exercise/rehab to help with the side effects of treatment?

  • Yes! We’ve seen good results with pelvic floor physical therapy.
  • T6: Yes! I heard a doctor at @MDAndersonNews speak about exercise helping cancer related fatigue, even years after treatment. I’m sure more benefits can come from a exercise/PT plan post treatment! #GYNCSM 
  • Yes post treatment exercise interventions can help reduce the severity of post-treatment side effects and help regain strength/stamina/endurance that may have been reduced during treatment #gyncsm
  • What also should not be lost or overlooked is the power of exercise for improving emotional health ( i.e. reducing anxiety, feelings of depression, etc) #gyncsm

Thank you Dr Marshall for taking the time to prep,  participate and share such valuable information with our community. 

There will be no #gyncsm chat in March. Save the date for our next chat Wednesday April 8, 2020 at 9pm ET on “Communication With your Healthcare Team and Asking for supportive care”.

See you in April!

Dee
Co-founder #gyncsm


Resources

@Cancerdotnet https://www.cancer.net/survivorship/rehabilitation/what-expect-cancer-rehabilitation

@JulieSilverMD Cancer Prehabilitation and Rehabilitation in Cancer Survivorship  http://www.nationalacademies.org/hmd/~/media/Files/Activity%20Files/Disease/NCPF/2017-JUL-24/Silver.pdf

Exercise Guidelines for Cancer Survivors  https://journals.lww.com/acsm-msse/Fulltext/2019/11000/Exercise_Guidelines_for_Cancer_Survivors_.23.aspx

Relaxation Resources https://www.loyola.edu/department/counseling-center/students/relaxation

Friday, February 7, 2020

Cancer Pre-Habilitation and Rehabilitation


Many people are familiar with rehabilitation after orthopedic surgery, other types of surgery, or long hospitalizations. But recently there has been more talk about pre-habilitation and rehabilitation surrounding cancer surgery and treatment.

On Wednesday, February 12, 2020 at 9pm ET, the #gyncsm community is pleased to welcome Dr. Timothy Marshall (@MarshallTF_PhD), Acting Executive Director of the Kean University, School of Physical Therapy in New Jersey, for our discussion on cancer pre-hab and rehab. Dr. Marshall is the author of a number of articles including Consensus- Building Efforts to Identify Best Tools for Screening and Assessment for Supportive Services in OncologyJournal of Disability and Rehabilitation. 

After defining pre-habilitation and rehabilitation, we will discuss how programs for patients are developed as well as who to speak with about these services using the following topic questions:
  • T1: What is cancer pre-habilitation? Is prehab important for those having surgery?
  • T2: What is cancer rehabilitation? What is impairment driven rehabilitation? 
  • T3: When is the right time to ask about cancer rehab and who should I ask? Will insurance pay for this service?
  • T4: Where are cancer pre-hab and rehab services offered? How would a patient go about finding these services in their community?
  • T5: How is it determined which exercise program is best for each patient?
  • T6: Can a patient who may have finished treatment a year or more ago do any exercise to help with the side effects of treatment?  

We hope you will join us and Dr. Marshall for this month's chat.

Dee
#gyncsm Co-founder

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