Wednesday, 14 November 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?

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?


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!


Dee and Christina
#gyncsm Co-founders

RESOURCES

Cancer and Careers

Social Security Disability

Livestrong

Cancer Care

Triage Care
    @triagecancer’s  https://triagecancer.org/statelaws

Cure Today 
    Returning to work after cancer
https://www.curetoday.com/articles/returning-to-work-after-cancer-treatment

    Working Through Cancer-Related Fatigue
https://www.curetoday.com/publications/heal/2018/summer-2018/working-through-cancer-related-fatigue

Cancer Support Community 

Patient Advocate Foundation 

Friday, 9 November 2018

November 2018 Chat : Cancer and Careers


Updated 11/14/18
Over the past five years we have covered many different topics, but one area we have not touched upon is Cancer and Careers. We hope you will join the #gyncsm community on Wednesday, November 14, 2018 at 9pmET (8pmCT, 6pmPT) for this important topic.

Here are our topic questions for the chat.
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?

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?

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? 

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?

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?

The website Cancer and Careers includes helpful information on a number of these topics.

We look forward to having you join us on Wednesday November 14th!

See you then,

Dee and Christina

Wednesday, 10 October 2018

Managing Cancer Pain - Oct 10, 2018 Chat


We were pleased to have Ishwaria Subbiah MD, MS (@IshwariaMD), a palliative care and medical oncology physician from MD Anderson, join #gyncsm for tonight's Managing Cancer Pain chat. 

Eighteen patients/survivors and physicians participated in the chat. Below is a sample of the responses to the questions we asked during the chat. You may find a complete transcript here. Resources may be found at the end of this post.


T1: What are some of the causes of pain in cancer patients? How is cancer-related pain diagnosed?
  • We tend to think of cancer pain as acute (new or rapidly worsening pain) or chronic (not new). Acute is often bc of cancer itself (organ involvement eg liver; fracture; bowel perforation) or treatment (mouth sores, esophagitis, enteritis...). Chronic is neuropathy...
  • Approximately 25% to 50% of people w/ cancer complain of pain at time of dx, and up to 75% of people with cancer complain of pain as the cancer progresses. It can be caused by stage of Ca, even the tx type
  • Cancer-related pain is complex. Causes can include direct involvement of nerves, blockage of the bowels or constipation.
  • Cancer pain can come from various sources. It can come from the tumor pressing on bone, nerves or organs and sometimes pain comes from the treatment.
  • treatments cause pain too - surgery, radiation therapy, chemo,hormone therapy

T2: What pain medications are available for cancer patients? What is recommended?
  • Pain control can be achieved with narcotic meds, anti-inflammatory meds, anti-spasm meds, anti-seizure meds (for neuropathy)
  • After surgery, doctors are trying out pain management strategies using varying combinations of acetaminophen, ketorolac, gabapentin and other opioid alternatives.
  • NSAIDS, short acting opioids long acting Opiods and Methadone as per reading
  • Pain meds are opioids or non-opioids, which are muscle relaxants, NSAIDS, steroids, as well as antidepressants (SSRI/SNRIs/TCAs) and anticonvulsants both which help w nerve pain.
  • Combining pain medications can be synergistic - lower doses of multiple different types of drugs so that there are fewer side effects but improved pain control. Alternating NSAIDS with opioids for example.

T3: In addition to medications, what are some other ways to manage pain?
  • acupuncture, cognitive behavioral therapy, exercise
  • acupuncture, mindfulness based stress reduction, and spiritual
  • I've been writing about C.A.T.S. for years; complimentary & alternative treatment strategies for pain management. We don't always have to throw drugs at a problem as the only strategy
  • Yes! Cognitive-behavioral therapy has strong data to support its use in cancer pain management. Here are 2 of the important papers: https://t.co/Ot6OkmJelc CBT in breast ca #bcsmhttps://t.co/B9kCJcM5y4 in all cancers.
  • @CancerdotNet has a very helpful booklet. https://t.co/A5uadf2FVh

T4: How has the legislation regarding opioid use impacted the care of patients with cancer? What alternatives and guidelines are in place?
  • Article | New Strategy Almost Halves Opioid Use in Surgical Cancer Patients https://t.co/mWlewpd52j
  • For Opioids prescribers for adults, it’s7 days for children it’s 5 days
  • as a soon to be RN I’m concerned that regulations are making it too hard for cancer patients to get pain meds.
  • An inadvertent consequence though is that we may try to use opioid alternatives in addition to or instead of narcotics to improve pain control and also involve supportive care with pain control early - these are both good things!
  • Many states have exceptions to opioid prescribing guideline for cancer patients.
  • The CDC has this fact sheet on opiods https://t.co/sVCD63IvcN
  • The #opioid shortage was a very real issue earlier this year (& still is to a lesser extent). @AP picked up on this & spoke w many of us around the US who care for people w severe pain. #gyncsmUS hospitals grapple w prolonged injected opioid shortage https://t.co/nM1IKlyApG
  • Patients are so worried about becoming addicted - we try to hammer the fact that if you are taking #opiods appropriately for control of your pain- you will not become addicted! We don't want you to suffer


Bonus Topic: 
There is a pain scale used. Patients - do you find this an accurate way to describe your pain? Would you change anything about it?
  • grimacing
  • because we need more words and descriptions for pain levels. lol


  • The current one is OK for intensity but really doesn't describe the pain. #gyncsm is it Dull ache, stabbing, pins and needles etc
  • Absolutely - it is just one measure of a part of the pain and inadequate for all those additional details 

And a closing thought from :
Effective pain management requires a comprehensive approach; no one size fits all. Have the conversation w/ your care team and let that team listen w/ E.A.R.S (empathy, attentiveness, respect, & support). 

You may continue the discussion on Smart Patients at https://buff.ly/2yzFai6

See you next month on Wednesday Nov 14, 2018 for our chat on Cancer and Careers

Dee #gyncsm co-founder 



RESOURCES
Meta-analysis of psychosocial interventions to reduce pain in patients with cancer https://www.ncbi.nlm.nih.gov/pubmed?holding=mdacclib&term=22253460

Efficacy of Mindfulness-based Cognitive Therapy on Late Post Treatment Pain in Women Treated for Primary Breast Cancer : A Randomized Controlled Trial https://www.ncbi.nlm.nih.gov/pubmed?holding=mdacclib&term=27325850

@CancerDotNet ASCO Answers Managing Cancer-related Pain   https://www.cancer.net/sites/cancer.net/files/managing_pain_booklet.pdf

New Strategy Almost Halves Opioid Use in Surgical Cancer Patients 
https://www.medscape.com/viewarticle/902402?src=rss

CDC Fact Sheet on Opiods https://www.cdc.gov/drugoverdose/pdf/AHA-Patient-Opioid-Factsheet-a.pdf

US Hospitals Grapple with Prolonged Injected Opiod Shortage  https://apnews.com/6af21607e6ba4d03937c4d67f3c8b1b7

FDA’s Opioid Analgesic REMS Education Blueprint for Health Care Providers Involved in the Treatment and Monitoring of Patients with Pain
https://www.fda.gov/downloads/Drugs/DrugSafety/InformationbyDrugClass/UCM620249.pdf

MD Anderson Supportive Care Clinic visit assessment

PCORI Video   What are opiods?

ACS managing cancer pain at home
https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/pain/pain.html

Cancer pain relief is possible - Mayo Clinic





Friday, 5 October 2018

Oct. 10, 2018 Managing Cancer Pain



At various points in time during a gynecologic cancer patient's diagnosis, treatment and survivorship they may experience pain. Join us on Wednesday October 10, 2018 at 9pm ET (8pmCT / 6pmPT) as we discuss how to manage cancer-related pain. We will also discuss the impact of the opioid epidemic on cancer patients.

We'll use the following Topic Questions (T#:) to guide our discussion:
T1: What are some of the causes of pain in cancer patients? How is cancer-related pain diagnosed?
T2: What pain medications are available for cancer patients? What is recommended?
T3: In addition to medications, what are some other ways to manage pain?
T4: How has the legislation regarding opioid use impacted the care of patients with cancer? What alternatives and guidelines are in place? 
T5: Is controlling cancer pain different than controlling other types of pain - both chronic and acute?
Bonus Topic: There is a pain scale used. Patients - do you find this an accurate way to describe your pain? Would you change anything about it?
To learn more about how to take part in Tweet chats please visit these pages. 

We look forward to having you join us. 

Dee
#gyncsm Co-founder

Supplements / Vitamins Are they helpful? May 8, 2019 Chat

We were pleased to have Stacy Kennedy MPH,RD (@stacykennedyrd) join us for this informative chat on vitamins and supplements.  You may find ...