[Hopespringpcsg] FW: Your CCSN September 2020 Newsletter

Tue Sep 8 14:29:57 EDT 2020

Hi all:

See below for the CCSN e-newsletter.

Take care & stay well.

Glen

From: Canadian Cancer Survivor Network 
Sent: September 8, 2020 11:19 AM
To: glen46nor at gmail.com
Subject: Your CCSN September 2020 Newsletter

 <https://mailchi.mp/survivornet/your-ccsn-may-2020-newsletter-stay-up-to-date-and-informed-1000378?e=2e211ff547> View this email in your browser

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Canadian Cancer Survivor Network 
September 2020 Update

Cancer Still Waiting... 

If you think that COVID-19's disruption of cancer care is nearly over, think again!

CCSN’s recent Leger survey of 1,243 Canadians revealed that the response to the COVID-19 pandemic has led to a crisis in essential cancer care across the country. Cancer patients, their caregivers and those awaiting confirmation of a cancer diagnosis faced and still face postponed and cancelled appointments, tests and treatment, causing heightened fears and anxiety even as pandemic restrictions are lifted.

Safe and timely access to cancer care, including diagnostics, screening, testing and treatment must remain a top priority during any public health crisis. Unfortunately, this has not happened, and the results are starting to show. 

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Nova Scotia’s Health Authority has stated that they have a  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=5f7cb5ec83&e=2e211ff547> backlog of 700 colon cancer cases and that they have temporarily suspended mailing out home screening kits. However, the Health Authority stopped mailing out colon cancer home screening kits in March due to the pandemic, and even now it is only conducting about 50% capacity for colonoscopies. How is temporarily suspending the home screening kits going to help ensure that colon cancer is diagnosed early in Nova Scotians? Clearly, it’s not. When the kits finally reach people, some of them are going to be diagnosed at a later rather than earlier stage of cancer, which defeats the purpose of the kits. With  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=8fd77ff1f7&e=2e211ff547> “colorectal cancer being the third most commonly diagnosed cancer in 2020…the second leading cause of death from cancer in men and the third leading cause of death from cancer in women, Nova Scotia should do better. 

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Colon Cancer Home Screening Kit | Courtesy of NS Health 

And in British Columbia, a CBC article published on July 21, 2020 states that  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=a6a9dfdf10&e=2e211ff547> “more than 32,400 people either had their surgeries postponed or not scheduled at all after non-essential procedures were cancelled on March 16, in order to free up hospital beds in case there was a rush of COVID-19 patients…Those patients left waiting either joined or remained on a pre-existing wait-list, bringing the total number of people waiting for surgery in B.C. to 93,000.

Ontario is no better. An early-released Canadian Medical Association Journal (CMAJ) report entitled  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=b3b289c858&e=2e211ff547> Clearing the surgical backlog caused by COVID-19 in Ontario: a time series modelling study found that “Between Mar. 15 and June 13, 2020, the estimated backlog in Ontario was 148,364 surgeries… [the] estimated backlog clearance time is 84 weeks...” The authors of this study go on to say that “The magnitude of the surgical backlog from COVID-19 raises serious implications for the recovery phase in Ontario.” 84 weeks is approximately one year and six months. 

BUT CANCER CAN’T BE CANCELLED OR POSTPONED, AND NEITHER CAN CANCER DIAGNOSIS AND TREATMENT!

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=177bda8813&e=2e211ff547> Read More 

Challenges of Virtual Appointments for Cancer Patients during the Pandemic 

Before COVID-19, seeing a doctor or specialist generally meant seeing them in person. Now, it typically means talking to them on the phone, or perhaps over a video call. Although most cancer patients and caregivers are okay with alternative means of contact, some have found them inadequate, according to a survey recently conducted for the Canadian Cancer Survivor Network by Leger between May 22 and June 10. Some are concerned about the lack of physical examinations, while others find phone or video interactions to be a less reassuring or less effective way of communicating.

Most survey respondents who interacted with a health care provider during the COVID-19 pandemic did so over the phone. A smaller percentage saw a health care provider in person – between 30 and 40 percent, depending on the kind of physician. Fewer still had appointments over video call or communicated by email, instant messaging, or text message. Phone calling has the advantage of simplicity, reliability, and familiarity, especially for older people who may not be comfortable with the software or may not even have a device capable of video calls. 

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Despite the convenience of phone calls, many survey respondents expressed anxiety around not being able to see their doctor in person. A patient, with stage 1 thyroid cancer, finds that telephone conversations, although safer, “are not very effective for communicating symptoms and examining changes to health.” Fewer patients have been in contact with their healthcare providers primarily by email. “I really miss the personal contacts with my oncologist,” wrote a British Columbia lymphoma patient. “Things come up in a conversation which are helpful and calming. I have not seen [my doctor] in four to five months and just communicate by email.  I feel a bit ‘in the dark’.” 

Other patients point out that there is sometimes no substitute for having a doctor look at your body with their own eyes. Some are anxious that things that would have been caught by a physical examination have been missed in phone or virtual appointments – signs that an active cancer is getting worse, or that a cancer in remission is starting to recur. 

“I had a virtual appointment with my radiation oncologist. This heightened my anxiety as I was not able to have a physical exam. As the days pass, I experience anxiety close to panic attacks at times thinking I may have a recurrence that has been missed because of the virtual appointment. … Pre-COVID I felt that I had much better care.”

- Hilde, an Ontario anal cancer patient in remission

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=1ca72a31e0&e=2e211ff547> Read More 

Upcoming Webinars 

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CCSN has collaborated with Ryan Clarke, president and founder of Advocacy Solutions, to create three webinars to aid cancer patients, survivors, and caregivers in their efforts to engage policy makers. Registration is now open for the webinar Advocacy Overview: Shaping the Advocacy Agenda.  

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=82c20ea554&e=2e211ff547> Register Now 

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CCSN is pleased to announce a new webinar series on psychosocial issues affecting cancer patients with Dr. Rob Rutledge! The series will run on alternate Wednesday's at 12 PM EST starting on September 16th and ending on  December 16th.

CCSN's Remarkable Cancer Survivor’s Guide to:

1.	Healing and Recovery - Sept. 16th
2.	Getting the Best from the Medical System - Sept. 30th
3.	Empowering the Body - Oct. 14th
4.	Nutrition - Oct. 28th
5.	Stress & Resilience - Nov. 11th
6.	Emotional Alchemy - Nov. 25th
7.	Integrating Spirituality - Dec. 9th
8.	The Attributes of Remarkable Cancer Survivors - Dec. 16th

Please register for each individual webinar you would like to attend! We will upload recordings of each webinar the following day in case you are unable to join us.  

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=adb9622aa0&e=2e211ff547> Register Now 

IN THIS ISSUE:  

*	Cancer Still Waiting...
*	Challenges of Virtual Appointments for Cancer Patients during the Pandemic 
*	CCSN Fall Webinar Series
*	Zoom Webinar Series on Psychosocial Issues
*	Call for New Advisory Council Members
*	Share Your Story with CCSN
*	Olaparib (Lynparza) Survey for Prostate Cancer Patients & Caregivers
*	New Brunswick Election

Call for New Advisory Council Members! 

At CCSN, we rely on the input of cancer patients, survivors, caregivers, and family members to drive our programming. One of the primary ways that we collaborate with community members is through our advisory councils. Members of our advisory councils assist with the creation of educational materials, help publicize events, and represent CCSN at conferences. We are currently looking for new members of our advisory councils for the following areas: prostate, lung, and breast cancer. If you are interested in joining please read the  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=5b78e60199&e=2e211ff547> terms of reference and then fill out the form below. Any questions about joining our advisory councils should be sent to our Community Engagement Coordinator, Layla, at 
 <mailto:changecancer at survivornet.ca> changecancer at survivornet.ca.  

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=a91e306f62&e=2e211ff547> Advisory Council Application 

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Share Your Cancer Story
with CCSN 

Your patient, caregiver or family cancer experiences may be able to help someone currently facing a diagnosis.

If you are willing to share your story, please send an email to Layla at  <mailto:changecancer at survivornet.ca> changecancer at survivornet.ca.   

CCSN Survey for Prostate Cancer Patients & Caregivers 

CCSN is conducting a survey for a new medication for metastatic castration-resistant prostate cancer (mCRPC) called Olaparib (Lynparza) to prepare a submission for the pan-Canadian Oncology Drug Review (pCODR). At this time we are primarily looking for patients with metastatic castration-resistant prostate cancer and their caregivers. If you are a patient or caregiver who falls outside of this specification, but feel that this treatment could be beneficial, we would still like to hear from you. Please complete the appropriate survey below by September 30th.  

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=00249d4d8c&e=2e211ff547> Survey for mCRPC Patients 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=78d8bc6940&e=2e211ff547> Survey for mCRPC Caregivers 

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Missed our Recent Webinars? 

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No problem – here’s how to access them

Catch Up Now! CCSN July 15 Webinar: COVID-19 Survey Results with Marjut Huotari of Leger

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=425c9a3367&e=2e211ff547> 

Join CCSN and Marjut Huotari, VP-Healthcare Insights at Leger, as we present the results of the COVID-19 and Cancer Care Disruption in Canada Survey and hear from members of the cancer community about how the pandemic has directly impacted them. 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c372e95228&e=2e211ff547> Slides Available Here.

Catch Up Now! CCSN July 16 Webinar: Canada's Drug Pricing Rules with Wayne Critchley of Global Public Affairs and Ryan Clarke of Advocacy Solutions 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=f1048dca8d&e=2e211ff547> 

Join CCSN and our presenters, Wayne Critchley from Global Public Affairs and Ryan Clarke from Advocacy Solutions. They will discuss the impact of changes to Canada's Patented Medicine Prices Review Board (PMPRB) on cancer patients and provide guidance on how to support the cancer community's engagement at this stage of regulatory reform.

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=e437cab920&e=2e211ff547> Slides Available Here. 

Subscribe to our  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=e0e44f43aa&e=2e211ff547> YouTube channel to make sure you never miss a CCSN webinar!
You can also access the slides on  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=5acd74d9f2&e=2e211ff547> SlideShare. 

Provincial Election
New Brunswick 

The New Brunswick provincial Election will be taking place on Monday, September 14th, 2020. During elections, CCSN prepares questions related to cancer care in order to inform the public on where politicians stand. In the midst of a global pandemic, it is imperative that healthcare, and more specifically cancer care, remains a priority. CCSN has asked candidates the following question: If elected, how will your government provide the explicit inclusion of essential cancer care in a second or third wave of COVID-19 and in all crisis and pandemic planning in the future? We will be updating our website as we receive responses from parties and their candidates, which you can find  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=93e6e44bcf&e=2e211ff547> here. To find information on where/when to vote, visit the  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c3c0852741&e=2e211ff547> New Brunswick provincial government website.  

Agree that Cancer Can't Wait? 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=3abcf83917&e=2e211ff547> Tell your Federal Member of Parliament

(Responsible for Pandemic Planning)

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=020d08e8be&e=2e211ff547> Tell your Provincial Representative
(Responsible for Healthcare)

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Because awareness is costly but necessary. Because Cancer can't wait...

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c83c808f82&e=2e211ff547> Donate Now! 

Connect with us on:

Twitter
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=7ae97710ff&e=2e211ff547> @survivornetca <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=16af23ffc5&e=2e211ff547>  - our main twitter account of information, news and resources on all cancers
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=a4a0c551ac&e=2e211ff547> @bestbreastnews - information on breast health and breast cancer
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c6af73e982&e=2e211ff547> @prostatepost - news, events and resources on prostate cancer
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=b53aa946b5&e=2e211ff547> @canadianmeso - details on asbestos and mesothelioma
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=bec1d5ecab&e=2e211ff547> @LungCancerCan - focuses on lung cancer news, events and awareness
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=a744efd623&e=2e211ff547> @CCSNpoli - general, non-partisan talk about the politics of healthcare and cancer care
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c216ff0ca2&e=2e211ff547> @MedMarijuanaCan <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=33b607bdfd&e=2e211ff547>  - news and information regarding medical marijuana
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=40944c888d&e=2e211ff547> @stomachcancerca - resources and articles on stomach cancer 
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c463fdd0ec&e=2e211ff547> @cervicalcanca - information and news on cervical cancer and HPV
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=a445786508&e=2e211ff547> @melanomacan - information and resources on melanoma
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=f4b1801486&e=2e211ff547> @LiverCancerCA – news and information on liver cancer
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c15c9934b1&e=2e211ff547> @headandneckcan - everything you need to know about head and neck cancer

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Our mailing address is:
Canadian Cancer Survivor Network
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