[Hopespringpcsg] FW: Your CCSN August 2020 Newsletter - Stay up to date and informed.

Fri Aug 14 14:51:09 EDT 2020

Hi all:

See  below for the CCSN e-newsletter.

Take care & stay well.

Glen

From: Canadian Cancer Survivor Network 
Sent: August 14, 2020 11:48 AM
To: glen46nor at gmail.com
Subject: Your CCSN August 2020 Newsletter - Stay up to date and informed.

 <https://mailchi.mp/survivornet/your-ccsn-may-2020-newsletter-stay-up-to-date-and-informed-1000370?e=2e211ff547> View this email in your browser

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Canadian Cancer Survivor Network 
August 2020 Update

A Balancing Act: COVID-19 and Cancer Care

Impact of COVID-19 and Cancer Care Disruption 

The decision to cancel elective surgeries in order to ensure that there would be enough beds in hospitals to deal with COVID patients has created a backlog that will be a challenge to overcome.  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=8ee017fd0d&e=2e211ff547> A global expert response study conducted in May estimated that the 12-week period of disruption to hospital services would result in the cancellation or postponement of 28.4 million elective surgeries globally. Additionally, 2.3 million cancer operations were projected to be delayed or postponed. 

Within Canada,  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=f1f2d33f01&e=2e211ff547> 394,576 elective surgeries were expected to be postponed, and as lockdown measures are reduced, provinces are laying out plans to manage the backlog. As some provinces were hit harder by COVID than others, there have been some notable differences in the plans released. The government of British Columbia has stated that they will need 17-24 months and  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=7ce550eb22&e=2e211ff547> $250 million to address the 30,000 surgeries that had been pushed back due to COVID. Similarly, Alberta estimates that they will need  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=e6b7f823c9&e=2e211ff547> two years to address their backlog. As yet, the Ontario government has not released any concrete plans for how they will manage the backlog or the timeframe.

Cancer patients have particularly suffered during the pandemic.  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=1fc4111c54&e=2e211ff547> Jasmine Yang, a 60-year-old woman in BC, died in April after her surgery for ovarian cancer was postponed. In Quebec, there is currently a backlog of  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=e57b3d9e46&e=2e211ff547> 24,000 oncology surgeries, and 30 percent of chemotherapy and radiotherapy sessions were still unavailable as of July 5. 

Screening and diagnostic services also slowed down significantly since mid-March, leaving many people anxious. In Ontario, the number of mammograms and pap tests performed in March decreased by  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=500b04d727&e=2e211ff547> 49 and 48 percent respectively compared to March 2019. There was also a drop in  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=64931c3806&e=2e211ff547> CT scans (24 percent) and MRI scans (26 percent) for cancer between March 15 and May 10 of this year compared to last year. The lack of urgency given to screening and diagnostic services may lead to more deaths due to cancer this year. 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c27ea5fdd7&e=2e211ff547> A national population-based modelling study in the UK which looked at delays in diagnostic services for breast, colorectal, oesophageal and lung cancer found that there could be “3,291–3,621 additional deaths across the scenarios within 5 years. The total additional [years of life lost] across these cancers is estimated to be 59,204–63,229 years.”

COVID-19 disruption of cancer care services has had and will continue to have life-threatening consequences for cancer patients, caregivers and those in the process of being diagnosed when screening and other tests were postponed or cancelled. 

But cancer can’t be postponed or cancelled. To save lives, cancer care and diagnosis must continue during any public health crisis. The Canadian Cancer Survivor Network calls upon governments across Canada to heed the experiences of those facing cancer and their caregivers during the COVID-19 pandemic by providing for the explicit inclusion of essential cancer diagnosis and care in all crisis and pandemic planning. 

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Cancer Screening Can't Stop 

The cancellation and postponement of cancer screenings because of the COVID-19 pandemic has caused anxiety and distress for a significant number of cancer patients, pre-diagnosis patients, and caregivers across Canada, according to a Leger poll conducted for the Canadian Cancer Survivor Network.

With screenings and tests delayed, cancer patients have been left in the dark about the state of their disease. Sasha, an Alberta lymphoma patient whose cancer is in remission, suspects that her cancer has recurred, but doesn't know for sure because her CAT scan was postponed. Her greatest concern, she wrote, is “that they will not be able to detect re-occurrence fast enough and it will have spread before I get to treatment.” For her and others in the same position, regular testing is the only way they know if they are still cancer-free.

It's not only current cancer patients who are worried – patients awaiting a potential cancer diagnosis have to deal with uncertainty for longer. “Having the doctors postpone and cancel my appointments and treatments makes me a bit worried,” said an Ontario pre-diagnosis patient, “because I'm scared it might spread during the time being without my noticing.”

Caregivers of cancer patients have also been distressed by the cancelled and postponed screenings – among those surveyed, even more so than patients.

One respondent who cares for a stage 3 colorectal cancer patient was very concerned about the rescheduled tests because, as she wrote, “when you are dealing with cancer, the sooner a problem is detected and can be acted upon, the chance for a positive/successful outcome is increased. Being successful with cancer depends upon timely action.”

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=9a568c541f&e=2e211ff547> Read More 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=ac0a136cbd&e=2e211ff547> 

Elective Surgeries are Still Essential 

CCSN’s survey shows clearly that the delays in elective surgery have taken a tremendous psychological toll on patients and caregivers. 

Anxiety about worsening outcomes and uncertainty about how quickly they can get care are top among the concerns of those surveyed. Of those who took part in the survey, 12 percent of patients and 23 percent of caregivers had a surgery or scheduled procedure for cancer cancelled or postponed.

‘Elective’ might sound like it means ‘optional’, but in fact, an elective surgery is simply any surgery that is scheduled in advance. Despite being medically necessary, elective surgeries can still be delayed because they are not considered urgent enough. Most cancer-related surgeries are elective.

“I was supposed to have surgery to remove my ovaries because I have a cyst and I also do not know if I have ovarian cancer,” said an Ontario stage 4 breast cancer patient. “This delay in elective surgery worries me.”

For some cancer patients, the short notice of the postponed surgeries, and the uncertainty as to when they will be rescheduled, sends the message that their cancer care is no longer considered important. “It's as if all health care other than COVID-19 has been put on the back burner,” says a stage four prostate cancer patient in Alberta. “All other health care patients are being sacrificed for COVID patients. I'm scheduled to have surgery for removal of a kidney stone, but that procedure has been postponed indefinitely.”

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=7bb6f766db&e=2e211ff547> Read More 

  <https://mcusercontent.com/318d4e052fdd9593317146113/images/535d64b0-8988-40cf-937b-70f7df3c5259.jpeg> 

Lung Cancer Patients Especially Vulnerable to COVID-19 

It's hard to think of a worse time to be a lung cancer patient than during a global pandemic. This situation provides many sources of anxiety: lung cancer patients are worried about being vulnerable to infection, about getting severely ill if they do get COVID-19, and about the potential for infection in places like hospitals.

About one third of lung cancer patients in CCSN’s survey expressed concern about getting COVID-19. Stage 4 patients and caregivers for them expressed these fears most often. “I worry that either I or my husband will get the COVID virus and because of his health, he might not survive,” wrote a British Columbia caregiver for her husband, who has multiple cancers, lung cancer among them. “All the worry, pain, time, effort to recover might be in vain if he gets sick with COVID.”

The worries of lung cancer patients and caregivers are founded in reality. Lung cancer patients who contract COVID-19 have been found to be more likely to have a more severe form of the disease, and more likely to die from it—compared to patients with other types of cancer as well as compared to the general population.

A  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=d87d7fa9c5&e=2e211ff547> study of 102 lung cancer patients diagnosed with COVID-19, published in June, found a similar result: of the patients studied, 25% died within the study period. Cancer-specific features did not seem to affect the severity of COVID-19, but other pre-existing characteristics did – such as smoking history and hypertension.

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=b538d96c5f&e=2e211ff547> Read More 

Missed Some of CCSN's Recent Webinars? 

  <https://mcusercontent.com/318d4e052fdd9593317146113/images/efc3d4b6-cb29-4c4a-b564-0651d8719cf7.png> 

No problem – here’s how to access them

Watch Now! CCSN July 15 Webinar with Marjut Huotari of Leger

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=8042667d50&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=40637a709f&e=2e211ff547> Slides Available Here.

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=de8d35bce2&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=3a5fb51bb0&e=2e211ff547> Slides Available Here. 

Subscribe to our  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=eba8473722&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=539c0183ee&e=2e211ff547> SlideShare. 

Agree that Cancer Can't Wait? 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=745f64188a&e=2e211ff547> Tell your Federal Member of Parliament

(Responsible for Pandemic Planning)

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=3cef8f38cb&e=2e211ff547> Tell your Provincial Representative
(Responsible for Healthcare)

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=5a8007a9a0&e=2e211ff547> Donate Now! 

Patients Say "Cancer Can't Wait" 

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We thank all the cancer patients, caregivers and survivors who took the time to complete our COVID-19 and Cancer Care Disruption in Canada Leger Poll as well as those who told CCSN about their thoughts and feelings about cancer care disruption during the COVID-19 pandemic. Here is some of what they told us.  

Cancer Can't Wait!

It’s extremely anxiety provoking, and you realize how decisions are being made to focus resources and attention on one viral outbreak at the expense of everything else, including life-saving cancer surgery and treatment, and you have to wonder about which of the two are more pressing and urgent for the medical community to focus on. My greatest fear has been if there were any complications, where would I go to seek help? A breast, kidney and pancreatic cancer patient from Ontario. 

Cancer Can't Wait!

My principal cancer is lymphoma, which is in remission.  I have also had skin cancer which has been successfully treated surgically in an outpatient setting.  I am exasperated at having a colonoscopy postponed to rule out rectal/colon cancer and to try to determine why my iron count is perpetually low.  Not only was the colonoscopy cancelled, the doctor was close to retirement, closed his practice, and forced me to the bottom of the waiting list. A lymphoma survivor from Alberta. 

Cancer Can't Wait!

It's already hard to manage the anxiety that comes with cancer, but not knowing when you'll be able to follow-up with your doctor amplifies that. Although telephone appointments are safer than exposing us to covid-19, they are not very effective for communicating symptoms and examining changes to health. Tia Julien, Stage 1 thyroid cancer survivor from Ontario. 

Cancer Can't Wait!

I'm worried about being in the hospital for the amount of time needed to get everything done as I live in the bush and a number of hours away from where I need to go for cancer doctor and neurosurgeon appointments. I try to do everything in one day as I don't drive. A Stage 4 breast cancer patient living in rural British Columbia. 

Cancer Can't Wait!

I'm a mess!!! Not knowing is driving me insane. I can't think straight, I don't sleep, I don't eat... I feel like so many of us have are waiting for results and many more of us still need to have tests done... so my biggest fear is that the backlog of tests will result in much more waiting time and a lot of mistakes. A person in Ontario who has had tests required for a possible diagnosis of cancer postponed 

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Cancer Can't Wait!

I find phone conversations difficult, video call better but not optimal. I very much miss in-person appointments, body language - reading between the lines is so important. Additionally, I find the follow-up by the doctors not timely due to COVID and the additional responsibilities the pandemic has created. A Stage 4 colon and rectal and liver cancer patient from Ontario. 

Cancer Can't Wait!

I have already experienced bladder cancer. I had high grade tumours removed, several BCG treatments, and now annual scopes in bladder.  Surgery to remove growth on left ovary had been scheduled on April 16, but was cancelled.  Having bladder issues now, urologist’s office closed, advised to go to hospital ER. I am afraid of COVID19 in hospital setting. A bladder cancer survivor from Ontario. 

Cancer Can't Wait!

I worry that I have not been seen and have not had physical examinations and other tests, such as ultrasounds and blood work, done to ensure that my cancer has not come back since completing cancer treatment in January 2020! Follow up care is left to family doctors and it’s worrisome anyway, after discharge from the cancer center and cancer specialists. COVID-19 has curtailed the little follow up that might have occurred. It leaves a patient feeling left out there with no one doing any follow up!!! A breast cancer survivor from British Columbia. 

Cancer Can't Wait!

My husband has multiple myeloma and I finally insisted on seeing the oncologists last week. He is doing very poorly, and was actually taken off chemo for a month after we met face-to-face. I have been telling them by phone, how can you help us if you don't see him? How is a conversation on the phone going to help? My doctor who has treated me for thyroid cancer cancelled my appointment last April. I am not that concerned as I had surgery to remove my thyroid and had radiation – so far everything is ok – I hope! A breast cancer, colon cancer and rectal cancer survivor most recently diagnosed with thyroid cancer, and her husband who was diagnosed with multiple myeloma, from British Columbia. 

Cancer Can't Wait!

There is a lack of clinical trials available to me now that my condition has stabilized.  I am also upset that I cannot travel to see friends, family, do bucket list things at this time that I am feeling relatively well, and that my condition will worsen/I will die before there is a vaccine. A Stage 4 breast cancer patient from Ontario. 

Cancer Can't Wait!

With one year since my radiation treatments, I'm very concerned about the possibility of my cancer returning. I was diagnosed and treated for a rare, aggressive form of anal cancer and received 28 radiation treatments. Now I cannot have a physical check to see if the tumour is coming back. A cervical and anal cancer survivor from Quebec. 

Cancer Can't Wait!

My biggest fear is reaching a point where I could not look after myself. I have no family near and live alone. Would any PSWs or nurses be available to look after me? Also, trying to clean and look after my condo by myself was stressful in case I broke a bone.  Fortunately, I have been OK, and have been isolating. But any outings are very stressful, and at first I had to rely on friends shopping for me before the curbside pick-up became more reliable.  Basically, I'm living the way I thought I'd be living as my disease progresses - at home, and isolated. A Stage 4 breast cancer patient with bone metastases, from Ontario. 

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Cancer Can't Wait!

I have felt isolated and confused. It is very hard not to feel anxious and depressed after just going through chemo for my third diagnosis. When my CT was cancelled, I was in shock and very upset. I also have tissue expanders in place but the surgery to complete the procedure has been cancelled with zero contact from the surgeon. I am still on long-term disability, feeling like I have to justify everything to the Insurance company. A breast and neuroendocrine cancer patient from Ontario. 

Cancer Can't Wait!

I am a survivor of a very aggressive form of breast cancer with a high rate of reoccurrence, which was detected at stage three by a screening mammogram.  Annual mammograms are the only assessment tool used to help determine that I continue to be cancer free.  When my annual assessment appointment was cancelled, I became very anxious about my risk and the length of time before the mammogram would be rescheduled.  There is a very low incidence of Covid 19 in my community so the reduction of cancer treatment and screening seemed not to be proportionate with the risk of cancer progression.  A Stage 3 breast cancer survivor from Ontario. 

Cancer Can't Wait!

I have to know more related medical terms than before to take care of my family member when no info directly from professional experts. When something happened we may not get the responds as soon as possible like before. Delay is becoming a big concern. A caregiver for a Stage 2 breast cancer patient from Ontario.

Cancer Can't Wait!

I understand the reasoning behind postponing any treatment, and I have accepted this. With any luck, I will be able to have things accomplished soon. I was concerned that the pandemic would last for an extended period of time, preventing me from having the last bit of surgery. To date, I have not had a scheduled procedure done, and I am getting frustrated about the length of time it’s taking. But I also understand the reasons. A Stage 3 kidney, liver and prostate cancer patient from British Columbia.

Cancer Can't Wait!

I am usually a positive person and try not to dwell on matters that I can’t control. However, anxiety over not seeing my doctor is increasing. My greatest concern is that the cancer spreading. A Stage 1 melanoma patient from Alberta.

Cancer Can't Wait!

I am still waiting to find out what is going on. I have made many calls and left messages, but no call backs. My family doctor says not to worry. He or the other doctor do not have cancer, but I do! Am I safe, not from covid19 but cancer? A Stage 3 bladder, colon and rectal cancer survivor from Ontario.

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