advcoacy – Strength in Community

Why a reliable car? Cost of cancer in Canada

The cost of cancer can be hidden in many ways.

One great advocate I know in Newfoundland and Labrador (Tracy Slaney) once said that they need a “reliable car” to help travel to and from St. John’s for treatment of his husband, Jim.

I keep thinking about this. Especially on snow days.

Not just a car. A reliable car.

A car that will take you to your destination safely.

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I have been reading the Canadian Cancer Statistic’s special report on the economic impact of cancer in Canada with a great interest.

While I am not directly doing research in economic impact of cancer, nevertheless, the challenges faced by patients and families – including the financial cost and barriers while receiving care and surviving beyond cancer – are very important for my advocacy and my understanding of the cancer experience.

Here are some of the key points I gathered from this report:

The authors say that they focused on estimates which are based on most commonly diagnosed cancers only. In addition, these estimates may vary among people affected, as well as by province and territory. In addition, not all costs are included, such as those because of psychosocial effects of cancer. Hence, these should be kept in mind while interpreting this information (that is, the average cost per person could be actually higher than these estimates)

Cancer is the leading cause of mortality in Canada. As such, cancer has a substantial cost to Canadian society – both through its cost associated with the healthcare system delivery and the cost shouldered by patients and caregivers

The estimated cost of cancer in Canada for 2024 is around $37.5 billion. This cost is expected to increase in the coming decade, mostly because more people are expected to be diagnosed with cancer and more people are expected to survive cancer

Almost 80% of this cost is shouldered by the healthcare system, while the remaining is shouldered by patients and caregivers. Cost of cancer differs among cancer types, with most common four cancer types claiming almost 50% of all costs (lung, breast, prostate, and colorectal cancers)

Economic cost of cancer per person has been increasing due to factors, such as rising cost of treatment and support services. The overall economic cost of cancer in Canada may have been increasing due to aging population (which increases the risk of cancer) and growing population (the higher the number of people living in Canada, the higher the number of people affected by cancer in Canada)

The cost of cancer for each patient is estimated to be around $33,000 and is likely to mostly happen in the first year following the cancer diagnosis. However, cost of cancer can continue after that time period

Healthcare system costs associated with cancer include those like physician and hospital services/cancer care, some prescription cancer drugs, radiotherapy, chemotherapy and so on. On the average, per patient amount shouldered by the healthcare system is 4 times that of what a patient shoulder ($33,000 x 4 = $132,000)

Cost of cancer shouldered by cancer patients and caregivers include various costs.

For example;

those cost that are directly related to receiving care (prescriptions, devices such as walking sticks and colostomy supplies, home care services, travel and accommodation related expenses, time needed for traveling to and from, or waiting for treatment, insurance payments & copayments)

lost income or opportunities due to sickness/sick leave or caregiving obligations are within the costs associated with cancer, however indirect they may be

psychosocial impact, such as quality of life related costs

7. There are some communities facing systematic barriers to access care and clinical trials, for example, those living in rural areas, low income families, and marginalized communities – these communities may be at increased risk of having cost of cancer. Of note, Atlantic Canada has a high proportion of its population living in rural areas (around 45%).

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So what do we do with this information?

It seems that cancer will continue to rule our lives.

Is there a chance that we can help prevent this?

The authors state that this information will help planning by both the healthcare leaders and families affected.

I agree.

I think we should also focus on additional solutions:

collecting more systematic cancer-related data to come up with more precise estimates; for example, I suspect the cost associated with cancer to be a bit higher in Atlantic Canada than the rest of Canada (because of higher portion of the population living in rural areas) and concentrated cancer clinics/hospitals in urban regions)

preventing and early detecting cancer

removing barriers to access to care and reliable health-related knowledge

increased support to low income families and at-risk communities

removing systematic barriers experienced by marginalized communities

setting regional equity for cancer drug access and clinical trials within Canada

better synchronized inter-provincial and territorial drug coverage

better provincial and territorial insurance plans

better public awareness about cancer, its impacts, and resources/support available to help prevent, early detect, and treat cancers

For better days ahead, we need to combine our hands, hearts, minds, and forces.

Please advocate for yourself and others to prevent, early detect, and treat cancer.

If one of us is helped, all of us are helped.

Let’s help each other.

Sevtap Savas, PhD. February 14, 2025, St. John’s

February 14, 2025February 14, 2025 by sevtapsavas Categories: BlogTags: advcoacy, better days ahead, Canada, Canadian Cancer Society, cancer, Cost of cancer, Economic impact of Cancer, Newfoundland and Labrador, NL, Public Engagement, Public Outreach, St. John's Leave a comment

Guest Blog: My story of surviving stomach cancer in Turkiye – PART III

Guest Blog 7 – PART III

By Mehtap Savaş

January 2025

Ankara, Turkiye

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This guest blog consists of seven parts – hyperlinks will be added as they are published in order:

PART I – INTRODUCTION (please see here)

PART II – LIFE WITH CANCER AND TREATMENT (please see here)

PART III – LIFE WITHOUT A STOMACH

PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)

PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS (please see here)

PART VI – CURRENT STATE & FINAL WORDS (please see here)

PART VII – SILENCE OF THE MOTHERS (please see here)

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PART III – LIFE WITHOUT A STOMACH

AFTER TREATMENT
After my treatment, my pain and fatigue continued for a long time, as seen in my photo. It took me a long time to feel good physically. It was not possible to fully return to the past anyway.

After the end of the treatment, I had monthly check-ups for a year. In the following years, we started check-ups every two months, then every three months, every six months, and then after 6 years, we started annual check-ups. After the twelfth year, I went back to 3-monthly check-ups all over again.

I want to start by saying that a lot happens. Since our digestive system loses its most important part, digestive and excretory problems begin. Not being able to drink water, difficulty swallowing, taking external supplements throughout life (because the food we eat needs to be processed in the stomach in order for the body to produce /absorb vitamin B12 and iron), bloating that sometimes starts with the first bite, not being able to vomit, gas problems, and completely eliminating some foods from your life.

Since there is no gastric valve (actually known as a valve, it is a condition that occurs when the muscles at the entrance and exit of the stomach are stretched), when you bend over for a long time, the food you eat or acid secretion comes into your mouth, and acid splashes cause great pain in your throat, especially at night. And most importantly, experiencing dumping syndrome is one of the first things that come to my mind.

And to patiently answer the question of where does the food you eat go if you don't have a stomach?

I would like to detail some of these to make them more understandable.

Dumping Syndrome: This is a very important syndrome we experience. The reason is that since we do not have a stomach, the food we eat passes directly into our small intestine, and since absorption begins immediately in the small intestine, if you eat something that will raise your blood sugar, your blood sugar will suddenly skyrocket.

The pancreas secretes insulin to lower high blood sugar, and this time your sugar drops too low, so you go into hypoglycemia. During hypoglycemia, my back feels like it's on fire, I start shaking and feeling extremely dizzy. To fix this situation, you need to raise your sugar again. You return to normal about 20 minutes after eating sugar.

Not being able to drink water: Since I don't have a stomach, when I drink water it goes straight down and causes pain. To avoid this, I have to drink it in small sips. Water is incredibly unpleasant when drunk this way. I was drinking fruit compote with very little sugar for fluid intake. Then I started drinking iced tea. At least it didn't require small sips since it had a taste. Even though I can now drink a few sips in a row, I still cannot drink water.

I'm not alone in this. There are many patients in my situation. One person said that he started drinking water after 15 years. I hope I can drink it too one day.

And I will be free from the pressure of people who constantly tell me why I need to drink water and say that I cannot live without water. I want to ask them. If you can't live without water, how have I been living for 15 years?

Difficulty swallowing: This is actually pretty detailed. In short: The muscles required for swallowing in the esophagus do not stretch, and the food you swallow remains stuck at the beginning, middle, and sometimes at the end of the esophagus. I sneeze repeatedly as a result of my body's reaction, especially if I swallowed quickly. People generally think that I sneeze because I am sick.

The worst thing is that the thing you swallow reaches your windpipe before it enters the esophagus and you are left breathless, trying to stay calm and expel what you ate, bloating, not being able to vomit (10 years later, I started vomiting by stretching my abdominal muscles), even after 15 years, it is more common than before.

Imagine experiencing the same symptoms repeatedly while eating something.

One day, while I was waiting in line for a CT scan at the hospital, an old lady sitting next to me said that she could only eat one apple the night before. I waited 8 years to eat an apple. I still can't eat an apple at once.

And those who force me to eat and eat sweets outside my immediate circle. This can be very overwhelming and actually shows that they are not really listening to me even though I have explained my situation over and over.

NEXT: PART IV – RETURN TO WORK & IMPACT OF CANCER

January 27, 2025February 24, 2025 by sevtapsavas Categories: BlogTags: advcoacy, Canada, cancer, gastric cancer, Lived Cancer Experience, Lived Experience, Newfoundland and Labrador, Public Engagement, Public Outreach, Stomach cancer, Turkiye 6 Comments

Proclamations submitted for The World Cancer Day 2025

The World Cancer Day is an opportunity for all us to remember, acknowledge, and honor those who are affected by cancer in and out of Newfoundland and Labrador.

The World Cancer Day will be celebrated on February 4th, 2025.

Late December, I submitted two requests within NL:

1 – Proclamation request with City of St. John’s,

2 – Building Lightening Request with the Confederation Building

I am pasting them here in download-able format in the hope that if any of you is interested in doing similar things but do not know how to start, they can give you an idea.

For proclamations with your city, please contact your city hall or do a google search. For St. John’s, see here: https://www.stjohns.ca/en/city-hall/proclamations-and-protocol-requests.aspx

The Confederation building lightening request form can be found here: https://www.gov.nl.ca/exec/files/3A-Confederation-Building-Lighting-Application-1-1.pdf

Better days ahead.

3A-Confederation-Building-Lighting-Application-1-1_WORLD-CANCER-DAY Download

City of St. John’s proclamation request:

Proclamation Template unsigned_Sevtap Savas Download

January 11, 2025February 4, 2025 by sevtapsavas Categories: BlogTags: advcoacy, Canada, cancer, City Hall, Confederation Building, Government of Newfoundland and Labrador, Newfoundland and Labrador, NL, Proclamations, Public Engagement, Public Outreach, St. John's, World Cancer Day Leave a comment

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Why a reliable car? Cost of cancer in Canada

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Guest Blog: My story of surviving stomach cancer in Turkiye – PART III

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Proclamations submitted for The World Cancer Day 2025

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