Advocacy

Joanne Hulley – Stage IV Colorectal Cancer Patient Testimonial

Joanne Hulley – Stage IV Colorectal Cancer Patient Testimonial

P6300319 Hello, I am a colorectal cancer patient with metastatic disease. I was diagnosed just over 4 years ago and had emergency surgery of the large bowel. Since that first surgery, I have had 5 more, plus countless chemotherapy sessions. I came across the Colorectal Cancer Association of Canada’s CCRAN support group meetings that are held in Oakville, 100 km away from my home, 3 years ago. Since then I have attended on a regular basis.

I do believe that I have an important role to play in my treatment. I make sure I have a healthy life style and I rely on CCRAN to provide another dimension to my healing journey.

At our monthly meetings, the chair shares recent developments in advances in treatment from around the world. It is important to know that these are published scientific notes and include developments in drug therapy as well as other interventions. Guest speakers, usually researchers from teaching hospitals, are invited to share developments in their area of expertise and newer options for treatment. I am so pleased to see that some of our members have benefitted from these innovative procedures. It gives me great hope and I anticipate being able to consult with specialists with a unique outlook.

In addition to research presentations, the group shares coping strategies and updates on their treatments. We encourage each other with our shared experiences.

Besides the benefits of group support, I believe the Colorectal Cancer Association of Canada has two important roles to play:

First in making more people aware of the need to early screening for colorectal cancer. Early intervention leads to better outcomes and usually a cure.

Secondly, I believe it helps us nudge the medical community into looking outside the box. Without patients pushing some boundaries, in a gentle and tactful way, I don’t believe we would see the same level of progress in development of new treatment options.

Keep up the valuable work!

Joanne Hulley

CCAC Upcoming Event – 2nd Annual Bum Run

CCAC Upcoming Event – 2nd Annual Bum Run

logo On Sunday, April 24, 2016 at 8:00 a.m. the Colorectal Cancer Association of Canada (CCAC) will be once again taking part in its second annual BUM RUN, a 5 km walk/run event to raise awareness of colorectal cancer – which is the second leading cause of cancer death in Canada. BUM RUN was founded by Dr. Ian Bookman, a gastroenterologist in Toronto who shares the CCAC’s passion of raising awareness of colorectal cancer screening. This event is intended for all ages and fitness levels, so it’s a great opportunity to plan a family day or a group of friends, while raising much needed funds for the CCAC.

This is the second year that the CCAC will be participating in the event and benefiting from the proceeds raised at the event. Hence, we truly need everyone’s help to make this a significant fundraising initiative for us in the Toronto area. The funds raised will hopefully go towards our patient support programs in Canada and will go a long way in helping to support patients and caregivers. Our support programs are critically important to patients and caregivers and I must say, to me as well, and it is my fervent desire to continue to provide these programs to those afflicted with this insidious disease. But we need everyone’s support to be able to do so by participating in events such as BUM RUN.

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This run is for Marie Taurasi:
She’s behind the Colorectal Cancer Association of Canada!

“This is not an “old person’s disease.” If you are having any types of symptoms – go and have yourself checked. This is what saved me – a colonoscopy.” said Marie Taurasi

Marie was diagnosed with Colorectal Cancer on January 19, 2015. She had a temporary ileostomy put in on February 6, 2015, and is now undergoing chemotherapy and radiation treatments. Marie is grateful for the help and support of the Colorectal Association of Canada for educating and guiding her through this journey.

How to participate in BUM RUN – Two ways:

1. Participate in BUM RUN by actually walking or running on April 24th. Please register for the event by following some simple instructions that appear below. Event facilitators have made the registration process so easy this year. After registering, you can then contact everyone you know to urge them to pledge a donation on your personal fundraising page. When you contact people to pledge in your name, the easiest way is to provide them with the link to your personal homepage. It is important that they select the Colorectal Cancer Association of Canada when they are asked to select the charity to donate to. By way of example, below is the link to my personal homepage to give you an idea of how you might want to set up your own homepage:

https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=3229824&langPref=en-CA

2. OR, if you are not able to walk or run in the actual event because you live in Montreal, perhaps you can support me by pledging to my fundraising page. Any amount is truly appreciated! Just click on the link above and it will take you directly to my fundraising page where a donation can be made. This is another way in which you can be a part of BUM RUN!
This will be a highly visible event, starting at Queen’s Park Circle. The event is organized with the cooperation of the City of Toronto, local City Councilors and the Sergeant of Arms of the Legislative Assembly of Ontario. I will be there and it is my sincere hope that everyone I know will be there too supporting this huge cause on the 24th of April. Should you have any questions or concerns, don’t hesitate to contact me for I am happy to help. This is truly a wonderful event that promises to garner much attention and more importantly will promote awareness and education of a disease that robs too many families of their loved ones. The funds raised will allow us to continue to do the good work we do on a daily basis. So let’s get registered shall we, secure those pledges and show up on the 24th of April to do our part for those who can’t!

How to Register as a Participant for BUM RUN 2016

1. Go to: http://bumrun.com/ and press the blue REGISTER tab in the top right hand corner
2. Register by clicking on “SIGN UP” in the left hand column
3. On the next page, press the blue “CREATE NEW ACCOUNT” button or you can also register using your Facebook account with the “Log in with Facebook” button on the right.
4. You then select the event/city you are registering for (there is only one choice “Toronto, ON”). You then select “Colorectal Cancer Association of Canada” from the list of charities.
5. Read the waiver then check off “I accept the waiver”
6. The next page asks whether you want to register as an individual, join a team or create a team. Most of you will probably register as an individual, however, forming a team can be an opportunity to participate with friends and family.
7. You then continue to provide your contact information and credit card information.
8. You will then be prompted to create your fundraising page. We urge you to personalize your page as much as possible.

***When you contact people to pledge in your name, the easiest way is to provide them with the link to your personal homepage. You can also send e-mails directly from your fundraising page and they will automatically be given the link to donate.

Canadians still not connecting lifestyle and cancer prevention, study suggests

Canadians still not connecting lifestyle and cancer prevention, study suggests

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While Canadians’ are becoming more and more health conscious, many are still not making the connection between healthy eating and the potential prevention of certain cancers, a recent IPSOS conducted for the Colorectal Cancer Association of Canada (CCAC) and Dairy Farmers of Canada (DFC) study has found. Colorectal Cancer Awareness Month made be behind us but we still need to create opportunities to discuss prevention tactics for the second deadliest type of cancer.

DID YOU KNOW:
Colorectal cancer is the number one cancer that can be prevented through maintaining a healthy diet. There are a multitude of ways to maintain a healthy lifestyle and ensure an adequate nutritional intake, including using the Get Enough Helper App. This story would include a recipe.

According to Ipsos survey results, lifestyle habits are perceived to make up 38% of the general factor share that lead to risk in developing colorectal cancer. Of that 38%, only 27% is attributed to diet. This low perception of the impact that diet has on developing colorectal cancer is something that should be highlighted, with offering the solution of increasing milk product consumption.

The collaboration between the CCAC and the DFC hopes to build awareness and increase the health of all Canadians by making sure they are “Getting Enough” of what they need. “Using Get Enough Helper app as a nutrition tracker easily helps you identify which foods you may be missing out on,” says Nathalie Savoie, RD, Dairy Farmers of Canada. “Additionally, you will have access to customized recipes that will help ensure you are consuming a balanced diet and the recommended 2-3 servings of Milk and Alternatives, such as yogurt and cheese, every day.”

What’s more, for every day you use the app, the DFC makes a $1 donation to the CCAC. Download yours today getenough.ca/app

CCAC’s Original Survivor Story of a Remarkable Man – Barry Stein, Founder & President

CCAC’s Original Survivor Story of a Remarkable Man – Barry Stein, Founder & President

barry My name is Barry Stein and this is my cancer survivor story. I was diagnosed with stage IV metastatic colon cancer in 1995. Few of us cancer survivors can forget how we felt when we were first diagnosed with cancer. I remember how I felt as if it was yesterday. I was flattened by the news. I experienced a rush of emotions and suddenly began to panic. I broke out into a sweat. I felt bombarded by information, dished out faster than I could absorb it.

I felt anger, and I felt sorry for myself. I wondered why this was happening to me, and if I would ever see my young family grow up. I tried to digest the fact that my life was suddenly threatened by a disease that came upon me silently, without any symptoms. The doctors must have it wrong, I thought. I feel absolutely normal. Surely they’ve made a mistake.

I knew very little, if anything, about cancer, but I had some preconceptions – I associated the word cancer with death. Still, when my doctor told me that the cancer had spread from my colon to my liver and that I had a thirty percent chance of surviving five years, I could not accept it. I knew I had to fight. I wanted to do everything possible to improve my situation, but I had no experience and I understood very little of the information given to me. I was determined to do as much research as I could so that I would be able to make informed decisions about my treatment. If I was more aware of the disease and had been screened for colon cancer in time, I could have avoided years of treatment and surgery and lots of pain and suffering for myself and for my family. Fortunately, things turned out just fine after a lot of hard work and some pretty scary moments and the bonus is we have seen all our three wonderful children married to great spouses and we now have two beautiful grandchildren!

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My determination proved to be a very important first step in my cancer journey. Whatever emotion you may feel after a diagnosis of cancer, chances are that you will eventually face the reality of the situation and decide how you are going to fight. I now know that colorectal cancer is preventable, treatable and beatable. That’s why I have devoted my life since 1995 to making others aware of the disease, supporting patients and their families and working hard across Canada both for the implementation of screening programs, as well as equal and timely access to effective treatments to improve patient outcomes. I am the president of the Colorectal Cancer Association of Canada, and we are here to spread awareness about the important of getting screened for colorectal cancer.

It doesn’t have to been a death sentence. We can make a difference together. Support us to support you!

March Awareness Month Comes to a Close – Words From Ministers Around the Country

March Awareness Month Comes to a Close – Words From Ministers Around the Country

As March awareness month comes to a close, we would like to reflect upon our reach and the impact these campaigns have on the lives of Canadians throughout the country. More than ever this year, the international and national community has come together to bring more awareness to colorectal cancer everywhere. We thank all of our supporters/followers for helping to spread the word and hope that you will continue to do – There is still work to be done. Continue to follow us and the social media platforms of our partners: N2Y & Foods That Fight. And continue to share, not only our content but also that of your own. Please send us private messages on any news stories that you have or survivor stories of your own. You are not alone, WE are in this fight together and will one day be able proudly say that WE BEAT THIS DISEASE TOGETHER!

INFOGRAPHIC Ministers of Health 2016 FINAL

No Shame Here: Study finds only one in four Canadians embarrassed  about colorectal cancer screening

No Shame Here: Study finds only one in four Canadians embarrassed about colorectal cancer screening

Getenough Despite Canadians’ reputation for being culturally conservative — even reserved compared to other nationalities — a new survey by Ipsos conducted for the Colorectal Cancer Association of Canada and Dairy Farmers of Canada has found that one in four Canadians would find the screening process for specific cancers embarrassing. With March being Colorectal Cancer Awareness Month, it is the perfect time to address the importance of getting screened regularly, as 90 per cent of colorectal cancer cases can be cured when detected at an early stage. Screening is particularly crucial if you are over the age of 50 – earlier if you have a family history or other risk factors. Prevention tactics include consuming a balanced diet that includes fruits and vegetable, whole grains, legumes and milk.

“The World Cancer Research Funds recognizes that consuming milk is associated with a reduced risk of developing colorectal cancer,” says Nathalie Savoie, RD, Dairy Farmers of Canada. An easy way to ensure you are consuming the recommended two to three servings is to start your day off with a dairy-rich breakfast. “Incorporating milk into breakfast items such as smoothies, oatmeal and cereal is a simple way to increase your dairy intake.”

Make sure that you are getting enough of what you need by using THE GET ENOUGH HELPER APP. This app allows you to track what you eat. Plus, for every day you use the app, Dairy Farmers of Canada makes a $1 donation to the Colorectal Cancer Association of Canada.

Novartis Goes Blue For Colorectal Cancer – Will You?

Novartis Goes Blue For Colorectal Cancer – Will You?

Novartis Group Photo Dress in Blue

On Friday, March 4th, Novartis Pharmaceuticals Canada Inc. participated in “Dress in Blue Day”, an annual awareness campaign put on by the Colorectal Cancer Association of Canada. Novartis associates donned various shades of blue to show their support for Colorectal Cancer patients and their families. They were also able to pick up fact sheets and information booklets so they could learn more about this deadly disease. Thank you to the 60+ employees who stopped by for a group photo and to those who generously donated to the cause.

Giant Colon Tour at Pen Centre in St. Catharines Ontario

Giant Colon Tour at Pen Centre in St. Catharines Ontario

PenCentre4Niagara Health System’s (NHS) Colorectal Screening Program, in partnership with Juravinski Cancer Centre in Hamilton, brought the Giant Colon Tour to the Pen Centre in St. Catharines Ontario as part of Colorectal Cancer Awareness Month.
Colorectal Cancer Association of Canada’s (CCAC) pink inflatable walk-through reproduction of the human colon is 40 feet long and eight feet high. The exhibit attracted over 2,300 visitors on Friday March 4th and Saturday March 5th, 2016.
The NHS partnered with The Giant Colon Tour, an educational exhibit part of the CCAC campaign that seeks to educate Canadians that this disease is preventable, treatable and beatable.
A team of registered nurses and health promotion specialists from Niagara Health System’s Endoscopy department were on hand to offer information about screening and prevention. Dr. Meghan Davis, CCO Regional Primary Care Lead and Dr. Pierre Major, the Chair of the CCAC’s Medical Advisory Board were also on hand to speak to the numerous visitors from the Niagara Region.
The message on prevention and screening reached thousands more in the region due to the extensive media coverage that was orchestrated by NHS Communications Specialist Steven Gallagher. Below are the links to some of the coverage:

CHCH TV story/video
TV Cogeco story/video
Niagara This Week story

A special thanks to Ruth Peters (NHS) and Andi Sinclair (Brock University), who were instrumental in bringing The Giant Colon Tour to the region for the second time since 2010.

More photos:

Survivor Story – Marie Taurasi

Survivor Story – Marie Taurasi

UntitledMy name is Marie Taurasi, I am 44 years old and I was diagnosed with Stage III rectal Cancer in January 2015.
My story dates back to November 2014. I had very few symptoms, but I asked my doctor to check it out. I underwent a colonoscopy and that is when my world came crashing down. I was told that I had Stage III rectal cancer. All I could think about was my husband and two children (ages 13 and 17). What were they feeling? What is going to happen to me? My thirteen year old daughter looked into my eyes with tears and said “Mom, are you going to die?” My heart sank, my life and world as I had known it was shattered. This could not be happening to me…..Cancer??
Thankfully a friend introduced me to my “Angel”, Filomena Servidio-Italiano from the CCAC. I immediately called her and from the moment we spoke I knew I was in the best hands possible. She calmed me down and educated me on my disease, which I knew nothing about. I had heard a little about colorectal cancer, but never truly understood it. She changed all that. She then referred me to the best cancer centre and oncologists.
Once my treatment schedule was put in place, I underwent radiation and chemotherapy in March 2015. In July, I underwent surgery and had my tumour removed. After six weeks, I had some additional chemotherapy.
Filomena was there from the very beginning, offering guidance and support day and night. Without her I would not be where I am today! I am also grateful to have such an amazing and supportive husband and two wonderful children. The on-going support of family and friends has been amazing, helping me throughout this difficult time.
Throughout this journey, with the education, support and guidance of the CCAC, I have learned a lot about this disease. Most importantly, I learned this is not just an old person’s disease! This disease affects men and women of all ages. It does not discriminate. We need to educate ourselves and to be pro-active. We need to eat healthy, exercise and assume a healthy lifestyle and of course get screened, so that we can prevent colorectal cancer. Did you know that even if you had colon cancer, adopting healthy lifestyles can also help prevent a recurrence of the disease?
The CCAC is here for people like you and me. People who desperately require support, guidance and above all education, so that we can get through the ups and downs that we go through when battling this horrible disease. The CCAC furnishes patients and caregivers with valuable information and monthly support groups where we are able to tell our stories and receive up to date information about the most current therapies designed to help us.

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I am so fortunate that I started my journey with the CCAC because without their help I would not be “cancer-free today”! What a gift they gave to me and to my precious children and husband! Thank you CCAC, for all the support and guidance you have given us. You truly are “Angels”!

“They have made a huge difference in my life……they gave it back to me!!” Now I am giving back to the CCAC by throwing them a massive fundraiser Gala on Saturday, June 4th at Le Parc Banquet Hall in Thornhill. Won’t you join me in honoring the CCAC that evening? Please contact me at taurasimarie@gmail.com for details regarding this spectacular event.

Linda Wilkins – Stage IV Patient Survivor Story

Linda Wilkins – Stage IV Patient Survivor Story

IMG_0289 My name is Linda Wilkins and I am 70 years young, in no small measure because of the help I received from the CCAC and its CCRAN support group headed up by Filomena Servidio-Italiano.

I was diagnosed with Stage 4 colorectal cancer in August 2005. I had surgery the following November to remove the primary tumour along with about 75 percent of my colon, followed by a full round of chemotherapy.

Then in March of the following year I had an operation to remove a metastasis in my right lung, followed by more chemo.

It was then discovered that I had an ‘inoperable’ tumour on the right side of my chest wall and although we tried a round of radiation and more chemo I was told by my oncologist that I would be considered palliative.

Until this point I was not made aware of the CCAC or their CCRAN support group that had recently been formed. I was just accepting the doctor’s prognosis verbatim. Luckily I overheard a gentleman talking in the clinic about the CCRAN information/support group and of his personal treatment. So, I asked him a few questions and he advised me to come to a meeting the following Sunday.

At the CCRAN monthly meetings each of us talk about our individual situations and then we exchange ideas of how to help each other with our struggles and speak to our successes as well. Filomena brings a wealth of research information to each meeting and brings us up-to-date and explains in detail the latest findings. We come away empowered with more and more knowledge each time.

And that is where my cancer journey got on the right track. I learned so much from that point on and never looked back. I did get the Avastin treatment in Buffalo and then I was able to get the ‘inoperable’ operation at Toronto General Hospital with Filomena’s referral to the right thoracic surgeon.

It is now seven years later and I am still ‘No Evidence of Disease’. Perhaps I am the exception, but I learned that the most important lesson here is to be your own advocate and I pass it along to anyone who will listen, thanks to the CCAC and the invaluable support they offered through CCRAN.

I OWE THEM MY LIFE.

Yours sincerely,
Linda Wilkins