Support

The CCAC shares its stories of survival to encourage hope for a better future

The CCAC shares its stories of survival to encourage hope for a better future

barryBarry Stein – CCAC Founder & CEO
Diagnosed with stage IV metastatic colon cancer in 1995

‘Upon my diagnosis I knew very little, if anything, about cancer except that 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 vowed to do as much research as I could so that I would be able to make informed decisions about my treatment.

My determination proved to be a very important first step in my cancer journey and as a survivor. 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.’

Over 20 years ago Barry Stein’s vision to create a better, more preventive and equally accessible medical environment for all Canadians touched by colorectal cancer was put into motion with the birth of the Colorectal Cancer Association of Canada (CCAC). His mission was threefold: Awareness, Advocacy and Education, the three pillars needed to implement change for a cancer free future.

As part of their programs, the CCAC developed numerous monthly support groups across the country to create a meeting place for patients, their families and caregivers to talk about their individual situations and exchange ideas of how to help each other through not only their struggles but their successes as well. The CCAC’s dedicated cancer coaches furnish attendees with valuable information by sharing up to date information about the most current therapies designed to help them. Participants have said they come away from the meetings empowered with vital knowledge each time. Here are a few stories of people the CCAC has helped over the years:

Elan Freedy
Diagnosed with Stage IIIB Rectal Cancer

Elan felt in perfect health before his annual checkup and a rectal exam to check his prostate found microscopic traces of blood. Both his GP and GI told him it was probably nothing based on his young age but recommended a colonoscopy just in case.
“The day of the diagnosis still seems likes a dream in my memory. I remember feeling like it can’t be real.

I was lucky to have such a supportive and loving family and wife who took amazing care of me through all stages of my treatment. I also feel lucky to have made some amazing friends who are my peers in this journey and have greatly enriched my life. I think everyone who goes through the journey comes out stronger and with a better perspective on life than when they went into it.”

UntitledFrank Formusa
Diagnosed with Stage IV Colon Cancer

Frank Formusa began his journey with cancer at 66.

In the fall of 2012, his Oncologist suggested that he may be a candidate for a Hepatic Arterial Infusion Pump – a procedure unavailable in Canada during that time. He wrote to various Provincial and Federal agencies to advocate for the procedure to be done in Canada. In doing so, he met Barry Stein who shared his own successful personal journey with colon cancer and introduced him to Filomena Servidio-Italiano – leader of one of the CCAC support groups.

“This is not a disease that one should go through by themselves. To go to the CCAC meetings is to have a safe place for patients and their families to be really listened to and appreciated. We have left every meeting feeling more informed and with a more positive outlook.

Thank you CCAC – Thank you Filomena! I am so grateful to have met you and to know that you are there for us and for so many just like us.”

jamie 1Jamie Mead
Diagnosed Stage IV Colon Cancer two weeks shy of her 28th birthday

Her diagnosis stemmed from acid reflex complaints at a walk in clinic.

“I have had my surgeon admit that he never thought he would see me again after our first meeting. But with determination, a positive attitude and the will to keep on living – I have proved everyone wrong. I know this is not the end of my battle against colon cancer. I will be fighting this for the rest of my life, but that is ok. I am not thankful for cancer – that would be crazy – I am thankful for other things it has given me. I have a greater appreciation for all those who surround my life. It has made me into a person I didn’t know existed.”

IMG_0289Linda Wilkins
Diagnosed with Stage IV Colorectal Cancer in August 2005

 
After her surgery to remove the primary tumour along with about 75 percent of her colon, followed by a full round of chemotherapy, Linda was introduced to the CCAC and its support groups.

“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 (CCAC support groups). I OWE THEM MY LIFE.

UntitledMarie Taurasi
Diagnosed Stage III rectal Cancer in January 2015

When Marie was diagnosed she had very few symptoms. But following a colonoscopy her world and that of her husband and two children (ages 13 and 17) came crashing down.
“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.

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.

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!”

197Werner Muehlemann
Diagnosed with Stage IV Colorectal Cancer at 28

When Werner went to see his doctor about some problems he was having he was told that he had nothing to worry about because he was young and in good shape. Following a few tests he was diagnosed with colorectal cancer.

“In that moment, I saw my life flash before my eyes – my career and dreams of getting married and starting a family vanishing.

The CCAC helped me acquire all the information that I needed to understand my treatments to follow in the months ahead and ultimately beat colorectal cancer. The CCAC also helped my family get the information they needed to support me in my long journey.

My dream for the future is that colorectal cancer screening becomes as routine as going to the dentist.”

The Backbone of the CCAC is its Supporters

The Backbone of the CCAC is its Supporters

action-changes-things The CCAC is dedicated to colorectal cancer awareness and education, supporting patients and their families, and advocating on their behalf. Like most non-profit organizations, we rely on donations and money collected from fundraising events to maintain the services and programs we offer. As a result, throughout the year we host numerous campaigns and events to ensure we maintain our promise of working towards change for a better colorectal cancer free future.

As always, we invite our many supporters to participate either by attending or sponsoring our events and campaigns which include, Dress in Blue Day, Scotiabank Marathons, our annual Gala in Montreal, Foods That Fight Cancer, Never Too Young and Decembeard, to name a few.

However, in addition, we are very lucky and thankful to have numerous supporters across the country that host their own fundraising events in honor of a loved one affected by colorectal cancer. These individuals not only have our support via promotional or educational materials required but also have access to local staff or volunteers available to ensure their event’s success. Previous volunteer hosted events include; golf/baseball tournaments, luncheons, dinners, concerts, fashion shows, movie nights, art exhibitions and auctions.

Should you be interested in joining our volunteer staff or hosting a local event of your own, please do not hesitate to contact Frank Pitman at frankp@colorectal-cancer.ca.

Upcoming Fundraising CCAC events:

Dress in Blue
Dress in Blue Day happens annually on the first Friday of March to celebrate Colorectal Cancer Awareness Month; activities go on all month long. On this day, we engage schools, businesses, community groups and individuals to help us call attention to colorectal cancer awareness and spread lifesaving knowledge on prevention.

You can engage by hosting denim days and blue costume contests at offices and schools, holding local fundraising events, getting involved on social media and so much more. To be part of Dress in Blue Day and for any further information go to dressinblue.ca. We would love to see a colorectal cancer free world, please be part of the success by showing support!

Raise awareness for Colorectal Cancer

Raise awareness for Colorectal Cancer

Survivor The whole month of March is dedicated to Colorectal Cancer Awareness. The month where the Colorectal Cancer Association of Canada strives to raise awareness about the importance of screening and offers support to those touched by the disease.

Colorectal cancer is the second leading cause of cancer related deaths in Canada, yet it can be detected through simple screening tests. Colorectal cancer affects everyone, young and old, male or female. Although the prevalence of the disease increases at about 50 years old, many young individuals are touched by the disease, and the CCAC makes a point in offering them support.

The CCAC’s mission is Awareness, Education, Support and Advocacy. They continue to develop new events and programs across the country, with the goal of having a strong voice in every Canadian city.

This month, is also Nutrition month which ties in perfectly with the Foods That Fight Cancer program, a program that aims to celebrate a healthy lifestyle and primary prevention of cancer. We have also aligned with our alliance partners all over the world to promote the Never Too Young (N2Y) campaign supporting young patients diagnosed with the disease.

To beat this disease, we need the world to know how it can lower its risks through healthy lifestyles and screening.

We are in this fight together and will one day be able to proudly say that we beat this disease together!

REAL MEN, REAL BEARDS, REAL CHANGE!

REAL MEN, REAL BEARDS, REAL CHANGE!

This December thousands of men around the world banned together under one mission: to lay down their razors to grow out their best beard. No, they weren’t just slacking off on shaving for a month – instead their goal was to raise awareness and funds for the fight against colorectal cancer by participating in Decembeard. The result, a tapestry of beards ranging from peach fuzz to the kind you’d find on a stereotype lumberjack. AND $7,090 raised for the Colorectal Cancer Association of Canada.

This was the CCAC’s third year participating in Decembeard and both REAL MEN and REAL WOMEN were encouraged to participate by getting sponsors to support their beard growth – for women by faking, making, or painting a beard.

Colorectal cancer is the second biggest cancer killer for men and women combined in Canada, and yet it is 90% preventable and curable if caught in its early stages. In 2014, 1 in 13 men and 1 in 16 women will be diagnosed with colorectal cancer. This amounts to approximately 24,400 (about 13,500 men and 10,800 women) new cases of colorectal cancer each year. That’s why awareness is so important.

The funds we raised with all those who participated and our sponsor; Big City Beards, (for every sale they made during December they donated $1 to the CCAC and advocated for the campaign) will continue to help and support people with colorectal cancer and their families, and raise awareness of the disease, its symptoms, the need for early diagnosis and promote screening in Canada.

beard“Decembeard is a great charity for the lazy man! What can be easier than stopping to shave for a month!? Aside from the constant reminders from my wife to stop twisting/scratching/combing my patchy beard it is an easy way for me to raise awareness for a disease that has affected my family immensely.

When people see me with my patchy beard they often ask what’s going on and it is a great way to start the conversation about colorectal cancer and how easily it can be prevented. I look forward to many more years of not shaving in December!” Robert Stein

About Big City Beards

Health is our main priority and we believe in strengthening our bodies, skin and hair with only the best natural and organic products available, and that’s why we brought it upon ourselves to create the healthiest, most nurturing beard care product line on the market!

We believe in challenging the industry norms by handcrafting (USDA organic certified, International Organic Certified, Vegan Certified, Kosher Certified) products that will be extremely beneficial for all of our bearded friends. They will soothe the beards of our users, with natural ingredients that have been used for hundreds of years by our forefathers, stretched across the globe. These organic and effective treatments are going to keep your skin nourished and moisturized, leaving you with the softest, healthiest beard one could ever ask for.

Cancer Conversations that Matter

Cancer Conversations that Matter, a Canadian Cancer Action Network (CCAN) initiative funded by the Canadian Partnership Against Cancer, took place at the Berkeley Field House in Toronto on Saturday, November 19, 2016.

The Canadian Cancer Action Network (CCAN) invited cancer patients, survivors, caregivers, patient groups and concerned citizens, to add their voice to an important national conversation to help further inform cancer care dialogue and cancer patient outcomes in Canada.

Frank Pitman, responsible for patient support at the CCAC, participated in this day long event. Frank is also a colorectal cancer survivor and was a caregiver for his younger sister who died of colorectal cancer when she was just 44 years old.

Cancer Conversations that Matter is a unique café style event that brought together Canadians with a cancer story, lived experience or interest in sharing their perspectives in order to offer input into Canada’s cancer strategy This one day event focused on exploring and discussing three current issues in cancer control:

Canada’s aging population: Drawing on the lived experiences of patients and family caregivers to help highlight the unique needs and unaddressed challenges experienced by Canada’s aging population.

Screening: Addressing the problems of access to screening for low income families, and identifying what can be done to improve cancer screening rates for Canadians facing financial and other barriers.

Cancer data: Exploring key emerging issues in the collection and use of cancer data in Canada; how cancer data is used to navigate or improve the cancer journey and how cancer data may be applied to advocacy practices to improve outcomes.

Launch of the Get Personal Campaign on World Metastatic Colorectal Cancer Day

Launch of the Get Personal Campaign on World Metastatic Colorectal Cancer Day

gettestedcampaign_en

Today is World Metastatic Colorectal Cancer Day. A day dedicated to raise awareness of the most advanced form of colorectal cancer, known as metastatic colorectal cancer; this is when the cancer has spread to other parts of the body, such as the liver or lungs.

Each year there are 1.4 million new cases and 694,000 deaths from colorectal cancer. Many of these deaths are caused because the disease is detected too late. Approximately 20% of people across Europe and the US are diagnosed when the cancer has spread and even more go on to develop metastatic colorectal cancer after having been diagnosed at an earlier stage. Regardless of where you live in the world, people diagnosed with metastatic colorectal cancer have no more than a 1 in 10 chance of surviving more than five years.

However, with timely access to effective treatment and high quality care, people with metastatic disease can see their survival chances and their quality of life dramatically improve. But for too many patients, access to treatment is dependent on whether they have adequate insurance or if their public health system has approved specific treatments, rather than what their doctors and healthcare providers believe would benefit them most.

To coincide with this important day, Bowel Cancer UK, Bowel Cancer Australia, Colon Cancer Alliance (US), Colorectal Cancer Association of Canada, and Fondation A.R.CA.D. (France), have come together to launch the global Get Personal Campaign to make real change happen for people with advanced colorectal cancer.

Get Personal aims to increase survival rates, improve quality of life and reduce variation in access to best treatment and care for people living with metastatic colorectal cancer around the world.

We are committed to:

• Eliminating variation between and within countries so that everyone, irrespective of where they live, has access to the best treatment and care.
• Putting metastatic colorectal cancer firmly on the agenda of governments, health care providers and key decision-makers.
• Campaigning for further research to address gaps in knowledge and support the development of new, innovative and effective treatments.
• Raising awareness among patients, clinicians and policy-makers of the full range of tests and treatments to be made available.

By campaigning together and learning from each other, we know we can make a difference. Colorectal cancer does not recognise borders, and neither do we
For more information on the campaign and to find out how to take part visit the Get Personal website www.getpersonal.global.

Survivor Story: One Patient Questions & Demands Change – You can too!

Survivor Story: One Patient Questions & Demands Change – You can too!

pic My name is Joan Green. I am 62 years old, married, mother of 3 and I was diagnosed with stage IV colorectal cancer in 2013. My disease spread to my liver and lungs which necessitated me going on chemotherapy and a targeted therapy called Avastin. I have been responding very well to this combination therapy for quite some time. My quality of life has actually been good and I have managed to lead a relatively normal lifestyle. The majority of tumours have shrunk and I am grateful to be alive especially with the support of the Colorectal Cancer Association of Canada through their monthly support and information meetings which are amazing and helpful to us all. I really appreciate these monthly meetings.

I have recently been advised though by my medical oncologist that my liver enzymes are taking a beating because of the toxicity caused from the chemotherapy. The oncologist is, therefore, recommending I change chemotherapy regimen. If I do this, I will no longer be eligible for the avastin which I believe has made a difference in the management of my disease. The provincial plan where I live does not fund avastin therapy in the next line of therapy for me. This is so disappointing for me and for my family who rely entirely on universal health care coverage! I truly believe that Avastin is the drug that is keeping my cancer at bay. I am not certain how to proceed. I know that other countries fund avastin in multiple lines of therapy. Why not in Canada?

Do you want to partake in a movement for change?

action-changes-thingsIf so, the CCAC needs your help! We’ve teamed up with patient advocacy groups from around the world to improve the treatment and care of patients affected by advanced colorectal cancer. Advanced colorectal cancer or metastatic colorectal cancer is when the cancer has spread from the colon or rectum to another part of the body such as the liver or lungs, or anywhere else for that matter. We are carrying out a comprehensive survey on the experiences of advanced colorectal cancer patients to learn about excellent practice and gain an understanding of where improvements need to be made.

Act now and promote change! Take the survey here:

http://confirmit.ssisurveys.com/wix/p65578404.aspx?l=4105

Becoming a volunteer for the CCAC can help us save lives. Maybe even yours.

Becoming a volunteer for the CCAC can help us save lives. Maybe even yours.

b8b5b063f881516dcc09c7cf26ed1d55 While it’s true that people with firsthand colorectal cancer experience are more inclined to join the fight against the disease, anyone can play a role in and impact the battle that the CCAC continues to fight daily.

Whether you are a cancer survivor or care about someone living with cancer, you have valuable knowledge and experience that can help shape the experience of others with compassion and understanding. By becoming a CCAC volunteer, you can use your cancer experience in a positive way. Not only will it impact someone else’s life, it will positively affect your own.

Why volunteer?

• Build relationships – Your experience can help others deal with their journey
• To create hope and inspire patients and caregivers in their fight against cancer
• Widen your support network – It’s a great way to deal with your own cancer through shared experiences
• Your involvement can help save lives

Ways to volunteer

We offer a flexible range of ways to become involved, no matter how much time or the skills you have to share. Our volunteer opportunities include assisting with fundraising activities, healthy living education/promotion, creating awareness about prevention, patient or family support or office work assistance if you are in the Montreal area.

Cancer support groups

Trained volunteer facilitators lead support groups for people with colorectal cancer and their families. Our programs offer critical information on the disease and its management, as well as emotional and practical support to patients and their families to help them find ways to cope while undergoing the journey.
Awareness and education.

Spreading the word about symptoms and prevention is key to early detection and survival, particularly with the growing rates of those under 50 being diagnosed. We constantly need people to help raise awareness about colorectal cancer and to provide education about prevention and screening. Whether it be at CCAC organized events (table tops or at a Giant Colon Tour stop), hosting your own event or via social media, it’s easy and all are welcome.

Fundraising

Like most non-profit organizations, we rely on donations and money collected from fundraising events to maintain the services and programs we offer for patients and their families. There are organized CCAC events scheduled throughout the year that you can participate in or like many of our supporters have done in the past you can create your own within your own community. The CCAC will support you with any promotional or educational materials that you require. Previous volunteer hosted events include; golf/baseball tournaments, luncheons, dinners, concerts, fashion shows, movie nights, art exhibitions and auctions.

Testimonial

13413841_10154115661646422_686387621_n“Having colorectal cancer running in my family, I wished to help raise awareness of this life taking disease, and did so by being a volunteer for the CCAC for quite a few years now. With the equal participation and support of my boyfriend, we have taken part of many events hosted by the association to bring awareness to one of the most preventable diseases, if caught early. It has been one of the most fulfilling experiences of our lives and we can only hope that we have brought and will continue bringing awareness to people. Early screening can save your life, so literally, go get your butt checked.” Tam & Max

For more volunteer information please contact Frank Pitman at frankp@colorectal-cancer.ca.

Werner Muehlemann – Survivor and Advocate for Change!

Werner Muehlemann

“At 28 years-old, I went to see my doctor about a problem I was having. He told me that I had nothing to worry about because I was young and in good shape. Following a few tests, I was diagnosed with colorectal cancer. In that moment, I saw my life flash before my eyes – my career and dreams of getting married and starting a family vanishing.

The CCAC helped me acquire all the information that I needed to understand my treatments to follow in the months ahead and ultimately beat colorectal cancer. The CCAC also helped my family get the information they needed to support me in my long journey. Today, nine years later, I have three children with the same woman and I survived this cancer. And for the first a few years ago, I was able to complete my marathon.

Werner now serves on the Board of Directors at the CCAC and advocates on behalf of   all the work that we do in order to beat this terrible disease.

Werner now serves on the Board of Directors at the CCAC and advocates on behalf of all the work that we do in order to beat this terrible disease.

My dream for the future is that colorectal cancer screening becomes as routine as going to the dentist.”

In the spirit of Young Survivors Week, the CCAC has compiled a series of survivor stories to offer hope, instill courage and inspire change. We continue to share new stories every day. If you would like to share yours, please send it to isabellan@colorectal-cancer.ca.

Young Survivor’s Week – Bravery comes in many forms, thank you Jamie Mead for your story!

Young Survivor’s Week – Bravery comes in many forms, thank you Jamie Mead for your story!

jamie 2 It was a day I will never forget. Two weeks shy of my 28th birthday I was awoken after my colonoscopy and told I have stage four colon cancer. My heart sunk. How is this possible? Just two months ago I was at the walk-in clinic complaining of acid reflex and now I have cancer?

I was quickly introduced to a surgeon who informed me that my liver was riddled with tumours and unfortunately I was inoperable. I quickly kicked everyone out of the room as I felt myself running out of air. Five minutes later he came back in and I sat up from the fetal position and said, “No. I believe you will operate. I challenge that you will see the inside of my body within 1 or 2 years.” After four rounds of chemotherapy, to my surprise, I was right. I underwent two operations that year and since then I have had five, with my sixth coming this June. jamie 1 I have been told not once, but twice that I am inoperable. I have had my surgeon admit that he never thought he would see me again after our first meeting. But with determination, a positive attitude and the will to keep on living – I have proved everyone wrong. I know this is not the end of my battle against colon cancer. I will be fighting this for the rest of my life, but that is ok. I am not thankful for cancer – that would be crazy – I am thankful for other things it has given me. I have a greater appreciation for all those who surround my life. It has made me into a person I didn’t know existed.

For my own therapeutic reasons I started a blog to help drain the chaos that exists in my brain. It is found at www.youngfemalecancer.com. I openly share my experiences and thoughts – and welcome anyone to interact with me through there.

Keep on fighting!