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Never Too Young- Laura’s Story –

Never Too Young- Laura’s Story –

Thinking back to her week-long stay in the hospital, one memory stands out to Laura Jambrovic amidst the endless tests, beeping of machines, sleepless nights and morphine-dulled pain—her toenails, painted pink.

She had had them done for her graduation from McMaster University just two weeks prior. Now, they were peeking out from the too-short blanket on her gurney as the hospital orderly wheeled her through the halls for yet another test, singing gently to her in Italian.
Before being admitted to the hospital early in the morning on Friday, June 24, 2016, after spending the night vomiting and in severe abdominal distress, Laura had spent most of the previous year dealing with debilitating cramping, bloating, irregular bowel movements and numerous fruitless visits to doctors.
A weekend of tests revealed the source of Laura’s pain—a tumour in the lower colon so large that her doctors called it a “complete obstruction.” Surgeons removed a thirty-centimetre portion of her colon and performed an emergency colostomy—a procedure that brings one end of the colon through an opening in the abdominal wall, where a bag is attached to collect stool. The tumour and a cluster of the surrounding lymph nodes were sent for testing.

Ten days later the results came back.
Colon cancer.
Stage III.

As her older brother, it’s the initial phone call from our dad that I remember most.
“I’m at the hospital with your sister.”

I had to attend a wedding that weekend and the doctors didn’t know what was wrong with Laura yet so Dad told me not to worry.
“Try and have fun,” he said. “I’ll keep you posted.”

I knew she had been dealing with a lot of discomfort for the past year and part of me was happy that at least now she might finally get some answers.

Laura and I have always been close despite our age difference. She is three years younger than I am, but we’ve always looked and acted so similarly people have often assumed us to be twins.
As the older sibling, I was always giving Laura guidance and advice, but for the first time in my life I couldn’t tell her I knew what she was feeling, I couldn’t say: “Don’t worry, I’ve been there and it will get better.”

All I could think was: “Why couldn’t it be me?”

During her treatment and recovery, Laura and I spoke at length about her illness.

“In hindsight, there were signs I had problems stretching back before high school,” she told me. For years, she took Metamucil to combat irregular bowel movements, and she struggled with constipation and cramping throughout the years, but she always attributed it to diet.
By June, 2015, her symptoms worsened - cramping became severe and she had blood in her stool. At times, the pain grew so bad, she didn’t want to get out of bed. Multiple blood and stool sample tests revealed nothing conclusive, but doctors suspected irritable bowel syndrome (IBS).
A health and fitness buff, Laura became even more conscious of her diet, keeping a food diary to try and find a pattern between what she ate and her symptoms, but no pattern emerged and she began to despair.

At one point, feeling “trapped and hopeless,” after leaving another unsuccessful doctor’s appointment, Laura broke down. While waiting for the bus she needed to take her home, she spied a nearby dumpster and hid behind it so no one would see her cry.

Cancer was never even mentioned until her trip to the emergency room.

The technical name for Laura’s diagnosis is low grade colonic adenocarcinoma in the sigmoid colon. The colon, also known as the large intestine or bowel, is a muscular tube measuring about 1.5 metres long that dehydrates the leftover remains passed along by the stomach and small intestine, turning it into stool.
Sometimes the cells lining the colon or rectum become abnormal, forming non-cancerous tumours or growths called polyps. Not all polyps turn into colorectal cancer, but colorectal cancer almost always develops from a polyp. When a cancerous polyp gets large enough, cancer cells can then grow into the organ wall, gaining access to blood and lymph vessels, enabling it to spread.
The days following Laura’s trip to the emergency room in June 2016 were an emotional whirlwind. My drive home was a blur of barely-contained panic, but the twin, haunted looks my parents gave me when I walked in the front door will be with me until the day I die.

As the days passed, crushing fear, sadness and pain gave way only to frustration, anger, guilt and self-pity. We agonized over the events of the previous years—could we have done more? How could this have happened? How does a seemingly healthy 22-year-old get a disease like this? And perhaps most important: Why wasn’t it caught earlier?

Cases like Laura’s are so unusual that her surgeon told her she is the youngest colorectal cancer patient he had ever operated on.
However; a recent Canadian study, Trends in colorectal cancer incidence and related lifestyle risk factors in 15–49-year-olds in Canada, 1969–2010, shows that while overall colorectal cancer incidence rates in Canada have declined slightly since the mid-90s, incidence rates in those aged 15–49 have actually increased, especially in the 15–29 age group, “in whom the incidence rate increased 6.7% per year between 1997 and 2010.”

Dr. Prithwish De, co-author of the study and the Director of Surveillance and Cancer Registry at Cancer Care Ontario, said the increased rates of young-onset colorectal cancer were “surprising” because it is typically thought of as being an older person’s disease. He calls the study’s results “alarming.”

Ultimately, testing revealed that Laura does not have any known genetic markers associated with young-onset colorectal cancer, but about 30% of young-onset cases develop in those with a family history of the disease or genetic disposition, and both the U.S. Preventative Services Task Force and the Canadian Task Force on Preventive Health Care recommend regular screening beginning at the age of 40 for these high-risk individuals.

For Canadians at an average risk, screening is recommended for people aged 50 to 74. Despite rising young-onset incidence rates, screening is not recommended for average-risk individuals under 50.

Diagnosis is tricky in young people like Laura, because of the similarity of colorectal cancer symptoms to other, less serious, gastrointestinal problems like IBS, or an iflammatory bowel diseaese (IBD), such as Crohn’s or ulcerative colitis. Further complicating diagnosis, Canada also has one of the highest rates of IBS, with five million-predominately female-Canadians currently suffering.

Dr. De believes that a team effort is required to combat delayed diagnosis.

“The healthcare community definitely needs to be more aware of the rise in colorectal cancers in young people,” Dr. De said. And “symptoms need to be communicated more clearly,” but there also needs to be greater vigilance among young people.

In the weeks immediately following her June 2016 surgery, Laura did her best to keep her spirits up. Her physical and mental wounds were still raw, however, and the reading she did on treatment side-effects and long-term survival rates were depressing. The week-long stay in the hospital was hard on her body, causing her to drop from a muscular 142lbs to a too-lean 130lbs. The incisions in her abdomen were tender and she had no energy, often growing light-headed and occasionally fainting.

The colostomy bag was inconvenient and made her feel unattractive, but what really weighed on her, especially at first, was the idea that she might never be able to push herself in the gym like she used to. For her, the gym is a sanctuary where she can clear her head, and especially in the initial few weeks of post-op shock, thoughts that that had been taken from her were especially crushing.

“I hid my gym stuff. It [was] just so hard to look at,” she told me when we sat down that summer to formally discuss her illness. “The hardest part to come to terms with was not being able to do things I love.”

The year following Laura’s diagnosis has been a roller coaster. After the initial panicked days and weeks, I buried myself in research, hoping that an understanding of why and how this had happened would be cathartic.

Meanwhile, Laura began her treatments. Prior to chemotherapy, she underwent oocyte cryopreservation—the process of freezing and storing her eggs—to guard against any potential fertility issues caused by treatment.

Fears that treatment would be unsuccessful-or that it would be successful, but with terrible side-effects-kept her awake at night. More than once she caught herself staring at her long, blonde-streaked hair, anxious that she might lose it.

The worst part for me was knowing that she was going to have to deal with these side effects without knowing until treatment was finished whether it worked or not.
But Laura was determined to regain a degree of control. Within a few months of beginning her twice-monthly chemotherapy treatments, she returned to the gym despite frequent bone-deep weariness. When her hair started falling out she cut it short and was able to donate it to other cancer patients. She even joined a dog-fostering group.

Slowly, a feeling of normalcy began to return.

Before I knew it, it was February 2017, and Laura had her final dose of chemotherapy. We waited, breath held, for the results of her follow-up colonoscopy. And then we got the results.
No sign of disease. Her colon, at least, was clear.

The vice grip on my heart I had forgotten was there, released, and I felt like I could finally begin to relax again. A few weeks later, she adopted a puppy, fulfilling a lifelong dream, and towards the end of April she had surgery to reverse her colostomy. When I visited her at the hospital, she had a big grin on her face. The mood could not have been more different from her initial visit. Laura kept feeling at her side, not quite believing that she was whole once again.

“I can’t believe it’s finally gone,” she said. “It feels so weird.”

It wasn’t all good news - a follow-up CT scan done around the same time as the colonoscopy revealed a couple of small spots on her liver and a lung that doctors wanted to keep an eye on. We were nervous, of course, but after all the worry and frustration of the previous year, this felt minor. Laura returned to her part-time job and began planning a trip with a friend, pending the results of her next follow-up appointment.

On July 20, 2017, she was given the all-clear from her surgeon. The spot on her liver is nothing to worry about, and though they are going to keep an eye on her lung, there was no reason she should not go on her trip. Just three weeks later, she was on a plane to Amsterdam.

When I woke up one morning to a series of frantic Facebook messages from Laura detailing her misadventures with the German train system, I couldn’t help it - I laughed. A similar awakening prior to her diagnosis would have given me fits, but now it feels so good to be able to give her advice from my own experiences again.

“Don’t worry, Laura. I’ve been there and it will get better.”

David J, Laura’s brother

“I promised myself that if I survived I would live—really live. I regretted letting fear hold me back, and vowed to give life everything I had if I made it out of this journey alive. I have since applied to nursing programs and am anxiously/ eagerly awaiting a reply. It is my hope to one day work as a paediatric ostomy care nurse. I have also gone backpacking across Europe, and plan to visit Southeast Asia next year. I never would have done these things had I not had cancer – for that I am incredibly thankful. Cancer did not teach me to be fearless, but to go on despite fear. ”

Laura J.

Starlette promotes bralette for a good cause – Order yours by March 13, 2018

Starlette promotes bralette for a good cause – Order yours by March 13, 2018

Montreal actress Juliette Gosselin partners up with Sokoloff Lingerie to help increase awareness of colorectal cancer among women. She named her bralette Jacqueline in honor of her grandmother, who fought this disease. All the sales profits will be donated to Colorectal Cancer Canada.

The Colorectal Cancer Canada is dedicated to increasing awareness of colorectal cancer, supporting patients, and advocating for population-based screening and timely access to effective treatments. Worldwide, colorectal cancer is the third most common cancer afflicting humans.

This collab falls under a bigger initiative called B-Cause where other Montreal artists, joined Sokoloff Lingerie to create bralettes for different charities.

BRALETTES FEATURES
Loungewear satin bralette
Very deep cleavage
Large frilled elastic at underbust
Delicate bow at center front
Non-adjustable straps
Hook & Eye back closure
Perfect for indoor cooconing
Made in our very own Montreal workshop

MATERIAL
100% polyester.

SIZES
We recommend a SMALL for cups:
32A / 34A / 36A / 32B / 34B / 32C
We recommenda MEDIUM for cups:
36B / 34C / 36C / 32D
We recommend a LARGE for cups:
34D / 36D
If needed, refer to our fitting room tips to find your size !

**PRE-ORDER ONLY UNTIL MARCH 13TH. BRALETTES WILL BE SHIPPED ON THE LAST WEEK OF MARCH*

To learn more about Juliette Gosselin click here!
To learn more about Colorectal Cancer Canada, click here!

The Christodoulou Story

The Christodoulou Story

My name is Franca Christodoulou and this is my story. At age 49 my husband Chris was diagnosed with Stage 4 Colon Cancer that had metastasized to his liver. As you can image, this came as a complete shock and changed our world forever. Our focus was to do anything possible to provide my husband the best treatment options so that he would be around for our precious family, as we have 3 young children; but we felt lost, confused and helpless as we did not know where to turn to for guidance.

I was made aware of Colorectal Cancer Canada from a doctor I was accidently referred to and it changed our lives. I decided to call the number and spoke with Frank, a wonderful gentleman from Montreal, who told me “you’ve called the right place” and that he would have someone from the Toronto office call me. I received a call right away from Filomena and as soon as I spoke with her I indeed knew that I had called “the right place”. She was passionate, caring and a wealth of knowledge. She encouraged us to attend monthly colorectal cancer information and support group meetings. We started to attend these meetings and they have provided us with a wealth of information, support and friendship. Filomena reviewed my husband’s case and made us aware of new options available to us. She was influential in connecting us to the right doctors and my husband underwent surgery at Sunnybrook in August 2017 to insert a Hepatic Arterial Infusion pump for the treatment of his disease. Colorectal Cancer Canada was instrumental in helping to make this treatment available in Canada through a clinical study at Sunnybrook Health Sciences Centre. We feel truly blessed to have Filomena and Colorectal Cancer Canada take on the fight to provide patients with the best treatment options available and their tireless efforts to bring new treatment options to patients who might not otherwise have access. Colorectal Cancer Canada provides guidance to all members who attend these monthly meetings and go above and beyond to help support all of us regardless of disease stage or where they are in their journey. I strongly recommend any patient who is diagnosed with colorectal cancer contact Colorectal Cancer Canada. It could change your life.

With all our love and appreciation.
The Christodoulou Family

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