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.
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.
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?
If 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:
It was a festive atmosphere on July 15th at Bracco / EZEM Canada where employees launched their summer vacation with the company’s annual BBQ. In addition to thanking their employees for their accomplishments, Bracco / EZEM Canada took the opportunity to raise awareness of colorectal cancer screening. As a manufacturer of barium products and accessories dedicated to medical imaging of the gastrointestinal tract, employees were able to learn more about the use and importance of their products in these tests. Moreover, this day raised donations for the cause and a $ 1,000 cheque was handed over to the Colorectal Cancer Association of Canada. Bravo!
The Montreal Symphony Orchestra’s annual summer concert at the Olympic Park has become a tradition. Led my maestro Kent Nagano, it always attracts a crowd of music lovers. This year on August 10th, the MSO put together a concert to celebrate the Olympic Park’s 40th anniversary. A truly musical celebration to mark an important event and pay tribute to the athletes who competed here in 1976!
In coloboration with the Montréal East Island Integrated University Health and Social Services Center, the Colorectal Cancer Association of Canada had the opportunity to greet the concert goers and inform them about colorectal cancer screening.
I was diagnosed with stage 4 colorectal cancer in 2011 at the age of 29. Over the past 5 years, I have been through radiation therapy, countless cycles of chemotherapy and several surgeries on my colon, liver and lungs. In addition to traditional treatment, I have embraced a healthy lifestyle and am so happy to be doing well.
I have a wonderful wife and we were blessed with the arrival of our beautiful son in January of this year. I am very thankful for the on-going support of our family and friends, and the amazing team of health care professionals who have helped me to get here.
About “Andrew’s Walk to Support Cancer Patients”:
After my diagnosis, I wanted to help raise money to fight the disease and support cancer patients. We raised $26,382 over 5 years with the help of our family and friends!
“Andrew’s Walk to Support Cancer Patients” was officially launched in 2014. Each year, we select a different organization or endeavour to support. This year, we are pleased to be raising money for the support groups run by the Colorectal Cancer Association of Canada (CCAC).
Why we are raising money for the CCAC:
My wife found the CCAC 6 months after my diagnosis. This organization has made a huge difference in my battle against colorectal cancer. I have attended the monthly Oakville support group meetings on many occasions over the past 5 years. These meetings, led by Filomena Servidio-Italiano, provide me with the knowledge, resources and confidence to ask the right questions, make informed decisions and better manage the treatment of my disease. The CCAC provides a positive and supportive environment where colorectal patients come together to gather information and share their unique experience in this journey. Filomena is always there to listen and provide guidance, and to advocate on behalf of colorectal cancer patients.
I am proud to be having “Andrew’s Walk to Support Cancer Patients” on September 17th, 2016 with all of the money raised going to help the support groups at CCAC. I know first hand what a difference they can make in this battle against colorectal cancer.
To make a donation click here
Guest Blogger – Marc-Aurèle Chay
The American Society of Clinical Oncology (ASCO) 2016 annual meeting took place June 3rd to 7th in Chicago, Illinois. Being the largest cancer conference in the world, it gathered doctors, researchers and biopharma giants to discuss the latest trends in cancer research. On the topic of colorectal cancer, you will find the four most promising advances that were presented at the conference below.
Combining Nivolumab and Ipilimumab to treat MSI-H mCRC: The CheckMate-142 trial
CheckMate-142, an ongoing phase II clinical trial, is testing the efficacy of combining Nivolumab with Ipilimumab for treatment of mCRC. The two drugs are hypothesized to enhance T cell antitumor activity through complementary mechanisms, and are promising for the targeting of MSI-H (microsatellite instability high) mCRC especially. With an overall response rate (ORR) of up to 33% (9/27 MSI-H patients on combination therapy having a partial remission), this combination therapy shows good potential and appears to be tolerated by most patients, although the effects seem to be more effective for MSI-H mCRC only.
A new promising combination therapy for the treatment of KRAS-mutated, non-MSI-High CRC.
A phase Ib study is investigating the combination potential of Cobimetinib (a MEK inhibitor) and Atezolizumab (an anti-PDL1 antibody) for the treatment of advanced solid tumors. Using a predefined expansion cohort of KRAS-mutated mCRC, the combination treatment achieved an ORR of 20%, with treatment related grade 3 adverse event occurring in 35% of the patients. This is a step forward in the treatment of non MSI-H mCRC, and evaluation of the combination treatment effectiveness will be continued.
More is not always better when treating CRC with chemotherapy.
STAR-01, a randomized phase III clinical trial, investigated the effects of increasing the aggressiveness of chemotherapy for the treatment of resectable locally advanced rectal cancer. They compared a standard regimen of 5FU-based chemoradiation with the same regimen + oxaliplatin. The more aggressive chemotherapy regimen did not result in improved pathological complete response or 5 year overall survival rate, but was unfortunately associated with increased toxicity.
Right-side vs left-side colorectal cancers, differences in prognosis and response to treatment.
A lot of attention was brought to the debate of the differences between left and right side colorectal cancer. A retrospective analysis of the CALGB/SWOG 80405 study showed that patients with primary tumors on the right side of the colon have a 55% higher risk for death compared with patients with primary tumors located on the left side. This finding is especially important for the designing of new drugs and drug trials, and need to be taken into account when doing randomization for studies.
And there you have it, the most promising studies presented at this year’s ASCO relating to colorectal cancer.
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.
• 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.
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.
“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 email@example.com.
“Colon cancer is often silent and insidious – I can attest to that. At only 30 years of age and with virtually no symptoms or family history I was diagnosed with stage IV colon cancer. I owe a debt of gratitude to my family doctor who by accident (or perhaps divine intervention) ticked a box for a lab test on some routine bloodwork that came back suspicious for colon cancer. She, as well as several specialists, tried to reassure me that it was very unlikely that at my age I could have such a disease. But my insistence on having further testing was justified when a tumour was detected in my colon during a colonoscopy.
A whirlwind of more tests and doctor appointments followed. Despite metastases (tumours which spread outside the colon) being detected in my liver and lymph nodes, my doctors were confident that with surgery and chemotherapy I would have a good chance of overcoming this disease. And so it began. In February 2010 I had surgery to remove half my colon and two-thirds of my liver. After six weeks of recovery I started on a six-month course of chemotherapy. This proved hard on my body and very challenging on my mind and spirit. On the bright side of things, the time off of work afforded me more time to spend with my young son (who was not even two when I was diagnosed) and when I felt well we enjoyed lots of quality time at our family cottage.
Now, two years later I am doing well and despite a setback last year when another tumour was found in my liver, the outlook remains good. It will be years before I know whether I am cancer free and so I continue to live on a roller-coaster of blood tests and scans searching for any signs of return of cancer in my body. I credit the support of dear friends, family and colleagues with helping me through the tough times. I am committed to fundraising and raising awareness of colon cancer screening. I have benefitted from the support and education programs offered by the Colorectal Cancer Association of Canada since becoming a member shortly after my diagnosis. I am proud to be involved for a second year with the Get Up There ski challenge which provides generous funds to cancer organizations to help continue public awareness campaigns.
I have been cancer free for over five years. I had my second baby in 2013, three years after my diagnosis, so I have two boys now. And I am completing my masters in nursing this year.
Life is full of challenges, but no challenge is insurmountable. I am looking forward once again to reaching the top of Wentworth Mountain with family and friends by my side.”
My husband and I returned from a trip to Mexico in December of 2013 and I found myself violently ill with a stomach bug shortly after. I never fully bounced back from that and was generally unwell for the balance of 2014. I felt so ‘off’ that I stopped going for walks, playing baseball, riding my bike, swimming, etc. and was finally diagnosed with Celiac Disease in November 2014. I hoped within a few weeks of starting a strict gluten-free diet that I would feel like a million bucks, but the opposite happened and my symptoms seemed to get worse.
I read somewhere to see a doctor if you notice changes with your stool lasting more than a week or two, so I made an appointment to get in asap. A colonoscopy quickly followed and I was diagnosed March 12th, 2015 with Colorectal Cancer (ironically during Colorectal Cancer Awareness Month). After a CT-Scan and an MRI, it was determined to be Stage 3. This meant; 5 weeks of a daily radiation/chemo pill treatment combo, bowel surgery including the addition of an ileostomy bag, followed by 3 months of chemotherapy and hopefully (under a best case scenario) a second surgery to remove the bag.
The surgery that removed a portion of my rectum determined that 1) my radiation treatment was very successful so I didn’t need the planned chemo treatment after all and 2) the ileostomy was in fact temporary. I am happy to sum up that everything turned out extremely well in my case.
How did I get through all that? While it’s hard to say because last year was a blur, but a few things are clear;
• Taking one day at a time was instrumental because the big picture was extremely overwhelming
• My Husband and Son were consistent with their love and support and helped with all the day to day things as needed
• The Doctors and Nurses that made up my ‘Health Care Team’ were phenomenal day in and day out
• My friends, family and co-workers were my never ending cheerleaders especially since I continued to work full-time during treatment, albeit from home
• I was even lucky enough to get welcomed into a support group made up of other young local Colorectal Cancer survivors that dropped everything to help me understand what to expect through every single step of my journey (and still do)
• My faith helped me to stay calm, positive and grounded
While this is very out of character for me to step out into the public eye, I am participating in Push for Your Tush locally to raise funds and awareness since I now feel compelled to share my story. Knowing that early detection is key, I ask everyone that reads this to look before you flush to understand what is normal for you and to not ignore or dismiss any noticeable changes. I looked, acted and am extremely blessed that my story/journey continues…