Archive for June, 2016
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…
About Colorectal Cancer
Colorectal cancer is a malignant tumour that starts in cells of the colon or rectum.
1 in 14 men and 1 in 16 women are diagnosed with colorectal cancer each year in Canada. Approximately 25,100 Canadians were diagnosed with CRC in 2015. It is the 2nd deadliest cancer, although the disease is more than 90% curable if detected early. Colorectal cancer is Preventable, Treatable and Beatable!
Colorectal cancer most often touches individuals over the age of 50 and over ninety percent (90%) of patients are over 55 years of age. Ten percent (10%) of new colon cancer patients however are under the age of 50. Individuals with certain risk factors such as a family history of polyps, colon cancer or genetic alterations, have an increased risk of developing colon cancer at a younger age. Sixteen percent (16%) of patients under the age of 40 have been reported to have predisposing factors and twenty-three percent (23%) had a family history of the disease.
Table 1: Number of new cases of colorectal cancer diagnoses in 2015 by age group in Canada
About the Colorectal Cancer Association of Canada (“CCAC”)
The CCAC is dedicated to colorectal cancer awareness and education, supporting patients and their families, and advocating on their behalf. The CCAC raises awareness and provides important and practical information to colorectal cancer patients, young and old. Together with the Never Too Young (“N2Y”) coalition, we provide support and information to young patients in Canada who have experienced early onset of the disease.
The Never Too Young Coalition is united to take action on young onset of colorectal cancer through action, education, and research. The Coalition includes medical professionals, patient advocacy organizations, cancer survivors and caregivers working to educate the public about this growing issue and to reduce the number of late stage young-onset colorectal cancer cases.
As the leading national colorectal cancer patient advocacy organization in Canada, we’re dedicated to bringing together the brightest minds to increase screening and to promote equal and timely access to effective treatments to improve patient outcomes.
Symptoms of CRC
• Blood in the stool
• Narrower-than-normal stools
• Prolonged diarrhea or constipation
• Feeling that the bowel does not completely feel empty
• Abdominal pain or discomfort
• Loss of appetite, unexplained weight loss
• Constant fatigue, anemia
• Nausea, vomiting
Family History of Colon Cancer or polyps
About 10% of the population has a first degree relative with colon or rectal cancer.
First and second degree relatives (children, siblings, grandchildren, nieces, nephews) of a person with a history of colon cancer are more likely to develop CRC themselves, especially if their relative had the cancer at a young age. If several close relatives have a history of colon cancer, there is an increased risk. In view of this increased risk, both the U.S. Preventative Services Task Force (USPSTF) and the Canadian Task Force on Preventive Health Care (CTFPHC) recommend screening as of the age 40 for these high-risk individuals or ten years earlier than the youngest age of colorectal cancer diagnosis for any affected relative.
Changes in certain genes increase your risk of colon cancer.
Hereditary nonpolyposis colon cancer (HNPCC or Lynch Syndrome) is the most common type of inherited colon cancer, accounting for about 2% of all colon cancer cases. It is caused by changes in a HNPCC gene. If not closely monitored, most individuals with this altered gene will develop colon cancer, with the average age at diagnosis being 42-45, and 35-40% being diagnosed before the age of 40. General screening guidelines recommend colonoscopy every 1-2 years, beginning between the ages of 20-25, or five years younger than the earliest age at diagnosis in the family, whichever is sooner.
Much rarer is familial adenomatous polyposis (FAP) an inherited condition in which hundreds of polyps form in the colon and rectum. It is caused by a change in a specific gene called APC. Unless FAP is treated, it usually leads to colon cancer by age 40. FAP accounts for less than 1% of all colon cancer cases.
Family members of individuals who have HNPCC or FAP can have genetic testing to check for specific genetic changes. For those who have changes in their genes, healthcare providers may suggest ways to try to reduce the risk of colon cancer or to improve the detection of this disease. For adults with FAP, the doctor may recommend the removal of all or part of the colon and rectum.
Ulcerative Colitis or Crohn’s Disease
A person who has had a condition that causes inflammation of the colon (such as ulcerative colitis or Crohn’s disease) for many years is at an increased risk of developing colon cancer. Patients should therefore be screened regularly.
Other factors contributing to young-onset of colon cancer have not been definitely identified, but we do know they occur with an increased prevalence of obesity and diabetes. Factors that may increase your risk of colon cancer include:
• There is approximately two times higher risk of developing colorectal cancer later life if you are overweight or obese during adolescence.
• A diet high in red or processed meat and low in fiber, vegetables and fruits.
• Inactivity: 12-14% of colorectal cancer could be attributed to lack in physical activity
• Increase consumption of alcohol
• Racial and ethnic background
Statistics and Data
• Colon cancer incidence and mortality rates are increasing in the young-onset population while decreasing in those over 50.
• About 30% of young-onset colorectal cancer cases develop in those with a family history of the disease or genetic disposition.
• Young-onset rectal cancer incidence has increased at nearly twice the rate of young-onset colon cancer.
• About 72% of cases of colorectal cancer in young people arise in the colon and about 28% in the rectum.
• Younger adults were more likely than older adults to be diagnosed with late-stage cancers.
• Rates have been increasing in all younger age groups with the highest increases for the 15-29 years old, followed by the 30-39 years old and then 40-49.
• The increase is more rapid in males compared to females.
• Diabetes has been associated with up to a 38% increase in colon cancer risk and 20% increase in rectal cancer risk.
Research shows that a high fat diet is a risk factor for colon cancer. Some studies have also suggested that a diet high in fiber and a lifestyle that includes moderate exercise are helpful in preventing the disease. Be aware of symptoms and getting recommended screenings are key factors in prevention of the disease.
After speaking to family members and gathering your family health history, speak to your primary care provider about ways to improve your diet and lifestyle to prevent colon cancer and about scheduling preventative screenings when necessary. A healthy lifestyle and healthy body weight is important for prevention of all cancers.
• Men and women at average risk, screening should be done at least every two years starting at fifty years old with either FOBT (fecal occult blood test) or FIT (fecal immunochemical test). Positive FOBT or FIT tests should be followed up with a colonoscopy.
• Screening has the potential to prevent colorectal cancer because polyps found in the colon (precursors to cancer) can be removed during a colonoscopy screening. Furthermore, being screened at the recommended frequency increases the likelihood that when colorectal cancer is present, it will be detected at an earlier stage and is more likely to be treatable and curable.
Table 2: Canadian Colon Screening Guidelines
Tests have been developed that look at the activity of many different genes in colon cancer tumors. These tests can be used to help predict which patients have a higher risk that the cancer will spread.
Lynch Syndrome (see also previous section of genetic alterations)
Lynch syndrome is a mutation of a gene that is responsible for fixing errors in your DNA. Lynch Syndrome, also known as hereditary nonpolyposis colon cancer (HNPCC), is an hereditary disorder caused by a genetic mutation in which affected individuals have a higher than normal chance of developing colorectal cancer, endometrial cancer, and various other types of aggressive cancers, often at a young age. To prevent colorectal cancer, people with Lynch Syndrome should undergo a colonoscopy every 1-2 years, starting in their twenties. Doing this will reduce the risk of colorectal cancer by 77%.
People with Lynch syndrome have a mutation of the MMR gene, which means their bodies are less able to fix errors in the DNA. Consequently, a person with Lynch syndrome is more likely to get certain types of cancer. Lynch syndrome increases the risk of getting colorectal cancer by 80 percent and endometrial cancer by 60 percent. Lynch syndrome may also lead to other cancers, such as small bowel and stomach cancer. Lynch syndrome accounts for 2- 4% of all colorectal cancer cases.
Treatments and Effects
1. Newer surgery techniques:
Surgeons are continuing to improve their techniques for operating on colorectal cancers. They now have a better understanding of what makes colorectal surgery more likely to be successful.
Laparoscopic surgery is done through several small incisions in the abdomen instead of one large one, and it’s becoming more widely used for some colon cancers. This approach usually allows patients to recover faster, with less pain after the operation. Laparoscopic surgery is also being studied for treating some rectal cancers, but more research is needed to see if it as effective as standard surgery.
With robotic surgery, a surgeon sits at a control panel and operates very precise robotic arms to perform the surgery. This type of surgery is also being studied.
Different approaches are being tested in clinical trials, including:
• Five most common chemotherapy drugs: 5-fluorouracil (Adrucil, 5-fu), capecitabine (Xeloda), oxaliplatin (Eloxatin), and irinotecan (Camptosar).
• Combination of drugs known to be active against colorectal cancer, such as irinotecan and oxaliplatin, improve their effectiveness.
• Combination of chemotherapy with radiation therapy, targeted therapies, and/or immunotherapy.
3. Targeted therapy:
Several targeted therapies are already used to treat colorectal cancer, including bevacizumab (Avastin), cetuximab (Erbitux), and panitumumab (Vectibix). Doctors continue to study the best way to give these drugs to make them more effective.
Targeted therapies are currently used to treat advanced cancers, but newer studies are trying to determine if using them with chemotherapy in earlier stage cancers as part of adjuvant therapy may further reduce the risk of recurrence.
Researchers are studying several vaccines to try to treat colorectal cancer or prevent it from coming back after treatment. Unlike vaccines that prevent infectious diseases, these vaccines are meant to boost the patient’s immune reaction to fight colorectal cancer more effectively.
Because cancer treatments may damage healthy cells and tissues, side effects are common. Side effects depend mainly on the type and extent of the treatment. While many effects may be the same, there are some unique challenges those diagnosed and going through treatment under age 50 may encounter, including:
• Relationships with family and friends
• Impact on young children
• Dating issues
• Infertility issues
• Intimacy issues
• Career/workplace issues
• Financial issues
• Psychological issues
1. Ahnen et al. (2014). The Increasing Incidence of Young-Onset Colorectal Cancer: A Call to Action. Mayo Clinic.
2. McKay et al. (2014). Does young age influence the prognosis of colorectal cancer: a population-based analysis. World of Surgical Oncology.
3. Patel, P. & De, P. (2016). Trends in colorectal cancer incidence and related lifestyle risk factors in 15-49-year-olds in Canada, 1969-2010. Cancer Epidemiology.
4. Stigliano et al. (2014). Early-Onset Colorectal Cancer: A Sporadic or Inherited Disease? World Journal of Gastroenterology.
5. Alive And Kickn. (2015). http://aliveandkickn.org/
6. Canadian Cancer Society. (2016). http://www.cancer.ca/en/?region=on
7. Colon Cancer Alliance. (2016). http://www.ccalliance.org/
8. Colon Cancer Coalition. (2016). http://coloncancercoalition.org/
9. Colorectal Cancer Association of Canada. (2016). http://www.colorectal-cancer.ca/en/
10. Fight Colorectal Cancer. (2016). http://fightcolorectalcancer.org/
11. Present and Future Directions in Research. (2013). Michael’s Mission. http://www.michaelsmission.org/
12. Stop Colon Cancer Now. (2014). http://stopcoloncancernow.com/
13. What you need to know about your colon. (2013). Colon Cancer Challenge Foundation. http://www.coloncancerchallenge.org/
“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.
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 firstname.lastname@example.org.
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. 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!
On December 2, 2014, I went for my annual physical. I was feeling to be in perfect health, no issues whatsoever. During the exam my doctor found microscopic traces of blood after doing a rectal exam to check my prostate, which all men over 40 dread. The doctor said the finding was probably nothing but referred me to a GI doctor for further investigation.
I blew off making the follow up appointment for a few weeks until I just happened to stumble across the paper with the GI doc’s info on my generally messy office desk where it could have easily gotten lost and the referral forgotten. I went to see the GI doc in early January, he concurred with my primary care doctor’s opinion that it was probably nothing based on my young age but recommended we schedule a colonoscopy just in case.
A few weeks later (5 days after my 42nd birthday), I got scoped… when I awoke from anesthesia the doctor informed me that he found a 2.5cm tumor in my rectum. Obviously, this news hit me and my wife like a ton of bricks. The day of the diagnosis still seems likes a dream in my memory. I remember feeling like it can’t be real. Although a CT scan I had later that day revealed an enlarged lymph node, it showed no spread to my vital organs. My diagnosis was classified as Stage IIIB rectal cancer.
The anticipation of treatment came with a lot of fear and uncertainty. I worried not only about how it would affect me, but I had concerns for how my family would handle it. My kids were 4 and 7 at the time, and while we felt it was important for them to know the truth, their daddy had cancer; we wanted to be careful not to scare them. I worried about how my business would function without me, as I run a small software company and play a large role in the day-to-day management responsibilities.
Treatment itself was challenging, but I suffered no complications and managed to deal with the side effects of chemotherapy relatively well. I was lucky that I had a great response to chemotherapy and was therefore able to avoid radiation. I never really felt like a cancer patient except for maybe on a handful of days.
Surgery brought some adjustments to the new anatomical structure of my GI tract, but again I was lucky to avoid needing “a bag” and for the most part function returned to normal.
Looking back on my cancer journey I don’t consider myself to have been unlucky for having developed this disease, but rather I consider myself very fortunate for having found it relatively early, for having responded well to treatment and for being on the road to full recovery.
I was lucky to have such 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.
RECENT STUDIES SHOW COLORECTAL CANCER DOES NOT AGE DISCRIMINATE. YOU’RE NEVER TOO YOUNG TO BE AWARE & PREPARED
Reports from across Canada show doctors are observing a new trend in colorectal cancer that cannot be ignored nor explained – a “rapid increase” in the number of patients being diagnosed under age 50.
A new study, led by doctors from the University of Toronto, looked at Canadian Cancer Registry data from 1997 to 2010 and found that incidences of colorectal cancer rose by:
• 0.8 per cent per year for people in their 40s,
• 2.4 per cent per year for people in their 30s, and
• 6.7 per cent per year for those between ages 15 and 29.
Thankfully awareness campaigns and advocacy to increase the accessibility of colorectal cancer screening has been responsible for declining rates in people over 50 in the last few years. However, these new reports are a reminder that there is still so much more work to be done.
This year, the CCAC was proud to join forces with the Never Too Young Coalition (N2Y), a branch of Colon Cancer Alliance. Their mandate, like ours, is to raise awareness about the disease, preventative screening and to provide much needed information to the younger Canadian population about the signs and symptoms of the disease, particularly how to avoid a misdiagnosis, which according to studies is occurring more frequently due to the age shift.
Although it is evident that more research is needed to determine the cause of this age shift, we are encouraging doctors and patients to become more vigilant and conscience as the signs and symptoms of colon cancer can often be mistaken for other, less serious issues. The longer it takes for a diagnosis the harder it is treat, which is key in survival.
Risk factors for colon cancer
The fact that incidence is rising only among younger people suggests “lifestyle” factors are at play, but the evidence of this is not concrete. Pay attention to your body and if you have any of these risk factors, talk to your doctor – take charge of your health!
• Family history of colon cancer or polyps: First and second degree relatives of a person with a history of colon cancer and polyps are more likely to develop this disease, especially if the relative had the cancer at a young age
• Genetic Alterations: Changes in certain genes increase your risk of colon cancer. Those with syndromes like hereditary nonployposis colon cancer (HNPCC or Lynch Syndrome) or Familial Adenomatous Polyposis (FAP) should be screened earlier than 50
• Ulcerative Colitis and Crohn’s disease
• African Americans should be screened starting at age 45, or sooner if you have other risk factors or symptoms
• Lifestyle factors, like eating processed and red meats, a lack of dietary fibre, a lack of physical exercise, obesity, alcohol, smoking, diabetes and genetics
June 5-11 will mark the second annual “Young Survivors Week,” connecting with patients, survivors, and caregivers to create buzz around young onset colon cancer. Join us and N2Y as we spread the word via social media by sharing stories and information to help others understand that IT can happen to anyone.