Some Stage 4 CRC patients’ observations after 7 years!
1: Life is the journey, cancer is but a series of speed bumps and detours.
2: Cancer is a team sport! With all the different doctors and medical professionals
involved, it’s easy to lose control. As the patient, be the team coach! No the puck!
3: Pay no attention to life expectancy statistics. They are all out of date and your
objective is to prove them wrong anyway!
4: Ask the doctors lots of questions. If you don’t understand the answers ask them to
explain. If they don’t, get another doctor! If you’re unsure, get a second opinion!
Remember you’re the coach in the most important game, your life!
5: Join a support group. Share your experiences and learn from others. You are not
alone. Fear of the unknown can be paralyzing.
Anonymous CCAC Patient, April 17, 2013
20 months life expectancy November 2006
I was diagnosed with stage IV colorectal cancer in January of 2009. Since then I have been thinking of myself as Stage Four Colorectal Cancer. This may still change, but I understand better every day, that it most likely will not and hopefully would last a long time. In other words, I am learning to live with my cancer. I respect it. It is mine and I intend to heal it.
Like so many cancer patients I decided, that this is an opportunity to make all the positive changes in my life, changes I was planning to make for so long. And I did, almost overnight, and it worked. It did not take long before I started feeling better than ever. I changed my diet, started taking all sorts of supplements, started to exercise more and tried every complementary treatment that managed to convince me of its merits. And I still do, and I still feel great.
A month after the diagnosis I had my primary tumour removed. Pathology report confirmed initial diagnosis and a couple of weeks later doctors started planning my future treatment. I remember the feeling of helplessness, the need to know and understand what is being done to me. Asking relevant questions requires knowledge. I had to learn as much as possible. From day one I wanted to know everything about MY cancer. I wanted to understand it. I had to in order to fight it. I turned to internet. The amount of information overwhelmed me. The dread of chemo was approaching and I was working so hard to get rid of my cancer before it started, before it would have a chance to poison my newly cleansed body… fat chance. The CT scan prior to my first chemo showed significant progression in both my lungs and my liver. The oncologist was talking about palliative treatment and I was feeling healthier than I have ever felt before… Dying…? When…? 6 months… Who knows…? Confusion. This was my lowest point. It lasted just a moment but I know it had the potential of breaking me. Fortunately I quickly remembered that I was feeling great and I could take the chemo no problem. Bring it on… I started in April of 2009 and I tolerated it quite well.
At the same time I was exploring the world of support groups. Every one of them had so much to offer, yet I kept on looking for a group focused on understanding MY disease and treatments. My husband stumbled upon Barry Stein’s story and found out about the Colorectal Cancer Association of Canada Cancer Coach Conference that was taking place in Toronto in May of 2009. We met this group of wonderful people, all touched by MY cancer and all bend on educating colorectal cancer patients about the disease and treatment options.
My wish has been granted?
This experience and continuous CCAC group support gave me new confidence. I realized, I would never know all about my cancer but there will always be something new to learn. Now I have back-up, advice, people who know and who can help. It helped me relax. It helped me accept the treatments.
In February of 2010 I had liver resection followed by more chemo and in early 2011 I had my left and then my right lung resected. More chemo followed and in January 2012 my second liver resection was done. Another set of lung resections was scheduled in 2012 but it fell through because of recurrence in my liver. In July 2012 I started chemo yet again. I was told that surgery is not an option for my liver or my lungs anymore, so with the CCAC’s help we looked for other options. She found one and I started radiation treatment for my lungs in January 2013. This took 2 months and on April 15/13 I had full body PET/CT done at the clinic where I received radiation treatment. Suddenly the focus changed. The scan revealed several tumors in my brain. Fortunately they were discovered early. I completed full brain radiation and now at the end of May 2013 I am back on chemo – my favourite FOLFIRI & AVASTIN. Awaiting good news
I am here. I feel great. Yes, I know, I most likely will die of MY cancer.
When? Who knows….?
My colon cancer was diagnosed in April 2009; I had no family history or symptoms and had waited eighteen months for my routine colonoscopy (I was 55 years old). I had microsurgery, and began chemotherapy in July. The day the bottle providing the 3-day infusion of 5-FU and Oxaliplatin was removed I had the first of several heart spasms that I experienced throughout the summer, including a minor heart attack. This was an unusual but not unique reaction to 5-FU, and we decided to try again, but with a one-time IV application rather than a slow infusion. I received this in hospital so I could be observed. (Fortunately I was observed by my husband Ron, because the pump was incorrectly programmed.) I was OK for a few weeks, and then became very ill, again with a severe reaction to the 5-FU. I was in hospital for 3 weeks, including almost a week in the ICU.
As I was not able to tolerate the 5-FU it was not much of a surprise when my cancer recurred. More surgery. This time the chemotherapy we used was the drug raltitrexed, with oxaliplatin. Around this time we began attending meetings of the Colorectal Cancer Resource & Action Network (CCRAN), run by the Colorectal Cancer Association of Canada (CCAC). Raltitrexed is not funded for colon cancer, but thanks to the information, advice, and encouragement of CCRAN and the CCAC we were able to obtain some funding from the company that makes the drug, plus some from our insurers.
Over the next 2 years I was on medical leave from my position as Director of Bioethics at the Hospital for Sick Children, and spend most of that time receiving chemotherapy. Throughout this time we were assisted in our decision making by information we received from summaries of current research compiled by CCAC’s Director of Education and Clinical Information. It was also helpful to hear the stories of others who attend the CCRAN meetings.
In the fall of 2012 I learned that Mount Sinai Hospital in Toronto was offering surgery combined with heated intra-peritoneal chemotherapy (H.I.P.E.C.) to patients who fit the appropriate criteria. Dr. Andrea McCart and her team performed my 11-hour surgery in February 2013. As of May 2013 I am recovering well, thanks to the excellent care I received from my great oncological team at the Juravinski Cancer Centre and the surgical group at Mt. Sinai Hospital, and the support of members of the CCRAN and CCAC, and my friends and family.
By Christine Harrison
Despite scattered clouds and drizzling rain, 100 participants braved the weather to “Get Out There and Move” last Saturday in support of the Colorectal Cancer Association of Canada’s (CCAC) activity filled day long event promoting healthy lifestyles and cancer prevention.
The event took place at the Beaver Lake Pavillon in Mont-Royal Park, Montreal and raised $8,203 for the association.
For a minimum donation of $25 participants had a wide range of activities and fitness classes to choose from that were guaranteed to get their butts moving in one way or another.
Whether it was Yoga, Pilates, Biking, Hiking, Kickboxing, Zumba, Bootcamp, Essentrics, or taking a group walk with your dog – there was something for everyone! And at the end of it all, a delicious and healthy lunch was given to each participant.
Special guest Janna Boloten, Nutritionist was also on site to provide valuable insight on healthy eating habits and cancer preventing foods.
With the right combination of diet and regular exercise everyone can lower their risk of developing colorectal cancer or other diseases. Whether or not you were able to join us last week, we encourage you to find any outdoor activity that you love and make it part of your weekly routine this summer.
Special thanks to all our sponsors including Broccolini, Dorchester Investment Management, Pembroke, Canderel, Richter and the I-store, out outstanding trainers and group leaders, and our dedicated participants, some even all the way from Ottawa, that put their blood sweat and tears into making the event both fun and educational.
To view the entire event photo album please visit our facebook page.
On May 15, 2013 The Colorectal Cancer Association of Canada participated in the symposium titled “CANCER AND CULTURE: A DIFFERENT APPROACH” sponsored by la Coalition Priorité Cancer au Québec and l’Alliance des communautés culturelles pour l’égalité dans la santé et les services sociaux (ACCÉSSS). The symposium discussed the various differences of ethnocultural clients, patient-caregiver relationships in the intercultural context, focusing in particular on ways to improve the understanding and participation of patients and their families in public health programs for prevention and screening, and cancer treatment.
For more photos, please visit our Facebook page.
Every year, approximately 85,000 Canadian women are diagnosed with cancer; of these, over 4,000 women are between the reproductive age range of 20 and 39. Fertility and motherhood are important quality of life issues for young women with a history of cancer. However, very limited data are available to document how fertility matters are addressed when they receive cancer care in Canada.
The CCAC is proud to support a doctoral research study entitled, “Cancer, fertility and motherhood: Addressing the fertility needs of young women with cancer in times of stress, uncertainty, and time pressure”. The study aims to explore the retrospective views of female cancer survivors on fertility matters related to cancer care, and their perspectives on preserving fertility through assisted reproductive technologies.
1.Female cancer survivor
2.received a cancer diagnosis after year 2000
3.between the age of 18 and 39 when diagnosed with cancer
4.received cancer treatment in Canada
5.have completed cancer treatment.
Should you meet the above criteria, please support this research by participating in this quick survey which takes approximately 30 to 45 minutes to complete. Survey respondents can participate in a draw to win a $50 Amazon gift certificate.
How to begin the web-based survey:
Visit the project website www.cancerandfertility.com for more information or access the e- survey directly at http://fluidsurveys.com/s/fertility.
The Giant Colon Tour stopped in Quebec City for three days from May 9 -11 as part of the Salon Vancances Évasion in Les Galeries de la Capitale. Over 6,500 people passed through our fabulous interactive 40 ft. long colon.
Many thanks to our great volunteers Jeannette Pane and Jacynthe Boudreault who joined staffers Dave Black and Frank Pitman to help spread colorectal cancer awareness.
The CCAC wants YOU to lower your chances of developing cancer and other diseases and that is why we need you to GET OUT THERE & MOVE! with us at Mount Royal Park this Saturday May 11th, from 9 a.m. to 2 p.m.!
With the goal of advocating healthy lifestyles and cancer prevention, despite one’s age or background “Sortez! Bougez!” / ‘Get Out There & Move,’ will encourage participants to become more physically active in order to reduce their chances of developing colorectal cancer and other diseases.
Individually or within a team, participants will engage in various athletic outdoor activities of their choice, either on their own (walk, jog, bicycle, hike etc.) or by enrolling themselves in one, two or all of the offered classes or group activities – the sky is the limit!
Trial and Error
Try out as many activities as you can to see what works for you and add the ones that you enjoy into your weekly exercise routine.
Some of our planned group activities include:
Join instructor Phyllis Frost for her body blasting boot camp that is guaranteed to get participants to break a sweat and push their limits.
Boot Camp is a type of outdoor group exercise class that mixes traditional calisthenic and body weight exercises with interval and strength training. While there are a variety of styles of fitness boot camps, most are designed in a way that pushes the participants harder than they’d push themselves and, in that way, resemble a military boot camp.
Exercises include; sprints, push ups, plyometric and interval training with little rest in between sets.
Instructor Kim will be teaching a 1 hr Hatha Yoga class specially designed for the developing yoga practitioner, it is slow-paced, gentle and focused on breathing and meditation. This is a good form of yoga for beginners to learn poses, relaxation techniques and become comfortable with yoga.
Ancient Yogis believe that for man/woman to be in harmony with the environment, one must integrate the body, the mind, and the spirit. For these three to be integrated, emotion, action, and intelligence must be in balance.
Yoga exercises improve circulation, stimulate the abdominal organs, and put pressure on the glandular system of the body, which can generally result to better health.
Join David as he leads a group through the beautiful bicycling trails of Mont-Royal. Cycling is one of the best all-around activities for improving health, it is easy to do and can be adapted to physical level.
Here are some of the reasons why you should get your wheels moving:
• Good for your heart – improves cardiovascular fitness and decreases risk of coronary heart disease
• Good for your muscles – tones and builds your lower body muscles (calves, thighs and butt)
• Good for your waistline – ramps up your metabolism and burns a lot of calories
• Good for your lifespan – great way to increase longevity
• Good for coordination – combines feet, hands and body weight movement
• Good for your mental health – proven study
• Good for your immune system – strengthen your immune system and increases general health
Join former Canadian champion Herby for a kickboxing class, guaranteed to knock you out – in a good way of course!
The class will begin with 5-10 minutes of warming-up, skipping and stretching techniques. Participants will then partake in different kickboxing drills with a partner or with Herby. The class will finish with push-ups and abs exercises.
Kickboxing has been on the exercise scene for many years and it is no wonder why with all of the amazing health benefits tied to it. By combining martial arts and heart pumping cardio, kickboxing provides a high energy workout that helps quickly melt away fat, while toning and strengthening core muscles at the same time.
Kickboxing is also a great activity to pick up some valuable defense moves or let out any pent up aggression or stress. Skip the beer after a hard day’s work by opting for a healthier way to get out some of the day’s frustrations out of your system.
Join Kim again for a one hour Pilates class that helps condition the body, while building flexibility, muscle strength in the legs, abdominals, arms, hips, and back. It puts emphasis on spinal and pelvic alignment developing a strong core and improving coordination and balance.
By emphasizing proper breathing, correct spinal and pelvic alignment, and concentration on smooth, flowing movement, you become acutely in tune with your body. You actually learn how to control its movement.
In Pilates the quality of movement is valued over quantity of repetitions. Proper breathing is essential, and helps you execute movements with maximum power and efficiency.
Although a gentle workout for the most part, pilates is also very challenging and can definitely make you break a sweat.
Try a class to help develop a stronger core (flat abdominals and a strong back), gain long, create an evenly conditioned body, improve sports performance, and prevent injuries and last but not least get you to learn how to move efficiently.
Instructors Vered and Lauren’s Zumba class will get you up off your feet and dancing – what better way to exercise. Zumba Fitness® is a Latin-inspired dance-fitness program that blends red-hot international music, and contagious steps to form a “fitness-party” that is downright addictive.
Once selected activities are completed, participants will reconvene in the beautiful Pavillon du Lac-aux-Castors to pick up their healthy free lunch kit. CCAC staff and educators will be on-site answering questions and handing out information on colorectal cancer, its prevention and the importance of getting screened for this disease.
For more details on the event or bios on our guest instructors please visit our website.
RAIN OR SHINE THIS DAY IS ON!!!
Step into the ring and join the fight against colorectal cancer by purchasing a limited edition Ariel Helwani “Helwani Nose” T-Shirt. Widely regarded as one of the best journalists in MMA today, Ariel is known for having a “nose” for Mixed Martial Arts news. He’s interviewed all of today’s top fighters on MMAFighting.com and FUEL TV. Now you can show your support to your favorite MMA journalist by sporting this limited edition charity tee inspired by Nike and Helwani’s quirky on-screen personality.
All of the proceeds from sales will be donated to the Colorectal Cancer Association of Canada (CCAC), where the money will be put to good use for the “3 pillars” of that cause: Awareness, Support & Advocacy. The slim fit and comfy cotton fabric of this ‘Helwani Nose’ shirt is just the thing to inject some fresh style into your spring wardrobe. Order yours today!
The Giant Colon was one of the major exhibitors at the 1st Annual Calgary Zoomer Show on April 6th and 7th. Thousands of friendly Calgarians passed through the interactive exhibit. The CCAC received much praise from visitors on our unique awareness efforts.
CSGN Canada West Director Connie Wescott and colon cancer survivor Dave Dalen joined CCAC staff members Dave Black and Frank Pitman to greet the visitors and provide information on crc screening and patient support. Thank you Calgary for your Western hospitality.