N2Y

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.

Never Too Young for Colorectal Cancer

Never Too Young for Colorectal Cancer

NTY Coalition_final logo Colorectal cancer no longer discriminates on age. While colorectal cancer incidences and mortality rates in Canadians aged 50+ have been declining in recent years due to increased screening and surveillance programs, the opposite is unfortunately being reported for our younger population.

In the last few years, Canadian doctors have observed a rapid increase in the number of patients under age 50 with colorectal cancer. What makes it even more concerning is that they cannot explain why.

The study also found that younger patients are getting diagnoses at later stages making them harder to treat and leading to increasing fatalities. These shocking statistics reveal that there is more work to be done in terms of prevention and treatment of colorectal cancer in Canada – especially for young adults.


In the last year, the CCAC has partnered with the Never Too Young (“N2Y”) Coalition, an organization 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.

Together with the N2Y coalition, the CCAC provides support and information to young patients in Canada who have experienced early onset of the disease.

Young patients may not always understand the signs and symptoms of colorectal cancer, which may delay their seeking medical attention. Symptoms of CRC can vary from blood in the stool, abdominal discomfort, constipation and much more.

According to the Canadian Cancer Society, men are more at risk than women for the disease. Eating processed and red meats, a lack of dietary fiber, a lack of physical exercise, obesity, alcohol, smoking, diabetes and genetics are also identified as risk factors.

Younger patients should consider the following when speaking to their doctors about their inherited risk or symptoms for colorectal cancer:

Family Tree

About 10% of the population has a first degree relative with colon or rectal cancer. If it is evident in your family tree, it is recommended to start screening as early as the age of 25.

Lynch Syndrome

Changes in certain genes increase your risk of colon cancer.
Lynch Syndrome is the most common type of inherited colon cancer, accounting for about 2% of all colon cancer cases. 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%.

References:
http://www.ctvnews.ca/health/rapid-increase-in-colorectal-cancers-among-young-canadians-study-finds-1.2919527

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

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

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

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

Why volunteer?

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

Ways to volunteer

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

Cancer support groups

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

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

Fundraising

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

Testimonial

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

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

Becky de Champlain – “Life is full of challenges, but no challenge is insurmountable”

Becky de Champlain – “Life is full of challenges, but no challenge is insurmountable”

Becky de Champlain “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 Name is Cathy Trottier, I am 42 and this is my story …

My Name is Cathy Trottier, I am 42 and this is my story …

ct My Name is Cathy Trottier, I am 42 and this is my story…

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…

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

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

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

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

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

Keep on fighting!

“It Happened to Me” – Young Survivor Story – Elan Freedy

“It Happened to Me” – Young Survivor Story – Elan Freedy

graphic with logo 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.