Spotlight on Adolescent and Young Adult (AYA) Oncology

It has been a year since I started in my position as a pediatric, adolescent and young adult oncologist in Edmonton. The area of adolescent and young adult (AYA) oncology is a relatively new sub-specialty. It was born from concerns being raised that the cancer survival rates for the AYA population were not improving to the same degree that the survival rates for children and adults were improving.  There are many questions still yet to be answered as to why this difference in survival exists. At the same time it was recognized that there was a need to better understand the personal challenges faced by AYAs that are also different from those of children and older adults.

Archie Bleyer, a pioneer in the field of AYA oncology suggests that some of the unique challenges facing AYAs and their caregivers include:

  • Lower rates of enrollment to clinical trials often due to limited access to clinical trials to which they are eligible.
  • Cancers diagnosed in AYAs may be named similar to cancers diagnosed in children or older adults; however, the disease biology and treatment tolerances of this age group has proven to be different.
  • Reported poorer adherence to therapies compared to the older or younger patients.
  • Adolescences and young adulthood is a time of ongoing psychosocial and developmental transition. These transitions, such as becoming an independent adult, choosing a vocation and starting a family can be challenging. When a diagnosis of cancer is made during this time, the challenges can be increased.
  • Delay in diagnosis is common for AYA. Many people believe that cancer will not occur in the young, so symptoms of a cancer are often attributed to an injury or a benign condition.

In the last year, I have been involved in the care of several adolescents and young adults and have witnessed many of the challenges Bleyer described. In Alberta, regardless of age, expert cancer care is provided regardless of whether the AYA is manged through a pediatric or adult oncology program. Increasing the number of clinical trials that are available to the AYAs diagnosed with cancer as well as increasing the number of AYAs participating in clinical trials has become an international priority. In Alberta this is also a priority. Raising awareness of the unique needs of AYAs among all aspects of cancer care is another priority - from diagnosis to survivorship.

The Alberta Cancer Foundation recognizes the importance of understanding more about the experience of teenagers and young adults that are diagnosed with cancer. I am thankful to the Foundation for their support of the upcoming provincial workshop, AYAs with Cancer -  Building a Roadmap Towards Improved Patient Outcomes. At this workshop, stakeholders of AYA cancer care including survivors, health care team members, administrators, funding agencies and advocacy groups will come together to both raise awareness of the unique aspects and needs of AYAs from the time of a diagnosis of cancer through survivorship and to start building provincial strategies to better needs these unique needs.

 ~By Guest Bogger & AYA oncologist Dr. Sarah McKillop

Nutrition & Cancer: What’s the Link?

It has been suggested that about one-third of all cancers can be prevented by eating well, being active, and maintaining a healthy body weight. 

In other words, if we all strive to lead the healthy lifestyle described above, we can prevent one out of every three cancer patients from ever having to endure the struggles that come with any cancer journey.

I am excited to have the opportunity to write a series of blog posts on the link between nutrition and cancer. There are a ton of messages out there on nutrition and how what we eat impacts our health. It can become quite confusing trying to sift through all of this information and figure out what is accurate and relevant to you and your family! Furthermore, nutrition information is sometimes tough to translate into actual food. Perhaps you’re aware that fibre is important for cancer prevention, but what exactly is fibre and how can you get more fibre-containing foods into your everyday diet? As a Dietitian, I will provide you with reliable and relevant information on how what we eat affects our risk for cancer. I also hope to provide you with some practical tips on how this information actually translates into the food you eat, and simple suggestions for how you can improve your diet.

Small diet and lifestyle changes today can have a huge impact on your cancer risk tomorrow. It doesn’t have to be as complicated and cumbersome as it sometimes seems. Let’s work together to make some simple changes to try and work towards a healthier future!

~By Guest Blogger & Dietitian Meagan McLavish of Infuse Nutrition

Obturate: To close or block up

I thought I’d start this post with a definition of a word that you’ve probably never heard before.

Obturate: To close or block up

For some people with head and neck cancer, they know this word very well. With a little spin on the end of it. I’ll get to that in a bit. But first, look at the photo* below. 

It’s a picture of an upper jaw. You can see that part of it is missing. It was removed to get rid of a tumor. The space that you are looking into is the nasal cavity.

Now, imagine taking a sip of coffee with that type of opening in your mouth. Any idea what might happen? If you figured that it would get pushed up into your nose, you’re correct.

The same thing happens with speech. Sound waves are lazy little things. They’ll find the easiest way out. In this case, the opening into the nasal cavity is an easy escape route. The problem is, when sound waves go in that direction, speech becomes very muffled and distorted.

The other thing you might have noticed is that there are teeth missing. Without these, it would be impossible to chew on that side of the mouth.

For all these reasons, we need to create something that will block up, or obturate, the opening. That thing is called an obturator. You’ll see what this looks like in the picture below.

You are looking at the top of it. The pink part fits into the opening. The silver part clips onto the remaining teeth. In my last blog post, I talked about my patient, Ted. He had a prosthesis similar to this. He liked to call it the Starship Enterprise. Not sure that everyone names theirs. But he did.

Here’s what it looks like when it’s in the mouth. Pretty nice smile, if you ask me.

My question, way back at the turn of this century, was ‘did these really work?’ As you can imagine, it was also a question that patients asked. So, I set off on a mission.

I assessed speech in twelve patients. I did this three ways. The first was with a machine that measures how much sound is coming through the nose. The second was with a machine that tells us if there is an opening in the mouth that shouldn’t be there. The third was to record speech and have listeners write down what they thought patients were saying.

This was done at three different times – before surgery, after surgery but with no obturator, and after surgery with an obturator.

What did I find?

Obturators were successful at restoring speech to the way it was before surgery. Speech without an obturator, not surprisingly, was very abnormal. I also found that when the soft palate (the soft part of the roof of the mouth) was involved, it became more difficult to get speech exactly right.

This was really important information because it helped me counsel patients about what to expect based on the surgery they were going to have.

But what about swallowing and other things?

It became quite clear to me that an obturator wasn’t just about speech. This was confirmed again recently by someone I know from the United States. He had cancer in his top jaw and wears an obturator. He sent me an email just a few days ago to touch base. When I told him I was writing this blog post, he said, “Thank you! Thank you! Thank you! It’s about time someone…writes about the obturator!!! I cannot thank you enough! The obturator NEEDS to be discussed.” He provided some insights into his experience, but you’ll have to wait until next time because they’re a nice lead in to the next piece of research that I want to share.

If you are interested, here is the reference for the research article I discussed in this post:

Rieger JM, Wolfaardt JF, Seikaly H, Jha N. Speech outcomes in patients rehabilitated with maxillary obturator prostheses after maxillectomy: a prospective study. The International Journal of Prosthodontics 2002; 15(2): 139-144.  

Until next month…

*Photos used with permission.

~By Guest Blogger Dr. Jana Rieger, Director of Research, Institute for Reconstructive Sciences in Medicine

Return. Outcomes. Impact.

The Alberta Cancer Foundation is a different kind of cancer organization.  We raise money and invest in solutions for patients facing cancer.  Our goal is to make sure that Alberta is the most progressive place in Canada for research and treatment.  We actively manage our investments in research and care to make sure that there is a positive return.  And, we believe that the greatest returns we can provide to Albertans are parents returning to their children, people returning to their communities and Albertans returning to their lives.

It’s for these Albertans that I’ve committed to cycling in the Enbridge Ride to Conquer Cancer over the last three years. The Alberta Cancer Foundation has many different fundraising events, more than 400 across the province to be exact, and every member of our team has the opportunity to make a difference right here at home by volunteering, donating or participating. I was drawn to the Enbridge Ride to Conquer Cancer not only because I’m an avid cyclist, but because of the immense impact the event makes each year for the Alberta Cancer Foundation. In the Ride’s six year history, more than $46 million has been raised to help us bring results to Alberta’s cancer patients faster by investing in leading-edge research, treatment and care happening in our own backyard.

Like most riders, I too was motivated to do something because someone close to me heard the words 43 Albertans hear every day: “you have cancer.” In the summer of 2011, it was my Dad who heard those three words and was receiving cancer treatment around the same time I had just accepted my role as CEO of the Alberta Cancer Foundation. I told my Dad that we needed to focus on something positive during his cancer journey and that he should join me in the 2012 Enbridge Ride to Conquer Cancer. My Dad has now participated in three Rides alongside my husband Scott and I. My advice to him, and any rider, is to remember that you’ve already done the hard work by raising thousands of dollars for Albertans facing cancer. What you do on the Ride weekend is added value. If at any point the physical challenge becomes too hard, don’t feel too bad about taking help. The meaning is in the money you raised, the difference it makes and why you ride.

And like every rider, we accepted the additional challenge of fundraising and training for this epic event. Fortunately, we have a dedicated group of family and friends who have supported us along the way. I’ve found that the best way to fundraise is to do so the old fashioned way: ASK! By asking, you give people the opportunity to say yes. It doesn’t matter what amount— the point is that you asked.

I continue to be awe-struck by the excitement, courage and deep personal commitment of the Ride participants each year. Since I ride on the back of a tandem bike with my husband, I have the opportunity to talk to Albertans for the entire 200 kilometres—learning their stories, asking who they’re riding for, encouraging them and most of all, thanking them.  Despite the physical challenge, I am always amazed that they’re still smiling at the end of the two days and are genuinely happy to ride.

This year, I had the pleasure of meeting our oldest rider Dane, who is 84 years old. I thought it was absolutely outstanding that he raised his money like everyone else and was completely up to the challenge. What an inspiration!

I will register to ride again in 2015 to continue accelerating progress towards of our vision of a cancer- free future.  For three decades, the Alberta Cancer Foundation has been “the foundation” of progress for cancer patients in our province.  Over the past 10 years alone, cancer survival rates have increased from 56% to 64%.  This has been made possible by research that has advanced treatment and clinical care – much of it supported by the Alberta Cancer Foundation through the generosity of Albertans across the province. Although the positive outcomes we see today are promising, there’s still much work to be done. Together, with the support of events like the Enbridge Ride to Conquer Cancer, we will redefine the future for Albertans and their families facing cancer.

~By Myka Osinchuk, CEO, Alberta Cancer Foundation

Love is in the air at the Alberta RIde

 

Love is in the air this weekend at the 6th annual Enbridge Ride to Conquer Cancer, as two riders will walk (ride) down the aisle and tie the knot.

This is a fitting way for Sarah Ashby and Mike Beauchamp to officially be married, as their second date was a 30 km bike ride around the Glenmore Reservoir.  It was after that little ride that Mike convinced Sarah to sign up for the big Ride.

“With little reluctance I said “sure”! We just did 30 km, what’s another 200 km?!,” says Sarah.

The couple is a part of One Aim, and regularly take part in training rides with the team. And both agree that participating in the Ride and raising money for cancer research across Alberta is an important goal, but the connection to the event is deeper.

“When you are at the event and you hear the stories, it motivates you to keep going,” says Mike. “It’s seeing everyone’s passion. It’s seeing those who have survived it, it’s motivating to keep going.”

This year Sarah’s mom was diagnosed with cancer.

“I’ll never forget that phone call,” remembers Sarah. “Just thinking about it brings tears to my eyes.”

Despite having to deal with her mom’s new cancer diagnosis, Sarah says this year’s ride won’t take on new meaning.

“I feel like riding before my mom was diagnosed is what made the difference in her prognosis and treatment. It is the money that I and so many others raised last year and in the previous years that will save my mom,” says Sarah. “The money I raise this year is what I hope will save the moms of the future.”

On Saturday when Mike and Sarah make their way down the aisle flanked by fellow One Aim team members, they’ll be surrounded by friends and family, including Sarah’s mom.

“It’s pretty special to share it with that group of people, they’re really more like family,” says Mike.

Sarah and Mike have come a long way since that first ride around the reservoir.