Young colorectal cancer patients are different. So is this clinic
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When a body is discovered 10 miles out to sea, it sparks a mind-blowing police investigation. There's a man living in this address in the name of deceased. He's one of the most wanted men in the world. This isn't really happening. Officers finding large sums of money. It's a tale of murder, skullduggery and international intrigue. So who really is he?

I'm Sam Mullins, and this is Sea of Lies from CBC's Uncover, available now. This is a CBC Podcast. I'm Dr. Brian Goldman. This is White Coat Blackheart. Colorectal cancer is the fourth most common cancer in Canada. It's the second leading cause of death from cancer in men and the third leading cause of cancer deaths in women.

With those kinds of odds, second-guessing about what to do and where to go for treatment is probably the last thing you want on your plate. I want you to meet a woman who harbored those doubts and found another cancer clinic and maybe a better shot at long-term survival. Thanks to smart advocacy, a community on social media, and a bit of good luck. Are you Catherine? I am. I'm Brian. Nice to meet you, Brian. Nice to meet you. Is that water for us? That is for you. Look at that. Come here. Come here. Nice to meet you. Yeah.

Catherine Mifsud greets me and White Coat producer Samir Chhabra like she's known us for years. She's got shoulder-length blonde hair, kind eyes, and an easy grin. Everything about her says everyday middle-aged woman, except for the extraordinary story that brought her here to the young adult colorectal cancer clinic at the Odette Cancer Center at Sunnybrook Health Sciences Center in Toronto. Colorectal cancer in people under the age of 50 is becoming much more common. This clinic is for people like Catherine.

My name is Catherine Mifsud. I am 49 years old. I work for a medical technology company as a patient services supervisor. I manage a small team and what we do is we actually support patients with use of our medical technology and products.

and just help provide education and help them advocate for themselves. This is also where I find my passion for helping other people has come from, has built that skill set throughout the years. Catherine is also a survivor of colorectal cancer. These days, she advocates on behalf of Colorectal Cancer Resource and Action Network, or CRAN.

It's a network of patients and loved ones who have dealt with colorectal cancer. Its mission is to increase awareness, especially for Canadians under the age of 50. Catherine does for CRAN what it did for her when she was first diagnosed. You are also a young person with colorectal cancer survivor. I am, yes. So I was...

diagnosed in January of 2023 with early stage stage three cancer. I was diagnosed with it initially in the sigmoid junction and upon... Just kind of lower part of your large intestine before the rectum. Right, correct. What were your initial symptoms?

My initial symptoms actually were abdominal pain, rectal bleeding, and also back pain actually was the other symptom that I had associated with this. And previously we did a show about one young person.

under the age of 50 whose symptoms were ignored for a long time. And in fact, you know, the possibility of colorectal cancer was dismissed because he was too young. Did that happen to you? Yeah, it did happen to me. My symptoms actually began in September of 2022. And because of my lack of awareness around the disease as well, I mean, I didn't really pay attention to it. It was on and off a little bit.

In November of 2022, I actually finally went to my physician for the first time. It was a phone call. I described my symptoms. I described what was going on, and it was dismissed. It was, you know, eat more vegetables, get more exercise. How long did it take to get the diagnosis, the colonoscopy? Three months later.

I called her and it was just before Christmas. I had been suffering from increased abdominal pain, increased bleeding. And even at that point, the doctor was reluctant to give me that colonoscopy. Did you actually think you might have cancer? No, no, not at all. So I was thinking maybe hemorrhoids, maybe like anal fissure or something to that effect. Cancer wasn't on my mind. I was too young.

You must have been shocked. Blown away. I was 47. I'm in the middle of my life. I'm in the middle of my career. I have three young adult children at home still. Young adult children. How old are they? They are now 24, 21, and 19. But that was one of the worst things as a parent you ever have to tell your kids. The best thing was to be transparent with them. And it was...

It was a really devastating time for all of us. Like my son, which I was surprised, he was like, it's okay, mom, you're going to be all right. You know, we're going to be here for you. My daughter, same thing. Like everybody kind of all banded together and was helpful and they'd grow up a little bit faster, but I knew I couldn't hide it from them. Catherine ticks off many of the boxes that define a young person with newly diagnosed colorectal cancer.

in the prime of her career, kids still living at home, and along with those, a gnawing fear of missing out on the right treatment. Something didn't sit right with her. The plan I was given was that I would stay in my local area and go to the cancer center in the local area. The doctor who had diagnosed the cancer had made a referral, obviously,

And I was expected to go for a CT and then meet with the first oncologist after the fact. So I didn't make it there. You didn't make it there. No. So what happened? What was different? Upon first finding out that diagnosis, I was in a bit of a tailspin trying to look for some support.

during that initial diagnosis. And I reached out to various sources across the internet. It was a weekend and I was kind of spiraling a little bit and I came across a cancer support group that actually responded to me

on that weekend, on the Sunday. I sent out an email. They responded back to me. They actually called me and said, hey, we're having a meeting today. Why don't you join us and just listen in? So I joined that meeting and it really helped put things into perspective. And Dr. Wildgoose happened to be on the meeting that day. The cancer support group she's talking about is CRAN, the one I mentioned off the top.

And here's the luck part. Dr. Petra Wildgoose was on the call when Catherine told her story. As you'll find out, Dr. Wildgoose plays an essential role in getting Catherine the care she needs. As often happens these days, the two have had countless virtual appointments. That is until this very moment, Samir and I get to witness.

Hi. I know. It's so nice. Hi, I'm Dr. Petra Wildgoose, and I am the program lead for the Young Adult Colorectal Cancer Program here at the ODEC Cancer Center at Sunnybrook Hospital. We've never actually met in person. We've done so much together, and Catherine's been such a huge support of our clinic and everything. You've been a huge support of me. In the weeks to come, we have an entire show devoted to the work Dr. Petra Wildgoose does at the Young Adult Cancer Clinic here at Sunnybrook.

As I was saying, Dr. Wildgoose is on the call when Catherine expresses doubts about the treatment her doctor is offering her. Yeah, it was kind of weird. Um...

She had messaged me and said, hey, Sunnybrook has this young adult colorectal cancer clinic. Wow. I know. The power of coincidence. It was just bizarre. I almost feel like there was some sort of, I don't even know how to describe it. It was... Kismet. Yes. Like karma. It was. Call it kismet, karma, or whatever you like. Catherine says she was now pointed in the direction of the right clinic. But getting there was another matter altogether.

How easily did you get a referral here to the Odette Center once you had that initial contact with Dr. Wildgoose? Well, getting the referral wasn't easy. I went back to the doctor who diagnosed me and asked if they could please do a referral to this clinic here at Sunnybrook. And

They didn't want to give me the referral. He didn't want to. I remember sitting in my truck waiting for my daughter to come out from work and I was on the phone with this doctor and he was convincing me not to go. And he said, just stay here and we'll see how it goes. And if you don't like it, then we'll switch you over. And at that point, I was just 15, 20 minutes of like, no, I don't want you to do this. I was vulnerable and I gave up. And I'm like, fine, I'll just, I'll do that.

I ended up calling to the support group that day and they were like, "Hold on, hold on. What do you want to do?" And I said, "Well, I want to go to Sunnybrook." And they were like, "Okay, let's see if we can get this to happen." They kind of coached me on what to say to this doctor to try and help me navigate getting what I needed to get from him. He didn't end up doing the referral. Did he, like your family doctor? Dr. Wild Goose actually ended up doing the referral.

Dr. Wild Goose was Catherine's Swiss Army knife, suggesting the clinic, doing the paperwork so she gets the referral. Here at the clinic, Wild Goose does Catherine's initial assessment and sets her up to see the clinic's talented surgeon, Dr. Shadi Ashimala. So I was diagnosed January 18th, and I think it was mid-February before I saw actually Dr. Ashimala for the first time in clinic. And he wanted to re-scope me.

So thank God. Why? Tell me. My cancer was actually lower than was first diagnosed. So initially it was diagnosed in the sigmoid junction. But after being re-scoped by Dr. Ashimala, my cancer was actually in my rectum. So it was rectal cancer. Big difference between rectal cancer and colon cancer. Huge difference. Because my pathology actually came back as being stage two. I was fully prepared to go down the chemo route.

route because before surgery, they were looking at a stage three with possible lymph node invasion, but it came back. They took out 23 lymph nodes and the tumor, and I was NED. I was no evidence of disease. And that was a big shock. I was fully prepared for the chemo. That's what this clinic did for me was

prepping me every step of the way. I talk to patients now when they have no idea what's up and coming for their treatments. Like they're just in a place they don't, you know, and I was like that at the beginning too, but being in the place where they do kind of specialize in your age group and your pathology, like they prepare you every step of the way. We'll be right back.

I'm Katie Boland. And I'm Emily Hampshire, who didn't want to be here. On our new podcast, The Whisper Network, we want to speak out loud about all the stuff that we usually just whisper about, like our bodies, our cycles, our sex lives. Basically everything I text to you, Katie. So this is like your intimate group chat with your friends. And we can't wait to bring you into The Whisper Network. This journey is a nightmare for me. I'm doing it for all of us, so you're welcome.

You're listening to White Coat Blackheart. This week, Catherine Mifsud is one of the growing number of Canadians diagnosed with colorectal cancer. Her search for treatment led her to the young adult colorectal cancer clinic at Sunnybrook Health Sciences Center in Toronto. The right treatment begins with an accurate diagnosis and that is yet another reason why Catherine's referral to Sunnybrook was fortuitous. The doctor who saw her elsewhere thought the cancer was located at the very bottom of the colon and so told her she had colon cancer.

Dr. Shadi Ashimala, her surgeon at Sunnybrook, took a second look and found that the cancer was actually located a few millimeters lower in the top part of the rectum. The two diseases spread differently and are treated differently. So different that some experts have even suggested that we should stop calling it colorectal cancer. All the more reason why I wanted to meet Dr. Ashimala.

Good morning. Hi, how are you? Good. Brian Goldman here. Nice to meet you, Shadi Ashimala. Nice to meet you. Hi, my name is Dr. Shadi Ashimala. I'm head of general surgery here at Sunnybrook Health Sciences Center, a minimally invasive colorectal cancer surgeon, and I'm lead of the Young Adult Colorectal Cancer Clinic here at Sunnybrook. Dr. Shadi Ashimala, welcome to White Coat Blackheart. Thank you very much, and thanks for having me here today. The Sunnybrook Young Adult Colorectal Cancer Clinic is Dr. Shadi Ashimala's brainchild. It's his baby.

Asher Malla's mission here is to treat cancer using innovative surgical techniques from around the world. But as I soon learned, he has a deep understanding of what it means to be a young adult with colorectal cancer. Why did you want to start a program aimed at young adults with colorectal cancer?

So, I mean, historically, colorectal cancer has always been thought of to be a disease of the elderly. And as we age and we start screening at 50 and then, you know, maybe something comes up as in we're in our 60s and 70s. And what started to happen early in my practice was we started to see this trend of younger adults, patients in their 30s and 40s,

And we started to realize that this was becoming, and I say becoming because it was really an evolution, but it was becoming a disease of younger patients. And in doing so, it was being unrecognized. Symptoms were being passed over as some other symptoms because no one was thinking colorectal cancer when it's in a 20 or 30-year-old. And so the initial stages were being missed. So these patients were presenting a little bit later in their disease process and

And then when we started treating them using our algorithms and our treatment strategies that we were used to using in 60s and 70s and 80 year old patients,

you start to realize that the surgery is the same, but everything around that surgery is not the same. And that sort of wasn't, we were doing that on an individual patient basis. We were realizing, okay, this patient needs this aspect of care. This patient needs to have this discussed with them. No one's talked to fertility about fertility. No one's talked about child psychology. And we realized we were doing it on a bit of a fly by the seat of your pants basis for some of these younger patients.

And that's when we thought to ourselves, this needs to be formalized. And then the Odette Cancer Center from there started a whole process of this clinic.

What's it like from your standpoint? What's it like to be a young person with colorectal cancer? You know, Brian, I'll tell you, clinics are different now. You know, when I, again, when I started my practice, maybe I was younger as well, but I would sit in practice and it was like you're somewhat dissociated from the problem that you're treating. You're treating it, you're fully engaged, but it's not something you could see happening to you.

And it was hard and it was emotional, but it always kind of made sense. When you saw a patient with cancer in their 70s and their kids were there, their adult children were there supporting them through it, it had a certain circle of life normalcy to it. This does not, right? And this for me, I leave clinic now a little bit more emotionally beaten up or emotionally charged than I'm used to. And that's a little counterintuitive. Usually the more years you do this, the less it affects you. Because now every patient is just a

Many of my patients are just a different version of me. They're type A patients with super busy lives who are trying to balance kids and trying to balance their jobs and their finances and all the pressures of life. And they just had this bomb dropped on their life that they don't have time or capacity for. And they come in panicked. They come into clinic in a panic. And they often are sitting next to their spouse. Their kids are, they've had to arrange childcare to be in clinic.

Often they're there with their parents, patients in their 20s and 30s or their 60, 70 year old parents are sitting with them and it takes a minute to figure out who the patient is. And their mindset is totally different. They don't have that mindset of I've lived a good life.

Right. That's something that almost gives solace to a cancer diagnosis to someone in their 70s or 80s. They can look back at their life and say, I'm ready to fight this, but I've lived a good life. There's an injustice to this. There is an injustice to this. You couldn't say it better. That's absolutely what it is. Ashamala empathizes with young adults who are dealing with colon and rectal cancer.

That perspective underlies his approach to surgery. You're a minimally invasive surgeon. Tell me the surgeon's approach to treating a young person with cancer. You've already said the surgery itself isn't always different, but there must be some distinctions. Yeah, I mean, you know, I tell our residents and fellows, minimally invasive surgery is not a technique. It's a philosophy of care.

And what that means is that it's not, when I say minimally invasive surgery, it's not synonymous with robotics or laparoscopic or any of the techniques we use. It's an entire philosophy of what we do. It means minimizing the surgical footprint on this patient as much as possible to get them back to their normal life as quickly as possible. And often that means what's called a local excision. We use chemo and radiation to shrink the tumor first because it may mean we can

a sphincter and maybe somebody can have continence as opposed to a permanent colostomy. Those types of adjuvant approaches to try to minimize what the surgery is going to do, we're very aggressive with. And then in the operating room, to your point, it's we want to use the most sort of cutting edge techniques, the most up-to-date approaches, both laparoscopic and robotic and everything we can use out of our tool belt

to minimize the impact of this operation on the patient, their postoperative care, their life, because it's not just them. It's their whole life. That's going to be impacted by how aggressive this surgery is. Why is that advantageous to the patient in terms of their quality of life? So if that approach is appropriate oncologically, and I, and I really, I start every kind of discussion around trans anal minimally invasive surgery in that the cancer dictates what we have to do. And then we pull out the right tool based on the cancer.

But for those patients who have early stage cancer that we can approach it through a trans anal approach, those patients go home the same day. Um, they, they maintain their anus, they maintain continents, they go back to normal life fairly quickly, uh, with a very, very short, uh, postoperative sort of period. Um,

Those same cancers were taken out in much, much bigger operations in the past that would be not only an immediate consequence of a longer hospital stay and an incision to heal and those types of things, but also a change in bowel habits that could last forever and low interior syndrome and the impact of losing your rectum.

The approach is a organ-sparing, minimally invasive approach. But again, these decisions are made not by me independently. We have these long discussions. Every rectal cancer is discussed at a multidisciplinary cancer conference to pick the safest oncologic approach with the umbrella of the most minimally invasive approach. And it's kind of a combination. As I mentioned before, Catherine was first told she had colon cancer. But Ashimala figured out she had rectal cancer.

The difference is not a matter of semantics. I wanted to ask him about that. It's easy to kind of conceptualize it as it's one tube and where that cancer happens to be in the tube shouldn't make too much of a difference. Rectal cancers are different animals and they require a different treatment strategy, including chemotherapy.

chemotherapy, radiation, often before the surgery. And that's really the crux of the matter is it's one of those things where you measure twice, cut once. If we do the operation and then realize it was something that we hadn't really anticipated, we've lost that opportunity to optimize the operation. And so really that preoperative planning piece is, I think, far more important than anything we do technically, because that's the part that's going to change long-term prognosis.

So for a colon cancer, most of those patients, if it is not metastasized to other organs or traveled to other organs, it's straight to surgery. For rectal cancer, about 80% of rectal cancer patients require some type of neoadjuvant or pre-surgical treatment in the form of either chemo, radiation, or both.

And so 80% of rectal cancers, the best thing to do is some type of treatment before you take them to the operator to shrink it down and often change the operation and change the gravity of the operation. And so Catherine was in a situation where it was thought to be a colon cancer initially. If she was taken to the OR, certainly there would have been an opportunity missed to

optimize her treatment. Once the diagnosis of rectal cancer was made, she did require radiation up front prior to her surgery. Just to close the loop on Catherine Mifsud, just in a general sense, how did all of the things that you and the clinic did here contribute to her success where she's at right now?

I mean, I think, you know, step one was that she felt listened to, she felt accepted, she felt cared for. I think Dr. Wildgoose did a phenomenal job of, does a phenomenal job of connecting with these patients where they are and not kind of bringing them to where we need them to be, but rather encouraging

What's their starting point? Having that full team approach, really meeting her where she was, which was in a state of chaos and confusion and not being sure of her diagnosis and not being sure what was next and kind of taking that and breaking it down into a very stepwise approach to what we were going to do and how we were going to do it.

that really put her in a good mental space. And it took longer, right? Because for colon cancers, we don't do MRIs of the abdomen. We get the CT scans of the abdomen. For rectal cancer, you need an MRI of the pelvis. And so when Catherine came, she was ready to have surgery. And we said, well, hold on a second. We need to do this test and this test and this test. Oh, and now you need some radiation. And so the surgery that she was wanting was months down the road. So

If we had kind of come to her and said, no, no, no, we're going to like this, but this is the plan. I think it would have created more chaos. But really, I think meeting her where she was and helping her understand each step of the way, why this step is important and why and how we're going to manage it. I think that really matters.

moved her forward in her treatment path. And I think it led to her ultimate success with this is that Petra, Dr. Walgoose's first step was really to make sure she understands where these patients start and what they need. And I think that's the key to all of this is just personalizing cancer care. You've become an advocate for the approach that this clinic uses, the philosophy of this clinic. It's the only one of its kind in Canada, pretty much so?

Yeah, so it is the only young adult colorectal cancer clinic in the country. We're very proud of that. But at the same time, we are working with lots of other centers to try to sort of build those resources out. There are other clinics now forming where there are young adult cancer clinics, where in cancer centers that are sort of managing all young adult cancer clinics. I think that's a great first step.

I think generally speaking, the principle is just making sure that we don't miss things that are important to patients that we're not used to treating with this disease. And behind what you're doing here and your advocacy is a fact that rates of colorectal cancer in younger people are going up. Have you thought about the future? Yeah, no, absolutely. That's where this all came from, really, is we were seeing it in clinic and

And the data fully supported what we were seeing, which is, and to your point around how supportive was the hospital, very, because we had the data, we had the anecdotal stories, we had the whole picture where Sunnybrook as an institution wants to be a world leader in these things and present it as a cohesive story with evidence behind you, you'll get everybody's support. That's the data message. But you're talking to people in Canada right now. What do you want to tell them?

So, I mean, I think the most important message, colorectal cancer is a disease of everyone.

I've had patients in their twenties die of this disease and I've had patients in their nineties die of this disease. And so that means, and I, I hate to oversimplify. It means everybody needs to have that little thing in the back of their mind that makes them get up after a poop and look at their stool. And if it doesn't look quite right, talk to their family doctor or their nurse practitioner or their healthcare team about what they're seeing, advocate for themselves, get a colonoscopy, um,

Because if you're 30 years old and you're seeing some blood in your stool, it could be colorectal cancer.

It's probably not. I hope it's not, but it certainly could be. And you need to be investigated exactly the same as a 70-year-old who saw that exact same blood in their stool. So, you know, it's a funny message every time I get a mic in front of me. I'm telling people to look at their poop. But ultimately, that's, you know, if we wait for these things to become very symptomatic, it's usually too late. So colorectal cancer is a disease that is curable if found early, but

We start screening in Canada at 50. We're going to push very, very hard to make that age younger. It's 45 in the States. It should start earlier in Canada, and I believe it will in the short term. But ultimately, we know that screening works. And it works so well that in our patients over the age of 50, colorectal cancer rates are decreasing. So there's an inflection point of those rates, and it changes right when we start screening.

So it behooves us to move that screening age. And in the interim, my one message is that this is a disease of everyone and everyone needs to take it seriously and everyone needs to identify those early symptoms. Dr. Shadi Ashimala, thank you so much for sharing your vision and speaking with us. It's absolutely my pleasure. And I really appreciate being asked to do this today. Thank you.

The growing number of Canadians with colon and rectal cancer that Dr. Shadi Ashamala sees here includes some just entering the workforce and some still in college. As Dr. Petra Wildgoose has found out, getting the big C in your 20s or 30s presents some unique life challenges.

So it was an issue with someone's schooling and they didn't know how to approach it and, you know, they didn't have anybody else to advocate for them. And so, yeah, I helped them. I spoke to the administration at their school because it's shocking how much pushback patients can get. More in the weeks to come on White Coat Blackheart. That's our show this week. Our email address is whitecoat at cbc.ca.

White Coat Black Art was produced this week by Samir Chhabra with help from Jennifer Warren and Stephanie Dubois. Our digital producer is Ruby Buiza. Our senior producer is Colleen Ross. That's medicine from my side of the gurney. I'm Brian Goldman. See you next week. For more CBC podcasts, go to cbc.ca slash podcasts.