A career, three young kids, and colorectal cancer
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Because news. This is a CBC podcast. I'm Dr. Brian Goldman. This is White Coat Blackheart. Last year, just over 25,000 Canadians were diagnosed with colorectal cancer. That estimate from the Canadian Cancer Society. Colorectal cancer was once thought to be something that happens to older people. Here is a much younger woman who was first diagnosed two years ago.

Hi, my name is Melissa Groff. I am from Ontario, Canada, and I am a proud mom of three beautiful children ages six and under. I was diagnosed with rectal cancer in 2023, shortly after my youngest daughter's first birthday. So I had completed my maternity leave and found out about my diagnosis and a whole new journey begun for me.

A gut-wrenching roller coaster of a journey for Melissa Groff, diagnosed at age 34 just as she was coming off Matlib. For some years now, doctors have noticed rising rates in younger adults. Some have inherited a genetic mutation from their parents. Others may be due to lifestyle factors like alcohol, smoking, and obesity. But experts aren't sure what's going on.

Melissa was preparing to return to work when she noticed a bit of rectal bleeding and a change in bowel habits and went to see her family doctor. She suggested that I go for a colonoscopy. I was quite surprised. It was one of the first things she said to me. And she said she would put a referral in. And within a couple of weeks, I got the call letting me know my appointment was coming up.

As you've said, that is very unusual. In fact, a lot of physicians, upon hearing what you had in terms of symptoms, might have pushed back and said, I'm not going to do a colonoscopy because you're too young to have colorectal cancer. But what did your doctor say to you at that time? You know, the discussion of colorectal cancer wasn't even on the table because I had just had my third child a year ago. I expressed to her I thought maybe I had hemorrhoids that I didn't see.

And she checked me on the spot for any hemorrhoids and then said to me, you know what, let's just go send you for a colonoscopy just to make sure everything is okay.

I was impressed in the sense that I thought, well, she's taking precautions to send me somewhere to get this checked and not dismiss my symptoms. That Melissa's doctor did not immediately attribute her rectal bleeding and change in bowel habits to something more benign like irritable bowel syndrome is unusual. On previous shows, younger patients with the same symptoms told us their doctors said they were too young to have colorectal cancer.

Melissa went for the colonoscopy. Then... When the specialist came to see me, he asked if my husband was picking me up. And it was a late colonoscopy that night. I had told him my husband was at home with our three children and my in-laws were actually coming to pick me up. And he said to me, is there any way your husband can come?

And I knew at that point something was wrong because I had heard other patients get dismissed by the nurses on site, that they were all in the clear, they'd had some hemorrhoids, here you go, see you later.

And I was there waiting. And fortunately, my in-laws were already there. And they came into the room. And that's when the specialist sat us down. And he said to me, you have rectal cancer. He said, I've seen this before. I biopsied a tumor in your rectum just to confirm. But I truly believe you have rectal cancer. And I was...

In a lot of shock, I was very emotional. My mother-in-law had actually been diagnosed with a different type of cancer weeks prior to this, and I thought it was unbelievable. I had never even heard of anyone around my age receiving this diagnosis. I don't know anyone personally. I don't have a family history of it. As Melissa talked about this utterly unexpected result...

I noticed that she was taking longer and longer pauses between sentences. We don't appreciate this in medicine, the shock. It's like a form of PTSD. As somebody who's gone through the ringer, who's gone through the gamut of treatments, you're reliving it as I ask you questions about it. Yes. What was your first conversation with your husband like? When I came home, I remember standing in the kitchen with him and looking at him and asked,

Do you want the good news or the bad news? And we just looked at each other and it was so hard to get the words out. I think it was unbelievable for both of us for me to even say the words that I had rectal cancer. Melissa remembers her doctor telling her, you're a young woman with young children and we want to get this going. In short order, she had an MRI and CT scan which showed no metastases.

The plan for Melissa was to have laparoscopic or minimally invasive surgery to remove the tumor likely followed by chemo, depending on the biopsy results. And there was one more detail.

Melissa needed a temporary ileostomy, an opening in the belly so she could have bowel movements into a bag. I asked her what she was told about that prior to surgery. Brian, I had never even heard of an ileostomy. I learned all about what life would be like with an ileostomy and having a bag and

and changing a bag, and just navigating life with one, what I was able to eat, what I wasn't able to eat, what type of clothes I could wear, how secure I felt or insecure I felt. It was definitely a big learning curve for me.

In those conversations, did the subject of your physical relationship with your husband come up? At the time, they didn't. And to be honest, I was very self-conscious of it.

I know he would never look at me in a different way because of it, but it was something new on my body and I did open up to him more about it. I let him know how I felt about having one and he was very supportive of me having it. Melissa is a patient with cancer and all that entails. Now age 35, she's also a young mother.

So I'm trying to imagine that you have rectal cancer, you're getting chemo, and you have these three young children under the age of six. How much did they realize that something was wrong with mommy? They knew mommy wasn't well when mommy was on the couch in a robe.

And I also would wear gloves around the house. I had these thin pink gloves that I would have to grab my coffee mug with. I would have to wear to open the fridge.

Everything that was colder than room temperature was so sensitive to me. And the kids would ask, Mommy, why are you wearing your gloves? And I would explain to them, oh, Mommy's hands hurt when I touch something that's really cold. And they would look at me like, okay, are you okay, Mommy? Yes, Mommy will be okay. And, you know, I would get some extra snuggles on the couch, especially when I was keeping warm in a robe or a house coat.

I'm flashing back right now. I was 16 when my mom was diagnosed with breast cancer, you know, when she went into the hospital to have a mastectomy. And I so I processed that as a as an adolescent. How do you think your illness has affected your kids?

I hope they see me as someone that appreciates life. My husband is a big kid at heart and I love him for that. And he's been very supportive of the days that I need on the couch and the days that I can get up and do fun things with the family. And I just...

I hope my kids enjoy that part of me and they don't look at me in a way that I'm sick and that I'm not well and that I can't participate and I can't do fun things. Like other young people with colorectal cancer, Melissa is in the prime of her career as an event planner. It's more than a job. It's a big part of who she is. I always felt like a career-driven woman. I'm passionate about working with others,

I love helping people. I love being outside of the home and socializing. I wanted to go back to work. I was so eager after my third maternity leave to get back to work.

And I did try to go back for a few weeks thinking work would be a good distraction for me. I'm very thankful my colleagues were very supportive of me. I had let them know about my diagnosis because I felt like it was something that didn't need to be hidden. I felt like bringing awareness to them that this can happen to anyone at any age was so important to know and also to

to have them empathize with me over mixed emotions and miss days at work to attend appointments. But you found you couldn't do it? No, I found that it was a lot. It was overwhelming to be at work and try to navigate a whole new journey through a diagnosis that I had absolutely no experience with. I called it the biggest project of my life.

For that biggest project of her life, Melissa was told that she didn't need radiation therapy. As for chemo, she was given two options and chose the one that best enabled her to carry out her duties as a young mother. Still, Melissa believes there was something missing in her treatment plan. Ryan, I really don't feel like I had a personalized approach to

I felt that it was a textbook answer given to me. And I also felt like I wasn't presented with all of the options on where to receive treatment, what types of treatment I could receive, you know, even the option to meet other colorectal patients, maybe around the same age group or in the same type of lifestyle as me that have young children.

As you may know, on a previous show a few weeks back, we visited Sunnybrook Health Sciences Centre in Toronto, where they have Canada's first clinic, especially for young adults with colorectal cancer. The clinic is designed to meet their unique needs. Melissa only found out about the clinic after she received treatment. She wishes she'd learned about it before. It would have meant a lot. I didn't know about it at the time of my diagnosis, and...

After learning about it, I feel like now it's something that I do want to explore. I want to connect with others. I want to see what's working for them, what's not working for them, how they've been able to be helped from a personal perspective with their lifestyle, with their family, what treatment options they've been given. And also, what do they do on the side? What do they do outside of the hospital doors? Because I never...

received that guidance to say, Melissa, I think you should be focusing on this type of lifestyle and maybe cut this out of your diet. It was more of a response like eat healthy and exercise. 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, the story of Melissa Groff, who was 34 and mom to three young children when she was diagnosed with rectal cancer. As we just heard, Melissa wishes she got the kind of age-appropriate advice and treatment they dispense at Sunnybrook's Young Adult Colorectal Cancer Clinic. The doctors who work there are filling a growing need.

Hi, I'm Dr. Petra Wildgoose, and I am the program lead for the Young Adult Colorectal Cancer Program here at the Odette Cancer Center at Sunnybrook Hospital. Dr. Petra Wildgoose, welcome to IcoBlackArt. Thank you so much for having me. It's an honor.

Give me an example of a service that you provide here that almost nobody would think of providing except at a clinic for young people. So younger patients, unfortunately, when they're diagnosed, so if you're in your 20s, you can imagine if you're in your 20s, 30s, or 40s, a diagnosis of cancer is very different than if you're in your 60s, 70s, or 80s. So typically, these patients are still in school. They are just starting their careers or their mid-career. They have families. They have kids.

They have other commitments outside of their jobs. They have parents. They have parents. That's true. They have parents. In fact, I have a lot of patients who are simultaneously taking care of their parents and

who have cancer while they themselves are going through a cancer diagnosis, as well as taking care of two or three children at home, which can be understandably very traumatic and very overwhelming. These younger patients are obviously living longer or have the opportunity to live longer than an older patient would after diagnosis, you would hope.

So we have to sort of try to figure out what that means, what a diagnosis and what treatment might mean for them and how it might change their life as they move forward. And then dealing with some of the symptoms that they have so that they can continue to live a life with a high quality of life. So, for example, sexual side effects are really important.

to address, which is not commonly addressed. It's a hugely under addressed area of cancer care and it's impacted by chemo, by radiation and by surgery. Menopause, a lot of women undergo premature menopause and we do not do a good job at addressing that in our healthcare system at all. Our family doctors, me being one, knows that we are not trained very well to address menopause alone, let alone premature menopause, which is a whole other category of menopause.

And then body image and what that means for a younger patient. Obviously, if you're in your 80s and 90s, you know, you may not care so much about what your body looks like. But when you're in your 20s, 30s, and 40s, you know, you may want to put that bathing suit, that two-piece bathing suit back on at some point in time. You're still, you know, in the middle of having relationships with people. And not just that, not just how your body looks, but how your body feels to you. And so we address a lot of that as well. And one of the biggest things that we focus on, which...

obviously impacts all patients of all ages is the mental health impact. And I think the major impact or the major difference between younger patients and older patients is the fact that this diagnosis is completely unexpected and out of nowhere. And, um,

Also, it's generally a patient's first introduction to the health care system. Dr. Wildgoose rhymes off a long list of unique needs of young people with colorectal cancer. And there's one more that typically requires urgent attention, whether or not to take steps to freeze eggs or sperm prior to chemo. A patient that has colorectal cancer, doesn't have children yet, wants to have children, but is going to be undergoing radiation, maybe chemotherapy. What then? What do you do? Mm-hmm.

This is actually a topic that we're trying to streamline in Ontario because it's shocking how many patients don't receive proper care or guidance or upfront discussion about fertility preservation prior to starting treatment, which I can only imagine is completely devastating. I mean, here we do...

Our oncologists do, I think, an incredible job at making sure they have those conversations up front prior to starting chemo or radiation. So prior to causing ovarian failure, essentially, or, you know, spermatic failure, they do have those conversations up front. And we're very good at getting patients in ASAP, the fertility clinics that we work with, prioritize those patients up

And if it's not the oncologists that have those conversations, it's, it's myself, obviously with a lot of the younger patients and it's, it's a very, very hard conversation to have, but I think because of the immediacy of it, the immediacy, the acuity to be able to start chemotherapy and radiation, it doesn't give them a lot of time to even really think about it. And so I think I would expect that a patient would be a lot more emotional about it and

Unfortunately, I find that patients aren't even allowed the time to be able to have any kind of emotional reaction to it. It's a yes or a no. And

That in and of itself is very overwhelming. And so I can imagine this is all the stuff that patients are processing, you know, years later or into the survivorship phase even, which they didn't have time to process at the time. It's, you know, you have 48 hours, we got to get you into a clinic. Are you going to do fertility preservation or not? And, you know, at least they get that option because as I said, in a lot of places, those conversations are not even had. And I can't imagine that.

And just to be clear, when you say fertility preservation, you're talking about egg retrieval and egg preservation and sperm preservation. Yeah, exactly. Yeah, exactly. So for men and women. And then, I mean, there is a cost to storing it too. So it's a whole other conversation, right? So they have to, which is why we're talking about hopefully streamlining it in Ontario because we don't have that...

those centers don't exist in the big oncology centers. They have to go to sort of a secondary location. And then it's a whole other group of people and it's a whole other conversation. And again, it's just very overwhelming for somebody who's just been told they have cancer to then all of a sudden be pushed, uh,

appropriately pushed because we need to start treatment ASAP in these younger patients who have more aggressive cancer and are you know more likely to be stage three or stage four so appropriately pushed to have treatment to make a decision about do you want kids or not imagine if you're 24 25 and you're in school and trying to start a career I don't know and what does that entail and and it does it entails a lot things we don't talk about right ovarian stimulation egg retrieval is a whole other process

The Sunnybrook Clinic is unique, but it's just one clinic. Unless you go there, it's unlikely you'll get the kind of attention to younger patients that the clinic provides. Attention that would have meant a lot to Melissa Groff.

I hear you wanted to have more kids. Yes. So after our third child was born, we had talked about, okay, what are the next steps? Do we want to consider having four? Because that was something that we had talked about even before having our first child. And so when she turned one days later, I had my colonoscopy and found out about my diagnosis and,

We hadn't really spoken too much about fertility and having kids again because we were so overwhelmed with the news about my diagnosis and all the next steps. And it came up when we were in the room with my oncologist where he addressed the option of preserving my eggs.

And I remember looking at my husband and just saying, I think this is it for us. I felt like receiving a diagnosis like this was going to be a whole nother journey. So much time dedicated to it and my body just going through so much that I was not ready to try to conceive another child.

Following surgery, Melissa had eight rounds of chemo over a six-month period. It was rough at times. Following one round, she was admitted to hospital with dehydration. She finished chemo in March 2024, but there was a curveball, a lymph node on the left side that didn't shrink as expected following chemo. Melissa pushed for a biopsy. Since finishing your treatment, you've recently had a biopsy of your lymph nodes. What were the results?

At first, I found out that the lymph node was benign. And days later, I received an email letting me know that there was a new result online. And I remember opening that email and seeing that there was a new report uploaded from the biopsy due to user error. And it stated that my lymph node was metastatic.

Oh my, that must have been quite a shock to you. It was. It was shocking. It was disappointing. I couldn't believe that an error like that could happen in today's day and age with the technology that we have. And I remember when I received the first result saying that it was benign, I was so excited because my oncologist was fairly confident it was going to come back metastatic. And he had said to me,

If it comes back benign, I'll be scratching my head. And I remember calling my nurse after I found out it was benign. And I said to her, you need to tell him that he's got to be scratching his head. And the days later, when I found out that it was actually metastatic, I felt heartbroken. What do you know about the implications of these results, these new results?

So finding out that it was metastatic, I had asked the oncologist if I could work with a surgeon to figure out what the next steps would be in terms of removing this lymph node. And so he connected me with a new surgeon different than the first surgeon that removed the tumor from my rectum.

And my husband and I met with the surgeon to discuss his opinion on what we should do. And when he suggested that I should go for surgery to have it removed, I was eager to hear that. I wanted this disease out of my body. Since that surgery, Melissa's scans have been clear. Her doctors have told her that the chance of a recurrence of the cancer is highest in the first year following surgery.

For now, she's walking on eggshells. She's put her career on hold and is concentrating on being a mother to three little ones. I imagine that having a strong support system is important to you right now.

Yes. So I'm fortunate that my in-laws live very close to me and they've been great when we need them throughout the week and on weekends. And my parents live further away. So I've also been fortunate that they've been able to come over and spend some time at our home. They'll sleep over and help with the kids. They'll help us with meals and getting them to and from school. And

I've also got a wonderful group of friends that I've been friends with since elementary school that don't live close by, but they're always reaching out, sending me things. I've got friends close to home that reach out to me, pick me up and take me out when needed.

I've got other family in the area. I've got neighbors and colleagues that came to me when they found out about my diagnosis to offer help, to bring me meals. It's been wonderful. I'm very thankful for the support system that I have. Last question I want to ask you, Melissa. As a young person dealing with this diagnosis, you have years to live with it.

And I hope it'll be many, many years. How do you compartmentalize that so that you can live the rest of your life and just carry on going forward? You seem like such a strong person. So Brian, I advocate for having a therapist 100%. I love having my therapist available to me when I need her. And to be able to talk this through with her has been very helpful because

I have told everybody that I would love to live to 100 and I'm sticking my grounds that I will live a long life. And I want to do everything and anything I can to live a long life and enjoy it. I always try to find the positives in things. I've been listening to podcasts and audio books, trying to read through books.

positive affirmations and even being positive with my children. It's very different in today's world with so much anxiety. I try not to consume myself with a lot of negativity. Well, Melissa, I admire your strength and speaking with you has been inspiring and

I hope you continue to do well. And if you don't mind, I'd love to check back with you and see how you're doing in the months and years ahead. Yes, absolutely. Melissa Groff, thank you so much for speaking with us. Thank you so much for having me. The growing number of young people with colorectal cancer has led to calls for special clinics like the one in Toronto. And there have been increasing calls to lower the age at which we begin to screen Canadians.

And one more thing, a warning to young people to get tested if, like Melissa, they get symptoms like rectal bleeding and a change in bowel habits. That's our show this week. We got a lot of feedback from last week's show about palliative care. So we're planning an episode of our podcast, The Dose, devoted to your questions. If there's anything you want to know about palliative care, please email us at 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.