How can patients access mental health support following a cancer diagnosis? What are the barriers to mental healthcare, and how are they experienced in practice?
How can patients access mental health support following a cancer diagnosis? What are the barriers to mental healthcare, and how are they experienced in practice? These are just some of the questions explored in our latest episode, with host Dr. Mo Alsuwaidan and guests Dr. Jennifer Leong, oncologist, and Dr. Choo Mei, PhD in psychology and cancer survivor. Listen in as these they delve together into the important topic of the role that mental health can play in cancer management – an aspect that’s often overlooked following diagnosis due to treatment options taking center stage. Learn more by tuning in at listenwellpodcast.com or watch the full episode here.
Disclaimer: This podcast is provided for educational purposes and is not intended to replace discussions with your healthcare provider. All decisions regarding your care must be made with a healthcare professional, considering the unique characteristics of your personal situation. The opinions expressed are the opinions of the individuals recorded and not the opinions of Viatris. Individuals featured in this podcast may have participated in the past as or may be current members of an advisory group for Viatris.
Mo Alsuwaidan:
I am honored today to be joined by two inspiring guests who will help us learn more about cancer and its mental health impact. Dr. Jennifer Leong is an oncologist at one of Malaysia's leading healthcare center's, Sunway Medical Center.
Mo Alsuwaidan:
And Dr. Choo Mei Sze is a developmental psychologist, an entrepreneur, a speaker, a youth ambassador for the National Society of Cancer for Malaysia, and also a colorectal cancer survivor herself. I'm looking forward to learning a lot more from our inspiring guests, so please join me and listen well.
Mo Alsuwaidan:
Dr. Jennifer, Dr. Choo, thank you so much for joining us. It's an honor.
Jennifer Leong:
It's an honor to be here.
Choo Mei:
Thank you, Dr. Mo.
Mo Alsuwaidan:
Thank you. Dr. Jennifer, let me start with you. In your practice as a clinical oncologist, you see cancer patients every day, what have you experienced in terms of a mental health impact on your patients?
Jennifer Leong:
The mental health impact has such a significant role to play in cancer patients, but sadly, it is also almost often overlooked. Because when a patient is diagnosed with cancer, it is deemed as a life-threatening situation. So, cancer takes priority in terms of treatment as well as cancer treatment is expensive, so mental health becomes a second priority.
Jennifer Leong:
But this should change because we know that if you take care of patients in terms of their mental health alongside their cancer treatment, this can improve their treatment outcome.
Mo Alsuwaidan:
When you first tell a patient that they've been diagnosed with cancer, what sort of reactions do you see in clinic?
Jennifer Leong:
So, I think this is the toughest thing I've ever done. And even after many years of being an oncologist, I think the toughest part about being an oncologist is breaking the news to a patient. And often they come in with their family members and you can see fear on their face as well. When someone is diagnosed with cancer, it's as if the whole ecosystem changed. It comes to a halt, standstill.
Jennifer Leong:
So, I think as a physician, the best thing we can do to our patient is to be kind, is to actually allow them time to accept and digest the diagnosis. And everyone copes differently.
Mo Alsuwaidan:
Right. And we have to remember medicine is an art as much as it's a science.
Jennifer Leong:
Exactly. We are not just treating the clinical part, but I think the mental part is as important.
Mo Alsuwaidan:
The whole human being. Dr. Choo, that brings me to you. When you first received your diagnosis, do you recall your initial emotional reactions?
Choo Mei:
I think because I was so young, I was really shocked. That was my first reaction. And I think it's the same for my family members as well around me because what was meant to be H. pylori became cancer.
Mo Alsuwaidan:
So, shock was the initial?
Choo Mei:
Yes.
Mo Alsuwaidan:
And then later on in the coming days and weeks, did that turn into another emotion?
Choo Mei:
I think for me, because I had a PhD in psychology, I knew that I shouldn't be depressed. So, it was from shock to getting to know the determination to fight this. So, it's from like 0 to 10.
Mo Alsuwaidan:
How long did that take for you?
Choo Mei:
I didn't have much time, so it took me seven days.
Mo Alsuwaidan:
Wow.
Choo Mei:
Of course, in that seven days I was crying before I was like fully diagnosed 100% with cancer, waiting for the biopsy results.
Mo Alsuwaidan:
And you're just in this limbo in those days.
Choo Mei:
Yeah. I was just crying every day. It wasn't like sad crying, it was shock crying.
Mo Alsuwaidan:
That brings me to people around a patient, so families. Dr. Jennifer, what impact does a diagnosis with cancer have on the mental health of the family system?
Jennifer Leong:
Significant, I would say. So, we always focus on the patient but actually we also need to look at the caretaker because it take a lot of mental, physical toll on them as well as financial stress. So, all this comes in and because we know caretaker plays the pillar of support for the patient, so it's important as well as the physician, when they come along with the patient for treatment we include them as well in the decision making.
Mo Alsuwaidan:
Have you seen family members develop things like depression or anxiety as a result of that?
Jennifer Leong:
Absolutely. I think if we look hard enough and we make it consciously in our mind to actually engage them in a conversation every day during the clinic, we'll be able to pick up subtle signs that perhaps shows that the caretaker is not coping very well with this situation and that's when we offer help to intervene early.
Mo Alsuwaidan:
And have you seen situations where if the caretaker or family system is not coping well, that that actually has a negative impact?
Jennifer Leong:
Yes, absolutely. It has a negative impact on not just the whole holistic care of the patient as well as the communication breakdown. And patient may end up not being very compliant to treatment as well.
Mo Alsuwaidan:
So, you have a tough job on your shoulders because you're breaking the news to the patient and the family. And then you're also trying to counsel all at the same time.
Jennifer Leong:
Yeah. And you're taking care of both the patient, the clinical part of it, the emotional wellbeing, as well as then including the family into the whole equation.
Mo Alsuwaidan:
I want to come back to that in a bit, because really it does take a village or a system of care. But coming back to you, Dr. Choo, what was your family reaction like when you first got diagnosed? You said you were very young. How old were you at the time?
Choo Mei:
I was 27.
Mo Alsuwaidan:
27. That is quite young.
Choo Mei:
Yeah. And I didn't have any family history of cancer, so it was definitely a shock to my family. My mom was a pillar of strength because she was with me when I was doing my colonoscopy. And when the gastroenterologist walked in with my results, he was mumbling.
Choo Mei:
I think he didn't know how to break it to me because he already knew it was cancer, because I guess they can see while they were doing the scope, but he said that they sent it for biopsy. But I knew biopsy meant, it could be cancerous. So, when he mentioned the word biopsy, I started crying.
Choo Mei:
But my mom was surprisingly calm. She was like, "It's okay. It's okay." And I forgot to take the medication with me while I went to the car. But when I messaged my dad, because he was overseas at that point of time, he cried the whole night. So, that was my parents.
Choo Mei:
And my boyfriend at that point of time, he's now my husband, he didn't know how to deal with it because it just came as a shock to everyone.
Mo Alsuwaidan:
I've noticed that as a practicing psychiatrist, that sometimes people around us don't have to have the answer, but just crying with us or just being shocked with us really helps. And that you just don't feel alone. I don't know if you've had patients where they don't have an extended support system. That feeling of loneliness, I think, is very impactful.
Jennifer Leong:
Indeed. I think when you have family support, it shows a world of difference when it comes to their treatment. Just by being there, and like your mom having a listening ear. As soon as sometimes I offer tips, because sometimes family members ask, "What can they do to help?" Because sometimes you're speechless. You don't know what's the right word to say. Sometimes even saying something like, "Are you okay?" They sound wrong.
Jennifer Leong:
So, what I do is I offer them tips like offering physical help. So, a lot of time, especially female patient, to be very worried about their children. So, it's simple things like taking them to school, offering to fetch them back from school-
Mo Alsuwaidan:
Helping them with their normal routine.
Jennifer Leong:
Yeah. And trying to offer some physical help means a lot of difference to these patients.
Mo Alsuwaidan:
Absolutely. I want to talk about systems of care and there's studies showing worldwide that there are barriers to mental health care within cancer treatment. How have you experienced these barriers in your practice?
Jennifer Leong:
Yes. So, in Malaysia, and possibly in a lot of part of the world, we find that a lot of patients are diagnosed at stage three or four cancer, at an advanced stage of cancer. I think that's partly because of stigma. Stigma prohibits them from coming early. Stigma prohibit them from wanting to know if it's cancer because they know the implication, they might need chemotherapy.
Jennifer Leong:
And so, I think it's the same with mental disorder. So, there's a lot of stigma that revolves around this team. So, we need to break this barrier, have open communication, and as a physician, we're the first person to reach out to the patient, to tell them that, "It's okay, it's being brave and you recognize this early. And by intervening early, you can actually improve the disease outcome."
Mo Alsuwaidan:
Dr. Choo, you were in a unique situation. You mentioned that you had training or you were at the time training in psychology.
Choo Mei:
Yes.
Mo Alsuwaidan:
But as a person working in mental health, we're not immune, we're human beings. Was mental health support or care part of your journey in treatment?
Choo Mei:
So, the thing was I have to say my journey was a very lonely one, because trying to find someone in their 20s, having colorectal cancer in Malaysia is very difficult. And besides my family and my friends, my friends can try as much as they want to support me. And I really appreciate them for it. It's very different from someone I could relate to.
Choo Mei:
So, I did ask friends for people they might know. And my friend recommended me to a nun who was 80-years-old, who was wearing a colostomy bag at that time. And I was wearing a colostomy bag in between surgeries and I just wanted someone to talk to. But after talking to her, I realized that we are in a different age group, a different generation.
Choo Mei:
So, it was very difficult to relate because for me, I wanted to know what to wear. I know it's very shallow, but it's something very important to me at that point of time, how I look and how the colostomy bag would look when I go for meetings or when I go for things. And I still wanted to lead a normal life.
Choo Mei:
So, in terms of my mental health, I would say that I always remembered my training on how the rate of depression is 50% to having cancer as well. The correlation is really high. So, I always reminded myself to get back up every time I had an emotional breakdown.
Mo Alsuwaidan:
Were there things you would do in your day-to-day life to help you get back up?
Choo Mei:
I always try to keep to a routine of some sort. Although I was really weak, I would try to walk at least, once I started when I was able to walk, I would start walking and I would read and ensure that when I'm able to fully function even with the bag, I wanted to still go for events and meetings.
Mo Alsuwaidan:
So, having a routine, having a sense of meaning and purpose, I think. Absolutely. We talked about stigma earlier and how cancer stigma correlates with mental health stigma. Staying with you, Dr. Choo we talked about this earlier. How have you experienced stigma with both the mental health aspect and the cancer diagnosis aspect?
Choo Mei:
So, before coming back to Malaysia, as I was studying in the States, I knew that in Malaysia, the mental health stigma is very real. And things like depression, anxiety, until today, I still hear people saying, "Oh, that person is just self diagnosing. It is probably fake." When a lot of people we know, for example, they say they have depression or they have anxiety, then a lot of others would question, "But how do they know they have anxiety?" So, that's the mental health part.
[MIDROLL]
Mo Alsuwaidan:
I want to come back to the advocacy in a bit, but coming back to you, Dr. Jennifer, when a person has mental health aspect to their cancer care that's severe enough to warrant intervention, talk therapy or medication, is that something you initiate? Is that something you have a team member initiate?
Jennifer Leong:
So, I usually refer them to the specialist like yourself or a counselor to start with. And if a psychotherapy or medication is warranted, I'm full on with it. I'm on support with it. Because I think it's important that the patient gets the best help as early as possible.
Jennifer Leong:
What I'll do is that I'll sit with my pharmacies and go through those drugs and see if it interacts with any of the targeted therapy or immunotherapy or chemotherapy. And that's basically just for best practice to make sure that the patient's safe.
Mo Alsuwaidan:
What sort of reactions do you get from patients when you suggest mental healthcare? Do you get some people, very accepting and then some think, "Why are you referring me to a doctor for mental issues?"
Jennifer Leong:
You get both end of it. So, usually I think what's important is to establish that rapport with your patient. So, my patient treats me like a friend. So, once you have break that barrier of communication, they're more willing to accept whatever recommendation because they know that you have the best interest at heart.
Jennifer Leong:
So, when I start seeing that they can't cope, well, there are subtle things, or family members offers history, like they're very short at family members. They're a little bit more withdrawn because we must know that some symptoms may be overlapping with symptoms of their cancer treatment or from their cancer.
Mo Alsuwaidan:
Fatigue for example.
Jennifer Leong:
And so, I think physicians also have a role to play to not just minimize these symptoms and say it's partly because of your cancer. Fatigue, loss of appetite, lack of sleep, insomnia. So, it's important to be able to differentiate those two and pick up subtle signs and then offer the patients help.
Jennifer Leong:
And a lot of time my patients would be very happy to go for it but there will be those who are refractory or they're fearful because they're being labeled as needing to see a psychiatrist.
Mo Alsuwaidan:
I think what you're talking about is so essential because when we talk about comorbidities across healthcare, not just mental health, the debate is do you treat sequentially or concurrently? And I think because as Dr. Choo said earlier, the mental health aspect can make the cancer diagnosis worse and vice versa. And so, I think most studies show that treating concurrently makes a lot of sense because otherwise it can be a vicious cycle.
Jennifer Leong:
Yeah. Many studies have shown that if you treat concurrently, you can improve the disease outcome. Improve patient's compliance to their treatment. And so, that's why we advocate concurrent treatment and not sequential.
Mo Alsuwaidan:
And before we get into advocacy, do you advocate for active screening in patients? I mean, do you wait until they say, "I feel depressed or down," or do a lot of clinical oncologists today actually do screenings for depression, anxiety early on?
Jennifer Leong:
I think this effort can be stepped up. So, it depends on various practices. But I think moving forward, what we should do in modern oncology clinic, knowing that mental disorders can be as high as 30%, which mean 3 out of 10 patients that are sitting in front in our clinic could be harboring some mental disorders like depression and anxiety.
Jennifer Leong:
So, instead of waiting for these things to manifest or a patient to just come to us, I think we can actually come up with simple questionnaire and have your nurses or even sometimes medical students in training to actually distribute this questionnaire and get them to answer them.
Mo Alsuwaidan:
Absolutely. Something could be done in a waiting room and before coming in. And one in three is a huge number. It's one of three people that walk into my office might have this issue. It would be a shame not to detect it because that could make their whole treatment better.
Choo Mei:
And just coming back to you, Dr. Choo, you mentioned advocacy earlier and how that's given you a sense of purpose and meaning, but also a community of support. But just walk us through that journey, how you got to this Young Cancer Survivors Group and the work you've done with them and what it's meant to you?
Choo Mei:
So, earlier I mentioned that for me, cancer was a very lonely journey. Although I had the support from my friends and family, it's very different from someone who has had cancer and in a way around my age group. So, what I did was actually scour the internet, and I found a Facebook group which was for young colorectal cancer survivors and patients and it was in North America. So, I joined the society. They would invite me for conferences in North America.
Choo Mei:
And it was through them that they could understand me and I could understand them. They would make jokes and I could understand and laugh about it. It's very funny, only colorectal cancer patients could understand. But they talk about toilet paper and I could laugh out loud because I understood exactly what they meant.
Mo Alsuwaidan:
And you felt understood.
Choo Mei:
Yeah. And I could ask questions because I had so many questions I wanted to know and they would answer me. So, this was the type of support that I could get from them. And it's through this support group, which I don't even know who they are. They don't know me because I'm in Malaysia and they're in North America. But I gained a lot of, I would say, determination to fight it and also a lot of information.
Choo Mei:
And actually, that led me to the Young Cancer Survivors Group under the auspices of the National Cancer Society of Malaysia. I told them I need to start a Young Cancer Survivors Group. And when I started it, there were some challenges because of the stigma and cultural taboo of cancer in Malaysia.
Choo Mei:
But now, today we have a group of more than a hundred over people of different types of cancers. And when they first enter the group, they have so many questions you can only imagine. But our challenge as the young cancer survivors are very different from the other cancer support groups which are usually mostly older, they're retirees, and they get to see each other every day.
Choo Mei:
But for us, we don't get to see each other every day, maybe once a month. And that's really trying our hardest to see each other once a month. But it's through the internet that we connect with one another, ask questions, and more importantly is the support that we give each other through actually a WhatsApp chat group.
Mo Alsuwaidan:
And it's amazing use of technology too. Because as you said, it's a different stage of life. Young people, and you're doing all this but you're also in this period of life where you're working, trying to pay the bills.
Choo Mei:
It is really a different challenge because in our age group, it's all about they're either studying while getting treatment, while also worrying about the finances and what their family members are feeling.
Mo Alsuwaidan:
And relationships.
Choo Mei:
Yeah, and relationships. Some are thinking, "Can I get a boyfriend?" For the girls who have ovarian cancer or cervical cancer. So, these are very legit issues that-
Mo Alsuwaidan:
And tough questions.
Choo Mei:
They're facing. Yeah. And they feel free, and they can ask those questions in the group. And no one judges because we all understand one another. There are people in our group that they're afraid to get married because they're afraid that they might not be alive maybe in a few years time for their spouse.
Mo Alsuwaidan:
And really, if you're not speaking to someone who's been through it, who can you ask that question to? Really, no one.
Choo Mei:
No, no one.
Mo Alsuwaidan:
No one would get it other than maybe a healthcare team who's seen this a lot. But no one's experienced it unless they've been through it.
Choo Mei:
No. And you can only imagine how difficult it is to work, try to find the money to pay for your treatment yet thinking, "Should I get married or should I even have a partner?" So, all these questions are actually what causes mental health problems, anxiety and depression.
Mo Alsuwaidan:
And has that work given you a sense of purpose and meaning? You mentioned you're a youth ambassador with the-
Choo Mei:
Yes. So, as the Youth Ambassador for National Cancer Society in Malaysia, besides leading Young Cancer Survivors Group, try and get us together at least once a month, which is really difficult, is patient advocacy and trying to let people know, "Hey, we are here. Don't feel afraid to join us." Or if your parents don't allow you, we will try to talk to them to allow you to join this group. Because this group will be able to help you and give you the confidence you need to answer all the questions that you have.
Mo Alsuwaidan:
I've traveled all over the world and worked in mental health, and I find first of all, two things. One, it's very inspiring. And secondly, it's not unique to Malaysia. You see this all over the world, these same challenges and diagnoses that have stigma like cancer and really human beings in the end we want this sense of community not to be alone. And for patients to create that with the support of the healthcare team.
Mo Alsuwaidan:
I want to get your final thoughts for our listeners coming back to you, Dr. Jennifer, what's your advice to cancer patients that are going through a tremendous emotional, mental health impact, maybe to the degree of being diagnosed with depression or anxiety? What's your message to them?
Jennifer Leong:
That you're not alone. We know that it's tough to have to deal with the cancer. The diagnosis itself, as well as the treatment journey is not easy. So, you're brave. Come up, step up and just seek for help early and speak to your oncologists about it.
Jennifer Leong:
Do not be embarrassed. And there's so much help these days and just like Sze has gone through. So, go for a support group. I think the best kind of support that you can get from the survivors group because they can understand each other better.
Mo Alsuwaidan:
Absolutely. And I'm sure you've worked with some of these groups or maybe gotten-
Jennifer Leong:
Yes. And I have my young patients who is also undergoing the group, and they've done tremendously well. And I'm very proud what Dr. Choo has done for the country.
Choo Mei:
Thank you.
Jennifer Leong:
As a young survivor.
Mo Alsuwaidan:
Dr. Choo Any final messages to our listeners and viewers?
Choo Mei:
I think earlier, echoing your thoughts, a cancer diagnosis is very difficult. Like Dr. Jennifer mentioned, her job is a really difficult one to break the news. So, for those of you who have just been diagnosed with cancer, know that you're not alone.
Choo Mei:
If you're a young cancer patient, do join us, the Young Cancer Survivors Group from the National Cancer Society of Malaysia. We are able to help you, give you the support that you need and answer all the questions that you have. And I'm sure there are tons of questions. We even answer questions like, "What supplements should I take?" Which is very common in Malaysia.
Jennifer Leong:
Or what food can I not take?
Choo Mei:
Yeah. What should I eat?
Mo Alsuwaidan:
Well, I can tell you from my visit to Malaysia that the food is fantastic here. But to echo what you're saying, what's happening in Malaysia is happening all over the world. I think wherever our viewer or listener is from, they can find a local society to help them.
Mo Alsuwaidan:
And as you know, if you can't find one, what you did was very resourceful. You reached out to North American societies and then you build something. And there's nothing stopping anyone listening to do the same.
Choo Mei:
Yes. I learned a lot from them and I kind of took the best practices there and applied it here.
Mo Alsuwaidan:
Well, thank you both so much. It's been an honor. I've been inspired and I'm sure our listeners and viewers feel the same. Thank you for your time. Thank you for all the tremendous work you're doing and it's been a pleasure.
Jennifer Leong:
Thank you, Dr. Mo.
Choo Mei:
Thank you so much, Dr. Mo and Dr. Jennifer.
Mo Alsuwaidan:
Cancer is a word that's scary to so many people across the world. Yet what I've learned as a mental health specialist is that the best antidote to fear is knowledge. I'd like to thank our special guests for helping impart that knowledge, not just theory and science, but importantly, experience.
Mo Alsuwaidan:
I've been a practicing psychiatrist for over two decades, yet I'm not immune to the human emotional impact of having a family member or loved one diagnosed with cancer. And what I've learned was reiterated in the episode today, you're never alone.
Mo Alsuwaidan:
Be a health advocate for yourself and for your loved ones. Reach out to your support systems and the healthcare system and remember to speak out and to listen well.