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What happens after a woman gets a breast cancer diagnosis? Is our healthcare system equipped to support patients throughout their breast cancer journey? To mark Pink October, as Breast Cancer Awareness Month, in this episode of #TheFutureIsFemale Melisa Idris speaks with Sumitra Selvaraj, General Manager of the Breast Cancer Welfare Association Malaysia (BCWA) and Dr Suwarna Ramanathan, Assistant Manager for Patient Support Services for National Cancer Society Malaysia (NCSM).
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00:10Hello and good evening. I'm Melissa Idris. Welcome to The Future is Female. This is the
00:15show where we find the extraordinary in every woman. October of course is Pink October. It
00:20is Breast Cancer Awareness Month and today on the show we want to talk a little bit about
00:24how Malaysia is moving towards earlier diagnosis of breast cancer. However, getting patients through
00:31the door and getting diagnosed is only the beginning because the question we want to ask
00:36is what happens when the diagnosis is breast cancer? Can our health system deliver timely
00:43diagnosis, affordable treatment and adequate support once a woman is diagnosed? Joining me on
00:50the show today, I have Sumitra Selvaraj, General Manager of the Breast Cancer Welfare Association
00:56Malaysia as well as Dr. Suwarna Ramonathan who is the Assistant Manager for Patient Support Services
01:02for the National Cancer Society Malaysia. Welcome to the show both of you. Thank you so much for
01:07joining me. Sumitra, if I may begin with you. So we always talk a lot about early detection especially
01:13during Breast Cancer Awareness Month. We want women to go and get screened and get tested and get
01:19diagnosed. But if the diagnosis is positive, if it's breast cancer, where do they go from there?
01:28So, of course, you know, as much as possible when we go out into the community and we do our
01:34outreach
01:35and screening and help women with their clinical breast examinations, we do tell them, of course,
01:40that, you know, don't worry, 90% of lumps are not cancer. Yes. Of course, there is always that small
01:47chance that it may turn out to be cancer. So the first thing that they will need to do is
01:52get
01:52themselves into a diagnostic facility that is able to determine whether the abnormality is cancer or
02:01it isn't. And here is where BCWA actually works very closely with NCSM. What we do is we channel these
02:08women to NCSM or we tell them, choose a public or private hospital of your choosing to go and get
02:14your
02:14mammogram done. And if it does turn out to be cancer, then we navigate them through next steps. You will
02:21then
02:21need to get yourself to a breast surgeon, an oncologist and a whole multidisciplinary team that then helps you
02:28through that journey of being diagnosed with breast cancer. Can I just ask you quickly, because I
02:32remember the last time we spoke, that you did say that 90% of lumps turns out to be not
02:38cancer, but
02:40the small chance that it does turn out to be cancer. Is it very cut and dry? Is it very
02:47black and white,
02:48that it is cancer, it is not cancer? Can you talk to me a little bit about the, I have,
02:53you know,
02:54anecdotal evidence, friends who tell me that they're not sure whether it's cancer or not. Is that,
03:00is that, has that been the case or is it almost always clear that it's cancer or not?
03:04I'm going to let Suwana jump in on this in a bit, but I do want to say that anecdotally,
03:08we have seen women who have presented with zero symptoms, not even a lump. And they have had
03:16absolute difficulty in convincing doctors that they feel that something is off. And so a random
03:23biopsy is done and cancer is discovered. So yes, of course, there are 12 or 13 signs that it may
03:29be a cancerous lump, but you know, there could be absolutely no sign as well.
03:35That's right now. Yeah, no, Sumitra is absolutely right. There are patients who will present with
03:40clinical changes, with symptoms, and rightly so, they should go get screened. But there are also a lot of
03:45issues, or I suppose challenges surrounding that, where there's fear, stigma, and a bunch of other
03:51structural issues concerning that. It's a whole other topic to dissect. But then when we come to
03:56patients without symptoms, as Sumitra has correctly highlighted, it's just the importance of screening,
04:04which is something that we do raise a lot of awareness at NCSM, both NCSM and BCWA.
04:10A lot of cancers can be detected at an early age, and especially if you do get, so this comes
04:17into
04:17early breast cancer, which is what we would like to raise awareness about, is if you were to be,
04:23these cancers are about 70% to 80% curable. And a lot of times when you get detected with
04:29early
04:29breast cancer, what it means is, you know, stage 1, stage 0, stage 2 breast cancer. And the earlier
04:36you find it, the aim of treatment is to cure. And it's not to say it's lesser than the other
04:44cancers,
04:45every cancer is a unique journey. But the struggles, the personal struggles that patients might have
04:50would be quite similar across the cancer patients as well. May I just clarify, you said stage 0?
04:56Yes, stage 0 as well. What does that mean? So, stage 0 is, well, I will try to keep this
05:02as
05:03layman as possible. Yes, yes please. It is when, it's within cancer, there's of course, you know, staging,
05:08grading, a lot of different stages, and it's quite scientific in the way they do it. Stage 0 is, I
05:14believe,
05:15when it's still within the breast. Okay. And it's a specific type of cancer as well. But a lot of
05:20this will be identified through the screening that you go through, so you don't have to, you know,
05:24think about stage 0, 1 or 2, leave the doctors to think about it. What you have to do as
05:29audiences,
05:30or as general population, is just get screened. Okay. And irrespective of the stage, there will be
05:36a plan to follow through with it. So, I can add on to that. So, when you talk about stage
05:420 diagnosis,
05:43you're looking at what is considered a pre-cancerous diagnosis. What shows up in the breast is
05:52actually microcalcification, tiny, tiny white spots on your film of the mammogram. A radiologist once
06:02very poetically described it to me as stars on a night sky. That's what it looks like, little flecks of
06:10white against a black film. And that gives you an indication that it may be cancer. Okay. So,
06:16when cancer is discovered at that stage, you're talking about incredible survival outcomes. Okay.
06:23So, the aim is to cure. Absolutely. So, talk to me about the patient journey. When you mentioned
06:31navigating the next steps, what does that look like? Maybe you can map out the patient journey
06:36for us. Maybe I can get you to begin. Okay. Yes. So, what would you do as a patient? If
06:42I had to
06:42walk through the journey, I would go in to see my breast surgeon and make a decision as to
06:49what the treatment is going to be. And now, this would not be a treatment that's just made with a
06:56singular person. Maybe your oncologist gets involved as well. Okay. Now, that's just the treatment side
07:03of things, the surgery and the treatment side of things. Whether you have chemotherapy or radiotherapy
07:07or any or just plain surgery, it really depends on your individual type of cancer. Okay. And how you are
07:15responding to the medication. There may need to be tiny tweaks done. There may need to be a change
07:21of medication wholesale. It really depends on your own journey. And this is why we say breast cancer
07:27is different in every single woman. You can have the same subtype of breast cancer across two women.
07:33They can have the same medication. They can have the same kind of drugs. But it may be two very
07:40different outcomes. Okay. It's really different in both women. So, once that part is kind of over,
07:47or maybe even simultaneously, the other important part of the patient journey is support. Right.
07:52Yes. Now, support is both external and internal. So, when we talk about internal support, it's your own
07:59kind of your network, right? Whether it's your partner or your caregiver, your family, your friends,
08:04your colleagues, they kind of rally together and get you through this. But you may also feel that
08:11nobody understands what I'm going through. And perhaps the only other person that might be able
08:18to get me through this is another breast cancer survivor. That's where peer support comes in. Exactly.
08:24Okay. So, the patient pathway, the patient journey is to each individual patient. It's unique to each
08:32individual patient. But maybe you can weigh in on how they navigate it. Is it a difficult process to
08:40navigate? Is there someone who helps with the patient navigation? Yep. This is a wonderful
08:46question because I run the patient navigation service in NCSM. So, I'll be able to tell you the sort of
08:50patients that we see on a daily basis. But I'd also like to touch upon the journey. As Sumitra has
08:56pointed out before, you would meet your surgeon, you would meet your clinical oncologist. There's a whole
09:01multidisciplinary team that is involved in your treatment. But I think we should also take a step
09:06back and we should have a look at the general population. First step is getting screened.
09:10Okay. First step is getting your mammograms, getting your ultrasound. But this is, you know,
09:15assuming that the patient has had some form of changes, some symptoms, get screened. Potentially,
09:20there's some positive findings, which then leads you to a biopsy. And now I'm just, I'm going to put this
09:27as a stage, as a continuum because you've got screening, you've got diagnosis, you've got
09:31treatment and support. So diagnosis involves biopsies. It might involve multiple different
09:36testings and imaging of many sorts. Then you go into getting diagnosed. Then this is where you meet
09:43the, you know, surgeon, you meet the oncologist, and then you move on to get your treatment. And that's
09:49a whole process of its own. And then you get into support where it's about dealing with your side
09:54effects, you know, lymphedema, infertility. And you know, side effects are also what you call
10:02particular to the treatments that you're getting. But what I'm trying to highlight is that there are
10:06many gaps in which a woman can fall through the cracks as I have drawn out the continuum. And this
10:12is
10:12where I suppose a good thing to say is cancer care doesn't fail within the hospital. It fails in the
10:20gaps in between the appointments. And the gaps could be due to, you know, as I said before,
10:26fear or stigma. It could be due to lack of navigation. And this is, this is a woman that's going
10:31through,
10:31you know, a diagnosis. If they are literate, so we're coming back to health literacy, we're coming
10:36back to socioeconomic factors. This is the whole ecosystem that we're talking about. It looks into if
10:43the woman is empowered enough to be able to get this information on her own. But this is also where
10:47external support comes in and you have family to come in to help. They also say this thing where,
10:52you know, when a woman gets diagnosed, the entire family goes through treatment.
10:58Wow. And this is, I would say this is irrespective of like the type of cancer,
11:04but more so with women, you know, with the, with the societal expectations of a, of a woman.
11:08Got to look into childcare, got to look into transport, accommodation while you're going through
11:13treatment, loss of income, loss of income, especially if they are part of the gig economy.
11:19So I think the, the journey is very important. I think one of the things that is this framework
11:25that we have recently worked together, partnered up with BCW and NCSM called the Breast Cancer Care
11:32Quality Index framework. Right. This was done in due with the WHO's
11:39GBCI Global Breast Cancer Initiative and it really looks at the, I suppose, standard of care in Malaysia
11:46with regards to breast cancer care specifically. Right. And the gaps. And the gaps. Yeah, that was,
11:52that's very important, the gaps. So, so who's this framework for? So you've mapped it all out.
11:57Is it for policymakers to see where women fall through the gaps in the continuum of care? Is that,
12:04the idea of it? Yeah. Yeah. So the BCCQI framework, if I may, is an international framework. It has been
12:10developed by a group of very intelligent people, of course, and in line with international standards.
12:16And the whole idea is to be able to provide a tool for countries to be able to map out
12:21their breast
12:22cancer care. And this assessment was done in Malaysia to look at the gaps that we have. And one of
12:27the things
12:27that they've highlighted is a lack of mandated national patient navigation framework, patient
12:36navigation program. The other thing is also a survivorship. Sorry. That's right. Survivorship.
12:41A survivorship care plan as well. So once you get diagnosed and you get treated, what's your survivorship plan?
12:47But just touching on patient navigation, as that was part of the question before,
12:52patient navigation is incredibly crucial in our fragmented healthcare system. I love our healthcare
13:00system. Yeah. But we've got the private hospitals, we've got the public hospitals, then we've got the
13:05you know, clinics. As a medical professional, I'm able to understand the system. Right. But I cannot expect
13:11patients from all different backgrounds to be able to just, you know, off the top, yes, I'm going to go
13:16into,
13:17you know, KK today, I'm going to get that referral, which will allow me to go to the public hospital,
13:22and then I can get the appointment on this date, and I have to do this, this, this. I cannot
13:26expect that
13:27from... It's overwhelming. It's overwhelming. I can only imagine, isn't it? Yeah. Because you're already
13:32dealing with a diagnosis. Right. And then you're being asked to navigate through yourself, through the
13:39healthcare system. And perhaps you're being asked to navigate your family through the healthcare system as
13:43well, who have all these questions for you as to, you know, why are you going here and not doing
13:48this?
13:48Or why are you not doing this instead of that? Or neighbor auntie told me that you should go here.
13:53Exactly. Or you know, this doctor is better than that. And also, time is of the essence, isn't it?
13:59It is. So, you know, you're thinking about which tests need redoing for private and public,
14:04and there's no kind of standardization or sharing of digital records is another issue.
14:11Very important. So, how would you like to see patient navigation, that gap of patient navigation,
14:19resolved? What would be an ideal? I think that goes back to your previous question as to what would
14:30you like us to do with the framework, right? You mentioned, would you like it to see, would you like
14:37it
14:38to go to the hands of policy makers? I would love for it to go to the hands of decision
14:44makers.
14:45Oh, okay, okay. Because decision makers are the ones who are going to help us put a patient
14:50navigation plan, a national patient navigation plan into place. What does that look like for us? You
14:57know, something really as simple as having patient navigators situated at every hospital,
15:04district as well as smaller hospitals. A breast cancer patient walks in, has surgery, opens her eyes
15:13after surgery, and there's somebody sitting by her bedside saying, I know what you're going through,
15:18and I'm here to hold your hand. Because I've been there too. This is what we do at VCWA. This
15:24has been
15:25our philosophy for 40 years now, that the lived experience of a woman with breast cancer will positively
15:30impact the life of another. So this patient navigation gap is being currently filled by CSOs,
15:36by NGOs? Yes. Okay, so hopefully we can make this an institutional, part of an institutional framework.
15:44Do you mind if I move on to the survivorship plan? Because I thought that was quite interesting.
15:49You mentioned patient navigation and survivorship as gaps that the framework identified. What is
15:54survivorship plan? Can you maybe elaborate a little bit about it first? Yes. So a survivorship plan is
16:03essentially when you've completed your treatment, what's next? What does the follow-up look like?
16:11But I think it's very important to also emphasize that it's not fully clinical. It's not about is the
16:16cancer coming back and that's it. But it should be more about how is life after cancer, after your
16:23treatment? How are your side effects? Say potentially if the patient might have this symptom called a
16:29lymphedema, where they might have swollen arms perhaps after surgery. How do you manage that? How do you
16:35manage body image? How do you manage, what do you call, say for example, if they were to get a
16:41mastectomy and
16:42they need a prosthesis and you know to get special bras? It's all extra cost by the way. But how
16:47do we
16:47manage intimacy, fertility that comes with some of the treatments that you're on? And of course,
16:53all these conversations are different for every patient because it depends on the treatment they've
16:59gone through, the surrounding factors, family support. But a survivorship plan, a good survivorship care
17:09plan should involve all these different facets. This is why lived experience is so important. Someone
17:13who hasn't gone through it cannot even begin to imagine all the different ways it affects
17:19a survivor. There was another aspect to the survivorship plan as well, which is I think
17:27something that we've talked about at length. And it is the fact that especially when it comes to early
17:34breast cancer, top of mind is return to work. Many of these women have lost their jobs because of their
17:42breast cancer diagnosis, either because they have been let go or because they simply cannot afford to
17:49work anymore with the treatment that's going on. But then what happens after treatment? They may not have
17:57the option nine times out of 10 to return to their original workplace. If you've got a supportive boss,
18:03great. But more often than not, you know, they're out there. And number two, you need to think about,
18:11this is going to sound really horrible and callous, but as an employer, would you hire a breast cancer
18:16survivor? Because there are many employers out there who wouldn't, who would say, well, what if your cancer
18:22comes back? How can I take on that cost? This sounds like a horrible thing to say out loud. But
18:28it's
18:28the reality. It's the reality. And we need to talk about it. We need to talk about that this is
18:33what
18:33women go through. Goodness me. Can you weigh in a little bit about the type of women who are currently
18:41being missed by the support system? Like you talked about the people, the women who dropped through the
18:47the gaps. Who are these women? Are there groups of women that we need to be paying attention to?
18:53A hundred percent. If I may weigh in, young women. Cancer is getting younger these days,
19:00as they would say. A lot of younger people are getting diagnosed. And I think people with high risk,
19:07family history or considered high risk should get screened earlier as well. But I think other women
19:12that we might not be looking into are people with disabilities, non-citizens. Okay. And let's see,
19:22help me out here. Who else? Oh, definitely when we also look outside urban centers. Oh, yes. Exactly.
19:28That's a big one for us. I mean, as small as we are, we try and provide as much as
19:35we can,
19:36but it has to be within a reach for us. I would love to be able to extend patient navigation
19:43services
19:44nationwide. And we already are. We are trying to go to different states in Malaysia and teach
19:49other breast cancer survivors how to provide the sort of programs that we provide in other hospitals,
19:56in other district hospitals as well. But there is so much more to be done. Can you imagine if we
20:02had a
20:03national survivorship plan or a national patient navigation plan, it would mean that we could pay
20:09people to be patient navigators? It would be a job. Why isn't that a job? And it's being done in
20:17the
20:17Philippines and in the United States as well. So this is not new. And a lot of patient navigation
20:22currently in Malaysia is done by CSOs such as CRM, NTSM, BCWA. But imagine a world where you actually
20:30have patient navigators as actual staff, part of the hospital. And I must say that it has been quite
20:36challenging as well to be able to penetrate through the hospitals to offer your services.
20:42As you know, it's people sometimes hear what they don't understand. And it's a new concept.
20:48Although it is part of the National Cancer Care Strategic Plan. Yes, I did read about that.
20:54It is there. But I suppose things take time. CRM has done a great job in being able to penetrate
21:03through hospitals, especially for breast cancer. At NCSM, we are trying to do it for all the other
21:08cancers as well. But it has been a little bit challenging, which is why now we're focusing
21:14on community navigation, where we'd like to make it more accessible to more people.
21:18What does community navigation mean? I think BCWA also does it. But essentially,
21:24it's being available within, it's just a setting. It's a matter of setting. Are you in the hospital
21:29versus are you in community? Oh, you could meet women where they are. Correct. Yes. Correct.
21:34Yes. So with BCWA's patient navigation system, we currently have a tiny but mighty team of about
21:4224 survivors, soon to be 30, who are trained under an accredited program called Stronger Together.
21:49We have trainers who come down from the US to do this for us. And these trained peer support volunteers
21:56go into 14 hospitals now across the Klang Valley, both public and private. And honestly,
22:04when I say peer support volunteers, they are really volunteering their time. They're spending hours
22:09hours out there. But this is what it comes back to when we talk about the framework, having identified
22:15the gaps and what we've talked about extensively today in terms of making patient navigation a career,
22:22because then it feeds back into something really important that we talked about as well, which is
22:27if we give these breast cancer survivors an opportunity to make patient navigation a career,
22:33we've returned them to the workplace. To the workplace. I love how you've come full circle.
22:37Yes. Love it. Wonderful. Definitely. I'm so grateful that you've highlighted this. But in the few
22:43minutes that we have left, can I ask you for your takeaway message to our audience? This is such an
22:47important month. There will be lots of Pink October messaging out there. Yes. But what would you like to
22:54leave our audience tonight with in terms of the things that we've talked about today? What message
22:59you'd like to give them? If I may begin with you? Lovely. So I'll just leave you with one message.
23:06And I think you've probably heard about this from, you know, TikTok, social media everywhere. You know,
23:12people tell you to get used to the changes in your breast and just get used to the feel of
23:16what your
23:17breast is like. But what I'd like to tell you today is perhaps do this for me. Check yourself,
23:23find another woman around you and get them checked as well. And that's already two lives.
23:27Oh, thank you. So since Sawarna has done the part about early detection,
23:33let me leave your audience with this message. Breast cancer is not preventable,
23:39but it is survivable. Oh, wonderful. Thank you both for being on the show today. I really
23:46appreciate your messages, but also the work that you're doing, particularly in helping women
23:51navigate this really difficult diagnosis. Thank you for your time. Thank you so much for your time.
23:55That's all the time we have for you on this episode of The Future's Female. I'm Melissa
23:59Idris signing off for the evening. Thank you so much for watching and good night.