- 2 months ago
- #the
October is Breast Cancer Awareness Month, a time when pink ribbons and campaigns dominate our headlines and timelines. But behind the colour and campaigns are real women, real families, and a disease that remains the most common cancer among Malaysian women. How do we make sure awareness translates into action, early detection, and support that truly saves lives? On this episode of #The FutureIsFemale Melisa Idris speaks with Sumitra Selvaraj, Assistant General Manager of the Breast Cancer Welfare Association Malaysia.
Category
🗞
NewsTranscript
00:00Hello and good evening. I'm Melissa Idris. Welcome to The Future is Female. This is the show where
00:16we find the extraordinary in every woman. October is Breast Cancer Awareness Month, a time where
00:23pink ribbons and campaigns dominate our headlines and our timelines. But behind the colours and the
00:31campaigns are real women, real families and a disease that remains the most common cancer
00:38among Malaysian women. How do we make sure that the awareness translates into action, early detection
00:46and support that actually truly saves lives? Joining me on the show today to discuss this further
00:53is Sumitra Salvaraj who is the Assistant General Manager of the Breast Cancer Welfare Association
00:59Malaysia. Sumitra, welcome to the show. Thank you so much for joining me. Happy Pink October to you.
01:05Happy Pink October and thank you for having me. Thank you for having the Breast Cancer Welfare
01:09Association Malaysia. It is our pleasure because we want to take this opportunity to get to know
01:16you and the organisation and also maybe help us understand better this disease. Tell us a little
01:23bit about yourself, about your journey and the work that you do through the Breast Cancer Welfare
01:28Association. My journey started in publishing, public relations, meandered into broadcasting by way of
01:38astro. You know this is very much home for me here and it has been a 25 year journey of communications
01:48and along the way I've realised that the the field of communications that I'm most interested in that
01:53and that I'm most passionate about is healthcare communications. I really wanted to be able to use
01:59words impactful words to get people to be slightly less scared of medicine and science and disease and
02:11this journey has now got me into the Breast Cancer Welfare Association Malaysia which is giving me an
02:19opportunity to really you know take what I'm passionate about putting campaigns together and getting out
02:25there to the community and telling women that you know breast health is something that all of us should
02:31be concerned about. Okay well tell us more about the need to understand breast health. Tell us about breast
02:40cancer particularly in Malaysia in terms of the health burden of this disease. What are the some of the
02:47trends that you've been seeing in the past decade or so and is there anything specific about the way breast
02:55cancer happens in Malaysia or the way we present here. Okay so before going into anything at all I think
03:03it's really important to preface this conversation by saying that breast cancer is severely underreported in
03:11Malaysia. Really? Severely underreported to the point where you may know of friends or family members who
03:20don't divulge that they have breast cancer until it's too late now that is more common than you would
03:25realize. Yeah there seems to be a lot of shame and stigma that's attached to breast cancer and very
03:32often when you have people who pass away from breast cancer sometimes that's not even the cause of death
03:39that's listed so let's start by by kind of putting that on the table breast cancer is severely underreported in
03:46Malaysia. Next you have to add to this the fact that our cancer registry here in Malaysia is a little
03:55outdated. I think the last full cancer registry that we had was back in 2012 to 2016. We are in dire need
04:05of updated numbers so you know whatever statistics you're seeing at the moment are really from about
04:10a decade ago. There have been some sort of small studies done here and there but you know anecdotal
04:19at best right so what are we looking at in terms of official numbers in Malaysia we're looking at about
04:251 in 19 women who is likely to be diagnosed with breast cancer. I've spoken to healthcare professionals
04:33some within the ministry itself who say that this is likely closer to 1 in 14, 1 in 15 but we
04:40don't know and we don't want to put a number to it beyond what is official at the moment right.
04:45What else are we looking at? Officially we know that more than half or nearly half of breast cancer
04:53cases in Malaysia present at a late stage and when we say a late stage we mean we mean at stage 3 and 4.
05:01we know from our own reports and studies and kind of work that we do it's probably closer to 65 percent
05:10of cases that presents late so you know when you put everything together it's really hard to form a
05:19complete picture of how dire the situation is with breast cancer in Malaysia. As you mentioned it is the most
05:27common cancer amongst women but it is also the most common cancer period about 19 percent of all new
05:35cancer cases that were reported between that registry period was for breast cancer. Okay so talk to me a
05:42little bit about some of the things that you mentioned in terms of the late presentation why is it or what
05:48are some of the main reasons that Malaysian women present late and you mentioned stigma but are
05:54are there other issues what are you hearing when you do your community outreach work? Well this is a
06:01really good place to start what the Breast Cancer Welfare Association does is we travel around the country
06:07providing free clinical breast examinations to women all over Malaysia you have to be at least 21 years
06:13and above to get a clinical breast examination and a clinical breast examination or a CBE is a manual
06:19examination of your breasts by a trained and registered nest of which we have a team of now they go into
06:26one of our mobile clinics we have our pink moorny vehicles that you know trundle around the country
06:31we have inflatable mobile clinics that can go indoors into malls universities corporate spaces and over the
06:38course of the year just I think last year alone we did about 7600 free clinical breast examinations
06:45now that um it it dredged up about 338 suspicious findings wow here is the issue about half of those
06:59suspicious findings belong to women who were uncontactable even though we register them even though they
07:08provide personal details which are protected of course but when we find a suspicious finding and we want to
07:13follow up with them we discover that they have given us their a false phone number or false
07:18information because they do not wish to be contacted they probably know that they have a lump
07:25they have come to the clinical breast examination for confirmation of their fear but they don't want to
07:32do anything about it wow how do you respond to those cases well all of our all that our nurses can do
07:40is follow up as much as possible and our nurses are so very diligent on days that we're not going out
07:45there doing community outreach our nurses in the office trying to contact these women you know there
07:50have been cases where sometimes when a extremely large lump has been discovered our nurses will take
07:56the initiative of trying to go to that person's house and saying you know can we perhaps accompany you
08:02to a mammogram appointment so beyond the stigma do you think there is a fear of that diagnosis a fear
08:10of beginning the journey as a breast cancer patient yes okay yes walk me through that journey what is it
08:16that um a woman can expect so if she finds a lump tomorrow and goes for screening and is a suspicious case
08:23yes so what you would need to do is if you have a lump and and you find that you know it's a suspicious lump
08:29the next step then too is to go into some form of diagnostics so if you are below the age of 40
08:36there would typically be an ultrasound if you're above the age of 40 that would be a mammogram typically
08:42you would be asked to do a mammogram and an ultrasound as well if you're above the age of 40 just to
08:47double confirm right once that is done and if there is a further suspicion at that point then a biopsy is
08:54done breast cancer can only be confirmed at the point of a biopsy but the radiologist who does your
09:01mammogram will be able to tell you at the point of getting a mammogram whether you need to move to the
09:05next step or not and breast lumps are more common than we think i mean i have absolutely no shame in
09:12telling you that i have a lump in my breast that i've been walking around with for the last six years you
09:17know i discovered it five six years ago uh it's remained the same size i do my yearly mammograms
09:24it hasn't moved last actually earlier this year my radiologist was extremely happy he said lump is
09:30behaving itself he said let's let's make your mammograms once every two years wow not all lumps are
09:36cancer okay well then i think we have to zoom out or rewind a little bit and talk about breast health so
09:42from your work your experience what is the single most misunderstood concept or thing that most
09:49Malaysians believe about breast health and breast cancer i suppose it would be the fact that every
09:55lump is cancer 90 percent of lumps are not cancer okay but having said that we don't want you to take
10:03a chance with the 10 percent absolutely right absolutely um this fact uh sits alongside uh a really
10:11important fact as well which is the the misconception that um i will not get breast cancer because nobody
10:19in my family has it uh genetics only accounts for about five maybe ten percent of cases 90 of breast
10:29cancer is spontaneous it's out of the blue which is why if you know a breast cancer survivor they are
10:36more likely to say to you i don't understand why this happened to me absolutely so yes i i think that's
10:44one of the most um prevailing narratives of breast cancer that it there has to be a hereditary component
10:52to to it i'm i'm so moved or um affected by the stories of the women who are uncontactable yes in
11:00suspicious cases talk to me about um how we can prevent women from falling through the cracks of
11:10this system so especially if you think of the people who are hindered by stigma or shame or fear
11:18are there ways to overcome some of those barriers what would you say to them well i think a start would
11:25be to start building on this idea that we need champions within communities to be able to um push
11:34this idea that breast health is something that we should be thinking about every month and not just
11:39during pink october yeah absolutely there are there are plans in the pipeline um for bcwa malaysia to push
11:48out the new plan next year that will really look at championing um you know community uh led outreach
11:57at the moment our nurses are out there but you know as i've mentioned we are six covering the
12:02entire country providing free clinical examinations yes more resources would mean more nurses and all of
12:08that um but i think it's about time people within communities started taking this into their own hands
12:15so if we had you know a woman who was within let's say a ppr flat or within a kampung or within a
12:21school who is taking it upon herself to send out those reminders don't forget your monthly breast
12:27self-examinations don't forget to you know do your clinical breast examinations shall we invite the
12:34breast cancer welfare association malaysia let's say in march next year to come and do cbes somebody needs
12:40to take that kind of role on and you know who is going to be this community champion well we hope to
12:45answer this question next year uh but you know for now we're just chugging on you know trying to roll
12:51out our own programs what have you experienced in terms of the patient journey in malaysia so a survivor
12:58of breast cancer when she goes through that journey um are there gaps in terms of supports that you see
13:07really need to be addressed um or do we have a good um support um ecosystem here in malaysia to answer
13:16that question i'll take you back 39 years to when the breast cancer welfare association malaysia was
13:21first set up oh why has it been 39 years uh so back in 1986 it was a group of doctors who got together
13:30and who realized that you know you can do surgery and chemotherapy and radiotherapy to treat breast cancer
13:37but there needed to be something a little bit more to get through breast cancer and that little bit
13:43more was peer support so when bcwa malaysia was first set up it was to um you know promote this
13:51idea that we wanted breast cancer survivors to come together to support the newly diagnosed our philosophy
13:58is that the lived experience of a woman with breast cancer can and will positively impact the life of
14:05somebody going through something similar and i can tell you 39 years later we still believe in this
14:10philosophy because we have a team of patient support volunteers breast cancer survivors themselves who
14:16go into select hospitals within the klang valley sitting down by the bedsides of you know women who
14:23are newly diagnosed to say you are not alone that makes lovely sense in terms of having someone who has
14:33that experience to hold the hand of someone who's nearly who's beginning this this journey um that's the
14:40welfare parts of the name of the association isn't it um but survivorship is is more than just going
14:49through that journey it's um the long-term needs of women after yes getting all the clinical care
14:57um walk me through where you've identified are the areas where women need the most
15:05support in terms of welfare so um the work that we do at bcwa does cover three pillars i've covered
15:14two pillars for you already i've covered the the support pillar which uh you know very much deals with
15:19how we support the newly diagnosed i've covered the educate pillar where we go out to the public
15:24right the middle pillar is where we share resources with people who live with breast cancer and i say
15:30live with breast cancer because breast cancer is now becoming a chronic disease people are living
15:36longer and longer with breast cancer with advances in pharmaceuticals you know it's it's not unheard of
15:43to you know get past your first five years first 10 years we have people who have lived with breast
15:48cancer for 20 30 40 50 years okay right so now it comes down to what do you need right off the bat
15:56right so we do provide a sense of community we do have activities within bcwa we have bowling clubs and
16:02a choir and you know social activities to get people together but what we've also noticed in the last
16:09couple of years is and this conversations that have come up more and more you know the financial
16:13toxicity part of it is real what do you mean well breast cancer can be an expensive affair if you've
16:21lost your job because you're a breast cancer patient that's you know potentially half of your family
16:28income gone who's going to kind of look after the kids when you're out getting um treatment who's going
16:36to be able to you know pay the bills all of that matters so you've got to think about a long term
16:43plan when it comes to breast cancer which is why you know um we do try and tell people that it's
16:50it's a long road ahead of you but the idea that i don't want to find out if i have breast cancer
17:00doesn't help the journey in any way shape or form you're going to go through the journey either way
17:05i i i think about how a diagnosis could affect families and care simply because of the um the
17:16gendered role of women in households as a care provider are there community supports for families
17:26and carers for the women who go through this this journey or live with breast cancer i'm not aware
17:32of uh you know a sort of very organized way of doing it you know there are many many
17:38ngos that do the work that we do you know even smaller support groups but whether there is overall
17:46support uh i i don't know about that i can tell you that it can be incredibly difficult i'll tell
17:53you a little story it was my first week or two of you know being a part of bcwa malaysia and i was
17:59manning the the reception counter because at bcwa we do everything we do everything if i have to
18:04to drive the morning mobile clinic one day i'll get my license and i'll do it okay um and i was
18:10manning the reception counter and i had a phone call from a survivor who said to me that i'm so
18:14sorry but i'm going to have to miss the group counseling session that we have coming up this
18:20saturday we do a free group counseling session once a month for patients and caregivers to come by and to
18:27share how they're feeling right and she said oh you know i can't make it and i didn't prompt her but she
18:32said i can't make it because my husband says i can't go because you know i have not you know once
18:38a month i'm not cooking his saturday lunch and you know i didn't say anything at that point i was new
18:45to bcwa malaysia and you know i i really didn't know what was the appropriate way to respond i now feel
18:53like you know that i should have just said can you just ask him to organize a delivery for himself and
18:58you come here and have the support that you require um but i didn't i wish i had
19:07but that's a real story and it's not a solitary story there are many women out there who don't
19:15get support from within their own family in order to traverse this journey which is comes back to what
19:22you said about having kind of community champions right someone to maybe look out for you look out
19:28for your family even give you a break or a day off or a day to do something and this is where we as
19:35neighbors might want to chip in for the women in our community as well um in this month of october and i
19:43know um bcwa has loads of campaigns and activities and um programs lined up but beyond the the kind of
19:54pink ribbons and the campaigns talk to me about how the visibility actually helps um i'm wondering whether
20:02it moves the needle on diagnosis and care and how we can make sure that in the month of pink october
20:09um we allow for it to achieve its full potential to to have concrete actions that will eventually
20:18help save lives i'm really happy to tell you that you know while in the pink of october it's absolute
20:24madness for us and we do about we do about 100 events over 31 days i'm i'm really happy to tell you
20:32that we do about an equal number or just slightly more throughout the rest of the year okay which is
20:37good which is good which is sustained throughout exactly you know so i'm really really happy when
20:42people write to us and say can you come and do this for us in february or march or or for no
20:47particular reason at all you know that just because we want to have clinical examinations done for our
20:53staff and and i think that's that's a good start and and that starts with the visibility that we get
20:58in october okay right but in terms of being able to move the needle i think we're dealing with adult
21:06women here nobody is going to go for a clinical breast examination or a mammogram if you force them
21:13the will to do this is ours yes has to come from within so all we can do is continue to be present
21:23continue to have our voices amplified and continue to tell women that it's okay because if it does
21:32turn out to be breast cancer the breast cancer welfare association malaysia is here for you
21:38we have resources that can help and if we don't have the resources we'll find a way of pointing you in
21:45the right direction the work that you do is incredibly important how are you funded are you sustainably
21:53funded do you have any uh challenges into it percent by the generosity of the public
22:00a hundred percent which means that every year it's an absolute scramble to be able to go out there and
22:08work on partnerships to work on donations to work on corporate uh funding you know i have absolutely
22:16no qualms about accepting donations from anybody who's watching this here today please do write into
22:22the breast cancer welfare association malaysia more than happy uh and you know because we're a non-profit
22:28you know everything that we raise does go back towards the community outreach work that we do everything
22:34goes back into running our operations to sustain the work that we do so while they're pulling out
22:39their checkbooks what else could you tell our audience today about what they should do this month
22:46what can they do for themselves and for the women in their lives so i think october is an ideal time
22:53if you've never ever had if you're a woman who's 40 years and above and you've never had a mammogram in
22:59your life this is the time many many uh healthcare outfits out there private hospitals in particular
23:06will do fantastic deals for um mammograms on ultrasound so go out there speak to your gynecologist
23:13or speak to your nearest hospital and see what sort of support that they can offer you the national
23:18cancer society of malaysia does fantastic deals as well during this month um they have also programs
23:24where if you earn below 10 000 ringgit a month household income it's free to have mammograms and
23:30that's with the uh lppkn as well um so you know there are lots and lots of resources available out there
23:36but the most single most important thing that you can do is i think if you see a breast cancer
23:39welfare association malaysia mobile clinic anywhere out in a mall or a university or any public space
23:46don't hurry past us don't say email loose again come up to us and have a conversation but more
23:53importantly have that clinical breast examination and get over the fear of what the process is like
24:01because once you start you're committing to a lifetime of breast health thank you so much for
24:07coming on the show and educating me educating us about breast health thank you smithra i really
24:13appreciate you thank you mel that's all the time we have for you on this episode of the future is
24:18female i'm melissa idris signing off for the evening don't forget to get your breast examination
24:25i'm signing off for the features female see you next time bye
Be the first to comment