May 19, 2024 • 42 mins
In this episode, Laura talks to Claire, support and patient engagement manager at Make 2nds Count, a UK-wide charity giving hope to people living with secondary breast cancer.
Claire speaks about the work that Make 2nds Count does for people with secondary breast cancer, including their Patient Trials Advocate service helping patients with the exploration of clinical trials, and their many support services around the country for people navigating life with their diagnosis. Claire also talks about her own diagnosis of secondary breast cancer, how it informs her work at the charity, and how she copes with the challenges of supporting cancer patients when she is one herself.
You can find out all about Make 2nds Count on their website.
We’re Breast Cancer Now, the research and support charity. However you’re experiencing breast cancer, we’re here. For information and support, visit our website https://www.breastcancernow.org or phone our free helpline on 0808 800 6000 (UK only).
You can also watch this episode on YouTube.
Key Topics:
0:23 Laura introduces Claire
1:11 Claire's diagnosis and experience of secondary breast cancer
2:04 What is secondary breast cancer?
5:24 Claire's treatment for secondary breast cancer
6:13 Explaining what a 'line' of treatment is
7:10 What the charity Make 2nds Count does
9:42 Claire's role at Make 2nds Count
10:15 Support services provided by Make 2nds Count
13:24 How Claire's mindset helped her cope with her diagnosis
16:52 The challenges working with secondary breast cancer patients while living with a secondary diagnosis
21:02 Patient Trial Advocate service from Make 2nds Count
25:43 Discussing clinical trials
30:54 Mental health support and clinical trials
32:38 Funding for secondary breast cancer research
34:57 Dealing with the complicated information about clinical trials
39:11 How to access Make 2nds Count's services
40:02 What needs to change in breast cancer?
Claire speaks about the work that Make 2nds Count does for people with secondary breast cancer, including their Patient Trials Advocate service helping patients with the exploration of clinical trials, and their many support services around the country for people navigating life with their diagnosis. Claire also talks about her own diagnosis of secondary breast cancer, how it informs her work at the charity, and how she copes with the challenges of supporting cancer patients when she is one herself.
You can find out all about Make 2nds Count on their website.
We’re Breast Cancer Now, the research and support charity. However you’re experiencing breast cancer, we’re here. For information and support, visit our website https://www.breastcancernow.org or phone our free helpline on 0808 800 6000 (UK only).
You can also watch this episode on YouTube.
Key Topics:
0:23 Laura introduces Claire
1:11 Claire's diagnosis and experience of secondary breast cancer
2:04 What is secondary breast cancer?
5:24 Claire's treatment for secondary breast cancer
6:13 Explaining what a 'line' of treatment is
7:10 What the charity Make 2nds Count does
9:42 Claire's role at Make 2nds Count
10:15 Support services provided by Make 2nds Count
13:24 How Claire's mindset helped her cope with her diagnosis
16:52 The challenges working with secondary breast cancer patients while living with a secondary diagnosis
21:02 Patient Trial Advocate service from Make 2nds Count
25:43 Discussing clinical trials
30:54 Mental health support and clinical trials
32:38 Funding for secondary breast cancer research
34:57 Dealing with the complicated information about clinical trials
39:11 How to access Make 2nds Count's services
40:02 What needs to change in breast cancer?
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
This podcast contains the personal stories,opinions and experiences of its speakers, rather
(00:05):
than those of Breast Cancer Now. Welcome to theBreast Cancer Now podcast, providing support and
information to anyone affected by breast cancer.I'm Laura Price and I'm the host of the Breast
Cancer Now podcast. I'm a food writer and authorand I live with secondary breast cancer. This
episode we're going to be talking to ClaireO'Donnell from Make, 2nds Count, a UK-based
(00:29):
charity that gives hope to people living withsecondary breast cancer. This is something
Claire has direct experience of, as she, like me,is living with secondary breast cancer. We're
talking to Claire today because Breast Cancer Nowhas actually teamed up with Make, 2nds Count on
their clinical trials information service,which is part of their mission to facilitate
access to patient trials. Claire will be sharingvarious aspects of this really important area of
(00:54):
breast cancer treatment. We'll also be talkingabout the work that Make, 2nds Count is doing to
fund breast cancer research, to support patientsand to raise awareness and understanding of
secondary breast cancer. Claire, welcome to theBreast Cancer Now podcast. Thank you for having
me. Could you tell us, first of all, about yourdiagnosis and your experience of secondary
(01:16):
breast cancer, please? Of course. I was diagnosedwith primary breast cancer in October 2015 and so
went through treatment as you do, so hadmastectomy, radiotherapy, and then had a scan at
the end of that, hoping to be given the all-clear,but there was discovered, there was some lesions
(01:42):
showing on the scan and it was confirmed in March of2016 that I had bone so I have mettes to my sternum,
my ribs and my lower back and so yeah that was 2016,seems a long time ago but yeah, so I've been living
with secondary breast cancer since that point.And it's not the first time we've talked about
(02:06):
secondary breast cancer on this podcast but foranyone who is perhaps coming to it for the first
time, could you just tell us what secondary breastcancer means? Of course, secondary breast cancer
is when the initial tumor has spread from thebreast and traveled to another part of the body,
another organ, therefore becoming incurable, soit's treatable but it becomes an incurable at that
(02:30):
stage, so it's when the initial tumor has spread toanother part of the body. And I know that's, this
whole incurable but treatable is quite hard for alot of people to get their heads around,
understandably, because it's quite confusing.Is there anything you can elaborate on in terms of
that to help us to understand? I mean, I guesslooking at it from my own perspective and my own
(02:53):
experience, it's basically getting your headaround the fact that there isn't almost, you have
to take the cure part of it away from, you know, yourprimary diagnosis should always aiming for that
all clear, you know, and moving on with your life Iguess but the incurable aspect becomes, I guess,
(03:13):
your mindset changes and you have to learn to livewith cancer, you have to learn to have that be part
of your life every day based on your treatments oryour side effects or symptoms. So I guess it
becomes just a whole new way of having to live yourlife. You can treat it and you can live well, I
(03:34):
certainly have experience of that at the momentbut that doesn't mean it's not a difficult thing to
live with. I struggle more mentally with the dailystruggles of living with secondary breast cancer
and, you know, while my cancer is stable and asleepas they say, I do have a million side effects that
(03:56):
comes with that so really I'm battling that morethan anything at the moment. So yeah, I think it's
just for me it's just having to adapt to a new way ofthinking and living and trying to remain as upbeat
as possible while doing that. Yeah, that's areally good way of explaining it so essentially
you will never not have cancer, it doesn'tnecessarily mean that you'll be suffering from
(04:20):
the actual effect of cancer but exactly there's alot of days where the cancer actually doesn't
affect me, it might be more a side effect or a pain ora niggle but I'm still living with cancer and it's
not going to go anywhere so it's about keeping it atbay, I guess, it's about keeping it asleep and
(04:43):
being able to maintain that level of treatment, Iguess. Could we all know at some point things will
change so you aim to have as long as possible onwhatever treatment you happen to be on but for me it
was a real mind flip and it took me a long time to getmy head around it and I'm in a much better place now
(05:05):
but the first couple of years of my diagnosis wasvery up and down and I'm happy now that I live quite a
happy life and you know I live well with it but itwasn't always like that, I think it takes time and I
think it takes experience of what secondarybreast cancer actually is. Absolutely, so tell us
so what treatment are you on? Have you been on thesame treatment for the whole time because it's
(05:29):
been quite a few years now? Yeah, it's been quite afew years, I'm very lucky and that I've been stable
now for seven years and I'm still on first linetreatment so I feel incredibly lucky and my wonder
drug as I like to call it is letrasol and that's allI'm on, I do have a bone strengthener that I take
(05:50):
daily and I used to take azolodex injection to shutdown my ovaries but I've since had an opherectomy
procedure to remove my ovaries to take that part ofthat treatment away so yeah, letrasol and a bone
strengthener is keeping me going at the moment andI'm doing really really well on it so I can't
(06:10):
complain. That's fantastic news and youmentioned first line treatment can you just
explain that term as well because all of thesethings were new to me like just a year ago so I know a
lot of people won't be familiar. Absolutely, itwas new to me at the time as well so I basically say
first line treatment because it's the firsttreatment I've had for secondary breast cancer
and it has remained so I haven't had a progression,I haven't had a change in my circumstances so if I
(06:36):
did get to that point and they would change mytreatment that would then become my second line so
it's looked at as each drug that you have whether itbe your first or second or your third is how so I'm
like I say I'm incredibly lucky to still be on firstline treatment eight years on I know that's not the
case for everyone so yeah I feel very lucky indeed.Yeah we've got to be incredibly grateful and
(07:02):
thankful to the people who research and make thesedrugs. Absolutely, without that we're not going
to get anywhere are we? Yeah so tell us about makeseconds count why was the charity set up and what is
its mission? So the charity was founded by LisaFleming who was a secondary breast cancer patient
and at the time Lisa felt there wasn't reallyanything out there for the secondary breast
(07:26):
cancer community she was struggling to findsupport and help and she wanted to set up a charity
that would help with that so make seconds count as Ithink we're coming up to our fifth birthday soon
which is incredible we've done so much since thenwhat we do is we focus on three pillars which is
research support and education and our aim is to beI guess a place that you can come to for any queries
(07:56):
that you may have about secondary breast cancerwhether it's wanting to understand it as a newly
diagnosed person or if you're further down theline like myself and maybe things are changing and
you want you want the best advice or the right placeto go that's what makes seconds count aims to do and
one of the big things we do is fund research intosecondary breast cancer so and the things that we
(08:17):
tend to focus on are what you would I guess what theysay is near time so it's things that's not
necessarily going to be 10 or 15 years down the linebut it might be something that would support the
community in the here and now so whether that be awell-being thing or you know a drug or it might look
into sleep or it's funding those types of researchthat will help you live well with secondary breast
(08:43):
cancer which is a huge part of what makes secondscount is about where they are to provide hope for
not only the secondary breast cancer patient buttheir friends and family and so the three pillars
that we work on aim to do that via educating themabout secondary breast cancer not only the
patient but maybe the general public the widerpublic who maybe don't understand so I guess
(09:06):
there's different sides different tales that youcan tell different stories you can tell and
support which is the side that I'm mainly focusedon with make seconds count is providing support
daily in the here and now whether that be throughonline services or in person groups and
activities retreats well-being we do yoga andmindfulness and breath work so yeah we try and
(09:32):
cover as many aspects of life with secondarybreast cancer as possible and the hope that it's
making it easier for the community to live withsecondary breast cancer and what does your role
involve well I am support and patient engagementmanager I was the support coordinator for the
charity and I actually started out as a volunteerand I was a patient champion when I found make
(09:56):
seconds count I myself was looking for communityand help and found them so my role has been to
establish the support services because we didn'treally have anything then COVID hit and we found
that a lot of our community were incrediblyisolated and so that's where our first support
(10:18):
service was born which is tea and chat which wasbasically an online program where you could join
us for an hour and chat it could be about cancer itcould be about life anything and everything and
that's still going strong to this day but we'veintroduced now in person setups for all around the
UK and so my current role is to try and establishthose that are here and find new places to set up
(10:44):
these groups and a big part of my job is setting upthe retreats which is a couple of days away for
members of the community to just make friends tomeet other people in the same situation in a safe
space and provide them with some lovely food somelovely you know accommodation some mindfulness
(11:06):
some yoga just really give them a place to go andexperience um what it's like to meet other people
in a similar situation and we found that thatretreat service I'm not sure there's many other
people offering that so make seconds count I'vetried really hard to grow that um the plan next year
(11:27):
I think is actually to have six so this year we didfour so we're always aiming to you know improve
what we've currently offer and actually allowmore people to to find and take part in these
services so yeah how can patients access that andthey can access it via our website we basically and
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normally around January time we'll announce whatall the activities are going to be and where
they're going to be and you can sign up for all ofthem if you wish or if there's only one that you're
interested in you can sign up and then what we do iswe do it's a random draw um so it's open to everyone
but we we do firmly believe in it being fully fundedso that you know you're not held back from so we will
(12:14):
provide travel expenses and we'll pay fully forthe retreat so they're not out of pocket hopefully
so um so yeah that's fantastic yeah thank you we'revery very proud of it yeah everything will be on the
support section of the website um at the start ofthe year so um what I would suggest is if people are
interested is to maybe sign up to our newsletter umwhich you can do so from the homepage of our website
(12:38):
because that will ultimately be what lets themknow that you know the retreats are live and ready
to sign up for so they're always very muchoversubscribed um so we try very hard to bring as
many people as possible so it will always besomeone who's never experienced a retreat before
that'll take priority you can apply again if youwish but it would always be a last minute place if
(13:02):
you know someone pulls out for whatever reason soit's not like you can't experience it twice it's
just we always offer it to someone who's nevernever been on one first so each year we're always
trying to add more to it so yeah takes a lot of timethough and a lot of work well we'll put the links in
the show next so that any listeners can have a lookat that you mentioned that your mindset from the
(13:27):
first two years of your secondary breast cancerdiagnosis to now sort of eight years on was really
really different was there an active thing thatyou did um and how did it change I I've thought about
this a lot actually I think just recently becauseum a few members of the community have asked me a bit
(13:51):
about it was more just I think there needs to be thatlevel of stability that comes from your scans
because I think you're not really going to trustthat mindset without that um so I think in the first
couple of years I was very much like a rabbit caughtin headlights and I'd obviously aimed for being
all clear and moving on and that sort of ripped awayfrom me almost straight away and you have to get
(14:15):
used to this whole other way of thinking and I'dlost my mum to secondary breast cancer as well back
in the 90s so I obviously had that fear thatinstantly became oh this is my life this is what's
going to happen to me and I couldn't shift that umand I think what happened was a finding makes
seconds count um getting really involved in theirvolunteer program um spending a lot of time with
(14:41):
other members of the community and I think justlearning to share and not be afraid if I was there
were times when I was really really very veryscared that you know I wasn't going to see my niece
and nephew grow up they were very young at the timeand I think there's just a lot of things that come
into your brain that you feel that you've got nocontrol over um and over time what I've managed to
(15:08):
do is take a bit of that control back but in allhonesty I'm not sure where I would be had I not had
stable scans to back that up I think that's a reallyimportant part of it is because in order to trust
your treatment and trust what's happening I thinkyou need to scan to back it up and only then do you
maybe start to let go a little bit and not feel sotense about absolutely everything and I've
(15:32):
obviously had the luxury of five six seven years ofnot many changes not many ups and downs whereas
other people I know are constantly having tochange how they think so I guess it's come easier to
me um but then working within makes seconds countand with the community I've seen what other people
(15:56):
go through as well so I guess it's a bit of both butyeah I think it's just trusting that you know you
are stable your treatment's working yeah and thatjust allowed me a little bit of freedom I guess to to
think about the future again and obviously nowfurther down the line I've saw my niece and nephew
grow up which is what I didn't think would happenand I've also realized that the treatment that was
(16:21):
available to my mum in the 90s it's night and daywhat's available now and so there's obviously
that as well and knowing that there's a lot of othertreatments out there as well helps I think um
certainly for me I know there's a a list of thingsthat I can move on to so it's not necessarily going
to be the end of the world if I do have a progressionit will take so I think it's lots of things that get
(16:47):
you there but those I would say would be the mainthings for me yeah absolutely um you obviously
came to make seconds count in the first place whenyou're in this really vulnerable position having
been diagnosed and now you're a little bit betteryou're doing well you're stable but you're
spending a lot of time working with and living withsecondary breast cancer do you need to escape that
(17:12):
sometimes and if so what are your copingstrategies? Sometimes yes I will be the first to
admit that sometimes I'm not very good at doingthat either because I get very involved um I feel um
a lot of you know responsibility to the communitythat we've built and that we look after so and it has
(17:33):
for a long time been just me doing that side of it Iguess for the charity obviously with support from
other team members but it's really just been methat's been kind of interacting with them so there
are moments there are ladies that I've lost in thecommunity that I've got very close to and I've had
to step back and I've had to step away and take amoment a to to grieve for them I guess but also to
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make sure that I'm still in a good place because Ican't support them if I'm not in a good place so um
I'm very lucky that make seconds count areincredibly we've got a really good team who look
after each other um and they're also aware that I'ma patient so that they're they're very good at
making sure that I'm maybe not doing too much or ifthey need to tell me to step back a bit because like I
(18:23):
say I'm not always the best at doing that because Ilike distraction I like things to keep my mind
occupied and I find that I've got a real passion forthe community and for make seconds count so
sometimes it does overtake but yeah you alwayshave to make sure that you're all right first and
foremost and I do struggle when I lose ladies fromthe community um it's hard it happens a lot sadly um
(18:53):
but I think you just have to try and ground yourselfagain and know that everybody's story's
different as well and that just because that'shappened to them that's not what's happening to me
and I guess you have to remember that it's very easyto get lost in the you know the sadness and the the
overwhelming responsibility you have to thecommunity that you're also trying to pick up at the
(19:18):
same time because they'll have also lost someonethat they've got close to um so yeah I think it's a
real balancing act sometimes I'm all right atother times I'm not I'm quite happy to admit that
I'm not always the best at it but I do try really hardto look after myself as well it's a fine balance
because someone else who doesn't have secondarybreast cancer could do your job yes but they
(19:41):
wouldn't do it with the same level ofunderstanding and they wouldn't have that same
connection I think exactly that I think there's alevel of understanding about what it's like to
live with it there's an empathy there for I may notknow what your experience is necessarily with
your drugs but I understand what it's like to livewith it and to to have to constantly be on that
(20:01):
roller coaster as such so I think in that regardit's it's beneficial to have someone that
understands and I think the community trusts thatand they trust the charity for those reasons
because they've got people who understand youknow working within the charity and I think that
goes a long way. I'm Gareth the editor of Vitamagazine Vita is breast cancer nurse magazine for
(20:27):
anyone affected by breast cancer it's full ofinspiring real-life stories expert tips on
coping with the effects of breast cancer andarticles on health and well-being in our new
spring issue you can read about a mother anddaughter who were both diagnosed with breast
cancer 12 years apart find out the latest in breastcancer research get tips on coping with fatigue
(20:50):
read about the benefits of getting outdoors andmuch more subscribe to Vita now at
breastcancernow.org forward slash Vita can youtell us a bit about the partnership between breast
cancer now and make seconds count and how the twocharities are working together yeah of course um
our patient trial advocate service started in2021 um after some feedback we'd had from a survey
(21:17):
that would put out to community about things thatthey felt were missing or that they needed and what
came from that was There really isn't a lot ofaccess to clinical trials and there isn't a lot out
there for those living with secondary breastcancer who are maybe at a point where they want to
(21:38):
know what else is available to them or somethingthat will give them hope. So the PTA service
started, launched in 2021, and it started off as apilot in Scotland, in a very small area of Scotland
that we used to put. It was very, very successfulvery quickly. There was a lot of referrals and it
(21:59):
became very clear very quickly that we weregetting a lot of referrals from people out with
that pilot area because there isn't really theservice anywhere else that's unique to Make, 2nds
Count. And it was a way for us with the educationpillar as well as the other stuff is to educate
people about clinical trials and maybe todispense some of the myths that there is around
(22:24):
clinical trials. And Breast Cancer Now have beenincredibly supportive of the Patient, Trials
Advocate Service and that they've been very muchsignposting our service to their nurses and
making everyone aware of the service andreferring patients to it because they're also
very aware of how important clinical trials are tothe Second Breast Cancer Community. And one
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amazing thing that they've done is that theygranted us a £20,000 grant to go towards the
Patient, Trials Advocate Service to help uscontinue it, to hopefully put that towards maybe
introducing more nurses. We currently have threewho work all over the UK. So this money will help us
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continue the service, hopefully expand it andcontinue to offer people an insight into what
clinical trials are and our nurses effectivelysit you down and talk to you and talk through your
questions obviously. If you've got any questionsthey'll answer those. But even if it's just simply
(23:33):
a phone call that you want to understand a bit moreabout clinical trials, there's no obligation to
take it any further. But if you want to, the point isthat they'll go away and do all the research for
you, which I know I would find incrediblyconfusing if I had to try and understand those
databases, I wouldn't be able to do it. So thenurses are very good at that. They'll go away and
(23:56):
they'll research it all and then they'll send youall your information back and they'll also notify
your oncologist that with their permissionobviously that you're interested in clinical
trials and want to know more about it. So I guess alot of it's about empowering the patient, but it's
also I guess making clinical trials themselvesmore accessible. Because I was very confused
(24:21):
about clinical trials and didn't really know a lotabout them and I've found out more through just a
service loan and working with the fabulous nursesthat we've got. So yeah breast cancer now, I think
we're really keen to work with otherorganisations and charities who are passionate
about the secondary breast cancer community andservices like this which are going to help. And
(24:42):
breast cancer now have been incrediblysupportive. Our nurses have gone and spoken to
breast cancer now groups of patients as well toexplain the process and the service. So it
obviously gives us access to more patients who aremaybe not directly members of the M2C community
but you know maybe they don't know who makesseconds count at this point but breast cancer now
(25:06):
are allowing them to come to our service I guesswhich is fantastic. And is that anywhere in the UK?
It is and I think for some people there's maybe beena bit of confusion and that they maybe think that
we're a Scottish charity only, but we support UKwide and a lot of our services are UK wide. So the PTA
is accessible for anyone in the UK, our supportservices are accessible for anyone in the UK. In
(25:30):
fact we have quite a lot of groups that are now outwith the UK so I think it's really just quite
important for us to let the community know that youknow it's not Scotland only. Where yeah UK wide for
sure. Fantastic thank you. So what is a clinicaltrial if you could sort of because I think we all
have an idea in our heads of what it means but I don'treally know much about what it is, what it does. And
(25:54):
I would have to say I kind of agree I'm not an expertand by any means I know a clinical trial is there to
hopefully establish another line of treatmentand it's about I guess you need patients to be part
of these things to see if this drug is going to work.But like I say I'm not an expert on clinical trials
(26:17):
at all that's why we've got our fabulous nurses whodo that. So what I would say is if you do want any
information I would make an appointment, I wouldbook and speak to the nurses and there's no waiting
list you can simply book an appointment onlinethrough the MakeSeconds Count website and it can
be a date that you choose so it can be convenient foryou and the nurse will phone you and talk to you and
(26:40):
explain but I guess in the simplest terms it'sabout without the clinical trials we're not going
to have access to new drugs so a clinical trial isall about will it find you another line of
treatment and as a secondary breast cancercommunity that's exactly what we need and want is
you know access to more treatment lines and I guessthey can only come from a clinical trial but as I say
(27:06):
I'm not an expert myself I've tried really hard tolearn as much as I can but our nurses are far better
at it at all that than I am. So is a clinical trialonly for someone who's exhausted all of their
lines of treatment or is it something that youcould ask for at the beginning of your diagnosis? I
(27:27):
think that's one of the myths that we as a charityhave tried to dispel because actually you don't
have to wait until and in fact it's probably more inyour favour to do when you've not exhausted all
your lines of treatment because at that point Iguess you're going to be quite unwell and so my
advice would be if you're interested in a clinicaltrial ask about it as early as possible even if it's
(27:48):
just for the nurses to research what's currentlyavailable to you it will give you that knowledge
and you can then make your oncologist aware youknow that you're interested in clinical trials
but I think that's one of the big myths that we triedto dispel at the beginning of the PTA was that it's
not purely for when you've exhausted all optionsyou can look and see what's available to you at any
(28:11):
stage. I haven't done it personally because I'mstable on first line treatment but I always had it
in my head that should I have a progression thatwould be something that I would be interested in
doing and I would want to find out more at that stagebut yeah definitely I wouldn't leave it until the
you know when you've exhausted all your lines oftreatment I think it's more advantageous for you
(28:35):
to do that a lot earlier on in treatment. So beforethis service came about how would a patient access
a clinical trial is it something they would asktheir oncologist about or? I would imagine that
would be the way it would have to have been yet I knowthere's there's databases which list all the
current clinical trials that are available in theUK I think there's about six of them but having had a
(29:00):
look at one of them I was I was incredibly confusedby everything I didn't really understand the
language I didn't really understand any of it so Ican imagine that before this service that would be
what it would be like for you if you were trying tonavigate this yourself so I think the beauty of the
PTA services that they do all that for you and theycan understand all that information and then
(29:21):
they'll report that back to you and feed that backto you in a way that you understand. One of the other
things that the charity did off the back of that waswe've taken all that information from all those
databases and we've listed it as a clinical trialregistry on our website and it lists it all very
clearly and it's updated every month so at anypoint you can really see what's available and I
(29:44):
think it's laid out in such a way that the languageis easier to understand which I think is also
really important because we don't necessarilyknow all the medical jargon and I think this is
another way to just make clinical trials moreaccessible. And are they accessible to all
patients, private or NHS? Yes I believe so yes Ithink there's obviously differences in how you
(30:09):
would maybe access them depending on whetheryou're an NHS patient or a private patient but as
far as I am aware clinical trials are available toanyone and everyone who would like to access them.
Brilliant. You're very much making me want to goand learn more, go and call one of these nurses. I
know you're not an expert on clinical trials but Iknow that there are strict eligibility
(30:33):
requirements for getting on a trial and then whenyou're on a trial I believe you are regularly
tested and there is a chance that you may be removedfrom the trial if you're not hitting certain
health targets. I don't know if targets is theright word. When I realized that that was the case
(30:53):
it struck me that it would be something that wouldbe mentally terrifying and exhausting and
confusing. Is there mental health support forpeople who are on clinical trials do you know? If
you're accessing it via makes seconds count wehave other services that would hopefully be of use
as in support groups that we have online or you knowthe team chat service that we do which runs monthly
(31:18):
so I would hope there's always someone that youcould speak to but yeah I know that the criteria is
often very very strict and in some cases you may noteven be eligible for that trial because you don't
meet those criteria which I guess must be one of themost difficult things about clinical trials. If
you're you know if you're I guess at a point whereyou feel that's what you need but then if you can't
(31:42):
access it almost it must be so soul-destroying butyeah I would imagine that must be something that is
part and parcel of what the clinical trial is. Iwould hope it would offer more than just the
clinical trial itself. Yeah I don't know I suspectmaybe also it's it's organizations like yours and
like breast cancer now. Well that's at breastcancer now makes seconds count I guess we're there
(32:04):
as backup I would like to think that you know youknow that you have these services that you can
access so if you are struggling mentally withmaybe what the criteria is or whether you're
struggling with something about the clinicaltrial I would like to think with our community
there's a lot of questions that are asked there's alot of shared experience within our community
groups so if you're sharing that experienceyou're picking up those things and I would hope
(32:29):
that that would be helpful and I imagine breastcancer now groups would be exactly the same that if
you're sharing experiences it can only help. Yeahabsolutely. What's the situation like in terms of
funding and research for secondary breast cancerpatients? I think it's difficult I think it's
(32:50):
always hard to a lot of what we do in our fundraisingis to fund research primarily that's the biggest
part of what makes seconds count does and oursupport services have certainly grown but the
biggest part of what we do in terms of fundraisingis to fundraise for research because there isn't
that much out there and I guess it's about doing asmuch as we can to fund projects that are going to be
(33:17):
of use and of benefit. I think there's othercharities out there that funds I would say maybe
long term research that may take 10 15 years to cometo fruition I think for us we try really hard to find
things that are maybe going to be of benefit moreyou know in your time because a lot of that's really
important to those who live with secondary breastcancer and you are on a timeline I don't like to
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think of it like that but for a lot of people it'squite urgent you know and you do need things to come
around a lot quicker and it's not the quickestthing you know to to have new drugs come around so
yeah certainly fund raising into research is themost important part and where does the
fundraising come from so for make seconds count itcomes in a number of ways and we're very lucky in
(34:05):
that we have a very active community who fundraisefor us by doing you know their own fundraising and
we get funding through trusts and foundations viaapplying for things like that so and obviously
there's a lot of corporate fundraising that youcan access so I think it's just about assessing as
much as you can but we as a charity are incrediblylucky that we have a very active community who
(34:31):
fundraise daily for us and who get up to all sorts ofantics on our behalf and a lot of them do like to say I
want this to go towards research and that'ssomething that the charity can do if you want your
fundraising wanting to go say you don't want it togo towards anything other than research that's
(34:52):
exactly what would happen so yeah that's cool Idon't know if everyone does that as someone with
secondary breast cancer myself I know there's ahuge amount of self advocacy involved in
everything from diagnosis to treatment andbecoming a part of a clinical trial requires a real
level of productivity that many patients justwon't have the time or energy for what kind of
(35:15):
support is there out there for secondary breastcancer patients who don't necessarily have the
time or energy to you know do all the work I meanagain I think that's where the patient trial
advocate service comes in is that they can take onthat burden I guess if that's the right word to use
but they can be doing all the heavy lifting and thehard work and they can find what's out there for you
(35:39):
and then they can take that information to theironcologist because I think it's it's not wrong to
say that oncologists don't often have a lot of timeeither so the PTA service is helping them as well as
the patient so I think you know if I understand thatyou know you are going to be tired and it may be that
(36:01):
you don't have it in you to do that but that's where Ithink you should utilize these services that are
now created for that reason and the PTA nurseswhat's great about it is that it's not just once if
you want to go back and speak to them again you justmake another appointment and you can follow up and
we've had people that come back two three timesjust to update you know their situation or maybe
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want to check if there's anything new so I thinkwhat's good about that service itself is that it's
taking on all that hard work for you but you'restill benefiting as a patient and obviously our
hope is that you would access a trial and we don'talways find out that information but that
ultimately is what the service is aiming to do is toget people on to clinical trials so I think that's
(36:49):
where I would just say use those services that'swhat they're there for you can still advocate for
yourself but you can have someone else do what maybe the hard stuff and you can still be very
proactive in other ways and if there's someonelistening to this podcast here is perhaps a spouse
or a family member of someone with breast cancercan they get in touch with my seconds count and you
(37:10):
know do all that liaising on their behalf. Yes itdoesn't have to be the patient themselves you can
have your friend or your family or your husband oryour daughter we've actually had that a number of
times where it's been someone else and you don'tneed to know a lot of background information
either and there's very basic questions thatwe'll ask and even if you don't know the answers
it's not a deal breaker that's where the chat withthe nurse comes in so I guess as long as that person
(37:35):
is aware that someone's making the referral andyou know that there will be a conversation at some
point but yeah anyone can make the referral andthat's another thing that I think is really really
useful because it may be that you're not maybe wellenough to do that and so maybe your spouse will do
that for you but yeah the nurses are happy to speakto anyone and anyone can make that referral for
(38:00):
you. Brilliant well I'm sold I'm definitely gonnamake the call myself. Absolutely I think for no
other reason and it allows you just to learn a bitmore and I don't I always think knowledge is power
and the longer I've been on this secondary breastcancer I hate the word journey but the longer the
longer I've been on this journey I guess I'velearned that the more you know the easier things
(38:28):
can be for you and I've certainly learned a lotthrough the nurses and through the service itself
but also from the feedback we've had we've had 100%feedback on the service positive feedback and
that no matter whether it goes as far asidentifying trials for you but it may even be as
simple as explaining what a trial is and I'm surethe nurses can do that far better than I have today
(38:54):
but yeah absolutely I would recommend at leastlike I say there's no obligation to take it any
further but if you just even like to find out moreyou know about the service or about what's open to
you and I would definitely go ahead and make anappointment with the nurses. Where can people
find out more about Mexicans count? So our websitewhich is www.mexicanscount .co.uk you'll find
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all of our services there you'll find everythingon our research support and education pillars and
within the support section is the patient trialadvocate section so you can make a referral via
that booking form online but even if you just wantto find out a bit more about what secondary breast
cancer is there's a whole big section on that abouttalking about whether it's in your bones or in your
(39:44):
liver or brain or you know it tries the website'sreally useful for just trying to gather as much
information as possible so yeah that's where Iwould always point people in the directional
first. And we'll put the links in the show notes butthe spelling of seconds is 2nds isn't it? Yes it is.
I would like to end by asking you the one question weask everyone on this podcast which is what is the
(40:08):
one thing you would like to see change in the comingyears in terms of secondary breast cancer
diagnosis treatment research everythingsurrounding that? I mean for me I guess and this is
probably coming from a personal experience isthat I would love for the doctors or the nurses or
(40:28):
whoever to maybe just respond when you come with aquery necessarily like I had a lot of time where I
had to fight to say that you know I had thiscondition and they were telling me it was mastitis
for six weeks and it wasn't mastitis you know I hadno kids I wasn't breastfeeding but almost I felt I
(40:49):
had to fight and I feel like if I hadn't had to havewaited those eight weeks my own prognosis may have
been different and I think for secondary breastcancer specifically there's a lot of ladies that
go back to their GPs or go back to their team and sayI've got a bad back or you know I've got a pain and
it's often they're not joining the dots andthey're not going with this person had breast
(41:11):
cancer why don't we just investigate this and ittakes a long long time but by that point it may be too
late and you may be you know further along in yoursecondary breast cancer journey as you would need
to be so for me I just I would like the patient to bebelieved a bit more when you know or at least
investigated whether that be with a scan orchecking your notes and seeing that actually
(41:35):
they're not just coming because they've got a soreback they're coming because they're concerned
about something else so for me personally I wouldlike that to be a bit more accessible and obviously
lots more research lots more treatment optionsyeah that would be wonderful absolutely well I
agree and thank you so much for all the work you'redoing with Make Seconds Count it's so important to
(41:58):
this community thank you and Claire thank you forcoming on the podcast thank you for having me and
thanks for letting me talk a little bit about whatMake Seconds Count does and about our patient
trial advocate service we're incredibly proud ofit so thank you for letting us share thank you if you
enjoyed this episode of the breast cancer nowpodcast make sure to subscribe on apple podcasts
(42:18):
spotify or wherever you get your podcasts pleasealso leave us a rating or review on apple podcasts
and perhaps recommend it to someone you thinkwould find it helpful the more people we can reach
the more we can get breast cancer now's vitalresources to those who need them you can find
support and information on our websitebreastcancernow.org and you can follow breast
(42:40):
cancer now on social media at breastcancernow allthe links mentioned in this episode are listed in 411 00:42:46,160 --> the show notes in your podcast app thank you for listening to the breast cancer now podcast
This podcast contains the personal stories,opinions and experiences of its speakers, rather
(00:05):
than those of Breast Cancer Now. Welcome to theBreast Cancer Now podcast, providing support and
information to anyone affected by breast cancer.I'm Laura Price and I'm the host of the Breast
Cancer Now podcast. I'm a food writer and authorand I live with secondary breast cancer. This
episode we're going to be talking to ClaireO'Donnell from Make, 2nds Count, a UK-based
(00:29):
charity that gives hope to people living withsecondary breast cancer. This is something
Claire has direct experience of, as she, like me,is living with secondary breast cancer. We're
talking to Claire today because Breast Cancer Nowhas actually teamed up with Make, 2nds Count on
their clinical trials information service,which is part of their mission to facilitate
access to patient trials. Claire will be sharingvarious aspects of this really important area of
(00:54):
breast cancer treatment. We'll also be talkingabout the work that Make, 2nds Count is doing to
fund breast cancer research, to support patientsand to raise awareness and understanding of
secondary breast cancer. Claire, welcome to theBreast Cancer Now podcast. Thank you for having
me. Could you tell us, first of all, about yourdiagnosis and your experience of secondary
(01:16):
breast cancer, please? Of course. I was diagnosedwith primary breast cancer in October 2015 and so
went through treatment as you do, so hadmastectomy, radiotherapy, and then had a scan at
the end of that, hoping to be given the all-clear,but there was discovered, there was some lesions
(01:42):
showing on the scan and it was confirmed in March of2016 that I had bone so I have mettes to my sternum,
my ribs and my lower back and so yeah that was 2016,seems a long time ago but yeah, so I've been living
with secondary breast cancer since that point.And it's not the first time we've talked about
(02:06):
secondary breast cancer on this podcast but foranyone who is perhaps coming to it for the first
time, could you just tell us what secondary breastcancer means? Of course, secondary breast cancer
is when the initial tumor has spread from thebreast and traveled to another part of the body,
another organ, therefore becoming incurable, soit's treatable but it becomes an incurable at that
(02:30):
stage, so it's when the initial tumor has spread toanother part of the body. And I know that's, this
whole incurable but treatable is quite hard for alot of people to get their heads around,
understandably, because it's quite confusing.Is there anything you can elaborate on in terms of
that to help us to understand? I mean, I guesslooking at it from my own perspective and my own
(02:53):
experience, it's basically getting your headaround the fact that there isn't almost, you have
to take the cure part of it away from, you know, yourprimary diagnosis should always aiming for that
all clear, you know, and moving on with your life Iguess but the incurable aspect becomes, I guess,
(03:13):
your mindset changes and you have to learn to livewith cancer, you have to learn to have that be part
of your life every day based on your treatments oryour side effects or symptoms. So I guess it
becomes just a whole new way of having to live yourlife. You can treat it and you can live well, I
(03:34):
certainly have experience of that at the momentbut that doesn't mean it's not a difficult thing to
live with. I struggle more mentally with the dailystruggles of living with secondary breast cancer
and, you know, while my cancer is stable and asleepas they say, I do have a million side effects that
(03:56):
comes with that so really I'm battling that morethan anything at the moment. So yeah, I think it's
just for me it's just having to adapt to a new way ofthinking and living and trying to remain as upbeat
as possible while doing that. Yeah, that's areally good way of explaining it so essentially
you will never not have cancer, it doesn'tnecessarily mean that you'll be suffering from
(04:20):
the actual effect of cancer but exactly there's alot of days where the cancer actually doesn't
affect me, it might be more a side effect or a pain ora niggle but I'm still living with cancer and it's
not going to go anywhere so it's about keeping it atbay, I guess, it's about keeping it asleep and
(04:43):
being able to maintain that level of treatment, Iguess. Could we all know at some point things will
change so you aim to have as long as possible onwhatever treatment you happen to be on but for me it
was a real mind flip and it took me a long time to getmy head around it and I'm in a much better place now
(05:05):
but the first couple of years of my diagnosis wasvery up and down and I'm happy now that I live quite a
happy life and you know I live well with it but itwasn't always like that, I think it takes time and I
think it takes experience of what secondarybreast cancer actually is. Absolutely, so tell us
so what treatment are you on? Have you been on thesame treatment for the whole time because it's
(05:29):
been quite a few years now? Yeah, it's been quite afew years, I'm very lucky and that I've been stable
now for seven years and I'm still on first linetreatment so I feel incredibly lucky and my wonder
drug as I like to call it is letrasol and that's allI'm on, I do have a bone strengthener that I take
(05:50):
daily and I used to take azolodex injection to shutdown my ovaries but I've since had an opherectomy
procedure to remove my ovaries to take that part ofthat treatment away so yeah, letrasol and a bone
strengthener is keeping me going at the moment andI'm doing really really well on it so I can't
(06:10):
complain. That's fantastic news and youmentioned first line treatment can you just
explain that term as well because all of thesethings were new to me like just a year ago so I know a
lot of people won't be familiar. Absolutely, itwas new to me at the time as well so I basically say
first line treatment because it's the firsttreatment I've had for secondary breast cancer
and it has remained so I haven't had a progression,I haven't had a change in my circumstances so if I
(06:36):
did get to that point and they would change mytreatment that would then become my second line so
it's looked at as each drug that you have whether itbe your first or second or your third is how so I'm
like I say I'm incredibly lucky to still be on firstline treatment eight years on I know that's not the
case for everyone so yeah I feel very lucky indeed.Yeah we've got to be incredibly grateful and
(07:02):
thankful to the people who research and make thesedrugs. Absolutely, without that we're not going
to get anywhere are we? Yeah so tell us about makeseconds count why was the charity set up and what is
its mission? So the charity was founded by LisaFleming who was a secondary breast cancer patient
and at the time Lisa felt there wasn't reallyanything out there for the secondary breast
(07:26):
cancer community she was struggling to findsupport and help and she wanted to set up a charity
that would help with that so make seconds count as Ithink we're coming up to our fifth birthday soon
which is incredible we've done so much since thenwhat we do is we focus on three pillars which is
research support and education and our aim is to beI guess a place that you can come to for any queries
(07:56):
that you may have about secondary breast cancerwhether it's wanting to understand it as a newly
diagnosed person or if you're further down theline like myself and maybe things are changing and
you want you want the best advice or the right placeto go that's what makes seconds count aims to do and
one of the big things we do is fund research intosecondary breast cancer so and the things that we
(08:17):
tend to focus on are what you would I guess what theysay is near time so it's things that's not
necessarily going to be 10 or 15 years down the linebut it might be something that would support the
community in the here and now so whether that be awell-being thing or you know a drug or it might look
into sleep or it's funding those types of researchthat will help you live well with secondary breast
(08:43):
cancer which is a huge part of what makes secondscount is about where they are to provide hope for
not only the secondary breast cancer patient buttheir friends and family and so the three pillars
that we work on aim to do that via educating themabout secondary breast cancer not only the
patient but maybe the general public the widerpublic who maybe don't understand so I guess
(09:06):
there's different sides different tales that youcan tell different stories you can tell and
support which is the side that I'm mainly focusedon with make seconds count is providing support
daily in the here and now whether that be throughonline services or in person groups and
activities retreats well-being we do yoga andmindfulness and breath work so yeah we try and
(09:32):
cover as many aspects of life with secondarybreast cancer as possible and the hope that it's
making it easier for the community to live withsecondary breast cancer and what does your role
involve well I am support and patient engagementmanager I was the support coordinator for the
charity and I actually started out as a volunteerand I was a patient champion when I found make
(09:56):
seconds count I myself was looking for communityand help and found them so my role has been to
establish the support services because we didn'treally have anything then COVID hit and we found
that a lot of our community were incrediblyisolated and so that's where our first support
(10:18):
service was born which is tea and chat which wasbasically an online program where you could join
us for an hour and chat it could be about cancer itcould be about life anything and everything and
that's still going strong to this day but we'veintroduced now in person setups for all around the
UK and so my current role is to try and establishthose that are here and find new places to set up
(10:44):
these groups and a big part of my job is setting upthe retreats which is a couple of days away for
members of the community to just make friends tomeet other people in the same situation in a safe
space and provide them with some lovely food somelovely you know accommodation some mindfulness
(11:06):
some yoga just really give them a place to go andexperience um what it's like to meet other people
in a similar situation and we found that thatretreat service I'm not sure there's many other
people offering that so make seconds count I'vetried really hard to grow that um the plan next year
(11:27):
I think is actually to have six so this year we didfour so we're always aiming to you know improve
what we've currently offer and actually allowmore people to to find and take part in these
services so yeah how can patients access that andthey can access it via our website we basically and
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normally around January time we'll announce whatall the activities are going to be and where
they're going to be and you can sign up for all ofthem if you wish or if there's only one that you're
interested in you can sign up and then what we do iswe do it's a random draw um so it's open to everyone
but we we do firmly believe in it being fully fundedso that you know you're not held back from so we will
(12:14):
provide travel expenses and we'll pay fully forthe retreat so they're not out of pocket hopefully
so um so yeah that's fantastic yeah thank you we'revery very proud of it yeah everything will be on the
support section of the website um at the start ofthe year so um what I would suggest is if people are
interested is to maybe sign up to our newsletter umwhich you can do so from the homepage of our website
(12:38):
because that will ultimately be what lets themknow that you know the retreats are live and ready
to sign up for so they're always very muchoversubscribed um so we try very hard to bring as
many people as possible so it will always besomeone who's never experienced a retreat before
that'll take priority you can apply again if youwish but it would always be a last minute place if
(13:02):
you know someone pulls out for whatever reason soit's not like you can't experience it twice it's
just we always offer it to someone who's nevernever been on one first so each year we're always
trying to add more to it so yeah takes a lot of timethough and a lot of work well we'll put the links in
the show next so that any listeners can have a lookat that you mentioned that your mindset from the
(13:27):
first two years of your secondary breast cancerdiagnosis to now sort of eight years on was really
really different was there an active thing thatyou did um and how did it change I I've thought about
this a lot actually I think just recently becauseum a few members of the community have asked me a bit
(13:51):
about it was more just I think there needs to be thatlevel of stability that comes from your scans
because I think you're not really going to trustthat mindset without that um so I think in the first
couple of years I was very much like a rabbit caughtin headlights and I'd obviously aimed for being
all clear and moving on and that sort of ripped awayfrom me almost straight away and you have to get
(14:15):
used to this whole other way of thinking and I'dlost my mum to secondary breast cancer as well back
in the 90s so I obviously had that fear thatinstantly became oh this is my life this is what's
going to happen to me and I couldn't shift that umand I think what happened was a finding makes
seconds count um getting really involved in theirvolunteer program um spending a lot of time with
(14:41):
other members of the community and I think justlearning to share and not be afraid if I was there
were times when I was really really very veryscared that you know I wasn't going to see my niece
and nephew grow up they were very young at the timeand I think there's just a lot of things that come
into your brain that you feel that you've got nocontrol over um and over time what I've managed to
(15:08):
do is take a bit of that control back but in allhonesty I'm not sure where I would be had I not had
stable scans to back that up I think that's a reallyimportant part of it is because in order to trust
your treatment and trust what's happening I thinkyou need to scan to back it up and only then do you
maybe start to let go a little bit and not feel sotense about absolutely everything and I've
(15:32):
obviously had the luxury of five six seven years ofnot many changes not many ups and downs whereas
other people I know are constantly having tochange how they think so I guess it's come easier to
me um but then working within makes seconds countand with the community I've seen what other people
(15:56):
go through as well so I guess it's a bit of both butyeah I think it's just trusting that you know you
are stable your treatment's working yeah and thatjust allowed me a little bit of freedom I guess to to
think about the future again and obviously nowfurther down the line I've saw my niece and nephew
grow up which is what I didn't think would happenand I've also realized that the treatment that was
(16:21):
available to my mum in the 90s it's night and daywhat's available now and so there's obviously
that as well and knowing that there's a lot of othertreatments out there as well helps I think um
certainly for me I know there's a a list of thingsthat I can move on to so it's not necessarily going
to be the end of the world if I do have a progressionit will take so I think it's lots of things that get
(16:47):
you there but those I would say would be the mainthings for me yeah absolutely um you obviously
came to make seconds count in the first place whenyou're in this really vulnerable position having
been diagnosed and now you're a little bit betteryou're doing well you're stable but you're
spending a lot of time working with and living withsecondary breast cancer do you need to escape that
(17:12):
sometimes and if so what are your copingstrategies? Sometimes yes I will be the first to
admit that sometimes I'm not very good at doingthat either because I get very involved um I feel um
a lot of you know responsibility to the communitythat we've built and that we look after so and it has
(17:33):
for a long time been just me doing that side of it Iguess for the charity obviously with support from
other team members but it's really just been methat's been kind of interacting with them so there
are moments there are ladies that I've lost in thecommunity that I've got very close to and I've had
to step back and I've had to step away and take amoment a to to grieve for them I guess but also to
(17:57):
make sure that I'm still in a good place because Ican't support them if I'm not in a good place so um
I'm very lucky that make seconds count areincredibly we've got a really good team who look
after each other um and they're also aware that I'ma patient so that they're they're very good at
making sure that I'm maybe not doing too much or ifthey need to tell me to step back a bit because like I
(18:23):
say I'm not always the best at doing that because Ilike distraction I like things to keep my mind
occupied and I find that I've got a real passion forthe community and for make seconds count so
sometimes it does overtake but yeah you alwayshave to make sure that you're all right first and
foremost and I do struggle when I lose ladies fromthe community um it's hard it happens a lot sadly um
(18:53):
but I think you just have to try and ground yourselfagain and know that everybody's story's
different as well and that just because that'shappened to them that's not what's happening to me
and I guess you have to remember that it's very easyto get lost in the you know the sadness and the the
overwhelming responsibility you have to thecommunity that you're also trying to pick up at the
(19:18):
same time because they'll have also lost someonethat they've got close to um so yeah I think it's a
real balancing act sometimes I'm all right atother times I'm not I'm quite happy to admit that
I'm not always the best at it but I do try really hardto look after myself as well it's a fine balance
because someone else who doesn't have secondarybreast cancer could do your job yes but they
(19:41):
wouldn't do it with the same level ofunderstanding and they wouldn't have that same
connection I think exactly that I think there's alevel of understanding about what it's like to
live with it there's an empathy there for I may notknow what your experience is necessarily with
your drugs but I understand what it's like to livewith it and to to have to constantly be on that
(20:01):
roller coaster as such so I think in that regardit's it's beneficial to have someone that
understands and I think the community trusts thatand they trust the charity for those reasons
because they've got people who understand youknow working within the charity and I think that
goes a long way. I'm Gareth the editor of Vitamagazine Vita is breast cancer nurse magazine for
(20:27):
anyone affected by breast cancer it's full ofinspiring real-life stories expert tips on
coping with the effects of breast cancer andarticles on health and well-being in our new
spring issue you can read about a mother anddaughter who were both diagnosed with breast
cancer 12 years apart find out the latest in breastcancer research get tips on coping with fatigue
(20:50):
read about the benefits of getting outdoors andmuch more subscribe to Vita now at
breastcancernow.org forward slash Vita can youtell us a bit about the partnership between breast
cancer now and make seconds count and how the twocharities are working together yeah of course um
our patient trial advocate service started in2021 um after some feedback we'd had from a survey
(21:17):
that would put out to community about things thatthey felt were missing or that they needed and what
came from that was There really isn't a lot ofaccess to clinical trials and there isn't a lot out
there for those living with secondary breastcancer who are maybe at a point where they want to
(21:38):
know what else is available to them or somethingthat will give them hope. So the PTA service
started, launched in 2021, and it started off as apilot in Scotland, in a very small area of Scotland
that we used to put. It was very, very successfulvery quickly. There was a lot of referrals and it
(21:59):
became very clear very quickly that we weregetting a lot of referrals from people out with
that pilot area because there isn't really theservice anywhere else that's unique to Make, 2nds
Count. And it was a way for us with the educationpillar as well as the other stuff is to educate
people about clinical trials and maybe todispense some of the myths that there is around
(22:24):
clinical trials. And Breast Cancer Now have beenincredibly supportive of the Patient, Trials
Advocate Service and that they've been very muchsignposting our service to their nurses and
making everyone aware of the service andreferring patients to it because they're also
very aware of how important clinical trials are tothe Second Breast Cancer Community. And one
(22:50):
amazing thing that they've done is that theygranted us a £20,000 grant to go towards the
Patient, Trials Advocate Service to help uscontinue it, to hopefully put that towards maybe
introducing more nurses. We currently have threewho work all over the UK. So this money will help us
(23:12):
continue the service, hopefully expand it andcontinue to offer people an insight into what
clinical trials are and our nurses effectivelysit you down and talk to you and talk through your
questions obviously. If you've got any questionsthey'll answer those. But even if it's just simply
(23:33):
a phone call that you want to understand a bit moreabout clinical trials, there's no obligation to
take it any further. But if you want to, the point isthat they'll go away and do all the research for
you, which I know I would find incrediblyconfusing if I had to try and understand those
databases, I wouldn't be able to do it. So thenurses are very good at that. They'll go away and
(23:56):
they'll research it all and then they'll send youall your information back and they'll also notify
your oncologist that with their permissionobviously that you're interested in clinical
trials and want to know more about it. So I guess alot of it's about empowering the patient, but it's
also I guess making clinical trials themselvesmore accessible. Because I was very confused
(24:21):
about clinical trials and didn't really know a lotabout them and I've found out more through just a
service loan and working with the fabulous nursesthat we've got. So yeah breast cancer now, I think
we're really keen to work with otherorganisations and charities who are passionate
about the secondary breast cancer community andservices like this which are going to help. And
(24:42):
breast cancer now have been incrediblysupportive. Our nurses have gone and spoken to
breast cancer now groups of patients as well toexplain the process and the service. So it
obviously gives us access to more patients who aremaybe not directly members of the M2C community
but you know maybe they don't know who makesseconds count at this point but breast cancer now
(25:06):
are allowing them to come to our service I guesswhich is fantastic. And is that anywhere in the UK?
It is and I think for some people there's maybe beena bit of confusion and that they maybe think that
we're a Scottish charity only, but we support UKwide and a lot of our services are UK wide. So the PTA
is accessible for anyone in the UK, our supportservices are accessible for anyone in the UK. In
(25:30):
fact we have quite a lot of groups that are now outwith the UK so I think it's really just quite
important for us to let the community know that youknow it's not Scotland only. Where yeah UK wide for
sure. Fantastic thank you. So what is a clinicaltrial if you could sort of because I think we all
have an idea in our heads of what it means but I don'treally know much about what it is, what it does. And
(25:54):
I would have to say I kind of agree I'm not an expertand by any means I know a clinical trial is there to
hopefully establish another line of treatmentand it's about I guess you need patients to be part
of these things to see if this drug is going to work.But like I say I'm not an expert on clinical trials
(26:17):
at all that's why we've got our fabulous nurses whodo that. So what I would say is if you do want any
information I would make an appointment, I wouldbook and speak to the nurses and there's no waiting
list you can simply book an appointment onlinethrough the MakeSeconds Count website and it can
be a date that you choose so it can be convenient foryou and the nurse will phone you and talk to you and
(26:40):
explain but I guess in the simplest terms it'sabout without the clinical trials we're not going
to have access to new drugs so a clinical trial isall about will it find you another line of
treatment and as a secondary breast cancercommunity that's exactly what we need and want is
you know access to more treatment lines and I guessthey can only come from a clinical trial but as I say
(27:06):
I'm not an expert myself I've tried really hard tolearn as much as I can but our nurses are far better
at it at all that than I am. So is a clinical trialonly for someone who's exhausted all of their
lines of treatment or is it something that youcould ask for at the beginning of your diagnosis? I
(27:27):
think that's one of the myths that we as a charityhave tried to dispel because actually you don't
have to wait until and in fact it's probably more inyour favour to do when you've not exhausted all
your lines of treatment because at that point Iguess you're going to be quite unwell and so my
advice would be if you're interested in a clinicaltrial ask about it as early as possible even if it's
(27:48):
just for the nurses to research what's currentlyavailable to you it will give you that knowledge
and you can then make your oncologist aware youknow that you're interested in clinical trials
but I think that's one of the big myths that we triedto dispel at the beginning of the PTA was that it's
not purely for when you've exhausted all optionsyou can look and see what's available to you at any
(28:11):
stage. I haven't done it personally because I'mstable on first line treatment but I always had it
in my head that should I have a progression thatwould be something that I would be interested in
doing and I would want to find out more at that stagebut yeah definitely I wouldn't leave it until the
you know when you've exhausted all your lines oftreatment I think it's more advantageous for you
(28:35):
to do that a lot earlier on in treatment. So beforethis service came about how would a patient access
a clinical trial is it something they would asktheir oncologist about or? I would imagine that
would be the way it would have to have been yet I knowthere's there's databases which list all the
current clinical trials that are available in theUK I think there's about six of them but having had a
(29:00):
look at one of them I was I was incredibly confusedby everything I didn't really understand the
language I didn't really understand any of it so Ican imagine that before this service that would be
what it would be like for you if you were trying tonavigate this yourself so I think the beauty of the
PTA services that they do all that for you and theycan understand all that information and then
(29:21):
they'll report that back to you and feed that backto you in a way that you understand. One of the other
things that the charity did off the back of that waswe've taken all that information from all those
databases and we've listed it as a clinical trialregistry on our website and it lists it all very
clearly and it's updated every month so at anypoint you can really see what's available and I
(29:44):
think it's laid out in such a way that the languageis easier to understand which I think is also
really important because we don't necessarilyknow all the medical jargon and I think this is
another way to just make clinical trials moreaccessible. And are they accessible to all
patients, private or NHS? Yes I believe so yes Ithink there's obviously differences in how you
(30:09):
would maybe access them depending on whetheryou're an NHS patient or a private patient but as
far as I am aware clinical trials are available toanyone and everyone who would like to access them.
Brilliant. You're very much making me want to goand learn more, go and call one of these nurses. I
know you're not an expert on clinical trials but Iknow that there are strict eligibility
(30:33):
requirements for getting on a trial and then whenyou're on a trial I believe you are regularly
tested and there is a chance that you may be removedfrom the trial if you're not hitting certain
health targets. I don't know if targets is theright word. When I realized that that was the case
(30:53):
it struck me that it would be something that wouldbe mentally terrifying and exhausting and
confusing. Is there mental health support forpeople who are on clinical trials do you know? If
you're accessing it via makes seconds count wehave other services that would hopefully be of use
as in support groups that we have online or you knowthe team chat service that we do which runs monthly
(31:18):
so I would hope there's always someone that youcould speak to but yeah I know that the criteria is
often very very strict and in some cases you may noteven be eligible for that trial because you don't
meet those criteria which I guess must be one of themost difficult things about clinical trials. If
you're you know if you're I guess at a point whereyou feel that's what you need but then if you can't
(31:42):
access it almost it must be so soul-destroying butyeah I would imagine that must be something that is
part and parcel of what the clinical trial is. Iwould hope it would offer more than just the
clinical trial itself. Yeah I don't know I suspectmaybe also it's it's organizations like yours and
like breast cancer now. Well that's at breastcancer now makes seconds count I guess we're there
(32:04):
as backup I would like to think that you know youknow that you have these services that you can
access so if you are struggling mentally withmaybe what the criteria is or whether you're
struggling with something about the clinicaltrial I would like to think with our community
there's a lot of questions that are asked there's alot of shared experience within our community
groups so if you're sharing that experienceyou're picking up those things and I would hope
(32:29):
that that would be helpful and I imagine breastcancer now groups would be exactly the same that if
you're sharing experiences it can only help. Yeahabsolutely. What's the situation like in terms of
funding and research for secondary breast cancerpatients? I think it's difficult I think it's
(32:50):
always hard to a lot of what we do in our fundraisingis to fund research primarily that's the biggest
part of what makes seconds count does and oursupport services have certainly grown but the
biggest part of what we do in terms of fundraisingis to fundraise for research because there isn't
that much out there and I guess it's about doing asmuch as we can to fund projects that are going to be
(33:17):
of use and of benefit. I think there's othercharities out there that funds I would say maybe
long term research that may take 10 15 years to cometo fruition I think for us we try really hard to find
things that are maybe going to be of benefit moreyou know in your time because a lot of that's really
important to those who live with secondary breastcancer and you are on a timeline I don't like to
(33:42):
think of it like that but for a lot of people it'squite urgent you know and you do need things to come
around a lot quicker and it's not the quickestthing you know to to have new drugs come around so
yeah certainly fund raising into research is themost important part and where does the
fundraising come from so for make seconds count itcomes in a number of ways and we're very lucky in
(34:05):
that we have a very active community who fundraisefor us by doing you know their own fundraising and
we get funding through trusts and foundations viaapplying for things like that so and obviously
there's a lot of corporate fundraising that youcan access so I think it's just about assessing as
much as you can but we as a charity are incrediblylucky that we have a very active community who
(34:31):
fundraise daily for us and who get up to all sorts ofantics on our behalf and a lot of them do like to say I
want this to go towards research and that'ssomething that the charity can do if you want your
fundraising wanting to go say you don't want it togo towards anything other than research that's
(34:52):
exactly what would happen so yeah that's cool Idon't know if everyone does that as someone with
secondary breast cancer myself I know there's ahuge amount of self advocacy involved in
everything from diagnosis to treatment andbecoming a part of a clinical trial requires a real
level of productivity that many patients justwon't have the time or energy for what kind of
(35:15):
support is there out there for secondary breastcancer patients who don't necessarily have the
time or energy to you know do all the work I meanagain I think that's where the patient trial
advocate service comes in is that they can take onthat burden I guess if that's the right word to use
but they can be doing all the heavy lifting and thehard work and they can find what's out there for you
(35:39):
and then they can take that information to theironcologist because I think it's it's not wrong to
say that oncologists don't often have a lot of timeeither so the PTA service is helping them as well as
the patient so I think you know if I understand thatyou know you are going to be tired and it may be that
(36:01):
you don't have it in you to do that but that's where Ithink you should utilize these services that are
now created for that reason and the PTA nurseswhat's great about it is that it's not just once if
you want to go back and speak to them again you justmake another appointment and you can follow up and
we've had people that come back two three timesjust to update you know their situation or maybe
(36:24):
want to check if there's anything new so I thinkwhat's good about that service itself is that it's
taking on all that hard work for you but you'restill benefiting as a patient and obviously our
hope is that you would access a trial and we don'talways find out that information but that
ultimately is what the service is aiming to do is toget people on to clinical trials so I think that's
(36:49):
where I would just say use those services that'swhat they're there for you can still advocate for
yourself but you can have someone else do what maybe the hard stuff and you can still be very
proactive in other ways and if there's someonelistening to this podcast here is perhaps a spouse
or a family member of someone with breast cancercan they get in touch with my seconds count and you
(37:10):
know do all that liaising on their behalf. Yes itdoesn't have to be the patient themselves you can
have your friend or your family or your husband oryour daughter we've actually had that a number of
times where it's been someone else and you don'tneed to know a lot of background information
either and there's very basic questions thatwe'll ask and even if you don't know the answers
it's not a deal breaker that's where the chat withthe nurse comes in so I guess as long as that person
(37:35):
is aware that someone's making the referral andyou know that there will be a conversation at some
point but yeah anyone can make the referral andthat's another thing that I think is really really
useful because it may be that you're not maybe wellenough to do that and so maybe your spouse will do
that for you but yeah the nurses are happy to speakto anyone and anyone can make that referral for
(38:00):
you. Brilliant well I'm sold I'm definitely gonnamake the call myself. Absolutely I think for no
other reason and it allows you just to learn a bitmore and I don't I always think knowledge is power
and the longer I've been on this secondary breastcancer I hate the word journey but the longer the
longer I've been on this journey I guess I'velearned that the more you know the easier things
(38:28):
can be for you and I've certainly learned a lotthrough the nurses and through the service itself
but also from the feedback we've had we've had 100%feedback on the service positive feedback and
that no matter whether it goes as far asidentifying trials for you but it may even be as
simple as explaining what a trial is and I'm surethe nurses can do that far better than I have today
(38:54):
but yeah absolutely I would recommend at leastlike I say there's no obligation to take it any
further but if you just even like to find out moreyou know about the service or about what's open to
you and I would definitely go ahead and make anappointment with the nurses. Where can people
find out more about Mexicans count? So our websitewhich is www.mexicanscount .co.uk you'll find
(39:23):
all of our services there you'll find everythingon our research support and education pillars and
within the support section is the patient trialadvocate section so you can make a referral via
that booking form online but even if you just wantto find out a bit more about what secondary breast
cancer is there's a whole big section on that abouttalking about whether it's in your bones or in your
(39:44):
liver or brain or you know it tries the website'sreally useful for just trying to gather as much
information as possible so yeah that's where Iwould always point people in the directional
first. And we'll put the links in the show notes butthe spelling of seconds is 2nds isn't it? Yes it is.
I would like to end by asking you the one question weask everyone on this podcast which is what is the
(40:08):
one thing you would like to see change in the comingyears in terms of secondary breast cancer
diagnosis treatment research everythingsurrounding that? I mean for me I guess and this is
probably coming from a personal experience isthat I would love for the doctors or the nurses or
(40:28):
whoever to maybe just respond when you come with aquery necessarily like I had a lot of time where I
had to fight to say that you know I had thiscondition and they were telling me it was mastitis
for six weeks and it wasn't mastitis you know I hadno kids I wasn't breastfeeding but almost I felt I
(40:49):
had to fight and I feel like if I hadn't had to havewaited those eight weeks my own prognosis may have
been different and I think for secondary breastcancer specifically there's a lot of ladies that
go back to their GPs or go back to their team and sayI've got a bad back or you know I've got a pain and
it's often they're not joining the dots andthey're not going with this person had breast
(41:11):
cancer why don't we just investigate this and ittakes a long long time but by that point it may be too
late and you may be you know further along in yoursecondary breast cancer journey as you would need
to be so for me I just I would like the patient to bebelieved a bit more when you know or at least
investigated whether that be with a scan orchecking your notes and seeing that actually
(41:35):
they're not just coming because they've got a soreback they're coming because they're concerned
about something else so for me personally I wouldlike that to be a bit more accessible and obviously
lots more research lots more treatment optionsyeah that would be wonderful absolutely well I
agree and thank you so much for all the work you'redoing with Make Seconds Count it's so important to
(41:58):
this community thank you and Claire thank you forcoming on the podcast thank you for having me and
thanks for letting me talk a little bit about whatMake Seconds Count does and about our patient
trial advocate service we're incredibly proud ofit so thank you for letting us share thank you if you
enjoyed this episode of the breast cancer nowpodcast make sure to subscribe on apple podcasts
(42:18):
spotify or wherever you get your podcasts pleasealso leave us a rating or review on apple podcasts
and perhaps recommend it to someone you thinkwould find it helpful the more people we can reach
the more we can get breast cancer now's vitalresources to those who need them you can find
support and information on our websitebreastcancernow.org and you can follow breast
(42:40):
cancer now on social media at breastcancernow allthe links mentioned in this episode are listed in 411 00:42:46,160 --> the show notes in your podcast app thank you for listening to the breast cancer now podcast
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