This podcast contains the personal stories, opinions and experiences of its speakers, rather
than those of Breast Cancer Now. Welcome to the Breast 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 author and I live with secondary breast cancer. Today we
are talking to Hannah Gardner, who you may know from her Instagram handle Real House of Hannah.
Hannah lives with secondary breast cancer and is part of Breast Cancer Now's campaign to get access
to the life-saving drug in HER2 on NHS England. You might have seen Hannah's friend Nadia Sawala
talking about the campaign on ITV's Loose Women. Before her diagnosis, Hannah was a clinical
trials manager and since her diagnosis she has taken part in a trial so you'll be able to get her a
perspective from both sides. Hannah, thank you so much for joining us and welcome to the Breast
Cancer Now podcast. Thank you for having me. I'm excited to be here. I know you've had multiple
breast cancer diagnoses over the years so could you start by telling us how old you were when you
were first diagnosed and how you got that diagnosis? God, I was 26. I was doing something
really random. I was setting up a treadmill at home. I tried to get myself to the gym and thought,
no, let's buy a cheap and cheerful one from our goer, get it home and hopefully stick to some sort
of fitness program. So weird situation, setting up a treadmill and it turns out they're really
heavy. I pulled, no, I thought I pulled. I was being dramatic. I thought I'd pulled a muscle so I sat
down and started rubbing my chest area and it was from that that I came across like an unmistakable
lump and I remember thinking, how have I not felt this before? Yeah, so it was at that point I
thought, you know what, it probably isn't anything. I'm young. I was under the impression
that having breast cancer at such a young age would take a significant family history. I was
mistaken. I took myself off to the GP, said I've got a lump. I mean, initially I did receive a little bit
of resistance from them. They said they couldn't feel anything and I did something which was a
little bit unlike me back then. I pushed. I said, well, no, actually it is there and I think I might
need to get checked out and she said, okay, and I know that I'm quite lucky about that because some
people have been sent away not once multiple times and really have had to push to get that referral. I
didn't have to push too hard but I'm glad I did say because yeah, I ended up being diagnosed with
stage 2A, grade 3 breast cancer and after you know how it is initially they don't necessarily know
the extent of things. Once I'd had an MRI it showed that it was almost 10 centimeters big. So to think
that someone said they couldn't feel that lump and to think I had never felt it just goes to show that I
was neglecting to check myself. That reminds me of when I first found my lump which was in January
2012. I went to the doctors as well and said I've got a lump here and they said, no, that's your rib cage.
Oh my god, your rib cage. Okay, that might be my rib cage but there is a lump there. Feel a bit more, make
a bit more effort and then they were like, oh yeah, there is a lump there. So you just have to push back.
So yeah, so you were 26 then. Did you have chemotherapy, surgery, the works? The works is
exactly the full shebang. I had a mastectomy. I had a lymph node clearance which really made me
nervous at the time with the whole lymphedema risk. That's something that really played in my
mind and then chemotherapy. I didn't have radiotherapy back then actually. I had
chemotherapy and then started to moxifen. You've mentioned in the past that you weren't actively
checking your breasts. Did you feel you were taken seriously when you were taken to the doctor and you
went to the doctor? So initially I feel because we know now that it was a 10 centimeter lump and it was
mixed with DCIS and IDC so it wasn't all invasive cancer, about two centimeters of it was. Yeah, to
know that it was 10 centimeters big and that it was really palpable and big enough for me, someone who
thought that I probably wouldn't have breast cancer to go and get myself. I still got myself
checked. It worried me that much for them to say they couldn't feel it. I feel was a bit of
resistance and maybe I don't know what it is because we do hear the story quite often with
younger women and I don't know if it's because the words rare have been thrown out but is it rare? I
mean as a standalone figure I think the statistic is quite significant enough that younger women
are affected by breast cancer. But yeah, so I don't know what it is that they'll see a young person in
front of them but perhaps have some sort of bias. I don't know what it is but yeah, I did feel that there
was a little bit of resistance but I pushed back. I'm quite proud of 26 year old me that normally
would have listened to a doctor and thought you know everything fine, I should be on my way but no, I
went with my gut and said that I'm worried, I think it just needs a little bit of further
investigation. Absolutely, yeah you should be proud of 26 year old you and for advocating for
yourself and also I always sort of feel the need to point out that I think I've heard over the years
lots of women saying I have a lump, should I be and I've been told it's nothing, should I be going
back, should I be going back and of course in a lot of cases it is just a cyst and it's not cancer so I also
don't want to scare people but I think sometimes it's that balance isn't it? Yeah, I think
sometimes when you have that feeling or if you've allowed time to go by and you still feel it there
then maybe that's the time to go back and get another check. So your story is very similar to
mine in that you were diagnosed with secondary breast cancer almost 10 years after your primary
diagnosis. How did you find out your cancer had spread? Of course so I've been diagnosed with,
well I've been told you have cancer from zero four times now so I didn't go straight to a secondary
diagnosis. After my primary in 2013 I was diagnosed with a recurrence in my chest wall a few
years later which is when I ended up having a mis, well I had a wide local excision because I'd
already had a mastectomy and ended up completely flat so I wear a prosthetic on my left and I had more
surgery, more chemotherapy and then I had radiotherapy and a different hormone therapy and
then despite that second bout of treatment it came back again and this time it was under my arm so I had
more treatment then. I didn't have chemotherapy they said at the time that it might not be worth it
because you don't seem to, it's not, it doesn't seem to have worked in the past, maybe it's not
worth it and I don't know how comforted I felt by that at the time but I did have surgery to remove it
and radiotherapy but yeah it was in June 2022 that I was told the cancer is in your liver and yeah it was
really, despite having been told you've had cancer before this it hit completely different
knowing that well knowing full well that it's incurable and that you know it's life limiting it
was a lot to take in and I felt that the very thing I'd been trying to outrun for years because once you
have breast cancer primary cancer you know treatment might finish but the worry can continue
and it's traumatic for various reasons but there's also that kind of cloud that you know you
live under that makes it sound like life's all doom and gloom you have a lovely wonderful life but for
me there was always a niggle that it might come back and if it does come back is it going to be stage four
and then it happened it happened and it happened when my daughter was two years old and it sucked it
really sucked I am sitting here nodding my head because I understand so well all of those feelings
of having breast cancer and always wondering and worrying that the worst could happen and then the
worst happens and I think our worst happened within weeks of each other because mine was early
July 2022 how strange is that and yours was June and I remember at the end of June I think it might have
been the 30th of June was when Deborah James Dame Deborah James died yes and so I was approaching my
diagnosis and all we could see on the TV were these constant updates of Deborah getting sicker and
sicker and we were seeing her death on TV and it really really resonated with me because I felt
that I had this diagnosis coming I can imagine our summers of 2022 were quite similar it was very
lovely wasn't it yeah it was it was hot how how did you feel that that summer if you can I just I was
gutted I was absolutely gutted and I was also angry at myself I mean we always talk about cancer not
just affecting the person who's going through it it affects you know people around them you have
this radius spins out and the diameter so encircling family loved ones friends and yeah I'd
caught up my little girl in all of it there she was at the epicenter of it and it's that whole thing of you
know cancer doesn't just affect you physically it affects you emotionally mentally financially it
affects your home life your work life and that doesn't end when your life ends that remains for
those very close to you for a long time and I just hate the fact that my daughter is going to
experience that you know she doesn't deserve to be robbed by cancer you know robbed of a mum and the
love protection comfort that we give to our children as mothers you know she deserved the
world what what are you angry at yourself for that she won't have a mummy to take her to the park like
all our other friends will I think it's that you know she's innocent in all of this and yeah I know
well I you know I'm logical I know it's not my fault but I help but feel guilt that she's entangled in
all of this and yeah and that's just the reality of secondary breast cancer that children well you
know partners mum's dad sisters brothers colleagues were all affected but it just it gets me
when you know innocent kids that perhaps can't comprehend what's happening don't have that
understanding and yeah what is it like being told you have secondary breast cancer when you have
such a young child yeah I'm just looping back to before it's just gutting it's heartbreaking I am
really sad that just the little person is potentially not going to have a parent and yeah it
really it gets me she meets she's my absolute world and like it's it works both ways because yes I'm sad
because of that impact that might come but equally like she is my reason like the light of my life the
best thing that has ever happened to me when I have primary breast cancer I'd always have this image
of wading through like a slurry of shite like you're like this river wading through it but I'm
going to get to the other side so as rubbish as it is I need to keep moving forward one foot in front of the
other and I will get to the other side and get through it. With a metastatic breast cancer I
don't feel like I'm going to get out onto a bank and it's not going to be over so I'm kind of in this
little bit of a crap situation but I can step into the pools of joy I can find the joy every single day
find a reason to laugh smile and just to be me be the essence of me you know because I'm not cancer is a
huge part of my life and that's inevitable because of being in and out of the hospital and taking being
on active treatment but you know I'm still Hannah and I'm still Lila's mum and yeah I still want to
live life and Lila brings about so many you know moments of those glimmers that see me see me
through yeah. And how do you juggle with motherhood with your treatment and your illness?
The fatigue is that's what gets me and I've been dodging chemotherapy like neo in that end scene in
Matrix for about nearly two years now and it's because having had it before we know that it does
wipe you out at least for those first few days and then a little bit later on but you can bet your arse
I'm going to keep going for as long as I can because I don't want her to you know I'm not going to run
myself into the ground but yeah I yeah I'm going to keep going I will yeah. And she's going to be able to
see how much you are doing for her and caring for her as well yeah kids notice these things even if
they're three I hope so. So I'm going to do a memory box a big old memory box with lots of different bits
and pieces favorite photos and I've been trying to think what would I what kind of questions have I
asked my mum over the years when my mum's not here anymore so I have questions that I might want to ask
her now as an adult but growing up what kinds of things would I want to know about not just about me
but you know how I think and how I might advise or essays bits of writing photos yeah. I don't have
biological children I've got stepchildren but I did experience a similar similar thought when I
was diagnosed that how have I I've brought myself into their lives and I will bring the pain into
their lives as well and I so I have experienced that to some extent probably different from no I don't
think it's it's hard but I also do very much know that it's not my fault and I also do very much know as
reassured by my wonderful husband that they would all much rather have me in their lives and have the
pain and the loss and the anguish of what we're all going through together than not have as in their
lives and I'm sure it's the same for your family so I know I know but yeah and then came hope hope did come
we think look there are loads of different treatment options let's get cracking and see how I
get on so I started palbocyclib which is similar it's one it's a sister drug of ribocyclib yes which
I'm on yeah and well I think I started to panic quite early on because after three months I wasn't
responding so I moved on to another drug capesitabine I got six months out of it wasn't
responding well I did I had one one scan that was stable but yeah so after six months that's when I
started looking at a clinical trial Serena won and I joined that in June of last year 2023 so how do you
get on a clinical trial and what does it involve so I got on the trial because my team suggested it but
I'd always said from the off that I am interested in clinical trials and that's I think that's one of
the most because I've been asked about because I used to work in clinical trials I was a clinical
trial manager I worked on later phase treatment trials so at that point you're kind of looking to
see whether or not the experimental treatment is better than the standard of care so there's a
comparison but lots of trials in that we'd be looking at as metastatic patients are earlier
phase which means that you're going to get the drug they're not comparing at that point they're
testing it in smaller groups of patients to have a look at the safety and any side effects but yeah
they said that there's a trial available it's a bit of a gamble because of it being early phase they're
testing it in one or two patients then opening up other slots so there's no guarantee as to when
space might become available and it was at that point I said look I really want to go for it I mean
that's adding an extra treatment line I think of them like Mario lives like if I can add an extra life
maybe it'll keep me around that little bit longer I love that analogy I'm going to use that yeah
anything to do with Nintendo I'm on it yeah one up yeah and I waited I said look let's let's try to
moxifen again I'd had it before but it's been like eight years since I'd taken it I thought maybe my
cancer's mutated enough to forget how to respond to moxifen so that covered me for six weeks and then
they scammy quickly said yeah you've progressed so we're closer to when you might be able to get on to
the trial and yeah I just I got through the eligibility criteria and that's one thing to
remember it's not necessarily it's not easy getting on to a trial for a variety of reasons and
you know up and down the country they're not distributed equally it's almost unavoidable but
it's it is a bit of a lottery as to what might be available where you are and you know whether or not
you're able to travel to a hospital that is running the trial um there's also you know on paper say yes
you're you're a candidate for this trial but then it will involve you know pre investigations and
those can throw up anything you might get a blood test result or an echo um scan result that shows
something that makes you fall into the exclusion criteria um but yeah the gamble paid off I got on to
the trial and I got six months out of the Serena trials on arm K which was ribocycle and the
camivestrant so um so what so so on the trial they put they put you on a combination of drugs yeah so
the trial drug was so the Serena there's lots of Serena trials they're testing camivestrant
that's the name of the drug and they're doing it in combination with other drugs right so I was on arm K
so it's got so this is I think it's similar to a MAMS trial and that it's got different arms several
different arms testing different things so this combination they've had a ribocyclic sorry I was
on the ribocyclic they have a ribocyclic um with camivestrant combination and then they've had a
palbocyclic with camivestrant combination and so on so on and how did it work for you during those
six months it was fine because I'd been on a CDK 46 inhibitor before you know that they're quite
that's ribocyclic and palbocyclic yeah and a bemocyclic yeah one thing I will say they're
definitely one another I'm going off on the tangent here they're not chemotherapy and I say
that because I've been talking to people about trials um a fair bit online and it's quite common
for a trial to stipulate that you can't have had more than two lines of chemotherapy or similar
like one or two lines of chemotherapy in the metastatic setting and people say well I can't
well that's me out then because I've had I've had palbocyclic and I've had um capicyte being well no
because it's not classed that and that's something that I would advise people to really get
to grips with the type of cancer they have and the treatment that they've had already and to ask
questions if they're not sure just to make sure that they're not dismissing anything that might
actually be good for them I've gone off in the tangent I do this quite often here sorry just just
on that tangent it's a little bit of a technical thing but anyone who's on palbocyclic or
ribocyclic the pharmacist at my hospital which is one of the best hospitals in the country for cancer
thinks that ribocyclic is a chemotherapy drug and it is not and my oncologist says it is not but it is
very easy for you to be confused when the medical professional is telling you the wrong thing which
does that Google it as well it'll say it's not a traditional chemotherapy which makes it sound
like it is yeah and it's that kind of thing that you know it upsets me and someone's oh no you might have
been you might have been eligible had you asked the question at that point so what was the reason you
were taken off the trial after six months stopped working so it worked but then it stopped working
yeah so my first scan stable second scan stable third scan my um oh my tumor met started to grow and
they're quite chunky now so um yeah again that anxiety kind of creeps in about it but I am
remaining positive I'm now on a different combination of drugs X-mestine and Everilumus so
I find out in a couple of weeks whether or not um they're working Vengus crust okay yeah we will be
keeping everything crossed for you how how just going back to the clinical trial how did it feel to
be told and actually you've had this multiple times to be told that one of those lives one of those
mario lives wasn't working for you starts to get boring after a while you're like cut me a break I
would quite like to feel safe for a little while um I will say though the being scanned every eight
weeks is intense there's no real you you have your scan it's okay and then you're like right you carry
on with your life and then you find yourself back in in the CT scanning room before you know it and
having worked in clinical trials and then being on one did do you think that affected your
perspective of it did you did it make you because you seem to be quite realistic in the way you talk
about your cancer and your treatment and your life and everything did it make you did it affect your
your experience of being on a clinical trial having known about it from the other side no it was
weird but it didn't affect anything what it did mean is that I could have a good look at the protocol
before when I was considering going on it I could have a good read and perhaps make sense of things
that they're actually not complicated if you're doing all the time I'm not making out as if I'm some
font of knowledge but you know I was able to understand what it was trying to do and have a good
look and you know make a really informed decision but an oncologist and a trials team should be able
to help anyone with that um no it didn't affect anything but yeah it felt strange being on the
other end and willing myself to be eligible for a trial after being part of a team writing
eligibility criteria and documentation it's really yeah it's bizarre how did you get into that
in the first place and was that something you were doing prior to the first diagnosis before you 26
yeah yeah no so I was working I fell into it it sounds on these cliches but I really did fall into it I
started off as a trials assistant which is bottom of the rung and went my way up to data manager to
clinical trial manager and yeah I loved it it was it was great it was really interesting I worked on the
on a famous well cancer trial called stampede prostate cancer trial um so I would be collecting
data on things like zoolodex and um doxy taxil which are drugs used in treatment for breast
cancer again which is just I find very very strange um yeah um weird one changing topics slightly you
have done some underwear modelling including after your surgery has breast cancer changed the
way you feel about your body at the beginning absolutely oh my god when I first was told I
couldn't have reconstruction because my second diagnosis was a lump on top of my reconstructed
breast and well it was two lumps and annoyingly they were quite far away from each other so I needed
this wide local excision they called it and um a massive flap of skin was removed leaving no room
for an implant and they said we'll come back to it later if we can and when we did have that
conversation later on um it was a no um and then when I had it again because I persisted it was it would be
very very difficult and involve multiple operations but yeah I found losing a breast
entirely and having to wear a prosthesis um yeah I you know I was how old was I I was 30 that's pretty
young to I mean you've not long you know you grow up and your body changes you know when your women's
bodies change and you kind of finally get to a place of acceptance and then cancer comes along and
changes changes everything up again you know oh god so I went from not only that twice had the
mastectomy got used to that and then like no that one's got to go now um yeah I found it hard I I didn't I
didn't feel as though it's quite a normal experience for someone my age but this was through
trying to come to a place of acceptance I got there I was like you know what my you know femininity isn't
defined by boobs or hair it's an energy and you know there's loads of that here I don't wear the
standard prosthetics that you get from the NHS you know I tend to wear like colorful ones and I've got a
leopard print one that I'm very fond of just found ways of making it fun and adding a bit of my
personality and yeah I continued to model at first I called up Mark Suspensers and I said you know what
I don't know if I can do this anymore I've just had my breasts removed and I thought to myself what the
hell am I doing these are bras designed for women they're pocketed to you know hold a prosthesis
what am I doing saying that I can't do this anymore I am the target woman so I'd be doing myself and
others like a service like running away from that and hiding myself um so yeah I carried on and yeah
I've got to that place where I'm just like you know what it's not ideal I don't look at it and think yay
um I don't like it but I don't actually care it's the least and it's the least of my worries nowadays um
but I've never shown my scars but I have very much shown myself I think there's real those are really
good words for someone else who might be in the situation of hating their body or thinking that
they look bad and you know not like in the way they look after surgery or even not having had surgery
is the find your personality and just do like what is what feels right for you and what feels good and
what you like the look of and yeah yeah it's very courageous to to do the modelling and share that
for other women because um you know do you know what I've been well I say I don't it doesn't feel
courageous but I remember there was these images I think it might have been in it was they were in no it
was online but it was like a newspaper website and this woman she'd had reconstruction but she just
did this the most beautiful photo shoot and you know you do sometimes get these quite I don't know
back in the day because we've been we were diagnosed a long time I the images I'd see were
quite it's not sad but you know the kind of demure and you know showcasing the scar but in a kind of sad
way this woman was owning it she was in her moment looking gorgeous and powerful and like she didn't
care and I looked at these I thought yes look at her she's beautiful and confident and happy it
doesn't have to be the end of any of those things and yeah so I took I I and I still you know because I say I
don't show my scar and I think that's for several reasons But yeah, I still, when I see others
sharing their scars and these beautiful photos, it really does, it still helps me, you know, that
sense of solidarity and you know, because we do hide, it's weird, it's strange that we can go, well
we wear these things and we can't tell who and who isn't in the same boat as us, so it's the only way
really on these images. That made me think actually, like to look at you on the tube or
wherever, no one would ever know you have secondary breast cancer. I just thought, yeah,
I'll put my seat to someone on the way here as well. So did I, actually, yeah. I was thinking about,
look at all you locks, sit you round here. You know what, I didn't say any of that, I was like, gave the
guy the seat but I was like, look, you don't, yeah. It made me think, because this is something that
has occurred to me a lot as a secondary breast cancer patient and sometimes you do need that seat
on the tube because you're exhausted or you're in pain or whatever, but people don't know that. To
look at you because you look young and you look, you look well as they say. How do you juggle that thing
of not looking outwardly like a secondary breast cancer patient but inwardly feeling all that
stuff that you feel? Do you tell people, do you introduce it or do you hide it in certain settings?
Looking well but not being well. It's an invisible illness. It's an invisible illness. So when I was
first diagnosed when I was young, I found it really confusing being told I looked well whilst having
chemotherapy. I remember going to a makeup workshop actually and the lady running it said to
me, are you one of the makeup artists? And that might sound like a lovely thing to be asked but at
the time I was like, okay then so I shouldn't, maybe I shouldn't be here. Maybe I'm not sick. Maybe I'm
not, maybe these things aren't for people like me but I was in the middle of chemotherapy with my boob
completely cut off. You know, and I was having those thoughts. Well, switching topics
slightly. Let's talk about breast cancer now's open letter to get access to the Inher2 drug on the
NHS in England. This is a drug that is relevant for women whose cancer is referred to as her2low.
Would you be able to explain to me what her2 is for anyone who isn't familiar? So we talk about breast
cancer as being, we talk about estrogen, progesterone and her2. So these are things that a
cancer can express. Lots of, if you're hormone positive, you're expressing either of the
hormones and if you are her2 positive, your cancer is expressing her2 protein. This is a post
recording note. Hannah means that breast cancers can contain receptors that may react to the
hormones, estrogen and progesterone and the protein called her2. For more information on
receptors in breast cancers, visit the breast cancer now website or go to the link in the show
notes. Now back to Hannah. Before, if you were her2 low, you'd be class as her2 negative. You'd be
treated the same as patients who are her2 negative. But in her2 has found a way of targeting
cancer for people who are her2 low. So it's really exciting. It's almost like a new category. It's
been described as game changing. So it's basically where we talk about her2. There's a
scale and you can, if you're high on that scale, then you're, you would have her septin or her2
treatment. But if you're very low on that scale now, there is a drug called in her2, which would
help you. Yes. Yes. And you're in that category. Yes. A lot of us. A lot of us. Yeah. And what would
this drug and her2 mean to you? Well, do you know what might, so going back to when I was diagnosed,
June 2022, that is when the trial that shared the results on in her2, in her2, in her2, in her2, in
her2 low patients was presented at ASCO, which is a big date in the clinical trials calendar. So I'd
heard that this drug had got a standing ovation. And I said to my oncologist at the appointment
where I was diagnosed, I said, oh, yeah, in her2, we were calling it TDXD then I was, I said, do you think
that will become available soon? And she said, yeah, yeah, it should do, it should do. Years
later, what is happening? It's not available still. It's been approved, I think in over 30
countries, including Scotland. As I said, that was quite recent. But, yeah, it got a standing
ovation because the results were that impressive. You know, it significantly improves
outcomes. And that's both time to progression and overall survival. That's like living longer
compared to standard chemotherapy. So it's very promising. It's really exciting, but it's less
exciting because it's not on the table. It's not approved at the moment. Why do you think it is not
being approved in England? I think it's not been approved yet because of money. And that's not
saying someone's holding back. I think they're negotiating a deal at the moment. That's NHS
England and the drug company. But I think it could possibly be deeper than that. I mean, we talk about
NHS capacity. You know, can they afford the extra chair time and appointments? It's quite a scary
situation when you start thinking about you really think about why it's not been approved yet.
But when you have a drug that is this a treatment, that's this impressive in terms of its results and
its clinical benefit, you know, it would. It would be the opposite of the advancement of cancer care
and outcomes if we didn't approve it. So I do think it will be approved. Yeah, I just think there's a
bit of politics and bargaining in between times. But unfortunately, during that time, there's
people desperately waiting. And yeah, that that scares me because if my next scan. Is isn't good
news. If in her to was on the table, that would be what I have next. But if it's not, I'd be having
something that's been proven to be less effective. Your friend Nellie Swalla went on
Loose Women to speak about this amazing campaign and how if you simply lived in Scotland, you could
have access to this amazing drug. How does it make you feel that if you lived in a different postcode,
you could potentially see this huge difference to your life in your disease regression after that
next scan? It's not good, is it? No. But then to be fair, there is a postcode lottery in terms of
breast cancer care for loads of different reasons. Like I know people who struggle to get
scans on time and scan results on time. So I've been quite lucky until now. Yeah, it's not good. I think
it's just the nature of things. But yeah, it's not fair. We all deserve the same access to drugs up and
down the country. Yeah, I was I had people offering me rooms in Scotland. I don't know if that's
illegal, but I will. I will do it. Well, that would certainly run through my head would be, well, I'll
move to Scotland. Get myself up to the beat. So why not? I mean, if that was possible, I wouldn't blame
someone for having that line of thought. I mean, it's life. Our lives are on the line. Why would you
not think about it? It's just a shame that it would take that. Yeah. And it also is not as easy as that.
Probably not. No, they'd be like, what are you doing here? That's not your address. In the open
letter to NICE, which is the National Institute for Health and Care Excellence and as well as NHS
England and the drug company, D'Aitchisankyo, which I probably haven't pronounced correctly.
You and a group of other women with secondary breast cancer talk about how you are mums,
daughters, friends, sisters and grandmothers. What do you hope will be the impact of showing the
real human face of patients like you who are denied the drug in her to that they'll get a move on and sign
a deal. We're waiting. Help us out here. Do the right thing. Do what Scotland have already done.
That's what I hope. I hope that they do the right thing. They repeat. We are we're not just numbers.
We are people with lives that we are so desperate to continue living. I mean, as Lila's mum, my
daughter is called Lila. I don't want to miss any like one more kiss hug first. First anything like
sports day. Marvel film, whatever. I don't want to miss one more of those than I need to. And if this
drug can bring me, well, it's been, you know, has the potential to bring about extra life, then,
yeah, I want that for me. And I want it for all the other women, too. And what what responses have
have you had from that letter? Apparently they have they have made some phone calls between
themselves. And that's the last I've heard of it. They've been asked for comments and stuff, but
nothing so far. There was we did wonder if something had been put in place and just haven't
been, you know, announced yet, because there might be an embargo in place. And that's why
they've gone quiet. That's the hope that's being positive. So, yes, we haven't heard much since
then, but we will keep pushing. The final decision is so important. We're going to get to come about
in, I think, six weeks time. OK, we'll just keep everything crossed. Yeah. A few weeks after that
conversation with Hannah, we caught up with her again via phone for some updates on the campaign.
So, Hannah, we are meeting with you again a few weeks after we recorded that episode. Because,
unfortunately, you did get the results from your latest scan, which weren't brilliant. And I'll
let you fill the listeners in on that. And at the same time, the same week, we also heard that the
Inher2Drug has been rejected in England. So could you just talk to us about, give us a bit more detail
on both those things and the impact that that is having on you? So, yeah, I think what it is, but
every time with a scan, I go in really hopeful and it's only been, I don't even just started it. So I
thought, odds on, you get a little bit of time with this drug working. But no, it wasn't working. So,
Everolimus and X-Mestane, after three months, my scan showed that my cancer was still growing
despite taking it. And for me, it's a really quite a scary scan result because my lung met is actually
stable, which is great. But my liver, on the other hand, is not stable. It is really starting to kick
off there. I've now got four tumors, which are what? The last I heard, I had two and one small one.
They're all quite sizable now. I've got four and loads of little spots showing up on the scan. So
things feel a bit hairy at the moment. And I knew going into this scan that had things gone to pot in
terms of the cancer growing, I would be looking at inheriting next. So to have the double whammy that
no, inheriting isn't going to be on the table. And yes, your cancer has grown. Yeah, real sucker
punch and I'm smiling, but I don't feel. Yeah, it's been a very difficult couple of weeks. It's been a
whirlwind. It's been it's been lots of heartache, lots of confusion. Yeah, it isn't what I wanted.
But this is the reality, I guess, of stage four cancer. It's completely unpredictable. I won't
be the only person feeling this right now. But I'm just I am I am quite beyond frustrated. I'd say
angry, but I'm too tired to be angry. Or maybe I am. I'm just really, yeah, I'm frustrated that it had
to is off the table. And that's really niggling me because it doesn't feel right and it's not sitting
well. Yeah. Hannah, I'm so sorry that you've had this double devastating news. I, you know, being a
fellow stage four patient, I can. Understand that stick to the stomach feeling that you must have had
with both of those bits of news. And it is just I don't want to swear on this podcast, but it's just I
know it's so devastating for you. And you said that you're not the only person feeling this, but you
are actually the only person while the main person who's become the face of a national campaign,
which thanks to breast cancer now. Thanks to your amazing friend, Nadia Swarla. You have managed to
speak with politicians. You have managed to go on loose women, Lorraine, various live TV shows.
Could you just tell us what you've been doing in the last couple of weeks to try and push this and her to
drug through and get it available for you and many, many others? So you mentioned my beautiful,
incredible friend, Nadia there. No questions asked. No hesitation has just really, I feel
almost like she's taken it on when in a few moments where I've not been able to because I've been
sitting back thinking, God, processing this news and she's like, right, what can we do? My friend
Helen with Titty Gritty has been instrumental in a lot of what's been going on as well. And we've had
our lovely cats on board too, who I love to piece with both cats and Helen, our breast cancer
survivors too. Yeah, we've just they've been pitching left, right and centre. I'm really very
lucky that we've got them because I don't think some of these things would have come about. So that
isn't lost on me. And you mentioned me being the face. I'm such an awkward face of anything like
this reluctant face. But if it's landing, if me being vulnerable, which I'm actually not really
that comfortable with doing and I'm glad that I'm started really sharing that side of the
unfiltered side of stage for breast cancer and the realities, because I think it's landing. It's
we're all human at the end of the day. And if it's pricking up the ears of people who have the power to
make these decisions, then I will keep on going and we will keep talking to the press and we will keep
shouting about it. And I know I'm not the only one. You know, I'm not the only one. You have the
brilliant campaign. Those of us are involved with it. There are people sharing the petition far, far
and wide. It's I don't know how many signatures got there. Yeah, it must be. Last time I looked, it was
about 150,000 signatures. Yeah, this is the breast cancer now petition, which we'll put a link
to in the show notes. Yeah. And it just shows that it is connecting with people, not just in the eye of
the storm, but people outside of it, seeing this isn't fair. It's not right that 45 countries
across the world have this approved as standard of care. We deserve the same quality of standard of
care. We deserve the extra time, the hope of extra time that this drug brings about. So, yeah, we're
just doing our part, whatever we can to to you have to keep up that pressure. And we did speak to Craig,
Tracey and P, who is the chair of the PPG. I was mouthful for me, the all party parliamentary
group for breast cancer, who is aware of the issue. I know he actually works with breast cancer now, a
fair bit across these issues. And we met with the leader of the House of Commons, Penny Mordant, who
seemed really engaged with the issue. It was brought up. So hopefully brought up in
Parliament. Hopefully that means that, you know, we're moving forward in the right direction to
perhaps get those parties, the parties being NHS England, nice to drug companies around the table
and just getting a deal done because no time is of the essence. And the truth is probably too late for
me this time round. But I'm not going to stop because it's not fair. You said that you are a
reluctant face of this campaign. Actually, you've spoken brilliantly publicly about it and
it's so important that you have. There's an image that I think breast cancer now are using of you and
your little girl, Lila, which has been served to me on when I've been on social media. Which, you know,
I understand from speaking to you on this podcast, how important it is for you to spend more time with
your little girl. Do you you said it might be too late for you in terms of inheriting? I don't
necessarily believe that. I still have hope that this is going to change. And this is a very fast
moving situation at the moment. And, you know, by the time this podcast come out, it may be that more
changes have happened. But if you're able to speak about it, is there another drug, is there another
plan that your oncologist is talking about at the moment to help you? So if it does get approved,
who's to say that my next line of treatment, if it fails, maybe that's when inheriting might come
in. So there's that. It's just this time. But I don't actually have a plan. I have a conversation
with my oncologist later today. I'm actually going in tomorrow. So I think maybe today is going
to be the prepper, you know, giving me an idea of the putting the feelers out. And then tomorrow I
should have something in place. And it's only been two weeks. I know it can feel like a long time, can't
it, between treatments. But, you know, treat that that's the flush out of my current treatment would
be anyway. I've not lost any time. I need to. This is what I tell myself so that I don't drive myself wild
thinking I'm off treatment and it's growing. Nothing will have happened in that time or nothing
significant. But yeah, I don't know. It could be could be looking at trials. It could be looking at
chemo. I do more standard because there are plenty of told there are plenty of other chemo's. It's
just for me really upsetting that we've got something that's better out there. And I can't
have it now while I'm most well. Yeah. Yeah. I have no doubt that everyone listening to this podcast
will want to do anything they can to help just as your friends, Nadia and your and your other
friends have have been doing. My little girl. And I love them so much. Obviously they're like the
aunties and big sisters I've never had. It had never had. They've been so on board and now Nadia
has been collaborating with breast cancer now and it's just it's just been brilliant to have someone
with that platform, you know, stand with us. And I know she'd she she'd say, shut up. Of course
they'll do it. But no, I mean, and also just, you know, the fact that you know Nadia who is a
celebrity who has this massive platform who is on Loose Women, which is an incredibly powerful show
that's been going for over 20 years, you know, not every celebrity would use their celebrity and
their platform to do something like this. So the fact that they have done this is amazing. And this
campaign wouldn't necessarily have gone so far, wouldn't necessarily have, you wouldn't
necessarily be able to speak to those politicians without that support. So you as the patient and the
face representing all these other people around the around England and elsewhere, I'm sure,
teaming up with Nadia who has the platform and then teaming up with breast cancer now, which has this
additional platform and all the knowledge is an incredibly powerful thing. So there is a lot, a
lot, a lot of hope in that for anyone listening who wants to help, what should be their course of
action now? Should they be writing to their MPs, signing the breast cancer now petition? What can
they do? Exactly those, I think writing to your MP. But I'd also say sign the petition, sign and share
the petition so that we can show those involved how many people are really behind this and want to see
that change made. It doesn't sound like a lot, but it really is. More signatures, the better. We will
put the link to breast cancer now's petition in the show notes and it's incredibly quick and easy to
sign. But in terms of writing to your MP, a lot of people won't have done that before. How do you
write to your MP? So I, how I wrote to my MP was I went online, I found the constituents website and I
just put subject line saying urgent breast cancer, breast cancer drug approval in her too.
And I just laid it out and I said a drug, again, a drug described as game changing, called in her too has
been rejected for use on the NHS. I had some links to articles and I said that I'd really love to have a
conversation with you about this and have your support. There may well be some suggestions out
there, Laura, about what exactly MPs can do, but they can probably be asked to approach Craig Tracy
again, who's that chair of the breast cancer committee. I just wanted to ask you that because I
think a lot of people, you know, haven't haven't just never written to their MP. So yeah, it's grab
attention with that, with grab attention with the subject line. The more people who get involved in
this campaign, which ever way they can get involved, whether it's writing to the MP, whether
it's signing the petition or also sharing that petition and particularly if you are a person
hearing this podcast, who has a big platform on social media, whether that's 1000 followers, 500
followers, or you've got hundreds of thousands of followers, please share the petition, share this
podcast episode, share Hannah's page, share Nadia's page. It all helps and it will all go
towards that thing, which we have not given up hope for Hannah for you to get in her to and for thousands
of other women to get in her to. Absolutely. And that's it. That's the real thing. It's not just, I
do, it is absolutely not just for me because I probably walk away now knowing that I'm going to
have a different treatment plan. This, I don't like injustice and I'm going to keep going because
we all deserve the best possible treatments to be available to us and not just for us, but the people
down the line who I will receive a heart breaking diagnosis at some point. You need to make sure that
the best possible treatments are available for them too. Hannah, thank you so much for coming to
meet with us again at this incredibly difficult time for you. We appreciate everything that
you're doing and we will do everything that we can to help get in her to for all the people who need it.
So lovely. Thank you so much for having me. Thank you. Do you feel that there is an imbalance between
the treatment of secondary breast cancer patients and primary patients in terms of the
drugs that are developed, the time that things take, the treatment, the attention and how
seriously we are taken as patients? I think in terms of the drugs that are available in research,
I think it's really difficult to separate at the point of drug development and clinical trials,
separate what is for the good of primary patients and secondary patients. I think often in breast
cancer trials, things will be tested on metastatic patients first. So yeah, I don't think
it's quite clear cut that we can't say only five, 10% of whatever research or funding goes towards
secondary cancer because it's all interlinked. There might be some instances of it being quite
clear as to what's being focused on, but it's not as straightforward. In terms of being taken
seriously, I think I was quite lucky. Maybe it's because I never got out of the hospital system with
my constant diagnoses. I was taken seriously whenever I rocked up and said I've got a pain in my
underarm and I was scanned, but I know that isn't the case for everyone. I know that some people do
have to push further, but again, does that come down to awareness of the symptoms of secondary
breast cancer in both the patient population and GPs? Yeah, I don't know. I don't know. I think that,
yeah, I definitely think there is an awareness exercise that needs to be done and certainly, I
know breast cancer now is working on that as are other charities and bodies, but in terms of
educating both healthcare professionals and people who have had cancer of the signs and
symptoms of secondary breast cancer because, and it's difficult because there are so many things
that you can feel like fatigue and breathlessness or whatever that actually could be from the cancer
treatment that you've had or from the menopause or symptoms or so many other things, but I think it's
just really important for people who have had cancer ever to be mindful of any changes that
happen in their body. Absolutely. Anything new that persists and can't be explained away, get it
checked out for sure. I always say that it's good to continue to be breast and body aware even after a
primary diagnosis. Absolutely. If people are interested to follow you or find out more about
your campaigning and your work, where's the best place to find you? They can follow me on Instagram
at Real House of Hannah, really, really random name, but yeah, I will admit that I'm not someone
who posts very frequently because I am very much trying to be in the moment with my family, but yeah,
you can check in there and I do answer DMs if there's any questions, particularly about trials and
other things. So that's where you'll find me. That's okay. We don't have to apologize about
being on and off sporadic social media users. I think it should be the new way. Something in it,
right? Speaking of enjoying life, you are a diehard Spice Girls fan. Oh my God, yes. Who is your
favorite Spice Girl? Jerry. Who's yours? Oh, sporty. I was always a sporty. I was always sporty
too, but I always wanted to be a ginger spy. She was like the, you know, the cool one, the cheeky one,
the goby. I was none of those things. So it's like kind of like looking up to someone wanting to be a
bit like that, but yeah, no, I absolutely adored the Spice Girls. Yeah. The Spice Girls became
famous for girl power, which I think is something you have in spades. Oh, thank you. So I'm going to
reword the question that we ask at the end of this podcast to everyone. If you had the power to change
one element of breast cancer diagnosis and treatment within the next few years, what would it
be? Oh, that's a big one. If I had the power to change one element of it. So just one thing, can I change
its existence? Sure. Yeah, there. Absolutely. That's what the Spice Girls would do. It doesn't
exist. There we are. It's gone. Yeah, I think that might be the best answer we've had today. Let's go
straight in while we're missing this around. Like let's cut the head of the snake. It no longer
exists. We'll get a lot in her too. Just get rid of cancer. Yeah, that's a great one. Hannah, thank
you so much for joining us on the Breast Cancer Now podcast. Thank you for having me. Thank you. If you
would like to help with the urgent campaign to get in her to available in England for Hannah and for
other patients around the country, please visit the link in our show notes to write to your MP, to
sign the Breast Cancer Now petition and to share that petition far and wide. This is an urgent
campaign and we need your help. Thank you.