Fuck.
That means I might be stage three. Cancer.
SHE EXHALES
My name is Hannah Fry.
This equation encapsulates all of
the fundamental properties of the subatomic world.
I'm a professor of mathematics,
and I've spent my life using numbers to try
and understand the world around me.
An airport city, and building it and running it
has tested us to our absolute limits.
In January last year, I was diagnosed with cervical cancer.
I started filming myself as a way to cope with what's happening to me.
Oh, God, oh, my God, it feels like my guts are going to come out.
Again, this is around your knee.
With my doctors, I've had to make some hard decisions about my care,
and I'm not sure we've always got them right.
They are often very aggressive with this sort of tumour,
and they often take out a lot of nodes.
Welcome to my cancer research cave.
I've become obsessed with the statistics behind cancer...
My books.
..and it's made me question all my assumptions about this disease.
Now I want to find out how doctors
and patients feel about their treatments.
Are we making the right choices in how we deal with cancer?
For 95 of those women,
chemotherapy made no difference to what happened to their cancer?
Yep.
Is searching for cancer always a good idea?
This is a classic graph showing overdiagnosis,
because what you're doing is you're diagnosing more
and more and more thyroid cancer,
but you're not making any difference to death rates.
Have we become so afraid of this disease that we'll do anything
to fight it, no matter the cost?
As long as there's a percentage, there's hope.
It means I might be that 1% that it works for.
And what will I do when faced with my own odds?
I think, whatever happens now,
this has fundamentally changed me, like.
Five! OK, do you want to give that to...
I live in South London with my husband, Phil,
and our two daughters.
Come on, sausage.
They are two and four.
They are absolutely brilliant,
and ridiculously hard work in equal measure.
Phil, my husband, he's a stay-at-home dad.
He takes care of the kids,
he's their primary carer. I like
to describe it that we've got a very traditional 1950s relationship,
just everything's switched around the other way.
There's no way that I would be able
to do my job unless I had that home support.
This particular algorithm, it works a lot like
predictive text does on your phone.
I think the thing about looking at things through numbers is that it
gives you a chance to see yourself
and to see the world from a completely different perspective.
If you imagine you have a corridor
with lots of people moving in opposite directions,
people naturally form these lanes in pedestrian traffic.
I like to imagine it as though you've got these two worlds that are
running in parallel to one another.
So, on the one hand, you've got kind of like the real world,
and then running alongside it, I think it's almost like you have
a mathematical version of that same world.
So, this is the one where you have all of the numbers
and all of the data and all of the equations.
It's a way that you can zoom out and see things as they really are,
rather than how you perceive them to be.
In January 2021, my life changed.
I had a call from my GP telling me
they detected abnormalities on my smear test,
an appointment I'd put off for six months.
So, this one that we're doing here
is for your blood group and type.
I had a number of follow-up
investigations before they could give me the full picture.
He just told me the facts,
which were that they'd found a tumour
and it was about the size of a gobstopper,
and it was all contained within the cervix.
In the moment, you don't really realise what's happening,
and then it's only after that you're reeling from everything.
"What the hell just happened?"
Your hair's really clean.
Did you wash it?
Yeah, all by myself.
I did it myself.
There's no guarantee that this is all going to be OK.
And I've had a pretty good life.
Like, it's one thing for yourself to be like,
"OK, if I only live to 36 or 37, OK, you know, whatever."
Like...
Look at all of the experiences I had,
and that look at all of the brilliant things that I got
to do, and look at all the friends I got to make.
I can't quite deal with the idea of my daughters not having me.
That's the really hard bit, I think.
Hannah's human, so she worries, but at the same time,
she thrives on information. You know,
she's a mathematician and scientist and she,
you know, data is her is, you know,
the thing she lives by. That's who she is.
So, when something like this happens,
she's like, "I need to know everything.
"I don't want to leave any stone unturned."
Like an instinctive reaction,
to just want to read about it.
In the last 40 years,
cancer survival rates have doubled in the UK.
50% of people diagnosed now survive at least ten years,
and that's due to an ever more sophisticated raft
of surgeries and treatments.
The first intervention recommended for me is surgery,
what they call a radical hysterectomy.
They don't just take out the uterus,
they don't just take out the cervix.
They take out the top section of the vagina,
they take out the fallopian tubes,
they take out all the tissue that surrounds it,
so that, in the end, there's nothing between my bladder
and my bowels. It's completely empty.
And all of the pelvic lymph nodes.
I wanted to talk to someone who's been in this position before.
The first person I thought of was my friend David Spiegelhalter.
He's had prostate cancer,
and he's spent a lifetime working in medical statistics.
I'm just like, I don't know,
trying to tackle it in the same way that I do with everything.
I've got, like, this massive stack of books next
to me of things that I'm trying to get through.
Do you think... I don't know. Did the numbers help you?
I think, like everyone else,
it came as a huge emotional hit.
You know, I'm not immune to any of those kind of feelings,
but I suppose I did try to take
a kind of mathematical view to it
and start doing some research on what
the options might be and what the outcomes might be.
And, you know, one aspect of it, of course,
is the feeling that, um, "Oh, you know, I've got cancer,
"let's get it out, you know, just cut it out."
Now I would say to people to
try to keep that under control, just keep calm,
keep calm. That may not be the best policy.
You have to think that these treatments have harms attached
to them, both short-term and long-term,
and the benefits just may not be worth it.
Sometimes you should, what? Fight the urge to want to get rid of it?
I'm talking about the mild case of the disease.
Many more people will be living with cancer in the future.
Is that what happened in your case, then?
Was not having surgery an option? No,
I was quite strongly recommended to have surgery due to
the particular severity of my prostate cancer.
And, so far, I'm clear five years out,
so we'll see, you know...
I... In that sense, I'm not going to complain.
Like David's, my doctors have made it clear that
surgery is the only option for me.
The hysterectomy will mean I can't have another baby,
which is something I'd hoped for,
but I decided it was a price I was willing to pay.
I'm, like, only at the beginning. Hopefully,
this is just a little blip,
a moment of reset
and, kind of, a moment of pause.
The cancer unit or normal?
Yes, please, the cancer unit, yeah, thank you.
My home for the next...week.
What procedure are you having today?
A radical hysterectomy.
Well, this, is quite the thing.
The surgeons are going to remove my pelvic lymph nodes.
They're worried there might be cancer in them,
but they're not sure.
The biggest question
and the most difficult uncertainty is whether or not
the cancer had got into the lymph nodes.
If the cancer hadn't got into the lymph nodes,
then it was stage one cancer. Basically,
your chances of survival are really good.
About 95%. The surgery works.
You're in a really, really good position.
But if it had got into just one lymph node,
you jump from stage one cancer straight to stage three cancer.
It becomes very, very serious.
Hmm.
So the consultant just came in.
And I asked him if he saw anything in the lymph nodes.
And he said that there was four on one side
that were a bit enlarged.
And one on the other side.
Not great news, though, is it?
Four or five of them were enlarged,
and that could be just
your body's fighting infection,
or they could be enlarged because they're cancerous.
I'd read all of this literature before going in
and I knew that if it was in one lymph node,
it was 60% chance of survival,
two lymph nodes it dropped below 50%.
And here he was saying four or five
could potentially be cancerous.
I mean...
Well, then, you're a goner, aren't you, really?
Mummy! Aw!
After six days, I'm home,
but I have to wait for a follow-up appointment
to find out if there's cancer in my lymph nodes.
In the UK, doctors often recommend further treatment after surgery,
called adjuvant therapy.
It's often chemotherapy or radiotherapy.
It's a bit like an insurance policy.
Although the cancer has been removed,
there's a chance it might come back.
The treatment aims to reduce that risk.
I want to understand how doctors
decide which patients should have these extra treatments,
especially as they come with side-effects.
Judy King is a medical oncologist in North London.
So we have a range of people in clinic,
but the number of the people that we'll be seeing are having
what's called adjuvant chemotherapy. So they've had their surgery,
they may have had scans. And, as far as we can see,
there is no cancer. However, we know that, untreated,
a number of those patients will have what we call
micro-metastatic disease,
so there will be tiny cells that will have floated off
and ended up in the wrong place, which,
if left unchecked, could come back and cause a cancer recurrence.
And so those are the things that we're trying to treat.
Where do you set that boundary of, "It's worth it for you,
"and it's not worth it for you"? So, in breast cancer,
we would say that what we're looking at is what is,
"What is the chance of you being cancer-free ten years from now?"
And if chemotherapy improves your chance
of being alive by about 5% or more,
then chemotherapy is something that we would usually discuss
with a patient. Let me make sure I understand that, though,
because another way to say the same thing is that,
if you've got 100 women,
all of them have chemo,
and chemo will save the lives of five of them,
that's the threshold?
Yes, so... In a... This would be a relatively low-risk case.
Let's say you have 100 women. 80 of them,
if they do nothing at this point,
would live ten years very happily
with their cancer not coming back.
And maybe 15 of them, the cancer comes back.
Chemotherapy will be the thing that means
the cancer doesn't come back for five out of the 15.
So you have treated 100 women,
and five women have been benefited.
That point is worth repeating. In 100 women,
five of them are going to die of other causes -
perhaps heart attacks or car crashes,
that kind of thing.
Of all of the women that are left,
80 of them, the cancer is not going to come back.
It doesn't matter whether they have chemotherapy or not,
they are already cured.
That leaves 15 women where the cancer is going to return.
However, for five of these women,
if they have chemotherapy now,
they can prevent the cancer from coming back.
But when you start off,
you have no idea who these five women are,
and so every single one of these women
has to go through chemotherapy just to save five lives.
And for everybody else,
chemotherapy made no difference whatsoever.
They had all of the side-effects - hair loss,
vomiting, giving up work,
not being able to see people -
all of that for 95 women, and actually,
it made no difference?
So, yes, that would be the case,
and these are the difficult conversations because
a patient, they could also be thinking, you know,
"Is it really worth it?"
But then I guess on the flip side of that,
you don't know whether you're in the 95 or you're in the five.
And maybe, actually, chemo will be
the thing that saves your life. Exactly.
When all is said and done,
the majority of people would put quite a lot of value
on the concept of, "I don't want this cancer to come back." Mm.
Just because the alternative is so horrible to imagine.
Judy has invited me to observe one of her appointments.
Anne, do you want to come down? Thank you.
Anne is a 67-year-old swimming coach from Barnet.
Hello, come in, my name is Judy King. I am one of the consultants.
She had surgery to remove
a two-centimetre breast tumour, three weeks ago.
..which is going to wreak havoc with scheduling...
I'm going to talk about what the chemo is,
and why we would recommend it.
And then you can have a think about whether that's something that you
want to do or not. OK. So if we take,
sort of, women in your situation
with this kind of cancer, we're looking at,
"What is the chance of people being alive and well,
"cancer-free ten years down the line?"
Yes. So, this is the chance that everything is fine.
There's a pretty good chance, cancer has been cut out, job done. Mm-hm.
This, here, is the risk of the cancer coming back.
Yeah? So, my job is to reduce that risk.
Right. In terms of absolute numbers,
we reduce the chance of it coming back again by about 4%.
So, the thing is that I don't know if you're one
of these people over here...
No. ..who the surgery is enough,
and I don't know if you're one of these people over here.
So, what I have to say is that I recommend that everybody
has the tablets and the chemo just to reduce
the risk as much as possible. Just to get to that, yeah. So, I'm
going to talk a little bit about how the chemo works
and the side-effects, and then I think we should have
a talk about whether that's something that you want to do. OK.
Is that all right? Yeah.
So, side-effects, common things - feeling tired,
people do feel pretty washed out for a couple of days. Mm-hm.
Chemotherapy can drop your immune system.
That means that, if you get a fever or if you get
an infection, you can't...
Your body can't fight it properly. If you get a fever,
you must phone the emergency numbers. If you can't get through,
you have to go to A&E. All right.
It does affect your hair.
All right? That's probably my...
Out of everything, it's the hair loss that's going to be...
It's actually the thing that most people...
Because I've got such fine hair anyway, so...
Always worth having a scarf or a wig or what have you. Yeah.
Other things, feeling sick or being sick,
acidy, bowels can go either way - can be diarrhoea,
can be constipation.
Aches and pains, those kinds of things.
What are you thinking?
I'm going for it. You're going for it.
Yeah. All right, we're going for it.
Do you want to sign consent now, or do you want some time
to think it over? No, no, I've
made up my mind, that's what I'm going to do. Okey-doke.
How are you feeling?
OK, OK. It's a lot to take in
in one, sort of, short space of time.
Was there a point where you thought,
"Oh, maybe I won't?"
It's always been the case of,
"There's a possibility you might have to have chemo."
So, I think that's been a lead into it, with it.
It's not come as a big shock to say,
"Yeah, you've got to do it."
I think if I don't go along those lines, you know, my...
The chances are it's going to return,
and I don't want that.
I don't know, it's just all so much. It's a lot, isn't it?
It is a lot. It's one of those things, isn't it?
I know. It still sucks, though.
Yeah. It still sucks. ANNE LAUGHS
When I was talking to her outside,
she was sort of saying, "If I don't have the chemo,
"it's overwhelmingly likely that the cancer will come back."
And I didn't, sort of, correct her.
But I think that, like, the difference that the chemo makes,
even if it's not exactly 4%... It's not as big as she thinks.
No, exactly.
It sort of sits slightly more uncomfortably
with you than it does with me.
I'll tell you why.
I've seen the cancers come back. Of course.
And I know that this is a relatively gentle chemo
and I can get her through it.
And I know if that was somebody that I cared about,
I would 100% tell them to have it.
I spend all my life trying
to explain mathematical concepts to people.
And I know how hard it is, right?
And I know how difficult this concept is.
And I'm not saying, even for
a moment, that it would change the path that she's on,
change the decision that she's made.
But I'm just thinking about the patients who are taking chemo
because they think it's their only chance of survival
without realising, actually, it's making a very small difference.
So, the thing is,
I don't think philosophically people can really deal
with that level of complex thinking and decision-making.
I think people need confidence in their decisions,
and sometimes that requires a more simplistic answer.
I'm feeling conflicted.
I'm uneasy that patients might not see how small the benefits are,
but I know what it's like to be frightened,
and just want a doctor to take charge.
Despite my swollen lymph nodes,
I'm still hoping to avoid chemotherapy,
but my mum is urging a more realistic approach.
Mum had cancer when I was in school.
This is why she doesn't give a shit.
SHE LAUGHS
Our family, though, so Mum's got nine brothers and sisters -
how many of them have not had cancer?
THEY LAUGH
You know like how some families play rugby?
Ours gets cancer.
I was very worried about her when I first heard the news.
Yeah. When I first told you, though,
I told it to you in a very positive way. Yes, yeah.
What, and you were still worried about it?
Well, I looked it up online. What did you see when you looked it up?
Well, if it's a hysterectomy and if it's cancer,
then it's chemo. In this country, in the western world,
they decide to do it.
I don't know of anyone who's got away without the chemo
or the radio. You just do your best to fight it.
I've got a chance of it not being, though. Yeah.
So, just wait and see.
Yeah, well done.
They're full of lots of chemicals, you see. What are chemicals?
"What are chemicals?" That's an excellent question,
and probably one for your mum to answer, I'd say, rather than me.
If Hannah has chemotherapy,
that's going to have, you know,
dramatic implications on a number of levels,
from pragmatic levels to emotional levels.
I mean, the kids seeing her going through that's
going to be tough. Me seeing her go through that is going to be tough.
Hannah going through that is going to be tough. What shall we play?
All that really matters is the emotional stability,
which is the most important thing.
I think the thing about cancer, there's this point,
there's this fork in the road,
and it does come down to something as simple
as a few cancer cells in the wrong place.
Where, on one path, we have
a very sick person at home, potentially dying,
and everything changes.
And then the other fork, which is...
I get better, and we get to go on with our lives.
I'm still thinking about my conversations with Judy and Anne,
and how the numbers change as cancer progresses.
I want to understand why patients decide to keep going with treatment,
when the odds are stacked against them.
Online, I came across Nina,
a 39-year-old fashion designer
and mum from South London.
I can't wait to go into chemo tomorrow,
having one more session,
one more cycle.
She's got a particularly aggressive form of breast cancer
that's now considered terminal.
Women with her type and stage of cancer
have only a 12% chance of living five years.
Hi, how are you doing?
Nice to meet you. Lovely to meet you, thank you.
Yeah, well, let's hug!
Her chemo is often exhausting,
and her life's been taken over by medications.
Wow, you weren't joking. Ha, no,
there's... There's quite a lot.
This is for...? This is every day?
So much medication, isn't it?
After chemo,
I take these that help me with anti-sickness. Yep.
Now that I'm on my third cycle,
I'm having to take the pills more often
because I just feel so bad.
Yeah, so blood thinners,
I have to take these. That's an injection?
Yeah, and I have to inject myself every day,
and every day it gets harder.
Do you have to psyche yourself up?
Yeah. Yeah. I feel like my stomach is getting more sensitive
because I've had so many months of it.
And some days I just want to push it in,
but it hurts me. Yeah.
Oh, gosh.
And it's a big reminder that I have cancer.
It's a big reminder, on my good days, that
things are not normal.
I mean, all of this is just such a heavy price that you have to pay.
Yeah, it feels like it. It's the vomiting,
it's the infections,
it's the bleeding gums, it's the nose bleeds.
I've made a choice to have chemo, and, you know,
you can keep throwing anything at me.
As long as I know that I have a percentage in there
of it working, I will do it. You know,
I've committed myself to it.
Do you sort of feel in a way like
you're paying with this three months now and in return,
hopefully, you get a couple of years?
Yeah. It's like a price, a trade.
Yes, it feels like a trade.
Yes, there's just no guarantee.
You have to have the treatment
and hope for the best.
A lot of it is hope, and I'm hopeful.
Do those stories of real miracles where people had stage four cancer,
things look really bad,
and then, somehow or other, their tumours shrank
and they managed to go on and live these very long,
healthy lives, do they play on your mind, those stories?
All the time. Do they?
Yeah, I think I'm going to be one of those stories.
I really believe.
And how do you feel about... thinking about the end? Are you...
Do you think that you've accepted what's going on?
Yes, and no. SHE CHUCKLES
But, yeah, right now,
my heart does not see death.
My heart does not see the end.
Your heart sees those stories.
My heart sees those stories of hope
and I know I'm going to live,
and I'm not going to die.
There's no reason why I can't be one of those people.
So...
Good luck. Thank you.
One thing she said really stood out to me,
where she said that she would have chemo even if it was 1%,
even if there was a 1% chance that chemo would buy her more time,
she would take it.
And that seems pretty incredible to me.
Are you risking, sacrificing, really more than you should?
Rather than just enjoying what you have left?
I think that's what the danger is.
And I don't think she's there yet but I think that there is...
I don't always think that hope is a good thing.
I think there are some times where it can be a bit counterproductive.
Because it's unrealistic? Yeah.
Yeah, or because... Because...
Because you're so focused on
the best possible thing that could happen
that you fail to prepare for what really is happening.
In fact, patients will often go through treatment with
a very low chance of success.
One study showed that over a third of terminal cancer patients
would undergo treatment even if there was only
a 0.1% chance it would prolong their life.
But the doctors who treat them, if they were
to have cancer themselves,
say they would refuse treatment unless it had
at least a 25% chance of working.
Nina is clearly not alone in her dedication to hope,
but I can't help but wonder
what kind of information gap we've created,
where the very people offering a treatment
wouldn't want it for themselves.
Big day.
Got about 20 minutes.
SIGHS
Then I'm getting in the car to go to the hospital to find out...
..what the situation is, basically,
to find out what they found in the lymph nodes,
to find out...
..whether I need to have chemo or...
..whether the surgery did the job of getting everything out.
You just don't have any control or any choice
over what's going to happen.
So how are you, Hannah?
Yeah, all right. Good.
So, you're obviously waiting to hear what the results are.
We're putting you through misery. I know.
I'll tell you in the car.
SHE LAUGHS WITH RELIEF
Yes?
HE LAUGHS Gone?
Oh, my God, really?
Oh, fucking brilliant!
Oh, baby!
Oh, my God.
Oh, God.
Oh, God. Oh, my God.
That's amazing. So go on. Tell me, tell me. Tell me.
It's done. Absolutely done? It's done.
Oh, God.
Jesus Christ.
Oh, thank God.
But they said that all the lymph nodes came back negative.
And he was like, "Can't guarantee."
You know, "This isn't, like, 100% like, you know, this isn't, like,
"a guarantee that it's never come back again, but, like..."
Bloody hell.
Great.
Getting drunk tonight. Fuck, yeah.
Woo!
CHILDREN PLAYING
Pleased with you.
Well done, well done.
It's the best possible news.
But there's still a one in ten chance that my cancer will come back.
Have you had dinner?
Yeah, we did. What did you have?
Daddy? Daddy?
A few months later, there's a problem.
I've started to notice swelling in my legs.
If I'm not careful,
my right leg swells up
to be much bigger than the left-hand side.
It's caused by a side-effect of my surgery called lymphedema,
where excess fluid builds up in your limbs.
It's grim, innit?
You have this system called your lymphatic system,
and it's like little tubes
and channels that are drawing fluid away from all parts of your body,
and then bringing it upwards towards your heart.
Now, along those tubes,
you have these little things called nodes.
When they were doing my surgery,
because they were concerned about cancer being in
the lymph nodes, they chopped them all out.
And so now the fluid just, essentially, leaks out
and collects in my leg.
My devilishly sexy tights!
They're compression garments, so, um,
they just help stop all of the fluid building up, basically.
So, they're really tight down the bottom,
and then they're slightly less tight as you go further up.
But the idea is that they just keep the swelling down.
So, you have to wear them all day, every day.
You really do? Yeah, even on the beach.
It just feels very sensitive to the touch.
It just feels very full and sort of tight.
It's not painful.
It's not, like, excruciating agony. It's just really uncomfortable.
The problem with lymphedema
is that you have no idea how quickly it's going to progress.
It could be that it happens over the course of a few weeks or months.
I mean, it really can be that quick.
Come on.
I have got really upset about it because, you know,
you can't be upright for sustained periods of time.
There was one evening I was like, "Right, I'm
"going to do some baking with my daughter,"
and ended up standing up for a while.
And then finally, like,
sat down and put my feet up and like,
literally, my leg, it was like a balloon.
It was, like, incredible. This thing
just, like, basically expanding, like, under your hands.
I just don't have that view of myself in the future. You know?
Like, I don't see myself as, like, in my 50s
with, like, one giant leg, like,
unable to walk 100 metres or, like,
unable to work, even.
When we are facing something that feels like it's
a really terrible enemy, like cancer,
we have this bias towards just trying to get rid of
the overarching concern,
and worry about side-effects later.
Maybe we are too willing
to just do treatment at any cost just
because it feels like we're doing something.
It's estimated up to 400,000 people
in the UK have lymphedema.
After a radical hysterectomy,
there's a one-in-four chance of getting it.
There's limited treatment for lymphedema available on the NHS,
so I'm going to see a private lymphedema surgeon, Alex Ramsden.
They did the radical hysterectomy.
OK. And they took out everything, and then a bit more.
Right. When you say everything, so there was a hysterectomy?
Yeah, and the nodes. And it was... The lymph nodes.
So that's really important.
So, they took out the common lymph nodes,
they took out the interior iliac.
Yep. The exterior iliac. Right.
And they also took out the...obturator?
Obturator, I was just going to say obturator. Is that quite a lot?
Yes. So I'm not a gynaecologist. Of course. OK?
But they are often very aggressive
with this sort of tumour,
and they often take out a lot of nodes,
and it's very difficult to know,
before you start, whether they're going to be positive or negative.
One of the problems with lymphedema, as you will come across,
is not many people know much about it.
People mention the word cancer and everybody hears,
"Cancer, cancer, cancer, cancer, cancer."
Patients have this massive treatment,
and they have all this investment of time and care
and effort, and that's great.
But then you're left with something that is only going to get worse.
You've got it for the rest of your life.
"Here's a stocking." "Here's a stocking."
And everyone goes, "That's really rubbish,"
so it's a very common thing that people get very upset
and more traumatised by the lymphedema than they do
by the cancer sometimes.
SNIFFLES
I'm really sorry.
It's just quite hard to hear someone articulate it.
OK.
So, we've kind of got to the nub of it quite quickly.
I don't really know if there was a choice,
and now there's this, like,
lifelong sort of sentence, as it were,
of, like, what could be a genuinely, like, debilitating,
life-changing condition. There might not have been options.
You might have had to do it. Yep.
It will be a little bit stingy,
and I apologise in advance.
Alex is injecting dye into my lymph vessels
and using an infra-red camera to determine
the extent of my lymphedema.
This is the fluid that's trying to get out of your leg.
It can't go through your pelvis. Yeah.
So it's now going onto your tummy wall.
That's why you're getting fullness of your tummy wall.
So, this is the bit that gets really, like, thick, basically. Right.
God, it's, like, a whole galaxy! SHE CHUCKLES
The right leg is really good,
all the way up to where you describe, which is the upper thigh,
when you're starting to get those dermal back flow patterns
overflow onto your abdominal wall, and that is lymphedema,
but it's the very earliest stage of lymphedema that you have. OK.
Because you're really early,
what you're trying to do is stop it getting worse.
If it stays like this forever, that's fine. Right.
It might stay the same for the next 20 years.
I don't know.
Most likely, it's going to get worse.
Am I asking for a bit too much? I don't know,
maybe I am, maybe I'm being a bit greedy.
It's, like, I was in a position where someone had
to take stuff out to save my life, right? I know that.
I just... Maybe I am being a bit greedy to be, like,
"Is it too much to ask that
"I wasn't left with a lifelong chronic condition?"
Only half of cancer patients feel that long-term side-effects
of treatment are fully explained to them. At the moment,
the way that these side-effects and statistics are given,
it's like...reeled off like a list of numbers.
I'm not saying for a second that these treatments
aren't a good thing,
I just think that people should be given...
..the opportunity
to understand what they're really signing up for.
Life-changing decisions are so hard
to make when you're in the middle of a crisis.
But if you're not part of deciding what risks are worth taking,
cancer care can end up feeling like something that's done TO you.
Not with you.
I keep thinking about how this all started,
the smear test that I put off,
and the one that later found my cancer.
That's the smear test letter,
the one that I missed.
And then there's the one that they sent as the follow-up.
What happened...
..in my body that I didn't know about between then and then?
And what would they have found if I'd gone to that one?
The cervical screening programme is one of only three screening tests
offered by the NHS,
along with breast and bowel cancer for those over 50.
The NHS estimates that their
cervical screening programme saves around 5,000 lives every year.
But even screening provokes debate.
I'm in Glasgow to meet Dr Margaret McCartney.
She's a GP and an honorary fellow
at the Centre for Evidence-Based Medicine.
She wants to tell me about some research that turns
the tables on what we think we know about cancer.
So, when I was at medical school,
very much you were taught that cancer is a bad thing,
and certainly very often it is a bad thing.
It's something you would want to know about and treat,
but it's more complicated than that as well.
We know that there are many people who've got
a cancer in their bodies that they would not have known about had they
not gone to get tested for it,
and they would never have known about it
because it wasn't a cancer that was destined
to spread or to kill them or to cause problems.
Is this quite a rare thing, though,
that people have cancers that won't go on to kill them?
There's a background that's useful, which is
that there have been a lot of autopsy studies done over
the last few decades, where people have examined
the tissues of individuals who have died suddenly and unexpectedly,
usually road traffic accidents. So, they've had a sudden death,
and these people weren't being treated for cancer.
They weren't being investigated for cancer.
They didn't have symptoms that we knew about that would suggest cancer
and the tissues have been examined
but have found cancer in around about 7% of cases. 7%?
Yeah, yeah.
This does seem like quite an astonishing thing to say.
It's a really weird thing to try and think about
because it runs counter to everything that we're taught
and we're told. If you go and look for cancer,
you will find cancer. There's no question about that,
so if you go and put, you know,
hundreds of people through a CT scanner or an MRI scanner,
you will find cancers that they had no symptoms of,
they didn't have any inkling about.
The big question is whether that cancer was
going to go on and do that person harm.
Some of the studies using MRIs put this number slightly lower,
but we do know that there is
a pool of undiagnosed tumours out there.
But to discover whether those cancers will cause harm,
Margaret wanted to show me something extraordinary
that reveals why hunting for cancer cells isn't always a good thing.
So, this is a graph of what happened in South Korea when they decided
to offer the population screening for thyroid cancer,
and they started to screen people just in 1999.
So, you'll see that, as they started to screen for thyroid cancer,
they found more and more and more and more thyroid cancer.
But what you really need to know is,
does this make a difference to death rates?
Look at the orange line down the bottom,
and you'll see that the mortality is a flatline.
This is a classic graph showing overdiagnosis,
because what you're doing is you're diagnosing more
and more and more thyroid cancer,
but you're not making any difference to death rates.
If you get diagnosed with thyroid cancer, what happens?
What is the treatment for it? It's all in the neck, isn't it?
Yeah, that's right. It's your thyroid gland around here.
You're going to be offered surgery, you might be offered radiotherapy,
you might have to go into long-term treatment after that,
so lots of interventions.
So, there will be some people who've had surgery on their necks
that they didn't need? Totally, absolutely.
If you're not going to benefit from a treatment,
all it can possibly do is give you side-effects.
I guess, in the UK, for something like thyroid cancer,
we don't screen... Yeah.
..but then there are other types of cancer where we do.
Like breast cancer, for example.
So, in that case, then, is the equation flipped?
Is it very obvious that there's a benefit to do it?
Well, I'd love to say that there was, but it is more complex.
So the government have made a decision that it's cost-effective
to offer it to women. So, the Marmot Review
looked at the evidence around this a few years ago
and they concluded that,
for every 200 women that had breast cancer screening,
you would delay the death of one woman,
but at the cost of three women being over-treated
for breast cancer. And when you say overtreated,
are those the type of women who have cancer,
but don't know about it,
and it's not really going to go on to cause a problem,
and yet they're having things like mastectomies
and biopsies, and all of the concerns around those?
Yeah, that's exactly right. So, these are people
that would never have come to the attention of a doctor
had they not had the tests done. So, what you're saying,
it's good for this group of women overall,
but, sorry, you're the unlucky one,
and you're the unlucky one, and so are you.
But the problem is that those women will never know
that they've been unlucky.
And this is the really big problem because the temptation is,
for every single woman who's been detected as having a problem,
to think that she has been diagnosed early
and that her life has been made better because of that.
But you just don't know that - you don't know which
of those women that you are.
Whether you're the woman that actually did get a benefit,
or whether you're the majority of women that actually
didn't get benefit from treatment.
Do you think it is a big problem that you have
those three women in 200 being overtreated?
Well, I suppose I wouldn't be the person to judge that.
It would be those individual women to judge that.
So, if you have breast cancer screening,
I think you should decide for yourself whether you think
that that risk is worth it or not worth it.
You know, are you happy with that risk yourself?
Cancer screening saves thousands of lives every year,
but it's important to acknowledge that this is not without cost.
There's like this fundamental disconnect, really,
between what the numbers say
and what it actually feels like when you're the number.
Because, of course, you can look at all those statistics and say,
"Oh, that is pretty terrible
"that people are having these life-changing surgeries
"that they don't need, that they never had to go through."
But then, at the same time,
having been diagnosed with cancer,
I know in that moment...
..I just wanted to get rid of it.
I just wanted to get rid of it.
It wouldn't really have mattered what the numbers said.
There are no easy choices in any of this.
Turning down treatment wasn't right for me,
but that's not the case for everyone.
I'm leaving...
..St James's.
Three surgeries,
50 sessions of radiotherapy,
six rounds of chemotherapy.
And I've just told them no more treatment.
Rob is a climbing wall inspector
and dad to four-year-old Caleb.
He has a cancer of the soft tissue called synovial sarcoma,
and it's terminal.
I went to Yorkshire to meet him.
If it's OK, I want to take you back to that decision that you made.
Yeah. Tell me a bit about what you were weighing up in your mind at that
point in time. What were the two sides of that argument?
It was quite simply quality or quantity.
I thought, if I had treatment, that I would be spending
a lot of time in hospital,
and I did... That isn't going to be
a very good quality of life. I could have had the treatment,
and it could have, say, given me an extra four or five months.
I could have had the treatment,
and I could have passed away during treatment or just after.
And trying to calculate, work out,
that decision was really, really difficult, to be honest.
But, then, very easy on the flip side of it,
of thinking, "If I want to go to Scotland in my van with Caleb,
"if that's something I want to do before I pass away,
"going through treatment isn't going to get me there."
Well, Caleb, this is Glencoe.
It was only 24 hours,
but I got him to Scotland,
eight hour drive up there,
but we also went to Loch Lomond,
so we had a paddle around Loch Lomond as well.
So, we did lots of things in that 24 hours.
Some people might say
that choosing not to have treatment at
the stage you were at was a bit like giving up.
I don't see it as giving up.
I see it is accepting the inevitable, to be honest.
I know I'm deteriorating, I know things are changing,
but as long as I can come here, ride my bike, I will do.
I've made a lot of memories here,
and that's definitely not what I would have got
had I been in a hospital bed.
So, this, um, is just a memory box for Caleb.
It's got lots of things, all the rocks from different walks
we've been on and painted. Together.
I think that's just so sweet, having stuff like this ready for him.
And then, of course,
letters which... These were written in 2019 when
I was going through treatment.
So, there's, like, one for his 18th birthday and 21st,
wedding day, all these kinds of stuff. Er, first car.
When you realise you're gay,
that's an important one.
You never know! Exactly.
So, first fight with your mum.
SHE LAUGHS
First day at school -
that one can go in the bin, yes! You made it.
I made it, milestone. And how does it feel to have
already, some of them out of date, almost? Well, that's...
Yes, I've surpassed many of the estimations
because that's what it is at the end of the day, isn't it?
They're only estimates.
It takes, I think, quite a lot of strength
to put something like this together.
Yeah. Has it helped you too? Oh, definitely.
I think writing the letters made it feel like I was,
like it was the start of the acceptance, to be honest,
of that this is what's happening.
So, what happens now? Wait, really.
Keep taking my meds,
keep riding my bike.
Go on living, really.
There's nothing else you can do.
There's this incredible amount of strength in what he's doing,
and I think Rob is someone who is just
totally fine with his own mortality.
Like, I know he doesn't want to die,
of course not, but he's...
He's got this calmness of mind.
Like, he's worked out what is important to him,
he knows what his values are, and therefore,
everything else falls into place.
I'll need regular follow-ups for the next five years
to see if the cancer has come back.
Hi, Hannah. Hi, how are you doing? Come through. Thank you.
Come on in, have a seat. Thank you.
How is it otherwise going?
You're fine? Yeah, it's OK, yeah.
I realise now that this is going to be part of my life forever.
It's an anniversary today.
Not the sort of anniversary you traditionally celebrate,
but it was a year ago today that I was in hospital
with my surgery.
I was thinking about it this morning.
It's only until very recently that
I haven't just been completely reeling from it.
I mean, I think it's just impossible to, like,
get cancer in your mid-thirties
and not come out of it with
a really different view of life. Yeah,
it's left an indelible mark, hasn't it?
I mean, it's not a simple, you know,
"Heal, get over it, move on."
I mean, you do have to move on to a degree, but it's not,
it's nowhere near that simple.
I think, for most of us,
for most of our lives,
we get to pretend that we are immortal, really.
We don't have to live with this shadow of death,
really, hanging over us all the time.
We have this kind of luxury of that,
and so I think that whenever you are confronted
with your own mortality,
as you are when you receive a cancer diagnosis,
no matter how serious it is,
I think that we are so not used to that idea,
we are so terrified of the idea
that we are unwilling to tolerate any risk whatsoever.
I try not to think too hard about the numbers of recurrence,
because that number of one in ten,
the chance of recurrence, it is still there,
and it is still true and it's still a fact.
I don't know, I just think, over time,
you have to accept that life comes with risks, and that
you can't sort of wander around being terrified
of everything that might happen. Otherwise,
you're never going to have the chance to properly live it.
I think that somehow we've decided that the chance of dying
is the only number that matters,
and so we've built a one-size-fits-all approach
to cancer care that takes courage and strength to deviate from.
Perhaps that's because we're not having honest conversations
about the true benefits and costs of treatment.
Only when we do can people work out what they most care about,
and make the choice that's right for them.