In September 2023, some 6,000 experts from over 100 countries gathered for the World Conference on Lung Cancer.

Over four days, they shared the latest in research on treatments and new medicines.

One presentation by a lung cancer patient captured the audience's attention.

My name is Kazuo Hasegawa.

I'm a stage four lung cancer patient.

14 years ago, Hasegawa was diagnosed and given just 10 months to live.

Today, he announced the results of a personal project:

One of the world's first patient-driven clinical trials.

To fight the continual spread and reappearance of cancer, he has tried many different treatments.

His work has earned him respect from Japan's medical community.

I'm an organizer.

Sounds good, doesn't it?

Hasegawa took the initiative to conduct research and choose his own medicines and treatments.

I choose treatments that
I myself am convinced by.

I do extensive research,
then talk to my doctor.

Then I make my decision.
So if it goes wrong, I can accept that.

That way...

I have no regrets.

In 2010, I had a cough that lasted two months.

One night, it got so bad that I rushed to the hospital.

I was immediately admitted to stay, and had to cancel my TV director schedule.

I couldn't talk.

My messages to the doctors are in this notebook.

There was a fist-sized lump on the right side of my neck.

They did a CT scan, which revealed a six-centimeter white shadow in my right lung.

The doctor fell silent, and avoided giving me the diagnosis.

The thought swelled up inside me.
This is probably cancer.

But I just couldn't ask.

You'd expect the doctor to tell you.

It was such an odd idea, asking
"Is it cancer?" and being told, "Yes."

I'd thought it was a bad cold.
I couldn't make that mental leap.

But I wanted to know.

"Doc, it looks like cancer to me.
Is that the case?"

And he said, "Yes, there is
a high probability of that."

Hasegawa was diagnosed with a type of lung cancer.

It had also spread to his bone marrow.

Cancer progression is expressed in stages.

This was "stage four" - the most severe.

It means that the cancer has spread to other areas of the body.

Chemotherapy is the recommended treatment.

Methods of removing the cancer, such as surgery and radiotherapy, are not recommended.

The five-year survival rate is just five percent.

Hasegawa was told he would live for three months without treatment, or ten months with treatment.

Was there any hope?

I went to the National Cancer Center for a second opinion.

I was examined by Dr. Nokihara Hiroshi, then director of the Respiratory Medicine Department.

I asked what treatments were available.

This is stage four cancer.

Completely curing or eliminating it
is currently not possible.

But I said it was important to
carry out the available treatments.

He told me, "Treasure every day.
That's the kind of disease it is."

He was looking at me with
tears in his eyes.

I said, "I understand."
That's how I felt.

I remember saying that.

I was 39 years old.

I'd married my wife nine years ago;

we had a son in elementary school, and a daughter just about to start.

As a father, my kids were everything to me.

There was something I had to do,
as best I could. No matter what.

I had to tell my children I loved them.

They had to understand
that they were loved.

That would give them the strength
to face the challenges of life.

My goal was to survive to reach 2011 - my 40th birthday.

To see my daughter with her school bag.

My son in his jujitsu uniform.

I vowed to do everything I could to make this happen.

My chemotherapy began in March 2010.

I decided to document it.

Good afternoon. Hm?
Good morning.

I didn't sleep last night.
I can't at the moment.

I have to use sleeping pills.

Chemotherapy brought about the first turning point in Hasegawa's treatment.

The cancer had shrunk from around six to two centimeters.

Hasegawa saw this as an opportunity to deal his cancer a decisive blow, and began researching other treatments.

He turned to radiotherapy, which isn't recommended for stage four cancer.

I thought that radiotherapy
had a chance of working.

It's not recommended.

But if my cancer had shrunk, wouldn't that
make it closer to early-stage cancer?

Technically, they're different.
But on the scans, it looked the same.

I didn't know if it could cure me,
but it might prolong my life.

I felt lucky. The treatment was
shrinking the cancer.

Dr. Nokihara and the other doctors felt that the risks associated with radiotherapy were too high.

There are downsides, of course.
Radiotherapy causes side effects.

The radiation causes serious damage.
It can lead to pneumonia, for example.

But radiotherapy isn't just used
to eliminate cancer.

In some cases, it can relieve
or prevent symptoms.

Hasegawa's symptoms were improving, so Dr. Nokihara recommended waiting.

But Hasegawa continued to pursue a cure.

He visited around 30 medical institutions in search of somewhere that would perform radiotherapy.

He chose proton therapy, which can target cancer with pinpoint accuracy, and has relatively few side effects.

It's an advanced treatment not covered by regular insurance.

The cost was around 34,000 US dollars, including hospital fees.

Hasegawa raised the money through cancer insurance, and from friends and family.

I felt anxious.

What would be covered by my insurance?

Would there be support for hospital visits and large medical expenses?

Would my family get a survivor pension if I didn't make it?

And would I receive welfare while I was unable to work?

Papa, stand there.

Papa is 40 years old.

In January 2011, I surpassed my ten-month life expectancy,

and celebrated my 40th birthday.

However, tests following the proton therapy revealed that the targeted cancer was once again growing.

Proton therapy could not cure me.

It's chemotherapy today. I have an
IV drip with anticancer drugs.

It lasts from 9 in the morning until
9 at night. A really long time.

The drugs will probably make my hair fall out.
But that can't be helped.

The side effects began immediately.

I couldn't taste my food.

It felt like I had a mouth full of concrete.

Without eating, I'd become weak, and the cancer would win.

But I was struggling to even hold my chopsticks.

Fever and fatigue took hold.

When I touch this area, it feels
sort of tight.

It's hard for some reason.
And painful. It hurts.

Is something broken?

I wonder if you can see.
There are no roots.

When hair falls out, it's supposed
to have white roots.

These don't. They're all dead.

That's what the drugs have done.

I lost more and more of my hair.

Losing your hair makes it feel like
you're truly ill. It's awful.

Really dreadful.

I'd prefer you to lose your body hair.

You'd be a hairless man!

It's a popular look! Many men get
their body hair removed on purpose.

They do, yeah. It's getting popular.

A test result from 2011.

It says treatment is going well.

The cancer hasn't recurred, and hasn't moved to the bones.

With his symptoms receding, Hasegawa once again considered the possibility of removing the cancer altogether.

This time, he decided to try surgery.

I'm in a good position right now.
Surgery might actually be possible.

There's a chance I'll get worse,
and the cancer will spread.

Then surgery would be
out of the question.

It would be way too late.
So now is the time to go for it.

The timing is right. I have
a small window of opportunity.

That's how I feel.

But Dr. Nokihara from the National Cancer Center Hospital recommended caution.

Patients often ask for their
cancer to be removed.

But that's not actually beneficial.

Removing a lung places a huge burden
on the body. There are only negatives.

Nevertheless, I wanted to try.

I found a university hospital that would perform the surgery.

Two years into my journey with cancer,

I underwent a five-hour procedure to remove my right lung.

However, soon after the surgery,

the affected area became infected, and kept generating pus.

To get rid of it, I was given a hole in my chest.

Following the doctors' instructions,

I washed it every evening to flush out the pus.

The affected area was just a centimeter away from my heart.

Once the kids were in bed, I'd spend an hour changing the dressing.

This became my daily routine.

I had been buying copies of my test data and medical records since my diagnosis.

I wanted to check it with my own eyes, to understand my condition.

Simply being anxious leads you
to fear the wrong thing.

You panic, saying,
"Is my cancer spreading?"

"My head hurts, did it spread there?"

At times like that, you can reach
for false conclusions like this.

Understanding your condition lets you
be afraid in an informed way.

Hasegawa underwent surgery to remove the cancer.

It stopped spreading, and his physical strength began to return.

18 months later he returned to work, and was even able to go on family holidays.

But then, in January 2015, Hasegawa was once again beset by cancer.

A routine checkup showed it had spread to four new locations, around the stomach and liver.

Hoping to have it removed, he once again went searching for hospitals that would perform surgery.

This'll do.

I can't sleep at all.

Can you see?

It's 2:30 AM.

It took two months to find a hospital that would perform an examination.

It was an institution nationally renowned for its expertise in abdominal cancer surgery.

Here's fine.

After a two-hour trip, Hasegawa arrived.

He waited another two hours for the consultation, but it finished in ten minutes.

Unfortunately, no luck.

The doctor said that different specializations are required depending on where the cancer originated,

so treatment wouldn't be possible.

This was something Hasegawa had been aware of.

I don't know what to do now.

But I expected this.

Well, maybe not entirely.
It's tough to take.

Hasegawa decided to continue chemotherapy,

while searching for a way to treat the cancer in his abdomen.

He hit upon a new idea.

I made this.

He started an association for patients.

Online, he wrote about everything he'd researched, treatments he had tried, and the ensuing side effects.

It struck a chord with lung cancer patients across Japan.

Hasegawa's recounting of his long battle provided valuable information to sufferers and their families.

I'm told it's an aggressive form of lung cancer,
so I'm worried about future treatment.

I only get information from doctors and the internet.
I want someone to talk to.

I'm looking for other treatment methods.

The group quickly attracted over 100 members.

I had a reason for starting the group.

It wasn't to help people
from on high.

Rather, I was hoping people
could help me.

That's what I had in mind.

I really think that.

Our first actions involved a drug being tested at the time: an immune checkpoint inhibitor.

We lobbied the Lung Cancer Society and the government so that patients could access it sooner.

Thank you for your support.

I have news! Let me show you.

It says that the immune checkpoint
inhibitor has been approved.

Fantastic!

I went straight back to the National Cancer Center.

There, I had a consultation regarding the new drug.

It was with who else but my doctor of six years: Dr. Nokihara.

The new drug has been approved.
What does that mean for me?

Perhaps this isn't talked about much.

But doctors are very concerned
about the side effects of the drug.

If there's no alternative, then
using it makes sense.

If the disease worsens, and we're out
of time, then it's worth the risk.

But otherwise, it's best not to use it.

With your infection, the textbook approach
would be to wait for that to clear.

Using the drug before that
is not recommended.

If it were me, I wouldn't use it.

As always, Dr. Nokihara heard my concerns, and offered thoughtful advice.

The years continued to pass.

Tests showed that the cancer persisted, but hadn't spread.

It's 2023.

I'm surviving.

I've been battling lung cancer for 14 years.

My daughter was just starting school.

Now she's a 20-year-old university student.

The truth about my cancer seemed too much for our young children to bear.

So my wife and I agreed not to tell them until they were older.

But over time, our children learned about my condition.

My income comes from the patient association, and from lecturing fees.

We rely on my wife's earnings.

I'm so grateful.

He's been going at it, tirelessly.

Constantly looking for a cure.
It can't be helped. And it's good.

He looks out for the kids sometimes.

But it's not over. It carries on.

Rather than a disease, it's just life.
Everyone has their challenges.

At this stage, I think I've known him
with cancer longer than I have without.

My daughter's dream is to become an animator.

Sometimes I'd get to see my dad
working, or lecturing.

I hadn't realized that
that kind of job existed.

I think that influenced me.

Here's an animated version of me, made by Mizuki.

After being diagnosed with stage four lung cancer, I started chemotherapy.

The cancer resisted the first drug, so I moved onto another.

My right lung was removed, and we monitored the spread to other areas.

If it gets worse, I'll look for new drugs that may prove effective,

such as immune checkpoint inhibitors.

That's my current strategy.

I started the patient association nine years ago.

Now it has over 6,000 members.

There's a growing number of survivors.

Like me, they've been fighting a long fight.

In addition to sharing information, we actively study new treatments and drugs.

Recently, we've been focusing on drugs that act directly on the genes of cancer cells.

Research is progressing quickly.

The theme of this session is the importance of gene testing in developing new drugs.

We're streaming it online, for those who can't make it in person.

Dr. Takahama Takayuki is a leading expert in gene-related medicine.

He has been supporting the group for a long time.

Patients are living longer, and
every year, testing methods improve.

You should check to what extent
your genes have been examined.

There may be abnormalities that
have not yet been discovered.

You may find a gene that is
causing the cancer.

Then appropriate treatment
can be carried out.

Genes are the blueprints for the cells in our bodies.

A variety of environmental and other factors can cause them to mutate, and produce cancer cells.

Various drugs are being developed to identify mutated genes.

This is also the case for adenocarcinoma, the most common form of lung cancer.

Genes mutate, causing cancer.

14 years ago, when Hasegawa was diagnosed, the only effective drug targeted a gene called EGFR.

But since then, medicines have been developed for seven additional genes.

At this meeting, the speaker was Aoshima Hisakazu.

He found success with a drug that targets mutated genes.

Our association had a positive effect on his life and work.

The doctor had great news: The tests
had identified the ROS1 gene fusion.

I remember welling up
when I heard that.

He asked lots of questions.
It was clear he was at a crossroads.

He searched for treatment and
support, forging his own path.

Aoshima was a busy local government employee, until his life changed at the age of 44.

Lung cancer was discovered during a routine checkup.

I asked the doctor if I would die.

They said many treatments
were available.

And I'd live for up to two years.
They explained that clearly.

"Two years?" I thought.
"I've only got two years left?"

With little time left to him, Aoshima searched desperately online.

He found my association, and asked if he could join.

Stage four members explained the
tests and treatments they'd had.

I was surprised.
I didn't know anything.

I felt uninformed about my own disease.

With this new information, Aoshima had another consultation with his doctor.

Unfortunately, the hospital gave him just a 10-20 percent chance that the gene would be identified.

I was very persistent.

They were pessimistic. I was told
not to get my hopes up.

But I asked to go ahead.

The results arrived two weeks later.

A ROS1 gene fusion, one target for which there is an effective drug, had been identified.

New "molecularly targeted" drugs affect cancer genes directly.

Once a cancer driver gene is identified,

treatment is effective in over 50 percent of patients.

Existing cancer drugs work on normal cells too,

causing side effects such as hair loss and fatigue.

The new medicines target only the relevant genes,

making them more effective, with fewer side effects.

For Aoshima, the treatment is working, and his cancer is stable.

Every year, new drugs are developed, and cancer treatments improve.

But survivors like Hasegawa don't always have easy access to the new medicines.

The patient association receives many enquiries about these new developments.

Here's a page of comments.

This, for example.

"It could be effective.
I'm disappointed I can't try it."

Why can't we use the available options?

If there's no other treatment available,
why can't we try it?

EGFR is one gene that causes cancer.

Molecularly targeted drugs work on these genes directly.

They're effective on cells resistant to conventional medicines.

In Japan, all new patients can access these medicines on national insurance.

But among existing patients, those without resistance genes are unable to use them.

This is based on clinical trial data.

The medicine is 71 percent effective on those with resistance genes,

and 21 percent on those without.

Hasegawa disagrees with this restriction.

If we think of it as a third-line
treatment, the game changes.

Third-line treatments often
make use of drugs with 10% efficacy.

Compared to that, the new
medicines are twice as effective.

For healthy people, 20 percent might sound low.

But for cancer survivors, it's huge.

To increase availability, we need better clinical data from cancer survivors.

Dr. Nakagawa Kazuhiko has supported me since the early days of the patient association.

It's expensive.

It will cost at least one million dollars
just to do the clinical trials.

We took the initiative, and began talking to doctors and companies about a new study.

It's called the "Kiseki Trial."

In March 2018, we made a fundraising appeal to patients, families and medical professionals across Japan.

Thousands of patients may die
without access to drugs that could work.

I could see that picture before me.

We raised $45,000 in three months, but it was nowhere near enough.

Our only option was to talk to pharmaceutical companies.

I went to Spain, where I had a meeting with executives from a major firm.

Together with doctors, I communicated the desperation of patients.

Six months passed.

Our message was received.

Financially, it doesn't make sense
for them to contribute to the trial.

But it improves patient satisfaction,
and scientifically, it's sound.

I think those are the reasons
why they gave the green light.

The company agreed to cover the cost of the trial.

Two years and four months later, we had the results.

In a word, it's positive.
These are good results.

The effects on survivors without resistance genes is nearly 30 percent.

That's almost 10 points higher than in previous trials.

This could establish a path to increased availability.

September 2023.

Hasegawa advocated to a global audience

the importance of giving patients more choice about medicines and treatments.

The setting was the World Conference on Lung Cancer,

attended by leading doctors and companies from over 100 countries.

My name is Kazuo Hasegawa.

I'm a stage four lung cancer patient.

This was the first case of a patient-proposed, investigator-initiated clinical trial in Japan.

The Kiseki Trial was proposed by patients, and initiated by doctors and companies.

Globally, there have been few projects like it.

It wasn't the only long-running project of Hasegawa's that attracted attention at the conference.

For the past 9 years, he has been helping build a database for patients' genetic data,

to facilitate international clinical trials.

The project is called LC-SCRUM-Asia Pacific.

Collecting data from across Asia will make it easier to develop new drugs,

even for less common types of lung cancer.

Japan is leading the project, and Dr. Goto Koichi plays a central role.

He says that conducting trials in Asia will also benefit companies in Europe and the United States.

Genetic mutations are more prevalent
in Asian people than Caucasians.

Companies want to register more
patients and proceed with trials.

So conducting trials in Asia helps
with developing new treatments.

At the conference, the project organizers announced a great success.

The trials resulted in the development of a new molecularly targeted drug for lung cancer.

It targets a ninth gene called HER2.

Responses were consistent regardless of the HER2 mutation type, amplification type or anticancer therapy.

Safety profile was acceptable and generally manageable in both doses, but favored the lower dose.

Medical advances extended my life.

This has given a similar opportunity
to people across Asia.

As a patient, I'm so happy.
I want to help them to do all they can.

That's what I want to say.

Throughout my battle with lung cancer, I chose my own path, supported by doctors.

When I was sick, I'd take the bus home.

But recently...

I've been walking back.

I don't know when the cancer inside me will reawaken.

So I'm still looking for new treatments.

It's like walking up a hill, one step at a time,

towards the house where my family are waiting.

The courage to live is very important to me.

Needing courage to survive
is a strange idea, isn't it?

But it makes sense to me.

I'm preparing for the end
of my life. I know it's coming.

Maybe soon. Probably soon.
Maybe as soon as it gets.

The question is
what to do about that.

And that's where courage comes in.

Okay!

Let's go.

When the time comes, how satisfied
will I be? I don't know what to do.

But I must find the will
to confront that reality.

It takes real courage to do that.

Whatever is possible to do...

I'll do.

See you later.
They're waiting for me.