When Cancer is Incurable

[E. Nigma]

When Cancer is Incurable


BY KATY HUMAN
PUBLISHED MARCH 12, 2013

RELATED ARTICLES Planning for an Unpredictable Cancer

For Dann Siems, the headaches began in early summer 2009, fishing season
in northern Minnesota's lake country. At first, aspirin worked. But
during a trip later that summer to Lake of the Woods, nothing could cut
the pain.

On a Monday in August, his family doctor saw the brain tumor in a scan.
The next day, the doctor gave him the news. Before the end of the week,
doctors in Fargo, N.D., performed a craniotomy to debulk the tumor and
identify it. His diagnosis: high-grade glioblastoma, an aggressive
malignancy. His prognosis: poor.

--Your life is just going along fine, and then suddenly everything is
turned upside down, in just a few hours,-- says Lenore Siems, who helped
her husband deal with non-Hodgkin lymphoma five years before.

There's no -typical- way that patients or families react to a diagnosis
of incurable cancer, says Margaret Bevans, a clinical nurse scientist at
the National Institutes of Health (NIH) Clinical Center in Bethesda, Md.
"You need to give yourself space, time and the permission to be anything:
sad, angry, frustrated, weepy.--

After absorbing the initial shock of diagnosis, reactions often differ
greatly. Some patients decide to treat the cancer as aggressively as
possible, hoping to extend survival or improve their quality of life.
Others seek quality of life in other ways, declining treatments that are
not likely to be curative to avoid side effects that may be uncomfortable
or dangerous. Experts urge patients to respect their own needs and
desires as they plan for the next weeks, months or years. --It's not
right or wrong to make any particular choice,-- Bevans says. --It's about
being informed and making [those choices] personal.--


Understanding Choices

--Dann was very clear on what he wanted,-- Siems says. --He wanted to try
everything. But at the same time, he was realistic洋ore realistic than I
was.--

An environmental biologist who was 51 at the time of his diagnosis, Dann
Siems started talking with his wife about finances. --He didn't want to
put us in a hole with medical expenses because he knew it was highly
likely that I was going to be a widow,-- Siems says. In part, that's why
the couple began investigating clinical trials, she adds. --And part of
it was Dann being a researcher. It was his legacy葉o contribute some
knowledge to society.--


I was always hopeful. In the back of my mind, it was always, 'Maybe this
will be a cure.'

有enore Siems

=================

Through a colleague, the Siemses got in touch with an oncologist at the
National Institutes of Health, who helped him enroll in several clinical
trials and receive chemotherapy溶early all for free.

--He was a bulldog,-- Siems says of her husband. When a treatment stopped
working, he'd call up experts in the field, researchers whose work he'd
found online, to learn more. She says she sometimes struggled to keep up
with the medical jargon. --We'd be meeting with the doctor, and they'd be
in this big, animated discussion, and I would raise my hand and go,
舛ould you maybe say that in English?'--

Misunderstandings between doctors, patients and families are common, says
Deborah Schrag, an associate professor of medicine at Harvard Medical
School in Boston. Schrag recently co-authored a paper in which she and
her colleagues assessed how well patients with advanced lung and
colorectal cancers understood the likely effects of their chemotherapy.
Many patients thought the treatment would probably cure their disease,
although that was rarely true. Chemotherapy for advanced lung and
colorectal cancers can alleviate symptoms and extend life in some
patients by weeks or months but only rarely for more than several years.

--There are consequences [for] these misunderstandings,-- Schrag says. --
You can miss out on the ability to take charge and control of how you
want to spend the rest of your life.--

Some people, she says, don't seek that kind of control, but most
eventually want to have a role in deciding how to spend the rest of their
lives. "Should I repaint the bottom of the boat? Breed the dogs this
spring?" Schrag says. --Should I spend Christmas with my daughter and son
in California or wait?--

Individuals will answer those questions differently, depending on how
they expect treatment to progress. --I have a patient who is going off to
her granddaughter's bat mitzvah before starting chemotherapy,-- so she
won't be as sick during the celebration, Schrag says.

Doctors and patients need to work harder to ensure shared understanding,
Schrag says. "A patient might ask to talk through the best scenario as
well as the most likely," for example, she says. "Because they can be
different."

--We were told they were not likely curative,-- Siems says of her
husband's various chemotherapy regimens. --But I was always hopeful,--
she adds. --In the back of my mind, it was always, 閃aybe this will be a
cure.'--

Bevans says she often talks with patients about -reframing- hope. Maybe
it's not for decades more of life, she says. --But there's always hope
for daily comfort and that each day you live your life well.--


Making Plans


Shortly after Dann Siems' initial surgery, his doctor urged the couple to
begin talking through certain necessities: filling out an advanced
directive, for example, so Lenore Siems would know what her husband did
and didn't want when it got to a point where he couldn't communicate.

--We drew up a will,-- she says. --We talked about his last days, how he
would want hospice at home, out of the hospital.--

Her husband's biggest fear wasn't death, but pain, Siems says. --So that
was in the directive葉hat he wanted everything and anything to manage his
pain.--

Even on days when they were optimistic about his prognosis, they talked
about his hopes for their son, how to pay for the boy's college education
and when to start putting aside that money.

A friend who was also an attorney spent a few hours with them one day,
Siems says, discussing Social Security, disability and finances. --And
then he asked us about the possibility that, someday, I might meet
someone else,-- she says, her voice cracking. Nearly two years after her
husband's death, she's says she's still not ready to meet anyone, but she
knows that the fact that he encouraged her might be important some day.

Siems says she will forever be grateful to everyone who insisted that
they talk through so many difficult topics before her husband died. An
old friend of his was dealing with an incurable cancer at the same time,
and that friend refused to talk about the possibility of dying, saying he
didn't want to be pessimistic. When the friend died, his wife struggled
to make decisions in a state of grief. --She had to make those decisions
alone, guessing what he wanted,-- Siems says.


Finding Help


There may be weeks, months or even years of uncertainty between a
diagnosis of incurable cancer and the care that hospice can provide.
Siems says that was one of the most difficult things for her to accept.

--Especially in the beginning,-- she says. --We needed a social worker, a
counselor, someone who could say, 践ere are some phone numbers. You've
got a lot to think about. Here are some community resources.' There was
nothing. Not even a pamphlet.--

Some hospitals and cancer centers have social workers and counselors on
staff, but they're not always available when needed. At times, patients
and families may need to advocate for themselves, Bevans says. --Ask: 選s
there someone else in the office I can connect with between now and next
week's appointment? Because I might have additional questions.'-- Therapy
can help, too. Joseph Greer, a psychologist at Massachusetts General
Hospital Cancer Center in Boston, recently found that a practical type of
talk therapy, cognitive-behavioral therapy (CBT), can be tailored to
patients who have untreatable cancer. Those who went through CBT were
significantly less anxious, he says.

Greer works with patients to identify current stressors, which are those
that have the greatest negative impact on life at the moment. In the case
of incurable cancer, the primary stressor葉he cancer洋ay be untouchable.
--So we talk about those aspects of stressors that [patients] can
affect,-- Greer says. --One thing might be activity planning and pacing
around treatment. Look at your week: When is your chemotherapy? What do
you expect in terms of energy level? So let's think about the kinds of
activities you can still do and set some priorities.--

In terms of emotions, Greer says he tries to help patients identify ways
to accept and tolerate uncomfortable feelings. --We find that if we can
at least treat some part of the emotional burden, it can help people
focus on the present and find a bit more relief.--

Bevans echoes the importance of moving beyond checklists of wills,
medical directives and financial needs to life priorities. --Get the
practical things done, put them away and leave time for the important
stuff on your plate,-- she says, so as to focus on --living, being in the
moments you've been given.--

Siems says hospice workers arrived 18 months after her husband's initial
diagnosis and, because the couple had planned ahead, he was able to spend
his final days at home, surrounded by friends and family. Just as he'd
wanted.

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E.