From CD on Tuesday, January 22,
2008 9:37 AM
“Below is a summary of our medical experience. Many of the
things touched on in the ‘duty to advise’ article would have
helped us as we fought to get information and struggled to get
the best treatment that we could.”
2002
April
My husband has pain in the rib/back area, and after three
weeks we go to the doctor and the internist guesses at pleurisy
and prescribes anti-inflammatory drugs.
June
Higher level of pain, pulmonologist drains lungs and takes a
“wait and see” approach. No doctor is aggressive or actively
seeking the cause as she says that “sometimes these things just
go away.” However, when the test results are inconclusive, they
advise that it could be one of seven things. They list them and
they include tuberculosis and cancer. They ask if he is a smoker
which he is not and they seem greatly relieved.
Dizziness and nausea set in, and a follow-up x-ray indicates
a biopsy should be performed.
A biopsy is done along with talc pleurodesis, which we didn’t
request, weren’t told about, and didn’t consent to. The
resulting diagnosis is mesothelioma. The doctor recommends an
experienced and famous EPP surgeon 1500 miles away for immediate
radical surgery, to be performed three weeks at the latest. He
strongly advises this method of treatment but notes that it
could kill him on the operating table or shortly thereafter, and
that it will probably only grant him several extra months of
life.
Our search begins to find a treatment that will not kill him.
Meanwhile, a family friend who is a legal receptionist is the
only person who advises us that mesothelioma is caused only by
asbestos and that we should get a lawyer to check into it and
seek compensation. We have come to understand that we could lose
our home, our savings, our credit, even our jobs and health
insurance over having to travel away from home for treatment.
We interview lawyers and request the best medical references
they have, the names of living patients we can contact, and
anything that can help us decide which way to go. We spend hours
on the Internet looking for any remotely plausible solution
worldwide, since we have flight benefits as part of my airline
employment. We spend hours looking for cancer support and funds
to help us manage the costs of leaving town and renting a hotel
or apartment in an expensive city. Who will feed the dogs, fill
the pool, mow the lawn, calm our daughters in their graduating
year of college – or will they have to forego their year’s paid
tuition (and maybe diploma) and help us out? We try to get
doctors to send us their records or reports on statistics that
support their method of treatment. This turns into a shell game,
as the doctors refer us to the hospitals and the hospitals say
they don’t have such records. No one tells us that there’s never
been a randomized clinical trial validating any of the surgical
options. No one tells us that the data we’re looking for doesn’t
exist.
Our family tasks out jobs/research needed for all phases of
treatment, legal representation, home care, cancer support
organizations. We make appointments with some of the top meso
surgeons on the East Coast and in the South.
The surgeons discuss the staging methods and surgical
criteria, which vary greatly, that they use to decide if my
husband is a candidate for surgery at all. We had been told
previously we were lucky and that we had caught the cancer
early, that he is healthy, and that the fact that he’s a
nonsmoker is a plus. Now we have to worry if we will ever even
have the option of surgery. When I ask one expert in New York
which surgeon to trust with his life and protocol, he simply
says that we should “go with the surgeon that makes us feel most
comfortable.” We are appalled, confused, and frightened. Are the
only differences between doctors cosmetic? Are all treatments
useless, and it just boils down to who we blindly trust? My
husband is getting panic attacks over this choice and says that
“ if it weren’t for losing the life insurance for his family, he
would almost rather slit his throat than go through this type of
potentially debilitating surgery.” My heart aches for him, and
for me, and we are scared to death.
One expert is unavailable for an immediate consultation, and
another expert has a rude and cold office manager who drives us
off with her unfriendliness. So much for feeling comfortable.
We finally get an appointment with one of the top NY surgeons
and after discussing it and meeting the testing criteria, we
request surgery immediately. The surgeon puts us off due to
plans for a three-week vacation. The surgeon says that it’s a
“slow growing cancer” and we can “afford to wait; no problem.”
Preliminary tests show he is a good surgical candidate.
August
We return to NYC. During the surgeon’s vacation, the tumor
has grown considerably and he is no longer a candidate for
surgery. The doctor doesn’t understand why we’re shocked and
outraged, and is unapologetic about having told us the tumor
could wait.
His pain level escalates and we opt for pain management. It
is difficult and we are at the hospital for many days. The
surgeon refers us to an oncologist for chemo but tells us to try
to get out of the hospital for pain management because the tumor
is growing and they can’t administer chemo with him being in the
hospital. This makes no sense to us, but no one explains. The
chemo has no effect on the cancer, and the tumor starts
distending the skin on the right side of his back.
We switch chemo, which results immediately in unbearable,
excruciating pain. Pain medications are so concentrated as to
nearly be toxic and he is hospitalized, but the visible lump
from the tumor begins to shrink almost immediately. We’re afraid
of the pain for the next treatment the following week. We hate
this hospital. The treatment, the unavailability of the nursing
staff, the absence of compassion, the mistakes, the cold and
clinical approach, the arrogance of the surgeon, and the refusal
of the doctors to confer or work with each other make this a
horrific, crazy, bad experience.
September
We call one of the surgeons in the South whom we had
consulted with earlier. His assistant says that my husband may
still be eligible for surgery. We jump on a plane, but first we
have to drug him completely out on pain medication because the
air pressure causes terrible pain. Unfortunately, surgical tests
on the lymph nodes show he is not a candidate. The surgeon has a
wonderful manner, is compassionate, capable, and caring. The
chief of oncology recommends we go to the Midwest to see an
oncologist who specializes in mesothelioma treatment.. He can’t
explain why. We ask him if he can find out what the other doctor
would recommend and do the treatment where we currently are. We
like this hospital and the pain management team, and have no
living arrangements in the Midwest. We need expert nerve
blocking surgery asap due to the intensifying pain. This
hospital has a connected hotel which is an incredible
convenience, as we had have to use ambulances and taxis many
times in the northeast to get to the hospital for emergency
treatment for dehydration, chemo complications, and panic
attacks.
The oncologist astounds us by saying he’s “not sure” if he
can consult with the oncologist in the Midwest. We’re blown
away. How can the same experts in the same field who are
recommending each other not automatically agree to help? We have
no resources, no research, no relatives, nothing there!
I plead with the oncologist in the Midwest by e-mail to work
with the oncologist in the South, and the Midwest doctor agrees.
My husband gets admitted for pain management surgery and
treatment. We’re told that the area on the side of his chest,
under the arm and lower down, has a lot of nerve endings so pain
there can be extremely difficult to manage.
October
Our oncologist tells us that he hasn’t been involved with our
case because he thought we’d gone to the Midwest. We’re amazed.
He reviews the case for a week, gets more x-rays and reports. I
request an appointment to discuss experimental therapies. From
the beginning, I’m begging to get my husband on the Alimta/Cisplatin
trial but because of the talc pleurodesis that we hadn’t been
asked about and hadn’t consented to, he was ineligible. He is
now very weak and has become delirious from the witch’s brew of
chemo, medications, and painkillers. As the whirlwind spins out
of control, we are beset by the hungry defense lawyers from the
asbestos companies, who are going to depose him at the hospital.
The defense lawyers, who bill their clients by the hour, might
try to lengthen and make the deposition as brutal as possible.
Our attorney threatens them to stop the deposition if they do.
November
The oncologist doesn’t want to discuss other options and
doesn’t think there are any. He advises us to go home and get on
hospice. He is very cold and is in a rush to get to his next
appointment.
My husband is discharged from the hospital. It’s almost
impossible to get him in a bed in the back of the station wagon
to go home, as he is resisting because he’s delirious and
disoriented from disease, pain, and drugs.
The home oncologist recommends a hospice care home program.
They give me liquid morphine to use when needed. There’s no IV.
He has gotten dehydrated again. His pain has diminished but so
have his bodily functions and skin temperature. Hospice says his
body is shutting down. He stays pretty uncommunicative.
November 18, 2002
My husband passes away surrounded by me, his step-daughter,
sister, and brother-in-law. His two other daughters are en route
when he passes away.
From the standpoint of “should lawyers advise their clients
about treatment options,” I think this article would be a great
one to hand out to the patient and caregiver. It is a difficult
thing as the patient and caregiver may be looking to everyone
for hope, but if the patient takes this article home, perhaps it
can sink in as deeply or as slowly as they or their family can
handle it.
I realize there may be many patients who might not be able to
take in all of the “duty to advise” article. A
summary/introductory page could be used to highlight the most
important points.
Roger’s article should be posted and easily found on the web
site of any asbestos organization website.
I also feel that all mesothelioma surgeons should be listed,
with a reference as to whether or not they responded to the
survey. Patients have a need and a right to know.
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PATIENT PROFILES
