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1 13th April 13:27
slazlo
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Posts: 1
Default Bronchoalveolar Carcinoma -- Learn from our experiences! (tuberculosis)


Every time I see an ad touting the National Jewish Center in Denver as
the "#1 Pulmonary Center in the country," I'm reminded of my father's
experience -- both leading up to, and actually going there.

In a nutshell, he saw 6 doctors, over the course of 7 months, before
finally being diagnosed with advanced bronchoalveolar carcinoma. It
was an amazingly frustrating and protracted process. I know that
bronchoalveolar carcinoma is sometimes difficult to diagnose, but it
should not be this difficult.*

Below is his saga, in his own words (he passed away November, 2002).
Hopefully this can act as a note of caution for those experiencing
mysterious and as-yet undiagnosed pulmonary problems. (Note: I've
removed the doctors' actual names from the original write-up.)

------------


I have had a long-term history of asthma, with periodic difficulties
in breathing. Beginning in July 2001 I began coughing frequently,
expectorating, and had tightness of chest and difficulty in breathing.
About that time I also had a routine chest X-ray at the Hoag Hospital
walk-in clinic, in July 2001. It showed a large black mass in the
upper lobe of my right lung. The physician who reviewed the X-ray,
Dr. AAA, prescribed a CAT scan to better understand the nature of this
dark mass. The CAT scan was inconclusive.*

I took the X-ray plate and CAT scan to my pulmonary specialist, Dr.
BBB in Irvine. He prescribed a bronchoscopy, which proved to be
inconclusive. His diagnosis was that, there is something wrong with
you, but I'm not quite sure what it is.*

At that point, I reestablished my relationship with Dr. CCC, a
pulmonary specialist in Newport Beach who had been in attendance
during my quadruple bypass heart operation four years previously. Dr.
CCC prescribed his own bronchoscopy at Hoag Hospital, after which he
said, there is something wrong with you but I am not quite sure what
it is. Both of these were honest opinions but essentially defeatist,
not pro-active. They did not provide guidance about what to do next.*

One of my sons researched the best facilities in the nation for the
treatment of lung and pulmonary disorders. As a result, I learned
about the National Jewish Hospital in Denver. On a self referral
basis I asked for an appointment there. They were heavily committed,
and it took some time for me to be accepted as a patient. I went to
National Jewish Hospital for evaluation during the week of November
12, 2001. After four days of exhaustive procedures, including X-ray
plates and a CAT scan, the physician in charge of my case, Dr. DDD,
said that I have no evidence of cancer, tuberculosis, or yeast
infection. He said that I suffered from inflamed air passages and
continuing borderline pneumonia. I felt a sense of euphoria after
hearing his diagnosis. He prescribed an antibiotic, Levaquin, and
Prednisone, a steroid. I was to take each of these for 30 days, then
have a new CAT scan, to be returned to him for his evaluation. At the
end of 30 days, I was no better. I had the new CAT scan sent to Dr.
DDD, but never heard from him again. Nor have I heard from him or
anybody else from National Jewish Hospital since that time.*

In the meantime, one of my sons had been in consultation with a
pulmonary specialist at the University of California San Francisco
Medical Center, Dr. EEE, who recommended that I immediately go for a
VATS procedure. VATS refers to "video assisted thoracic surgery," a
diagnostic tool to better evaluate the nature of lung disease. It is
invasive, but considered to be highly informative for diagnostic
purposes. Dr. BBB, cautioned me about the VATS, saying that it could
sometimes cause unanticipated side effects for a person of my age.
But I decided that I had no choice but to go forward. Dr. BBB
recommended a South American vats specialist at St. Jude Medical
Center, arguing that he was local and had a good reputation.*

I elected instead to utilize the services of Dr. FFF at Cedars Sinai
Hospital in Los Angeles. The choices are limited for VATS. I doubt
that there are more than six surgeons in California who are conversant
with the procedure. Dr. FFF proved to be a fortunate choice, having
trained at a top California university. Again, I had to wait for an
appointment. My VATS was performed on January 7th, 2002. Within 20
minutes of the completion of the VATS surgery Dr. FFF announced to
family members that, this patient has cancer in both lungs and it is
inoperable. So I went from no evidence of cancer, to cancer in both
lungs, in less than two months. It is a mystery to me how I could
have been free of cancer at National Jewish Hospital, and have rampant
cancer in both lungs approximately two months later.*

At each stage of this torturous process of diagnosis, non-diagnosis,
and likely mis-diagnosis, it has been necessary for my family and me
to be pro-active and self-reliant. No one suggested Dr. FFF for the
VATS. That was my choice.*

Dr. FFF recommended Dr. GGG, the chief oncologist at Cedars Sinai
Comprehensive Cancer Center, for further ****ysis and treatment. Dr.
GGG has been a serendipitous choice as my oncologist. He came to the
hospital at Cedars Sinai and interviewed me for a solid hour about my
medical and personal history before accepting me as a patient. He
said, "You are now my patient." He gave me his office number, his
pager number, and his home telephone number. When is the last time
that a physician has spent an hour with you and then has given you his
home telephone number? Recently, I was experiencing difficulty in
breathing. I called the office and did not reach anyone, as it was a
Sunday. So I called his home, and talked with one of his children.
Within two hours he called me back and arranged for oxygen to be
delivered to our home to alleviate my breathing difficulty. And this
was on a Sunday. He is totally committed to his patients.*

I need to pay tribute to my two sons, Michael and Steven, who have
been totally committed to my welfare -- researching alternative
facilities or physicians for evaluation, and then assisting in
bringing me into contact with them. I would not be as far along as I
am today if it were not for Mike and Steve.*

I am now in chemotherapy. Nothing will be known about its
effectiveness until the end of February 2002.*

What can be learned from this process? Be pro-active on your own
behalf. Research the alternatives and then make your own decisions.
Recognize that physicians are not God. They are fallible and they
sometimes give conflicting advice. Make the best choice you can,
secure in the knowledge that you researched the alternatives
thoroughly. If I had to do this over again, I would have gone for the
VATS procedure much earlier, and my treatment would be much further
along. As it now stands, I have cancer in both lungs that needs to be
treated simultaneously.*

I do not know how all of this is going to play out, but my family and
I have done our best to make informed choices, and that is what it
takes; a patient who is willing to be involved, explore the
alternatives, and make a decision. I hope this summary will be of
value to others who have been experiencing pulmonary problems.
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