S
Steve
Guest
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.
Ds. FFF recommended Dr. GGG, the chief oncologist at Cedars Sinai Comprehensive Cancer Center, for
further analysis 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.
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.
Ds. FFF recommended Dr. GGG, the chief oncologist at Cedars Sinai Comprehensive Cancer Center, for
further analysis 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.