Bronchoalveolar Carcinoma -- Learn from our experiences!

Discussion in 'Health and medical' started by Steve, Feb 17, 2004.

  1. Steve

    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.
     
    Tags:


  2. J

    J Guest

    Steve wrote:

    > <snip>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.<snip> 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. <snip>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. <snip>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.

    Hello Steve, I am very sorry to hear about your father.

    I'm reminded of my mother who went from diagnosis to death in 6 weeks. I would not have wanted her
    to have surgery (which is the only possible curative solution for your father's type of cancer) in
    light of her poor health and especially not if she had asthma and a history of cardiovascular
    disease /surgery (as your father did).. We surely would have lost her on the surgery table. Nor
    would I have wanted her to try to go through chemo for the very same reasons.

    Sadly, it almost sounds like the original doctors (who saw the large black mass) were reluctant to
    tell you what I've just said above. Or were perhaps trying to protect him from being surgically
    opened up only to be told the same, nothing to be done about it. Although a little honesty about "go
    live your life as best you can and treat the symptoms" would have been most helpful and saved your
    father from "traipsing all over the country to various doctors", is my nonexpert conclusion from
    your story. Your father was no doubt very proud of you and Michael .

    Thank you for your post. J
     
  3. Pete C.

    Pete C. Guest

    As my doctor once told me about a suspected acoustic nueroma - "medicine is an art, we can never be
    100% certain of anything". I don't blame the doctors for not making a diagnosis based on
    inconclusive evidence. I would blame the doctors for not investigating further to discover what the
    ailment is. On the other hand, a lot of problems simply "cure themselves" when given enough time.
    Doctors know this but never tell their patients.
     
  4. Peter Moran

    Peter Moran Guest

    "Pete C." <[email protected]> wrote in message
    news:[email protected]...
    > As my doctor once told me about a suspected acoustic nueroma - "medicine is an art, we can never
    > be 100% certain of anything". I don't blame the doctors for not making a diagnosis based on
    > inconclusive evidence. I would blame the doctors for not investigating further to discover what
    > the ailment is. On the other hand, a lot of problems simply "cure themselves" when given enough
    > time. Doctors know this but never tell their patients.

    Also ---

    >Dr. BBB, cautioned me about the VATS, saying that it could
    sometimes cause unanticipated side effects for a person of my age.

    We are not told what the age and physical condition of the patient was. Doctors will be less
    enthusiastic about aggressive investigation in the elderly when the diagnostic possibilities don't
    offer much prospect of influencing the outcome. That finally proved the case here.

    Peter Moran
     
  5. Steve

    Steve Guest

    > We are not told what the age and physical condition of the patient was. Doctors will be less
    > enthusiastic about aggressive investigation in the elderly when the diagnostic possibilities don't
    > offer much prospect of influencing the outcome. That finally proved the case here.

    He was 82 at the time of his diagnosis, but one has to qualify that. He was sharp as a tack
    mentally, and until his macular degeneration became too severe, riding a bicycle every day, writing
    text books (a semi-retired college professor), and even playing tennis. I don't buy the argument
    that these doctors "didn't want to give him the bad news." Anyone who talked with him would know he
    would be perfectly able and willing to hear such news, and would want to make his own choices as to
    how to proceed. And, in fact, the National Jewish Center in Colorado said, flat-out -- Good news,
    you don't have cancer.

    I think this truly was essentially a shocking case of droping the ball on the medical front. After
    initially complaining of unusual pulmonary symptoms for months, no one ever even suggested a chest
    X-ray. That only came about as a result of a physical required by their retirement condo facility.

    I have a friend who also has an 80-something father. He also had an unusual mass in one of his
    lungs. It proved operable, and he's now fine, not even requiring chemo. It's a total cop-out to
    claim this saga was due to the doctors realizing there was nothing to be done, and not wanting to
    deliver that news. That's like something out of the Victorian era.
     
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