Cancelled PET scan

quester1
quester1 Member Posts: 2
edited March 2014 in Lung Cancer #1
I'm just wondering if someone can shed some much needed light for me. Approx. 3 weeks ago my mom had an abnormal chest X-ray. Last week she saw a Pulmonologist who scheduled a bronchoscopy for Dec. 1st. She was also told that she would be called regarding a date for a PET scan. After not hearing anything she called the specialist's office and was told by the receptionist that the Dr. had ordered her PET cancelled. No explanation given. That is until my husband, a physician, called. He was told that the PET was cancelled because the tumor is inoperable. My mom hasn't even got the results back from her scans yet, let alone had a bronchoscopy! This is as much information as any of us have been given. None of this is making sense to me and I am so frustrated and confused I can hardly stand it. How can it already be deemed inoperable and wouldn't a PET scan be necessary to determine the type and stage of cancer? Any suggestions on how I deal with such poor communication and be an advocate on behalf of my mother?

Comments

  • BILL914
    BILL914 Member Posts: 21 Member
    #2
    This does sound unusual. In my case, a chest x-ray showed a mass in my left lung. I was referred to a Thoracic surgeon who wanted to do a bronchoscopy. I was not comfortable with this surgeon so I took copies of my x-ray to what I considered to be the best I could find in Boston. I ended up having the bronchoscopy at Brigham and Womens Hospital and then hooked up with the Dana Farber Cancer Institute. The two coordinated my care. The next step was a PET Scan. I was then staged with non small cell lung cancer - stage 3A. At first, the doctors said they would not operate. I went for 6 weeks of daily radiation and 7 weekly chemo treatments. When that was all done, the doctors were pleased with how I responded and changed their mind to operate. The operation (removal of left lung) went fine and I am doing well. It has been almost a year. I think what I am suggesting is that you get a second opinion. Good luck.
  • Plymouthean
    Plymouthean Member Posts: 262
    #3
    Based on my experience with an "inoperable tumor", I would seek a second opinion for your mother. I started with a chest X-ray to find out if there was a mass in my lung. Having determined that indeed there was a mass, I had a bronchoscopy. During the bronchoscopy, they found a tumor, took a biopsy and some photographs. I then had CT scans, MRI's and PET scans, as well as a brain scan. The results of these tests, combined, told the doctors what they needed to know about size, type, stage, etc., of the malignant tumor. I was then packed off to see a thoracic surgeon, to have him evaluate whether I was a candidate for surgery. Based on what the test results told him, I was not a candidate as presented to him, BUT, if the tumor could be shrunk, I might then be a candidate. Long story short, radiation reduced the tumor by 75%, - I had surgery to remove the rest, and I am four years out and cancer free. I am certainly not a doctor, but your mother's doctor's reaction makes no sense to me. Your husband, as a physician, should be able to advise you, but I feel that a second opinion is the place to begin. Best wishes, Ernie
  • Plymouthean
    Plymouthean Member Posts: 262
    #4
    Two similar stories in a row! That's gotta tell you something!! Ernie
  • quester1
    quester1 Member Posts: 2
    #5
    Plymouthean said:

    Based on my experience with an "inoperable tumor", I would seek a second opinion for your mother. I started with a chest X-ray to find out if there was a mass in my lung. Having determined that indeed there was a mass, I had a bronchoscopy. During the bronchoscopy, they found a tumor, took a biopsy and some photographs. I then had CT scans, MRI's and PET scans, as well as a brain scan. The results of these tests, combined, told the doctors what they needed to know about size, type, stage, etc., of the malignant tumor. I was then packed off to see a thoracic surgeon, to have him evaluate whether I was a candidate for surgery. Based on what the test results told him, I was not a candidate as presented to him, BUT, if the tumor could be shrunk, I might then be a candidate. Long story short, radiation reduced the tumor by 75%, - I had surgery to remove the rest, and I am four years out and cancer free. I am certainly not a doctor, but your mother's doctor's reaction makes no sense to me. Your husband, as a physician, should be able to advise you, but I feel that a second opinion is the place to begin. Best wishes, Ernie

    Thank you for your responses. I can't tell you what a difference it makes knowing that others have gotten through this. While I know it isn't maybe completely rational, I think my family initially responded to my mom's diagnosis (incomplete as it is) as a death sentence. Thank you so much for your support and encouragement. As for her Dr., we demanded to see him today, and to our surprise he was willing to see us and very gracious. He explained that her mass has begun to interfere with her airways and involves a pulmonary artery, hence the "inoperable" designation and the decision to cancel the PET. He did say that they would absolutely revist the possibility of surgery, should she respond positively to the treatment. He also moved her bronchoscopy up to this friday, so we'll know by next week exactly what we're dealing with.

    As for being in the dark when I'm married to a doc, it's been a combination of him working too many long night shifts in a row, and being put in the position of seeing her scan and knowing what he knows while still trying to project as much strength and hope as he can. I think it's been a tough place for him to be, and we've all been reeling with this news and it's affected our ability to communicate. I think we're starting to get it together now. Again, thanks so much.
  • CHG
    CHG Member Posts: 34
    #6
    quester1 said:

    Thank you for your responses. I can't tell you what a difference it makes knowing that others have gotten through this. While I know it isn't maybe completely rational, I think my family initially responded to my mom's diagnosis (incomplete as it is) as a death sentence. Thank you so much for your support and encouragement. As for her Dr., we demanded to see him today, and to our surprise he was willing to see us and very gracious. He explained that her mass has begun to interfere with her airways and involves a pulmonary artery, hence the "inoperable" designation and the decision to cancel the PET. He did say that they would absolutely revist the possibility of surgery, should she respond positively to the treatment. He also moved her bronchoscopy up to this friday, so we'll know by next week exactly what we're dealing with.

    As for being in the dark when I'm married to a doc, it's been a combination of him working too many long night shifts in a row, and being put in the position of seeing her scan and knowing what he knows while still trying to project as much strength and hope as he can. I think it's been a tough place for him to be, and we've all been reeling with this news and it's affected our ability to communicate. I think we're starting to get it together now. Again, thanks so much.

    I too strongly suggest that you get a second opinion. I was not sure if I was going to be able to have surgery due to possible lymph node involvement. After 6 weeks of daily radiation and weekly chemo I had surgery an upper right lobectomy. No other cancer was found in the nodes that were removed(20) nor the rib bone that was removed. I had surgery July 1st. I am back at work teaching and doing very well. I had a ct scan in October and it showed no signs of cancer. Please do get a second opinion.

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