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Don M

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Posts posted by Don M

    PET Scan 2-7-05 Not So Good

    in NSCLC GROUP

    Posted

    I got the report for my PET scan on Wed. 2-11-05, the day before I had my consultation with a fill-in oncologist. My regular oncologist was gone all this week. The following is an excerpt from the radiologist report for the last PET scan:

    FINDINGS: Comparison is to a CT scan of the chest and abdomen obtained at Grays Harbor Community Hospital on January 28, 2005. This had shown a slightly larger left upper lung nodule.

    On the current PET scan, increased FDG uptake is seen in the left upper lung nodule with a maximal SUV of 2.5. There is uptake anterolaterally in the periphery of the left lung and in the chest wall, corresponding to some pleuroparenchymal opacity. This has a maximal SUV of 3.0.

    Mild uptake is seen in the right perihilar region. No definite abnormality is seen there on the chest CT. There is mild uptake in the area of the gastric fundus with a maximal SUV of 2.9. No abnormal uptake is seen in the neck, liver, or pelvis.

    IMPRESSION:

    1. Borderline increased FDG accumulation in the left upper* lobe lung nodule. Given the patient's history of lung cancer, the findings are suspicious for metastasis.

    2. Probable scarring in the anteromedial left lung/ chest wall. The level of uptake could represent malignancy, although the CT appearance suggests some pleuroparenchymal scarring.

    3. Mild right perihilar uptake. This may berelated to atelectasis or focal pneumonia that the patient may have developed since the chest CT. No specific abnormality was seen on the chest CT there.

    *Impression number one refers to upper lobe. It is actually my lower lobe expanded to take the place of the upper lobe.

    Before I had the PET scan and after I had the CT scan, I asked the regular oncologist what the next step would be if the nodule showed uptake. He said that I could do surgery since the nodule growth from 9 mm to 12 mm was the only change that the ct scan showed.

    When I saw the fill-in onc last Thursday, he said,

    “you are probably not going to like hearing this, but at this point it may be best to treat your cancer as a chronic disease and begin chemo. It is not urgent to start right away, but you could if you want to.”

    I replied,

    “I am familiar with the concept of lung cancer as a chronic disease, but I still want to explore surgery as an option.”

    (I am not eager to join the chronic cancer club.)

    The fill in oncologist suggested I go talk to my surgeon to see what he had to say and to determine if I could tolerate the procedure if the rest of my lung were to be removed. The next day, Friday, I saw the surgeon and a pulmomnologist. The pulmonologist determined that I would have plenty of lung capacity after the surgery.

    The surgeon said that the uptake in the chest wall represents increased metabolic activity independent of any scarring because the scarring is old and that the next step would be to have an interventional radiologist stick a needle in my chest wall to see if there is cancer there or not. I find out about the appointment next Tuesday. So, I imagine I will have the test sometime the week after next.

    If the chest wall test is positive, I will be a full-fledged member of the chronic cancer club. If the test is negative, I can proceed with the surgery. The surgeon will sample lymph nodes in my right perihilar area and at the mediastinal area. If they are clear, out comes the nodule. I have not asked the surgeon yet, but I assume he will test the nodule for malignancy before he takes out the rest of my lung.

    I really wonder about impression number one above, using the term "borderline". A SUV uptake equal or greater than 2.5 is supposed to be an indicator for malignancy and it is right at 2.5. Also, I had a benign nodule that was removed at the same site in January of 2004. So, I have a benign history too.

    I did not have adjuvant chemo after my surgery a year ago. If I get a second chance, I will definitely do it.

    Here’s hoping for a second chance at surgery.

    Don M

    It's BAD

    in NSCLC GROUP

    Posted

    Beth: I was saddened to read your bad news. I see that others have given you good suggestions for top notch cancer centers. I think it is perfectly ok for you to feel bad for a while. Just let it pass through you until you get your second wind and then keep on going. I have seen lots of good result posts for alitma. Maybe that would be your next teatment.

    You have my best wishes and prayers.

    Don M

    time table for treatment??

    in MEMBER UPDATES

    Posted

    Hi Rob: It was Oct 31 2003, when my mass was found. I had a bronchoscopy which was inconsclusive, a lung needle biopsy whch was inconclusive and then a Pet Scan which showed a malignancy. By this time it was Dec 1. I did not have surgery until Jan 2, 2004. The waiting is the hardest part.. (sounds like the lyrics to a song). If there is going to be any surgery, the PET scan will help figure that out. The PET scan will show if there is any distant metastasis, in which case there will probably be no surgery and your dad will proceed to chemo. It helped me to get copies of all the reports. I looked the stuff up on line and educated myself a bit. It gave me the sense that I was doing something about it. I tried to get the reports ahead of the appointments to discuss them so I could anticipate what questions to ask and look the stuff up. If your dad signs a release form at the time you have scans done, you can have them sent to you by fax or pick them up at the facility when they are done.

    You and your dad have my best wishes.

    Don M

    Post-op lung function

    in NSCLC GROUP

    Posted

    I had an upper left lobectomy a year ago. I have all my lung function back for most activities. I can walk very fast for a mile on flat ground and not have a problem. I did lose some though. I noticed that before surgery I could walk up very steep (80%)mountain slopes, and although I had to breathe deeply, I could get enough breath. Now, after 50 feet or so, no matter how deeply I breathe, I cannot get enough breath and have to go slower or stop for a bit. Of course, I am 30 pounds over weight, but I was overweight before surgery too. Only 2 more years to retirement.

    Who do I believe?

    in MEMBER UPDATES

    Posted

    Rose: it is encouraging that the nodule has not changed much. If I were you, I would ask for a PET scan. If it is a local cancer, you may be able to undergo surgery in spite of your emphysema. Best of luck to you.

    Don M

    new guy guidance..

    in NSCLC GROUP

    Posted

    Welcome Rob. I am glad you found this place. Hopefully this will be a starting place for you to get some focus. Maybe you can turn your dad on to this site. I remember when I first found out about my cancer, I was skeptical the whole way through, even up to my operation. Educating myself about my cancer helped a lot. It gave me the sense that I was doing something about it and I could know what questions to ask the docs. If you can, attend all the appointments with your dad and take notes. Try to draw up a list of questions before hand. Good luck on your journey with your dad. And remeber, as others have said, this disease is much more manageable these days. One can live with it.

    December Test Results Are In

    in MEMBER UPDATES

    Posted

    I am happy for you Bruce; I have "lesions" and small cysts in my liver too. Each time a different radiologist looks at it, he says "suspicious for metastatic disease". but my onc does not worry about it and neither do I .. they have not changed in a year and a half.

    scan results

    in MEMBER UPDATES

    Posted

    For Barb: Hi Barb, My oncologist ordered the PET scan, but I think he would also do it if I asked first. A surgeon would do it to help in staging, to see if it is worthwhile to perform surgery.

    Nina: if I have to have surgery again, I am going to ask for chemo follow up. My PET scan is Monday. I see the oncolgoist to discuss the results next Thursday. Yay for lexapro! (and prayers).

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