Feeling alone

taxmeless1 Member Posts: 7
edited April 2017 in Lung Cancer #1

I had a low dose CT smoker exam as per my request to my GP on 2/15 that showed a 7.2 mm nodule (the local Miami Beach hospital gave a 8 mm round rounded up number that Mayo in Rochester said was 7.2mm). That was followed up with a PetCT on 2/28 that showed a mild max uptake of 1.5 of the nodule and a strong 4 uptake of the Hilar lymph nodes on same side (Miami Beach hospital missed completely the hilar lymph node uptake and didn't learn about it until Mayo found it on review). I took another CT with and without contrast at Mayo on 3/28 and the nodule had declined to 6MM in 45 days ( I placed 7.2mm vs 6mm info in a VDT calculator online to find out that is 42% reduction in volume in 45 days) although the Hilar remained enlarged 1.3mm and 6mm respectively . I originally scheduled for a Broch biopsy of the Hilar lymph node based on my demand but the pulmonologist said since the nodule declined we should wait and that if the Hilar is malignant that surgery was likely out of the question. When I returned home from MN I learned that this would be staged 2a (so long as it hasn't spread outside the local lymph nodes) and surgery is in fact the therapy of choice. I called the pulmonologist at Mayo to discuss this with him. And spent 20 minutes reviewing what I would think he already should of known before he admitted his blatant error. He then consulted a Thoracic surgeon at Mayo and his evaluation is much more draconian. First the Hilar Lymph node biopsy this Friday, then full node evaluation and wedge resection if NEGATIVE? Needless to say I am scared and feel that the medical community has lost my trust since they haven't performed properly in the past even at a top graded national hospital like Mayo in some respects. I feel that even the last Thoracic surgeon is off his reco. I agree with the broch hilar biopsy but if negative I think its premature to go forward with additional surgery since the nodule declined precipitously in volume in 45 days from 1st scan. Granted it was solid with GG attenuation and according to the surgeon spiculated and the pulmonologist irregular ( can anybody read the same report the same?), I was a long term smoker, many (10- 15% I read online) false negatives with biopsy, but the nodule is only 6MM. When I spoke to the surgeon he claimed he saw really no difference in its size or makeup. Although I reviewed the slide with the pulmonologist and it is clearly smaller with 80% of the GG surrounding attenuation disappearing from original scan. What's more he said that two CT scans can have 2MM variations by machine differences. But that is a half truth. He is referring to much larger sized masses, its really a percentage difference and that is why they say a 25% VDT difference is irrefutable evidence. My life depends on the right decisions and time is of the essence. I cant help but think I know more about nodules then these so called professionals. What is this industry doing?


  • Katmar
    Katmar Member Posts: 55
    Hoping your biopsy goes well!

    Hoping your biopsy goes well! I'm new here, but I wish you well!