Apr 21, 2013 - 2:24 pm
I'm new to the site and finally managed to answer the questions for the "about me" page. Some of it took some thinking. Anyway, I have a question and I suppose I will have to actually wait for final pathology to find the answer, assuming anyone has an answer. :)
One of my surgeons discovered an adrenal nodule during the course of trying to identify an abdominal mass prior to exploratory laparatomy. It was small, at 19-22 mm in size. From Feb, 1997 until Oct, 1999, the nodule did not change in size but did become calcified. On scans through 2006, no changes were detected. A scan in late 2007 had a notation from the radiologist that there was mild enlargement of the mass, but my primary healthcare provider failed to pass along that information to me.
She failed to do a lot of other stuff as I have since discovered and because of failure to order follow up CT scans in the last two years, I now have a very large tumor that is presumed to be primary ACC - adrenocortical carcinoma with involvement of the renal vein and tumor thrombus extending into the inferior vena cava. Extensive surgery is scheduled for next week. The calcified portion of the tumor, presumably what was found on CT in 1999 and was the original nodule found in 1997, has been engulfed by the tumor I now have. The tumor's SUV on a PET scan a month ago was 12.8 so it is definitely malignant as is the tumor thrombus in the renal vein who's SUV is 12.4.
My question is this: Is it possible that the ACC originated in the previously stable and "totally calcified" adrenal nodule found in 1997 or is it more likely that something else started growing from the adrenal gland, became malignant and eventually engulfed the calcified nodule? I've tried some online researching, but am hitting walls. What I've run across thus far indicates that once a mass is calcified, it does not become malignant nor continue to grow. My tumor on last scan was approximately 11.6 x 9.5 x 8.5 cm which is a far cry from the 19-22 mm originallly.
I'm also concerned because I now have a nodule on the other adrenal gland and the surgical oncology team is not recommending removal at this time since it's a PITA (pain in the "insert your fave A word") to live without any adrenal gland. I've done so well with the wait and see what happens approach on the first adrenal nodule. Snort.