Good evening all! I’m hoping someone can make sense of a letter I got today from the University of Virginia (UVA), about my AN management since my Gamma Knife treatment in Nov of 2003 (it’s near the end of this posting). UVA’s measurements originally measured the tumor at 1.4 cm. After the treatment it swelled a bit: 11/5/03 to 1.4 cm, 5/10/04 to 1.9 cm, and 10/28/2004 to 2.1 cm.
This is where it things get a bit squirrelly. In April of 2005 they responded saying that “The tumor enhances less homogeneously but does not look significantly changed in size (measuring the diameter of the tumor), however the volumetry suggests an increase in size�…�We consider re-treatment only if the tumor does not start to decrease in 2 years.�
I emailed the hospital asking why they didn’t comment on the size…and they sent a letter stating the size looks unchanged and the volume appeared to be a bit smaller as well. Then they added “It has to be emphasized too that the marginal error of the volumetry method is significant and therefore, is not totally reliable.� Then I got a letter on Nov 23rd of 2005 again saying the tumor did not change (diameter measurement) and that they needed the films with scales to read the volume. Now here is where I’m really confused: Today’s letter stated that the tumor now measures 2.5 cm3 (volume measurement) and they recommend re-treatment or resection by surgery.
Now if volume measurement isn’t accurate why are they judging the tumor treatment by it. According to my records the tumor size hasn’t changed size since October of 2004. The military is happy with the progression of the tumor (stalled growth and signs of necrosis)…but UVA didn’t even mention the necrosis… And how accurate is the measurement of these tumors? The military has a whole different measurement and wanted to do the next MRI in 2 years and monitor it! I wasn’t thrilled waiting 2 years between MRI’s without showing signs of shrinkage of the tumor.
So, I know I need to talk with UVA and find out what’s up. My gut tells me to hold out and have another MRI in May of this year…(which would be 6 months after my last MRI), to see what’s happening and then make a decision. I’d be happy to just stop the growth. I feel fine, other than an increase in tinnitus (from my ear clogging in July of 2005)…any thoughts?
Gary
