Author Topic: This rabbit hole just became deeper...  (Read 5404 times)

chefcrsh

  • New Member
  • *
  • Posts: 12
  • Welcome
This rabbit hole just became deeper...
« on: January 04, 2020, 10:13:38 pm »
So after a second MRI just before Christmas I was to have simulation in preparation for radiation surgery at Mayo. However, when I arrived for my long day of scanning, training and prep, the Rad Onc team decided they would like to delay for 3 more months.

The reason they gave is that on the recent MRI the VS showed up different (from the first); as hyper intense on the T1 scan. As the radiologist stated This is not characteristic of any single lesion. This changes the differential diagnosis and brings the VS diagnosis into question

The plan now is to rescan with some extra parameters in three months and see if they can determine what specifically they are treating.

Anyone experience anything similar?
8mm tumor diagnosed VS 7/2019.
Rescanned at 9mm 12/2019 T1 Hyperintense. Rescanned 6/2020 with fat suppression new diagnosis Lipochoristoma 9mm.
On W&W indefinitely.

juliawilson

  • New Member
  • *
  • Posts: 17
Re: This rabbit hole just became deeper...
« Reply #1 on: February 06, 2020, 02:51:32 pm »
I see that nearly 300 people have read your post, and nobody has responded--as in, none of us has experienced what you have experienced. But it sounds like you are in good hands, with doctors who are not jumping to any conclusions. Please keep us posted as to what the docs eventually figure out.

chefcrsh

  • New Member
  • *
  • Posts: 12
  • Welcome
Re: This rabbit hole just became deeper...
« Reply #2 on: February 15, 2020, 11:17:54 am »
Will do, and thanks.

I have done some Dr. Google research and it turns out in surgery a proportion of AN turn out to be other (mostly benign) tumors upon lab analysis. Even the surgeons upon resection rarely suspect different tumors, showing how rare and difficult this is to diagnose. I guess my only concern is that for certain tumors (Lipoma and Epidermoid for example) radiation isn't effective, so that would limit treatment options to surgery.
8mm tumor diagnosed VS 7/2019.
Rescanned at 9mm 12/2019 T1 Hyperintense. Rescanned 6/2020 with fat suppression new diagnosis Lipochoristoma 9mm.
On W&W indefinitely.