Erik’s Story

Site created on March 12, 2019

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Newest Update

Journal entry by Lisa Seidl

Hi all!

What a different world this is from a couple of weeks ago! It's hard to wrap my head around it. We hope you're all healthy, happy, and practicing your social distancing. ;) We're starting to go a little stir crazy here, and I'm sure so many of you are, too. 

Erik's scan results appointment was scheduled for this past Tuesday (3/17), but due to COVID concerns, Dr. Charlson instead called Erik to give him his results and discuss by phone. The good news is that his primary tumor in his spine looks to be stable with less enhancement. In October, Erik's spine MRI was also stable, but doc noted that the enhancement on that MRI scan was likely due to radiation treatment. Doc said that the continued reduction in enhancement suggests that it was and is probably a correct analysis. 

We were hoping that the luck of the Irish would fully be on our side, but unfortunately, his CT scan results indicate that the nodule in his lung is growing. Due to its tricky location, it has never officially been biopsied to determine that it is, in fact, cancer. From the beginning it was noted to very likely be metastasis, as leiomyosarcoma most frequently spreads to the lungs and given the size/location of the primary tumor. When the nodule shrank during chemotherapy, it lent more evidence to suggest that it was indeed cancer, though it ended up shrinking to a quite small size due to treatment, so it was a negligible concern at the time.

Over the summer, the decision was made to just watch it and see if it grew. Well, since October, it has grown and is now nearly 1cm in size, which is around the size it was at diagnosis. Not particularly large, but given the size during the previous scan in October, there's been a fair amount of growth. Ordinarily, the next step would be to meet with a surgeon for consult, and then remove/officially biopsy the nodule in his lung, thereby removing any (potential) visible active cancer in his body.

COVID puts a kink in the typical treatment plan. Erik is going to sit tight and re-scan in 3-4 months, when able. Right now it is just not advised to attempt to move forward with the consult and surgery,  and likely not possible anyway (Froedtert is preparing for the worst-case scenario for COVID). So, we wait and hope for no/limited growth between now and then. 

We're all doing our best processing the news. So much uncertainty right now.

Wishing you all well, and hoping for the swiftest possible end to COVID-19.
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