Feb 22, 2014 - 9:31 am
It was early Thurs Morning...about 5:45 AM when, while driving to a neighboring metropolitin area to visit a Doctor...I was thinking...I am driving at this hour to see a Doctor...something must be wrong with me....and there is...Metastatic Kidney Cancer.
For refersher, in January, I was kicked out of the Familial Kidney Cancer study at NIH -- they are reducing thier numbers, and anyone without active cancer (e.g., NED) is being "discharged". They referred me to a local Dr., but I could not find anyone who was a patient of that Dr. From here, and from smartpaients, multiple people recommended one Dr: Dr. Hammers at Hopkins.
Thursday morning, I had a consultation. He spent time with me, he looked over my records, and he answered my questions in language I could understand (I am a geophysicist).
And he will be following me.
I learned how sarcomitoid differentiation makes the cancer more aggressive: basically, the cells do bond as tightly, and the spindly morphology lets them escape...like a fiborous mineral compared with a lattice mineral structure. (it works for me, don't judge).
He also explained how the cancer cells progress: they die off in time, but not on an equal amount. However, a half life might be a good analolgy -- and that would explain why some people (few) get mets after many many years.
And, he explained how I am lucky. He said that, in some people, the mets come in waves -- surges like the first met is quickly followed by many of others. For these, surgery is not optimal. In others (which includes me), you will get individual mets....with those, the optimal treatment is to cut them out. If my disease stays that way, they can manage it with periodic metastectamies.
And I should expect future mets. There is a very low likelyhood that nothing will reappear, but as long as it is one at a time, I should have a decent outcome. So, 5yr survival rate might be high (> 50%), but disease free is low (~20%).
This all makes sense to me, and is consistent with what I have read. I think I like this Doctor.