We learned so much about being a patient in today's world of medical care. There are so many more options to people and we are more mobile. When one gets a rare diagnosis like we did - kidney cancer, low incidence, not much known about it and reportedly very few options - panic sets in and there can be a knee-jerk reaction to get to an expert and without a moment's delay.  While we are lucky that (1) there are experts out there for all kinds of cancer and (2) there are many modes of transportation to get to these individuals, I think there are some things we learned that having had the benefit of hindsight, we'd have done things a little differently.

Nonetheless, if you are going to "take it on the road" as we did within the community and across the country, we learned some valuable things that can make the whole process easier on everyone.

• Make sure to always have current copies of medical records, particularly physician's summaries, relevant lab reports and scans. Keep the information organized and chronicled in a notebook. This proved to be of tremendous value to us, especially when we got to our last hospital where mom was for three weeks before her death.
• If possible make sure scans can be saved to a disc and make sure that the disc is compatible with the radiology system that is used by the particular medical facilities involved. A call to the radiology departments can usually provide this information.
• Summaries from one physician to the other and/or phone calls between the two to hand-off relevant information are really helpful, particularly to the doctor picking up the case especially if it is complicated. We encouarged this in a number of situations and it really helped cut down on the confusion.
• Many facilities will have a list of documents that are needed. Its good to ask about this if it isn't requested right off the bat. In a number of places we went, they gave us a list. In others we prepared our own set using the guidelines in the bullet above.
• We prepared a month by month timeline of our experience from diagnosis to present when we went to a new care provider. We used a simple table format - month on the left column, experience (tests, followup, surgeries, medication regimen etc.) in the box next to it using bulleting or numbering to organize events. It helped chronicle where we'd been and what was done.
• Read everything and ask questions if something doesn't make sense. Here's where we slipped up a few times and we think it may have cost us signficantly.