Sometimes it’s in an email, with a worrying subject line. I’ve found the most worrying subject line is just someone’s name. Other times it’s a phone call, the seriousness of which is immediately revealed in the tone of the caller’s voice. There are times when it just comes up in a random run-in with a friend or acquaintance. A bad diagnosis.
It doesn’t have to be life or death but it has consumed this person’s every waking thought. And of course, they’ve been on the internet, reading everything from “survivor” blogs, alternative health sites and mainstream sites such as WebMd.com and Mayoclinic.com. It’s made them crazy, confused and panicky.
Many times, off the top of my head, I can’t give them an immediate answer. It’s out of my field of expertise. Or I just want to make sure I am aware of the latest developments in that particular field. I tell them to take a deep breath, that they have some time to make a decision, no matter how serious the issue. Yes, they should get a second opinion, and they should check with their insurance company about how to go about that.
If the diagnosis is cancer, I tell them to check if they’ll be able to go to the top cancer center in their area (and I tell them the name of the center) for treatment or at least for that second opinion.
No matter the diagnosis, a lot of research needs to be done before that second-opinion visit. I am happy to do this for them but for many people, knowledge bestows a measure of control. So usually we do the research together. Not only is it vital to understand the diagnosis, but being as well-informed as possible will maximize the benefits of that second-opinion visit. They will know where the gray areas lie (and there are always gray areas), the latest promising but perhaps controversial treatments being researched, and the ramifications of not treating. The last is always a very important question to ask – what if I decide to do nothing?
In terms of research, I recommend http://www.webmd.com and http://www.mayoclinic.org/ for very preliminary understanding. Beyond that, it’s best to go to the source most health care providers use, including myself. It’s non-biased and has the very latest research. In the past, it was extremely expensive for an individual. Providers have access through their electronic medical record software or as a standalone through a group practice subscription. There is a free basic patient information option and you can start there, but for the kind of research I recommend, you will need to subscribe. Luckily, now you can subscribe for a week for $20.00 or a month for $53. http://www.uptodate.com/home/uptodate-subscription-options-patients (Note: I currently have no affiliation or financial dealings with any of the websites mentioned.)
Then it’s always a waiting game, and that’s the worst part. For the appointment, for new tests, for test results. I don’t make decisions for anyone but I hope my input helps them make the best decisions possible with the current state of knowledge. And that’s really all anyone can do.