Post by Allen on Aug 27, 2014 15:10:28 GMT -8
In this section please discuss your experience with putting together a team of doctors, and the best ways you’ve discovered in making sure they all get the latest info about you, and in keeping them talking to one another.
Assembling your team
In the beginning, we all probably started with our primary care physician (PCP) who, perhaps, gave us a DRE, discussed with us getting a PSA test, and referred us to a urologist. The biopsy may have been performed by a different urologist. Then, we may have been referred to a urosurgeon if our first urologist did not do surgeries. Sometimes we were referred to a Radiation Oncologist as well, probably a doctor who does IMRTs only.
In my case, I spoke to two urosurgeons and found a urologist who does not do surgeries. I then spoke to specialists in IMRT, SBRT, brachytherapy and protons. We all quickly learn that we can’t expect a specialist in one therapy (e.g., surgery) to know much about other therapies (e.g., brachytherapy). It behooves us to talk to specialists in every therapy we are interested in. PC may be unique in this regard: with other cancers we visit an oncologist who lays out all the options, if there are multiple options.
I could have talked to even more specialists: surgeons who use different techniques, and radiation oncologists who specialize in LDR brachy, HDR brachy, SBRT, IMRT, IMPT, traditional protons, and various focal therapies. Even after I decided on SBRT, I still had fiducials implanted by yet a different urologist, and continued with my other urologist. I also sought out the services of a psychotherapist. Blood tests were done by outside labs. My imaging was done in-house, but some have it done at separate facilities.
If you have had treatment, your team may widen to include a urologic oncologist, a sexual medicine specialist, a pain management specialist, an endocrinologist, a specialist in alternative medicines, and a dietician. If you have co-morbidities, like diabetes or cardiovascular disease, you will have even more doctors on your team.
Some cancer centers will put together a team for you (e.g., Kaiser or M.D. Anderson), but in some cases you will want to put together your own team. The more advanced your disease is, and the more comorbidities you have, the larger your team gets.
Managing your team
We want to make sure that all or most of our team is kept in the loop as diagnoses and treatments progress. This starts to become a management issue. How do we make sure that everyone on our team who needs to know gets to know?
I think it helps to have a designated person whose job it is to disseminate information. Soon, as electronic health record-keeping becomes mandatory in the US, this job will become a lot easier. Sometimes your PCP or urologist will agree to take on the job, but make sure that it is explicitly stated, so information doesn’t fall between the cracks. Most often, it will be your job.
It is vital that you maintain and keep copies of your own records. Here are some tips, and I hope others will add to them:
• Bring a journal with you to doctor visits. Write down your questions, their answers, what was discussed, and the plan going forward.
• Even better, record the above on a smartphone or tablet, so you will have a searchable and easily transmissible database.
• When you get home, email a note to your doctor thanking him for the meeting, and reviewing what was discussed and agreed upon. Send copies to other members of your team who need to know.
• Try to obtain your copies of all test results via email. Download those files into a separate folder. Forward them to the relevant members of your team.
Assembling your team
In the beginning, we all probably started with our primary care physician (PCP) who, perhaps, gave us a DRE, discussed with us getting a PSA test, and referred us to a urologist. The biopsy may have been performed by a different urologist. Then, we may have been referred to a urosurgeon if our first urologist did not do surgeries. Sometimes we were referred to a Radiation Oncologist as well, probably a doctor who does IMRTs only.
In my case, I spoke to two urosurgeons and found a urologist who does not do surgeries. I then spoke to specialists in IMRT, SBRT, brachytherapy and protons. We all quickly learn that we can’t expect a specialist in one therapy (e.g., surgery) to know much about other therapies (e.g., brachytherapy). It behooves us to talk to specialists in every therapy we are interested in. PC may be unique in this regard: with other cancers we visit an oncologist who lays out all the options, if there are multiple options.
I could have talked to even more specialists: surgeons who use different techniques, and radiation oncologists who specialize in LDR brachy, HDR brachy, SBRT, IMRT, IMPT, traditional protons, and various focal therapies. Even after I decided on SBRT, I still had fiducials implanted by yet a different urologist, and continued with my other urologist. I also sought out the services of a psychotherapist. Blood tests were done by outside labs. My imaging was done in-house, but some have it done at separate facilities.
If you have had treatment, your team may widen to include a urologic oncologist, a sexual medicine specialist, a pain management specialist, an endocrinologist, a specialist in alternative medicines, and a dietician. If you have co-morbidities, like diabetes or cardiovascular disease, you will have even more doctors on your team.
Some cancer centers will put together a team for you (e.g., Kaiser or M.D. Anderson), but in some cases you will want to put together your own team. The more advanced your disease is, and the more comorbidities you have, the larger your team gets.
Managing your team
We want to make sure that all or most of our team is kept in the loop as diagnoses and treatments progress. This starts to become a management issue. How do we make sure that everyone on our team who needs to know gets to know?
I think it helps to have a designated person whose job it is to disseminate information. Soon, as electronic health record-keeping becomes mandatory in the US, this job will become a lot easier. Sometimes your PCP or urologist will agree to take on the job, but make sure that it is explicitly stated, so information doesn’t fall between the cracks. Most often, it will be your job.
It is vital that you maintain and keep copies of your own records. Here are some tips, and I hope others will add to them:
• Bring a journal with you to doctor visits. Write down your questions, their answers, what was discussed, and the plan going forward.
• Even better, record the above on a smartphone or tablet, so you will have a searchable and easily transmissible database.
• When you get home, email a note to your doctor thanking him for the meeting, and reviewing what was discussed and agreed upon. Send copies to other members of your team who need to know.
• Try to obtain your copies of all test results via email. Download those files into a separate folder. Forward them to the relevant members of your team.
