A family member was recently diagnosed with stage 4 colorectal cancer. Since a friend has been fighting his wife’s cancer the last few years, I got inspired to start following up the treatment. Without his help I would have a much harder time getting started on this, so I thought I’d share a little bit of how to get started in the hope that it might help someone else.

You need to start off doing some information on the patient and the treatment up until now:

  1. Get a letter of attorney (unless you are the patient)
  2. Get all information on the treatment so far

Letter of attorney

As far as I know, health professionals are not allowed to discuss the patient with anyone but the patient. Set up a letter of attorney simply stating that you are allowed to access all information related to the cancer diagnosis, and get it signed by the patient.

You are probably going to need to use this letter of attorney many times, so scan it snap a picture of it.

Get all information on the treatment so far

Next, we need to ask the doctor/hospital for the full paper trail. In my case I located a PDF form on the hospital web site. Be prepared that this process might take quite some time, in our hospital’s case around 3 weeks. You should be able to speed it up by some active nagging.

You need to be asking for the following:

  • The full journal
  • Radiologist report(s)
  • Pathology report(s)
  • CT (and possibly MR?) images
  • The amount of tissue samples available

See below for more details on each point.

Journal

This contains:

  • Epicrises
  • Dialogs with the doctor and other health professionals
  • Planned treatement
  • Etc.

Radiologist reports

These contain the radiologists analysis of the scans that have been made. For other doctors to evaluate the case, these are very useful.

Pathologists reports

These contain the analysis done of tissue samples. These are also likely to be useful for other doctors to evaluate the case

CT images

I’ve yet to have any use for this myself, but if needed it nice have them ready.

Amount of tissue sample available

There are a myriad of tests that can be performed to examine different aspects of the cancer and, depending on what you find during your research, you might want to do some additional testing that have not been done so far.

These might be tests that are done in other hospitals or even other countries, and in those cases you are likely to need some cancer tissue for them to perform the testing.

Also note that different tests require different amounts of tissue, so even if there’s not enough tissue for some test, there might be enough for others.


With this information on hand, you should have what you need to let someone else have a look at the case. I’ll write about this in the next post.