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It is important to be organized to ensure that your doctors have the best record of your medical history. Here is the way I prepare for my medical visits.
For doctors I see at regular intervals, I provide a “Patient Update” for each visit. For most visits that is a simple update to the Patient Update from the previous visit. (I describe the nature of that update later.)
As way of providing a succinct record of my medical history and a current health profile, I provide a comprehensive outline at my first appointment with any new doctor. I recently changed to a new PCP and that “New Patient History (NPH) Information” document included the following preface:
“The following discussion outlines my general health and lifestyle issues for the last 14 years. Prior to that time I have had only minor health issues. Attached are comprehensive CBC (complete blood count), CMP (comprehensive metabolic panel), & PSA (prostate-specific antigen) spreadsheet printouts for the last 17 years.”*
* (17 years is the period for which I have complete lab records and within which my two cancer diagnoses and treatments lie.)
The New Patient History Information document I prepared for my PCP visit included the following:
- General Health Profile – A general introduction of my current health which in my latest iteration to the new PCP included:
- A description of my lifestyle and diet; i.e., 95% vegan and very health conscious diet (started 8 years ago) and daily gym visits.
- Current weight, height and BMI with a historical reference to changes (In my case over the last 13 years).
- A notice of my adherence to an extensive regime of supplements over most of that period. (With reference to a current list to be provided as part of the New Patient History Information package).
- Lifetime Disease Outline – A bulleted listing for each major medical issue since childhood including a general description of each with dates.
- Family Cancer History – Due to the extensive history of cancer throughout the most recent three generations of my family, I provided a bulleted listing by type with relationship and age at diagnosis for those still living and age at death for those deceased.
Note that it is never a good idea to include your relative’s name(s), as they may want their disease history to remain private. (or insurance or other reasons.)
- Detailed Adult Disease History – Since my two cancers are my major medical concern going forward, I provided an abbreviated discourse for each disease that includes:
- date and method of diagnosis, relevant pathology results, and staging.
- treatment history
- current issues/symptoms
- Active/Recent Past Doctor Listing – A bulleted listing of all current (and recent past) doctors with their name, practice affiliation/specialty, and current address.
- Dietary Supplements – Since I take a large number of supplements, many of which do not show up on the listings used for digital records, I provide a list of all current supplements. These are preceded by the following personal qualifier:
“Over time I have come to believe that glycolysis, inflammation, cholesterol, and hormonal imbalances are major contributors to the development and progression of my two cancers. Along with my lifestyle and dietary changes, the supplements I currently take are directed at having a positive effect on one or more of these contributors.”
The current list is numbered and provides the following information for each:
- name of supplement (brand name only where relevant)
- dosage taken
- time(s) of day taken (or # times per week when not taken daily)
- whether taken with/without meals/food or other qualifiers; i.e., only with source food, etc.
I also take a daily scoop of a plant powder mix and list the ingredients and ratio of each component.
- Printouts of 17-year lab history for CBC, CMP, Immunoglobulins, and PSA/Testosterone. When appropriate, I would also include other specialized labs results. These printouts have graphs for key lab components and provide visual tools for tracking trends.
Patient Updates – These are ongoing updates to my medical history for each visit for doctors I see on a regular interval; i.e., currently once a year for PCP, AUS800 implant, and 1 to 2 xfor PCa and CLL oncologists I do not usually provide these updates to my dermatologist or optometrist, but will do an update or bring information to appointments when appropriate.
The sections to the updates change as appropriate. The ones commonly used and a description of each follows:
- Short Introductory Paragraph – One paragraphs describing any changes to my diet and lifestyle and any other general health issues. (or lack thereof)
- Family Cancer History Update – An update of any changes that have occurred since my last visit.
- CLL/PCa Cancer Update – n update to my cancers, mentioning any significant physical changes, current/proposed treatments, indications of progression/regression/stability, and any significant lab results.
- Questions/Requests – A bulleted list of any questions or requests for this specific visit.
- Diet and Supplement Update – Brief commentary noting any major changes and a current list in the same form mentioned for the New Patient History above.
- Printout/Graphs – Same lab results described for NPH above.
I have no idea whether any of this makes its way into my permanent (now digital) files with any of my doctors. I started the written updates when I first started seeing my oncologist for my CLL about 14 years ago. I went to my initial visit by myself and had read that having written questions in advance and taking notes during the visit was very advisable – as it was easy to get off-track and/or forget information covered during appointments. To compensate for this, I prepared a detailed history for my first appointment and updates for all that followed. I cannot say that I got all my questions answered as a result, but that was mostly my fault for not insisting that we go down the list item-by-item. Also, when we are subject to knowing little about our disease at diagnosis, it is common to ask rather naive questions, so it is not completely unexpected that doctors might just skip over such questions and move on to more important topics.That said, and while I have not had any major questions or issues in my last several Patient Updates, I now insist on going down the list and checking each one off as we go. (The only doctor who voluntarily did that sat with his copy of my update and physically checked each one off as we covered it.) The lesson learned is that if we are doing the work to pose the questions and give them to the doctor in written form (and in my case prepare other detailed supportive information), he/she should be appreciative enough of our efforts to graciously address each and every question and/or issue. As always, just my two cents.
I hope this description is helpful. If you have any questions, please feel free to ask them.
In the meantime . . . Be Well –cujoe
Joe A. is retired, 72 years old with 2 seemingly unrelated cancers- CLL & prostate cancer. Also, extensive familial cancer history spanning three generations. Cancer deaths of both parents and two siblings. Other two siblings and two nephews are current off-treatment cancer survivors. He has an active lifestyle with (pre-COVID-19) daily gym workouts, lots of supplements, plant powders, and spices targeting 4 major cancer influencers: inflammation, cholesterol, glycolysis, and hormone balance. His current health / QOL is good to excellent!
Originally published in The CLL Society Tribune Q1 2020.