A Patient's Guide to Managing Hormone-Refractory Prostate Cancer  

Chapter 6. Collect and Organize Your Medical Records


You will be dealing with prostate cancer and its treatment for years. It is impossible to recollect all this information, and you will be questioned about it from time to time. Each time you consult with a new doctor, you will be trotted through the same gamut of questions about your health and the disease.

Further, as you learn more about prostate cancer, you will want to review your status a year ago, perhaps 10 years ago. Unless you have an organized approach to collecting and recording your medical data, you are unlikely to remember much of it. Even worse is the fact that you won’t be able to give all the data to the doctor so that he can make the best treatment decisions with you.

Although each doctor will assure you that his information needs are unique, we eventually learn, in fact, that every doctor collects essentially the identical set of data. Once you know what he wants, you will also know what you need for yourself. And you can collect and keep it, with little difficulty, over the years. This section will explain what you need to keep and how to organize it. With slight adaptation, you may decide to establish a medical file for your spouse as well. Most of the same information is important no matter what the health condition is. (You may even suggest to all your family members that they maintain their own medical records.)

I keep my file for a year in a divider folder, available at office supply stores, with two finger clips at the top of each divider. This gives me 6 sections.

Your medical file will contain the following items:

1. A disease history, called a PCD—for prostate cancer digest.
2. Thumbnail PCD to include with all your medical correspondence.
3. A graph of your PSA for the last few years.
4. A list of all your prescriptions and supplements.
5. All blood and urine tests.
6. Medical reports (scans, surgeries).
7. Medical correspondence and questions.


The PCD – Prostate Cancer Digest

This is the central document of your medical file. It is, simply, a history of your disease, treatments, and status. The example at the end of this section will show you how to prepare this document.

Start with your personal information and a general state of your health, other than the prostate cancer. Then do a chronological listing of the significant events related to the disease. Start with the diagnosis and proceed to the present day.

The diagnosis should include the PSA, how the diagnosis was made (DRE, elevated PSA, etc.), the Gleason Score, and any biopsy results. Note whether there has been any spread outside the prostate gland.

The body of the PCD should address significant highlights, not all the detailed data. When you report a blood test result (other than PSA), give the normal range in parentheses, for example: CEA 7.5 ng/ml (0-2.5 normal). Use abbreviations freely.

Address treatments and outcomes. List significant symptoms. Note changes in treatments.

When describing bone scans, CT’s, MRI’s, excerpt only significant items from the reports of the radiologist. When you consult with a new doctor, most will want to see the report, NOT the film. It is difficult to read a radiograph accurately, and most doctors don’t try. If a new doctor asks for your films, ask if the reports will be sufficient.

A one-page, single-spaced PCD is adequate. At the longest, keep it to no more than a page and a half. By the time you get beyond a page and a half, most doctors will stop reading. The purpose of this exercise is to help your doctor get right to the heart of the problem without having to wade through extraneous detail. The same is true if you should communicate with the HRPCa on-line support list.

It is a common desire of patients to want to provide the doctor with every document and film ever created. A recent comment was “I’ll give him everything, and he can decide what he wants to use.” Unfortunately, the doctor has all our own limitations…he can absorb only so much. If the important facts are hidden in hundreds of pages of records, he will probably miss it. And he will simply ask you the usual questions, ignoring the ton of data you provided. On the other hand, if you provide him with a well-considered, concise PCD, he will immediate recognize you as an informed, helpful patient.
 

Note: When doing your actual PCD, use the complete date -- month/day/year is preferred, but day/month/year is also OK. The actual date is very useful in determining the time between treatments as well as the PSA Doubling Time (PSADT).

Note: This PC Digest is for illustration purposes only and does NOT NECESSARILY suggest a program of treatment that will work for you.  Your battle with HRPCa may follow a very different path.

PC Digest as of 6/8/02
I. M. Apatient, 123 Elm St., Charlottesville, VA 22911
DOB: 5/5/36; age 64
Family history: no PCa in family; no cancer other than minor skin cancers.
Past surgeries: tonsillectomy, appendectomy.
Other health problems: Diabetes
Exercise: light.
Diet: low-fat.

6/90 - Lump identified by DRE; PSA 12; Bx showed cancer; Dx moderately well-differentiated adenocarcinoma; GS 7.
8/90 - RP; margins free of tumor; no spread to pelvic nodes.
6/94 - PSA 16; started quarterly Lupron and Casodex.
7/94 - PSA 0.1.
9/97 - Fractured pelvis; PSA 9.
11/97- PSA 15; Dx HRPC.
1/98- Nuclear scan showed multiple bone mets in prostate bed. CT
and x-ray showed new tumors in soft tissue.
2/98- Tx EBRT; 6,300 cGy to prostatic bed.
3/98 - PSA 0.1.
5/98 - PSA 0.85.
6/98 - PSA 3.2; doubling time 21 days. Bone density scan showed moderate osteoporosis; started Rocaltrol (0.25 mcg) and Fosamax (10 mg).
7/98 - Started PC Spes (6 caps/day
9/98 - PSA 0.98.
1/99 - PSA 5.2; increased PC Spes to 12 caps/day.
9/99 - PSA 33; doubling time 8 months. Pain in hip indicated another break. Scan showed metastatic spread to right ilium (24 sq. in. involvement), plus extension into sacral cavity. TX EBRT to prevent compression of spinal nerve in sacrum; 4,200 cGy to pelvic area.
1/01 - Started on Taxotere, then added Emcyt (the combination worked for ~9 months)
9/01 - Navelbine/Emcyt (no response, so I stopped this after 2 tx’s)
11/01 - PSA 15.
12/01 - PSA 17.
1/02 - PSA 19.
PAP 9.3 (nom. 0.0-4.3)
AP 232 (nom. 45-122)
2/02 - CT shows soft tissue met (“large soft tissue mass involving the
right iliopsoas muscle”). Immediate decision to go to chemo:
carboplatin/Taxol. PSA 75.
3/02 - PSA 36. Added megadose calcitriol; Dostinex, Celebrex.
4/02 - PSA 9.
5/02 - PSA 4. BS showed stable disease. CT showed soft tissue tumor gone. Feel better; no pain.
5/02 - PSA 2. Cycle 5 of chemo completed.

Thumbnail PCD

We’d like to believe that each doctor who sees us remembers every piece of medical data about us. Not possible. Reality is that no one—not even you—remembers test results and details from last year. So, to help your medical team, provide them with the details before they have to ask.

The PCD is a good start. However, you may be corresponding with your doctor between visits. You may be posting questions to the HRPCa on-line support group. In either case, include an excerpt of your PCD as a reminder, so the doctor (and the group members) can provide the most meaningful responses.

Below is an example “thumbnail PCD” excerpted from the one above. Keep it to 10-15 lines. Keep an up-to-date copy in your computer files, and “paste” it into letters and on-line posts to the support group.




Thumbnail PCD as of 6/8/02: I.M. Apatient

6/90 - Lump identified by DRE; PSA 12; Bx showed cancer; Dx moderately well-differentiated adenocarcinoma; GS 7.
8/90 - RP; margins free of tumor; no spread to pelvic nodes.
6/94 - PSA 16; started quarterly Lupron and Casodex.
98-02 - Tx’s include Rocaltrol/Fosamax; PC Spes; RT 4,200 cGy; Taxotere/Emcyt; RT 4,200 cGy; Navelbine/Emcyt.
2/1/02 - CT shows soft tissue met (“large soft tissue mass involving the
right iliopsoas muscle”). Immediate decision to go to chemo:
carboplatin/Taxol. PSA 75.
3/16/02 - PSA 36. Added megadose calcitriol; Dostinex, Celebrex.
5/17/02 - PSA 4. BS showed stable disease. CT showed soft tissue tumor gone. Feel better; no pain.
5/20/02 - PSA 2. Cycle 5 of chemo completed.

Graph of PSA

The most useful piece of information you can provide for your expert and your oncologist is a graph of the last couple of years of PSA values done on a semi-logarithmic chart.

A logarithmic chart may be prepared easily with Excel or Quattro or any spreadsheet. If you are unfamiliar with logarithmic charts, get help from any person who majored in math, engineering or science in college.

Cancer grows by doubling the number of cells in the body. If there are a million cells at a particular time, these will double to two million. If there are 10 million cancerous cells, these will double, in the same period of time, to 20 million. PSA is generally, but not always, a direct reflection of the number of cancer cells in the body. Thus, you can usually assume that, if your PSA doubles in 3 weeks, the tumor burden has also doubled.


 

PSA Chart:  I.M. Apatient – 6/7/02
Date	6/9/01	10/1 /01	11/6 /01	12/3 /01	12/28/01	1/18/02	2/11/02	2/15/02	3/15/02	4/12/02	6/7/02
PSA	12.7	16.7	18.93	27.02	33.5	40.40	60.39	73.59	10.99	3.53	0.29

If you look at the chart during the period from 6/9/01 to 3/15/02, the line is fairly straight. That straight line is characteristic of cancer growth; in other words a straight line on a semi-logarithmic chart means that the PSA is doubling regularly. From 11/6/01 to 1/18/02 the PSA has risen from about 19 up to about 40. Thus, the PSA is doubling in about 2 months; that is the PSADT.

After 3/15/02, the PSA started dropping due to a new chemo treatment. One may calculate the “halving” time, but that does not have quite the same significance as the PSADT. From that drop in PSA, one might estimate that it would continue to drop further.

You can maintain your PSA chart by adding to the right and removing the oldest data from the left.

You doctor will appreciate receiving a regular copy of the PSA chart.

A list of all prescriptions and supplements

It is usually impossible to remember all the prescriptions and supplements that you will be taking. Even more difficult is recalling the doses and why you take each of them. Therefore, it is most useful to prepare a table of the two, similar to the example shown on the following pages.

Each time you see a new doctor, you can simply provide a copy of the table, rather than having the interviewer pick your brain for this long list. You should also provide your oncologist and your expert (as well as the GP) with a copy of the list each time a revision is made.

It may seem obvious, but you should know why you take each of the drugs and supplements on the list. If you don’t know, ask the prescribing doctor. If the supplement is your choice, you should be able to explain what the supplement is doing for you.  Some supplements may conflict with your treatment.  An example is Iron; most folks with a good diet don't need iron supplementation and over-supplementation can "feed" the cancer and cause it to increase.  Another is Green Tea which has been reported to reduce the effectiveness of chemo.  If you don’t know, you should consider stopping that supplement. If you want the onco to prescribe a new drug, you should be able to explain why.

 

List of Prescription Drugs and Supplements - I.M.Apatient - 6/8/02
Rev:  June 8, 2002
No.	Prescription Drug	Dose	Purpose	Comment
1	Zometa	4 mg q 28 iv.  Continue during chemo and suppression phases.	Preserve bone integrity by suppressing osteolytic resorption of calcium. Bone tumor suppression.	Started 4/1/02, after discontinuing Fosamax at 40 mg/day.
2	Calcitriol	40 mcg q 7 (3 weeks on and 1 off, coincident with chemo tx). Stop during suppression phase.	Preserve bone integrity by promoting osteoblastic redeposition of bone calcium. Bone tumor suppression	No identifiable side effects associated with this large dose.  I am still able to tolerate the megadose with no side effects that I can recognize.
3	Dexamethasone	20 mg  p.o. evening and morning before each chemo tx, 3 out of 4 weeks. Plus 20 mg iv concurrent with the 3 chemo doses. Stop during suppression phase.	Suppress allergic reactions. Suppress tumors
4	Taxol/carboplatin	IV dosing on a 4-week cycle. Carbo-5 auc = 420 mg q 28. (Day 1 of 4-week cycle)  Taxol 90 mg/sq m = 190 mg q 7 for 3 weeks, then 1 week off)	Kill PCa.	Also Kytril, Benadryl, Anzamet, Tagamet.  Take occasional Kytril pills for nausea during wk after carbo.  Aside from an overall lack of energy, side effects are limited to PN in toes; control with glutamine and lipoic acid.
5	Neupogen	480 mcg subcut shot, 4-6 days following carbo chemo.	Stimulates the proliferation of WBC which are beaten down by the carboplatin.
6	Lipitor	10 mg q.d.	Reduce high cholesterol	This has dropped my cholesterol back into the normal range.
No.	Prescription Drug	Dose	Purpose	Comment
7	Lupron	Injection every 3 months.	Suppresses production of testosterone.	Will remain on this as long as HRPCa.
No.	Supplement	Dose	Purpose	Comment
1	Vitamin C	500 mg q.d. (stop during chemo)	Antioxidant	Don’t take during chemo dosing
2	Vitamin E	400 i.u. q.d.	Antioxidant, mixed tocopherols
3	Vitamin B, mixed	--
4	Vitamin B-6	250 mg q.d.	Aid metabolism of glutamine	B-6 helps metabolize glutamine
5	Vitamin B-12	5 mg q.d.
6	Glutamine	10 g t.i.d.	Raw material to repair cell damage from treatments and cancer	During chemo tx’s I increase the dose to 10 g t.i.d.
7	Magnesium w/zinc	133 mg q.d.  (none with calcitriol)	Bone integrity and help metabolize glutamine	Don’t take while on calcitriol.
9	Selenium	200 mg q.d.	Suppress PCa
10	Co-Q10	100 mg b.i.d.	Enhance energy production; support healthy metabolism
11	Lycopene	3 daily glasses of tomato, V-8, carrot juice	Suppress PCa; promote overall well-being
12	GLA/DHA – omega-6 and –3 fatty acids	500 mg DHA t.i.d.	Cardiac health.	Source:  LEF – “Super GLA/DHA; 1000 mg”
13	Ocean fish	2-3 servings/week	Cardiac health
14	Creatine	Daily maintenance dose	Restore muscle lost due to T suppression.	“Weightlifter’s supplement”.  Hard to tell if this is really having any effect—too many other factors at work.

Prescription and supplement schedule

Most HRPCa patients take several (some as many as 20!) prescriptions for cancer and other diseases and many take supplements.  It can be very difficult to remember 'Did I already take prescription "x"?' or know when to take which prescriptions and which supplements.  An example is a newer prescription called Zytiga which must be taken one hour before or two hours after a meal.  Consider making a chart of which prescriptions and supplements you take and what time(s) you take them. Make a check mark on the chart each time you take them.  Also, keeping everything in order may be made easier by sorting prescriptions and/or supplements into pill organizers a few days or week or two in advance.  A chart could look something like this:

Blood and urine tests

Keep a copy of every blood and urine test that is run on you. Eventually, you will reach a point in your study that you know what each means. Then you will want to research your own history to see what the numbers have been.

You may have to be assertive in getting copies of these reports from the hospitals and doctors, but you can do it. If you work at it long enough, you should even be able to get the hospital that draws blood to fax a copy of the results to you at the same time the doctor receives his copies.

Once again, remember that you are the one paying the bills and authorizing the insurance.

Major tests

Tests like X-rays, MRI, CT, bone scan, biopsies, etc. are necessary at certain times. However, many of these are uncomfortable, invasive or require medications and may have a risk factor.  Most take several hours of your time and your support group time.  Waiting for results can be stressful. Testing itself is not treatment, but it should influence your treatment decisions.  Testing should be done to: 1) Establish a baseline for comparison with future tests to guide treatment choices at that time or 2) Provide data to guide therapy choices now.  When tests are done for the latter purpose, the results will show one of the following with respect to previous tests:  1) No change, 2) Improvement, or 3) Worsening.  Before subjecting yourself to a major test, ask your doctor "What change to my therapy will you recommend in each of the three possible results?"  If the answer is "No change" or a therapy you are not willing to do, there may be no reason to subject yourself to the test and its risks.

Medical reports and radiography reports

You will definitely have to ask for these reports; they are rarely volunteered. However, you have a right to receive these, and most doctors will respond willingly when asked. By the way, did you know that a doctor is required to write a report every time he performs any surgery? Be sure to get a copy of that report, too.  Many test providers can give you a CD of scan-type tests for no charge if you ask for them.

You may have a difficult time understanding these reports. Don’t expect the doctor to educate on anything except the unusual. Chapter 7 of this booklet will tell you how to educate yourself.

Radiography reports seem to be unusually difficult to understand due to the use of medical terms for the bones and muscles. A dictionary will help here.

Radiography films are usually kept by the hospital so that the radiologist can use them for comparison. This is important because a single film tells very little unless there is another for comparison. Most doctors that you visit don’t really want to see the films, even though they may ask for them. What they really want to see is the report of the radiologist.

Medical correspondence and questions

Keep any correspondence with any of your doctors.

You should also maintain lists of questions that you have about the disease and its treatments. When you visit with your expert, especially, you should go prepared with a list of questions. You should either take notes or tape the conversation so you have accurate information. After the visit, you should be able to write out the answers to each of the questions. You should provide a list of the questions and answers to each member of your medical team.

If you join the on-line support list, all the members are most interested in what you learn from your doctor. Others will share their own lists of questions and answers from their own consultations.



Continue with Chapter 7