Ah, Yes. . .Your Medical Records

BY RALPH BLUM

 

When you are diagnosed with prostate cancer, keeping a folder with all your medical records can be a challenge, especially when you are working with several doctors and addressing different health concerns. But that is also when it is most important, both for your own understanding and safety, and for the use of any specialists you might want to consult for a second opinion.

The following is a list of the variety of information you need to preserve in your medical folder (MMF):

* A Chronological Log of all your PSA tests with dates, and note in the log any general health changes that might impact your PSA.

*  A copy of your urologist's notes that give the results of your Digital Rectal Exam (DRE).

*  A copy of your urologist's Transrectal Ultrasound (TRUS) report that lists the size of your prostate.

*  A copy of your Biopsy Pathology Report. This should provide your Gleason Score, how many cores were positive for cancer, the extent of disease in the cores, and the location of the cancer in the prostate gland.

*  Copies of the radiology reports of any scans (color Doppler ultrasound, bone, CT, MRI), and if available, digital copies of the actual scans.

*  Copies of all information regarding your medical history, including any current (unrelated to the prostate cancer) health problems you may be dealing with, even if they seem minor.

*  A list of all your medications (including the dosages), and a list of any over-the-counter supplements you are taking.

It is also wise to retrieve your biopsy slides from the pathologist and send them to a world-class cancer treatment center, such as MD Anderson, Johns Hopkins, Sloan Kettering, Saint John's, for a second opinion. In fact if you live in a small town or in the country, if possible you should get yourself to a urologist or oncologist specializing in prostate cancer at one of the major centers for a consultation before making a treatment decision.

Keeping this medical record not only gives you a feeling of control, but it is extremely helpful when you consult different specialists. It is also something your partner can help you create. Giving your partner something constructive to do can help her (or him) deal with the worry they inevitably feel over your diagnosis.

I personally feel very strongly about the importance of keeping and organizing all your medical information when dealing with prostate cancer because I didn't do it. And I know how often I and my doctors have found the MMF invaluable support. Truly, we are partners with our oncologists and our urologists. Be an active partner.

 

Keeping a Folder of your Medical Records Gearing Up for Your Prostate Cancer Journey (Part 2)

BY RALPH BLUM

It is very important, once you are diagnosed with cancer, to obtain copies of all your medical records, both for your own understanding, and so that you can make copies for the specialists you might want to consult. The following is a list of the reports and test results that you need to keep in your medical folder.

Start by making a chronological log of all your PSA tests with dates, and note in the log any general health changes or treatments that might impact your PSA.

Then obtain the following:

·         A copy of your urologist’s notes that discuss the results of your Digital Rectal Exam (DRE).

·         A copy of your urologist’s Transrectal Ultrasound (TRUS) report that lists the size of your prostate in grams or cc. It may also indicate other findings that are part of your biology.

·         A copy of your Biopsy Pathology Report. This should provide your Gleason Score, how many cores were positive, the extent of disease in the cores, and possibly other important clinical diagnosis information such as the location of the cancer within the prostate gland. It is also wise to retrieve your biopsy slides from the pathologist and send them to a world-class cancer treatment center, such as MD Anderson, Johns Hopkins, or Cedars Sinai, for a second opinion. In fact if you live in a small town or in the country, if possible you should find a urologist at one of the major centers for a consultation before making a treatment decision.

·         Get copies of the written radiology reports for any scans (color Doppler ultrasound, bone, CT, MRI), and get digital copies of the actual scan if available. These are necessary for any future radiologist who will want to compare them with new scans.

·         Lastly, it is advisable to include in your medical folder copies of all information regarding your medical history, including any current (unrelated to the prostate cancer) health problems, even if they seem minor. Also, a printed list of all your medications (along with the dosages) and any supplements you are taking.

If all this seems overwhelming, ask your partner to help you create a medical folder. Finding out that someone you love has been diagnosed with prostate cancer is a devastating blow. Your partner also feels worried and scared and helpless. Having something constructive to do, like organizing your medical information, can help her (or him) obtain some feeling of control over the prostate cancer.

Creating this Medical Records Folder will save you time and anxiety. Much of what you have read here comes from the advice of my writing partner, oncologist Mark Scholz, and can also be found in more detail in the pages of the Prostate Cancer Research Institute (PCRI) Papers and Newsletters.

Making Sense of the TNM Staging System

BY RALPH BLUM

In my last Blog I described the Gleason grading system, which urologists use to establish the aggressiveness of your cancer based on the pathologist’s analysis of your biopsy. If you are requesting copies of all your medical records (as you should) you may come across a tumor  staging code called the Tumor Node Metastasis (TNM) staging system.  This code is used to describe to doctors information about whether your prostate cancer is localized, regional, or advanced.

The letter “T” in the TNM system refers to the tumor.  Your doctor “stages” the tumor based on how big the tumor nodule feels when he does a digital rectal examination.  For example, information about size, on whether it is in one or both sides of the prostate, and on whether it has gone outside the prostate is communicated by the four categories—T1, T2, T3, and T4.

Subtypes of T1 (T1, T1a, T1b, T1c) or T2 (T2, T2a, T2b, T2c) refer to localized cancer, meaning the cancer has not spread beyond the prostate. Any of the T3 subtypes (T3a, T3b) refer to regional cancer, which means that the cancer extends just outside the prostate and may have gone into the seminal vesicles. T4 has only one category, and refers to cancer that has spread to the bladder and/or to other adjacent areas of the pelvis.

The “N” in the TNM code refers to whether the cancer has spread to the lymph nodes in the pelvis. N0 means it has not spread to the pelvic nodes; N1 indicates that it has spread. If the cancer has spread to the pelvic nodes, it is more likely to move beyond the nodes and into other parts of the body, making it harder to treat.

The “M” in the TNM staging system refers to whether the tumor has spread or metastasized beyond the lymph nodes in the pelvis. M0 means zero metastasis. M1a means the cancer has spread into the lymph nodes beyond the pelvic area. M1b refers to cancer that has spread to the bones. M1c means the cancer has spread beyond the lymph nodes and bones to other parts of the body.

At the initial staging of the cancer, your urologist first performs a digital rectal examination to determine the presence and status of the tumor. If he determines that the cancer is at a very low level perhaps he will not order further tests. But if he suspects that the cancer may have spread outside the prostate gland, he will order a CT scan, an MRI, or bone scan. Cautious or conservative doctors are likely to order all three of these imaging tests regardless of their findings in the DRE. So don’t assume that you may have advanced cancer just because your doctor sends you for a CT scan or MRI.

I realize that all this information is somewhat confusing (It begins to sound like loony runaway variations on the British Secret Service MI5, MI6, SIS and Lord knows what else). However, the fact remains that, by grouping your PSA level, Gleason grade, and TNM stage, your urologist can determine your prostate cancer’s risk level and advise you on your best treatment options.

Bottom line, the more you know the better.  Yours is really the decision that counts so you have to understand what is going on.  You can obtain more information about staging on the PCRI's blue community website at www.pcribc.org.