Before making a treatment decision, there is basic information about your body that you need to have and be familiar with. It starts with copies of all test results and exams for your files. Keep a binder or use a digital cloud service so that notes and test results are handy.
- The information shown here is a good start to help in making a treatment decision. Obviously there will be more information specific to you and you can include that as well. No one should make a treatment recommendation to you without knowing your health information. You or your loved one's doctor should take all of this data into consideration when he/she recommends treatment of any kind.
- You will find that urologists will recommend surgery -- he is a surgeon after all. A radiation oncologist will recommend radiation. The professionals you speak to will recommend what they can offer in house so as not to send revenue (you) away from their facility. Do not let this happen. Take the time to research it. If you check Consumer Reports before buying a car, why wouldn't you put the same care into your body?
- This cannot be stressed enough -- you hire the doctor, you make the decisions. Your doctor is your partner, not your decision maker.
Age makes a difference in considering what treatment is recommended. Think about life expectancy as well as quality of life.
Is there a PSA history available? Preferably results of at least 3 tests -- dates and results. If result is greater than 10, a bone scan is normally recommended. If it is over 20, normally a bone scan and CT scan are recommended. Put the history in date order, one result on each line -- this will help you see any rising trend. If there is a low PSA (4 or less) and a high Gleason Score (8 or higher) -- you should anticipate there may be aggressive disease -- very rare but does happen.
Was the biopsy blind or a 3T MRI guided biopsy? If blind, consider getting a 3T MRI guided biopsy so that the diagnosis is accurate.
How many needles were used -- would be not less than 6 and as high as 24 samples. Each needle should have been placed in a separately marked container so that you know what section of the gland it came from. You need to know how many were "positive" for cancer. For each sample showing cancer, what was the Gleason for each one? It’s also important to know how much cancer (by percentage) in each needle and the overall percentage. This could be expressed as percentage in each needle or percentage in all of them together.
Example: T1c, T2b, etc. This should have been reported at the time of the DRE and perhaps again at the biopsy.
If BPH (prostate enlargement) is reported, it could also be a cause for a high PSA. Is there a history of BPH or has there ever been treatment for it? If so, what drugs or supplements (Saw Palmetto, etc.) were used?
If any prostatitis was reported it could be a reason for a high PSA. Is there a history of prostatitis or was any note of it being present on the biopsy report? Prostatitis can cause an elevation in the PSA. Treatment varies but most can take an antibiotic.
What are the symptoms? Most symptoms related to the prostate are due to prostatitis and BPH. Prostate cancer symptoms are usually bone pain from the spread of the disease to the bone.
Is there a family history of prostate cancer, of breast cancer?
Did the doctor feel anything abnormal during the digital rectal exam? What were his/her comments? Was the gland large? This information should have been reported at the time of the DRE.
How big did the doctor say the gland was? Gland size may affect treatment. This should have been reported at the time of the DRE.
Examples: 3+3=6, 4+4=8 or 3+4=7 -- learn and understand what your Gleason score means. Bone scans are usually recommended after any diagnosis.
This is one of the most important parts, if not the most important part, of the diagnosis. It is absolutely required to be done by an expert! About 50% of the Gleason scores are graded wrong at the local level. This can be a life and death matter so you want to get this right.
Were there bone scans, CT scans, endo-rectal MRIs? What were the results of these tests? What was the extent of the abnormalities shown?
Has there been other treatment for any urinary conditions?