Newly Diagnosed??

Suggestions for New Patients

For many men the diagnosis of prostate cancer (PCa) is simply devastating. I’ve seen reactions ranging from denial to panic. I have participated in many PCa support group meetings in the last few years and spent lots of time listening to the newly diagnosed.
My goal in the next few paragraphs is to suggest some questions to answer for yourself, with help from your medical team and others. I have made hyperlinks to new terms and helpful references.

You’ve just been diagnosed with Prostate Cancer…now what?

You may be reading this after you have left your physician’s office with the news. I assume that your physician (urologist) has performed a needle biopsy of your prostate gland. So, take a look at list #1 below to see what information you may be missing. There should be other opportunities to fill in the blanks.

List #1 – What do you know now about your disease?
What were the results of the biopsy? What is your Gleason score?
Did your physician “stage” your cancer for you?
Did he or she tell you about the Partin tables for estimating the chances your cancer is still confined to the prostate gland?
Did he or she recommend a CT scan, bone scan, MRI or other diagnostic test to look for cancer outside your prostate gland?
Do you have a table or graph of PSA measurements from the months (or years) before your biopsy?
What other health issues are you dealing with at present? Drug allergies?

From one patient to another, please, take your time and think carefully about your next steps. We survivors are firmly convinced that good physicians will tell you something about the time period in which you should make a decision on intervention. Rarely must one act precipitously.

Now I understand roughly what I have……what’s the next step?

List #2 – Fitting the treatment to your circumstances
Does it appear your cancer is confined to the prostate gland or not?
How fast is it growing? What is your PSA doubling time (DT)?
Would you like to calculate your doubling time from recent PSA measurements?
Has your physician “restaged” your disease as a result of additional diagnostic scans?
Did he or she explain the distinctions: localized, locally advanced, distant metastasis, etc., and how treatment strategy depends on a good assessment of staging.
What pain or other physical sensations do you have?
Do you feel pressure to do something quickly? If so, why?

Suggestions
If your physician is a male, ask him what he would do in your circumstance and why.
Visit the website of UsTOO, the international umbrella organization for PCa support groups; plug in your ZIP code and check out the monthly meeting schedule of the nearest support group(s) to your home.
Go to one of these meetings as soon as practical; the guys who attend have already been down the paths you’re considering; they can be a valuable resource!
Get a notebook – paper, electronic, whatever you prefer – and begin writing notes for yourself after physician visits, telephone consultations, presentations at support group meetings, etc. The amount of information can easily get out hand if you’re really serious about taking responsibility for managing your disease.
If you feel comfortable with numbers, start keeping tables of blood test results, changes in drug doses, etc. – try to understand what’s going on in your body and take note of any recent changes that might have caused it.

Gathering Information – making a choice

I assume you’ve attended at least one meeting of a support group close to your home, as well as consulted other physicians for second opinions as necessary. If the nearest support group is many miles away or otherwise difficult for in-person participation, call or e-mail a member of the group’s steering committee to make at least a contact. If a finding a physician to give you a second opinion seems difficult, there are ways to find links to physician groups on the web. You could start with “P2P”.

List #3 – Getting a handle on the bigger picture
Are you comfortable with the information you have?
Was it helpful to seek a second opinion?
Have you chosen a provisional treatment strategy? If so, what are the goals: near term growth arrest, “knockout punch”, long term disease management, or other?
Cancer stage, Gleason score, doubling time and others factors can be assessed to determine the risk (high, medium, low) that your disease might return after initial treatment.
What is your risk level now? Does your provisional treatment strategy recognize your risk level?
Do you understand how factors such as a heart-healthy diet, exercise, specific diet supplements, and other lifestyle changes can help the body resist the growth of prostate cancer cells?