Questions for Your Prostate Cancer Doctors:
A Guide for the Newly Diagnosed

 
Your Visit with the Urologist | Your Visit with the Radiation Oncologist | Your Visit with the Medical Oncologist

Special thanks to Stan Klein, Boston, MA, for creating this list!

A friend of mine was recently diagnosed with prostate cancer. Needless to say both he and his lovely wife were distraught and stunned. They had an appointment to visit an urologist to discuss the results of the biopsies.

Although the wife had done some research into this disease and the treatments, they were still bewildered and asked me to please accompany them on this visit. As a general rule, it is always good to have someone with you and/or a portable tape recorder. This avoids doubts later on when trying to recall exactly what was said. As a result of this, I've generated a list of items and questions that every person should have when he visits the prostate cancer specialists.

When you entered your doctor's office, you knew your diagnosis was prostate cancer. The pathology report told you that. You are meeting with the urologist to obtain his/her assessment of your situation and to discuss treatment options. Specifically, the purpose of your visit is threefold:

  1. Determine the status and severity of your specific case.

  2. Select the treatment that has the best probability of curing you, and

  3. Select a treatment that offers you the best quality of life after the treatment.

When the doctor makes his opening statement, he will probably have answered a few of the following questions. I will, nevertheless, list the questions that you should have answers for by the time you leave his/her office:

Your Visit with the Urologist

  • What is the PSA? Note that a rapid increase in PSA value is usually a warning indication requiring further investigation 12 

  • What is the Gleason Grade? Obtain the two part breakdown. For example is it 3 plus 4 or
    4 plus 3? 1

  • How many biopsy cores were taken?

  • What percent of each core was cancerous?

  • What are the locations of each biopsy?

  • How close to the margin (Peripheral border of the prostate) were the positive biopsies?

  • What did my CAT Scan indicate? 9 

  • What did my Bone Scan indicate? 9

  • What did my MRI Scan indicate? 9

  • Do you think there is any Seminal Vesicle involvement? 10 

  • Is it possible that I have Transitional Prostate Cancer? 11 

  • What would you estimate are the chances that the cancer is contained within the prostate? (The Doctors use the Partin Tables to make this assessment)

  • Dr., what treatment would you recommend?

  • Why do you prefer this treatment?

  • What are the side effects of this treatment? 2 

  • What are the chances (percent) I will have this/these side effects?

  • If I select surgery, would you recommend nerve sparing for me? (If the doctor says "yes" then ask: Q - Bilateral (both sides spared) or Unilateral (one side spared)?)

  • How many of these procedures have you done?

  • Why do you recommend this option? 

  • Would you recommend I do nothing now, just wait (Watchful Waiting)? 

  • Are there any other treatment options appropriate for me? (If the Dr. says radiation, then ask:)

    • Which type of radiation, External Beam, or Seeds (Brachytherapy)?

    • What are the advantages and disadvantages of each type?

    • Regardless of which he suggests, ask why not the other form of radiation?

    • What about a combination of both Seeds and External Beam radiation?

    • What are the side effects of each radiation choice?

    • Are they long term or short term side effects?

    • What is the probability of any of the side effects occurring with each one of these choices?

    • If I select radiation, would you recommend Hormone treatments with the radiation? 8 

    • I plan to consider my options which may take 4 to 6 weeks. Would you suggest I have a hormone shot in the interim? NOTE: This may affect any new PSA reading before your treatment.

You may also ask this specialist the same questions about whether you should have an MRI or bone scan, or if you have a high PSA, whether you might have Transitional Prostate Cancer. 10, 11

At this juncture you should inform your urologist that you would like to have a consultation with a Radiation Oncologist. 

  • Which Radiation Oncologist would you recommend?

  • Does he have much experience treating prostate cancer patients?

  • Does he do both External Beam and Seed Implant Radiation?

  • How long has he been doing Seed Implant Radiation? How long External Beam Radiation? 

At this point you should make an appointment to see a Radiation Oncologist and also a Medical Oncologist to save time. Visit the Medical Oncologist after the Radiation Oncologist. Each doctor will transfer your records and tests or will give them to you.

When you visit the Radiation Oncologist, many of the same questions you asked of your urologist should be asked, but remember, you are there to obtain his expertise.

Allow this specialist to tell you his analysis of your situation. Then ask the following questions unless his opening statements answered some of them:

Your Visit with the Radiation Oncologist

  • What treatment, if any, does he believe you should have?
    If he recommends a Radical Prostatectomy (surgery), Ask why he believes this?
    If he recommends radiation, proceed as follows:

    • What would you estimate are the chances that the cancer is contained within the prostate? (He too uses the Partin Tables but you want his opinion and interpretation) 

    • Which type of radiation, External Beam, or Seeds (Brachytherapy) do you recommend?

    • Regardless of which he suggests, ask why not the other form of radiation?

    • What about a combination of both Seeds and External Beam radiation? 4  

    • What are the side effects of each radiation choice? 2

    • Are they long term or short term side effects?

    • What is the probability of any of the side effects occurring with each one of these choices?

    • If I select radiation, would you recommend Hormone treatments with the radiation?

    • Would you recommend I do nothing now, just wait (Watchful Waiting )?

    • How many prostate cancer patients have you treated this way?

If both specialists agree that surgery is best, it probably is. If both recommend radiation is best, it probably is.

If the surgeon says surgery, and the radiation oncologist says have radiation, now is the time to visit a Medical Oncologist  7. It is best to see one who sees many prostate cancer cases. Some specialize in Prostate cancer.

You should ask both the urologist and radiation oncologist to recommend a highly qualified medical oncologist.

Your Visit with the Medical Oncologist

When you visit the Medical Oncologist, many of your questions may be the same as above, but again you want his expert opinion.

  • What would you estimate are the chances that the cancer is contained within the prostate?

  • Dr., what treatment would you recommend?

  • Why do you prefer this treatment?

  • How many men have been on this protocol or used this treatment?

You should repeat many of the questions you asked the other physicians, specifically:

  • Chances of having the various side effects short term and long term with any treatment? 

  • Having hormones with radiation? 

  • Combined radiation?

  • Having nerve sparing, bilateral vs. unilateral with surgery? 

  • Watchful Waiting? 

  • A hormone treatment if you have not had one. 

If your PSA is high, ask if you may have Transitional Prostate Cancer 11

Always ask why he prefers choice A to choice B or C? No question is a bad one.

If you are still uncertain after meeting with the three specialists, it is quite customary to obtain a second opinion. A second opinion means visiting another Urologist or another Radiation Oncologist or a second Medical Oncologist, (or all 3), not seeing different specialists.

When visiting any of these doctors, it is a good idea to bring some one with you and even a portable tape recorder to review what was discussed at your leisure.

Prostate cancer is a slow growing cancer. Stay calm and seek the best treatment for you. Take a few months to explore your options.

References:

  1. The Gleason Grade relates to the aggressiveness of the cancer, with 5 being the worst (most aggressive) and 1 being the least , or not very bad. A 4+3 is worse than a 3+4 because it signifies there are more 4 grade cancers in the biopsy than 3 grade, even though the total is 7 in both cases.

  2. Overcoming the side effects from being treated for prostate cancer is usually discussed in great detail at most Prostate Cancer Support Groups. The statistics about incontinence and especially impotence are obtained from the members of these support groups, and is much greater than those found in books or newspaper articles often written with a bias. Remember, every treatment has side effects. 

  3. Cryotherapy, (freezing the prostrate) is another treatment option, but is not done often.

  4. Hot Seeds is another treatment option, wherein higher dose radiation seeds are applied to the prostate for a shorter period of time and then removed, unlike the usual permanent seeds.

  5. The side effects with External Beam Radiation may not only be incontinence and impotence, but may also include rectal damage and bladder damage which may occur years later.

  6. With all other factors being equal, a physician frequently advocates treating you in his specialty, which may or may not be ideal or even appropriate for you. Although most specialists are somewhat knowledgeable about other related specialties, it is usually best to directly consult with each related specialist.

  7. A Medical Oncologist is a doctor who specializes in cancer that has spread to other parts of the body, i.e., systemic disease. He usually treats the patient in more advanced situations, but a medical oncologist who specializes in prostate cancer is a valuable source of information.

  8. Hormones have their own side effects, such as loss of libido, and bone density loss and perhaps hot flashes. However in this case the hormone treatment is for a few months and the hot flashes and libido loss are temporary.

  9. If this test was not done, inquire whether one is necessary.

  10. An MRI (Magnetic Resonant Imaging) can frequently detect seminal vesicle involvement.

  11. Transitional Prostate Cancer is when the cancer is located in the center of the prostate, rather than towards the peripheral area, and usually is indicated by a very high PSA (25, 70 and higher). For example, a PSA of 50 in Transitional Prostate Cancer is usually not as severe as the same reading with Peripheral Prostate Cancer, but the exact correlation is not known).

  12. A rapid rise in a PSA reading, such as 2 or more points in one year, may indicate further testing is called for. Although a PSA may be a low value, such as a 4 or 5, if it was 2 or 3 a year ago, this may be a serious problem because the percentage rise in these examples is huge. On the other hand, though a PSA rise from 8 to 9 is not a blessing, it is not considered as serious. A doubling within a year is considered very serious. PSA values may raise suddenly under certain circumstances such as if an infection or inflammation of the prostate exists, or when a physician palpates the prostate, or shortly after an ejaculation or a bouncy motorcycle ride. These causes can easily be eliminated.

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