WITH YOUR PROSTATE CANCER DOCTORS
A GUIDE FOR THE NEWLY DIAGNOSED
PIECE WAS DEVELOPED BY STAN KLEIN WHO GAVE HIS PERMISSION FOR IT TO BE PUBLISHED
HERE. IT IS AVAILABLE IN TWO DIFFEREING FORMATS FOR EASE OF PRINTING. AS A WORD.DOC
AND IN A PDF FORMAT. YOU WILL NEED ADOBE ACROBAT OR
SIMILAR PROGRAM TO READ THE PDF FORMAT FILE.
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
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:
A: Determine the status and severity of your
B: Select the treatment that has the best probability of
curing you and
C: 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 never
the less, list the questions that you should have answers for by the time you
leave his/her office:
YOUR VISIT WITH THE UROLOGIST
is the PSA? Note that a rapid increase in PSA value is usually a warning indication
requiring further investigation (Note 12)
Q -What is
the Gleason Grade? Obtain the two part breakdown. For example is it 3 plus 4 or
4 plus 3 ? (Note 1 )
Q -How many biopsy cores were taken?
What percent of each core was cancerous?
Q - What are the locations of
Q- How close to the margin (Peripheral border of the prostate)
were the positive biopsies ?
Q-What did my Cat Scan indicate ? (Note
Q-What did my Bone Scan indicate ? (Note 9 )
What did my MRI Scan indicate ? ( Note 9)
Q-Do you think
there is any Seminal Vesicle involvement? (Note 10)
Is it possible that I have Transitional Prostate Cancer? (Note 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)
Q - Doctor, what treatment would you
Q -Why do you prefer this treatment?
Q - What are the
side effects of this treatment? (Note 2)
Q - What are
the chances (percent) I will have this/ these side effects?
Q- If I select
surgery, would you recommend nerve sparing for me? (If the doctor says "yes" then
Q- Bilateral (both sides spared) or Unilateral (one side spared)?
How many of these procedures have you done?
Q- Why do you recommend this
Q- Would you recommend I do nothing now, just wait ( Watchful Waiting
Q- Are there any other treatment options appropriate for me? (If
the Doctor. says radiation, then ask :)
Q-Which type of radiation, External
Beam, or Seeds (Brachytherapy ) ?
Q- What are the advantages and disadvantages
of each type?
Q- Regardless of which he suggests, ask why not the other
form of radiation?
Q-What about a combination of both Seeds and External
Q- What are the side effects of each radiation choice?
Are they long term or short term side effects?
Q- 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?
Q- 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.
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. (Notes 10 & 11)
At this juncture
you should inform your urologist that you would like to have a consultation With
a Radiation Oncologist
Q- Which Radiation Oncologist would you recommend?
Does he have much experience treating prostate cancer patients?
he do both External Beam and Seed Implant Radiation?
Q- How long has he
been doing Seed Implant Radiation? How long External Beam Radiation?
this point you should make appointments 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
YOUR VISIT WITH THE RADIATION ONCOLOGIST
you visit the Radiation Oncologist, many of the same questions 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:
Q-What treatment, if
any, does 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)
type of radiation, External Beam, Or Seeds (Brachytherapy) do you recommend?
Regardless of which he suggests, ask why not the other form of radiation?
about a combination of both Seeds and External Beam radiation? (Note
Q- What are the side effects of each radiation choice? (Note
Q- Are they long term or short term side effects?
is the probability of any of the side effects occurring with each one of these
Q-If I select radiation, would you recommend Hormone treatments
with the radiation?
Q-Would you recommend I do nothing now, just wait (Watchful
Waiting ) ?
Q- How many prostate cancer patients have you treated this
If both specialists agree that surgery is best, it probably is.
If both recommend radiation is best, it probably is.
VISIT WITH THE MEDICAL ONCOLOGIST
If the surgeon says surgery,
and the radiation oncologist says have radiation, now is the time to visit a Medical
Oncologist (Note 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
When you visit the Medical Oncologist, many of your questions
may be the same, but again you want his expert opinion.
Q - What would
you estimate are the chances that the cancer is contained within the prostate?
- Doctor what treatment would you recommend?
Q -Why do you prefer this
Q- How many men have been on this protocol or used this treatment?
should repeat many of the questions you asked the other physicians, specifically:
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
(Note11) 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.
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.
cancer is a slow growing cancer. Stay calm and seek the best treatment for you.
Take a few months to explore your options
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 grades, even though the total is 7 in both cases.
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.
(Freezing the prostrate) is another treatment option, but is not done often
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
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.
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.
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.
test was not done, inquire whether one is necessary.
An MRI (Magnetic Resonant Imaging) can frequently detect seminal vesicle involvement.
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)
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 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.
Stan Klein 8/18/01 Rev 7, 4/22/05