Home | Contact Us | FAQ | Search & Site Map | Link to Us
Sign In | Join | Other 45 Sites in Network
Home
Discussion Groups
General
GeneralCardiologyVisionDentistryPharmacyLaboratoryNutritionAlternative
Diseases and Disorders
AIDSAlzheimer'sArthritisAsthmaCancerBreast CancerDiabetesEpilepsyGlaucomaHepatitisHerpesLupusProstate BPHProstate CancerProstatitisSinusitisTinnitus

Medical Forum / Diseases and Disorders / Prostate Cancer / November 2007

Tip: Looking for answers? Try searching our database.

After biopsy, next step...treatment of choice

Thread view: 
Enable EMail Alerts  Start New Thread
Thread rating: 
skeptic - 01 Nov 2007 16:45 GMT
Of course that's what most of this group talks about, so I know it's
redundant (and I apologize for posting so many times) but I'm big on
summaries and recaps, etc.
I'm expecting a high Gleason score from my bipopsy for a number of
reasons and am trying to mentally prepare ahead of time for the
consult, as this particular uro is very good and highly respected but
moves rather quickly, if you knwo what I mean.
1)He himself is a surgeon and just does RP's as opposed to anything
robotic so at best he will hand me off to another uro in his practice
to do DaVinci (which is where I'm leaning)....altho I don't believe
that part. uro has much experience in DaVince...my city has only had
one for less than a year.
2)How much of his treatment do I have to follow before he kicks me
out?  For example, can I refuse hormones prior to surgery? Can I
refuse external RT even if that's what he recommends? (and still have
his office work with me?)  Can I refuse a catscan or mri?
3)Is it ok if no matter what his treatment recommendation is I request
that I'd like to have the procedure performed by another
uro...possibly one of the known "national" experts?
For the record, I'm not interested in any of the more exotic
treatments, like freezing, heating, etc., but I might consider
travelling to NY for example to have a surgeon who's done 1,000
DaVinci's work on me.
Sorry for all the questions but understandably, this is the most
nervous time of this journey.....
rosbif - 01 Nov 2007 17:14 GMT
> For example, can I refuse hormones prior to surgery?

I don't think you'd normally be offered them anyway prior to surgery.
Surgeons like the prostate to be plump and ripe, the hormones shrivel
things up a bit.
That's my understanding.

Definitely a good idea to use a surgeon who's had lots of practice,
even if that means traveling.
Leonard Evens - 01 Nov 2007 18:42 GMT
> Of course that's what most of this group talks about, so I know it's
> redundant (and I apologize for posting so many times) but I'm big on
[quoted text clipped - 3 lines]
> consult, as this particular uro is very good and highly respected but
> moves rather quickly, if you knwo what I mean.

Having gone through this sort of thing before, all I can say about that
is that it is impossible to prepare yourself for bad news in advance.
Also, it is pointless because you just get yourself upset without
knowing anything for sure.   It is better not to assume anything and
take things as they come.

> 1)He himself is a surgeon and just does RP's as opposed to anything
> robotic so at best he will hand me off to another uro in his practice
[quoted text clipped - 5 lines]
> refuse external RT even if that's what he recommends? (and still have
> his office work with me?)  Can I refuse a catscan or mri?

No competent surgeon suggests hormone therapy before surgery these days.
 It is sometimes done before radiation therapy.  Whether or not
radiological tests such as bone scans or MRIs are done before surgery
depends on the details of the diagnosis.  If the cancer is moderate
risk, many urologists just skip it.  In fact, for cases discovered early
through routine testing, the likelihood of finding anything in such
tests is very low.   But in some cases, the physician may want a bone
scan to provide a base to compare with if there is a recurrence at a
later date.  If your doctor suggests such tests, he probably has a good
reason, and you would be well advised to follow his advice.  But you can
certainly discuss the matter with him.   Most doctors are willing to do
what the patients wants in matters that are secondary, but, of course,
if you make yourself enough of a pain in the neck, he may suggest you go
elsewhere.  These tests don't pose any dangers, except to your pocket book.

I'm not sure what you mean by RT.  If your surgeon suggests it instead
of surgery, it is probably for a good reason, such as your general
health makes surgery too risky.   Quite good results can be achieved
with RT, so you should make sure you  understand just why he is
recommending it before you reject it.

> 3)Is it ok if no matter what his treatment recommendation is I request
> that I'd like to have the procedure performed by another
> uro...possibly one of the known "national" experts?

Of course the doctor thinks he can do the job just fine, but unless he
is a complete jerk, he should understand why you might want the best
possible surgeon you can find.  More important,  it is your body and you
are to one to decide who is going to cut you open.

As to whether or not you want to try to go to another city to get a
famous surgeon to do the job, consider some of the downsides of that.
First,  you may not be able to get that particular surgeon.  Still, if
you get one of his associates, you may get a very skilled surgeon.   In
addition,  you will have to deal with the issues of traveling to and
from the area, and you may need to have your local urologist do
follow-ups.

If your local urologist is experienced with nerve sparing surgery, you
may not do that much worse with him than you would with one of the
stars.  You should ask him what your odds are with him doing the surgery
and compare with what you might get from the distant surgeon.

Finally,  I'm not sure why you seem intent on one of the robotic
procedures.   You do recover more quickly initially, but I don't think
there is any convincing evidence that you end up better off in the long
run.   It is best to choose a surgeon who is skilled with what he/she
does without being so concerned with just how the procedure is done.

> For the record, I'm not interested in any of the more exotic
> treatments, like freezing, heating, etc., but I might consider
> travelling to NY for example to have a surgeon who's done 1,000
> DaVinci's work on me.
> Sorry for all the questions but understandably, this is the most
> nervous time of this journey.....

I don't know if it is helpful, but let me relate my experience.  I was
diagnosed in 2000 at age 67 with a Gleason 7=3+4, T1C cancer with a PSA
of 4.5.  My local urologist recommended either surgery or radiation.
Had I chosen radiation, he would have happily turned me over to a
radiation oncologist, but I chose surgery because I just wanted the
cancer out, and because the post-surgical pathology report would give me
information not available with RT.   My urologist told me that at my age
and with him as surgeon my chances of permanent impotence were about 50
percent.  He had previously referred me to Walsh's 1995 book, so  I knew
that a "star" surgeon could produce somewhat better results in that
respect.  But my health insurance would not have covered the surgery,
and it would have made quite a dent in my savings to have it done
elsewhere, so I decided it wasn't worth it for a marginally better
chance.  Also, impotence can be treated, so I understood that treatment
didn't preclude continuing an active sex life.

As it turned out, my post surgical pathology report was very promising
and I have an excellent chance of staying recurrence free, as I have
been now for over six years.  I was impotent for 18 months during which
time I  used a pump and my wife and I continued with a few modifications
much as before surgery.   Erections eventually returned---with some
help from Viagra---and my wife and I are doing about as well as can be
expected in that regard for over 70 year olds with a variety of
arthritic complaints and a lot better than many others our age.
Peter - 02 Nov 2007 00:17 GMT
Hello Skeptic,

You are in charge of your body and the treatments you avoid and those you
chose to take. You are the captain of this voyage. The Drs. are your co
pilots. Use them for what they can do for you but remember it is your body
and they can help with technical information but what you do is your choice.
They can help but do not give them free hand in your decision.

In my particular case, I went to a competent uro that was referred by a
family friend. That uro did the biopsy and referred me to a rad Dr. for that
direction's appraisal. Based on the experience level of the first dr and a
nurses opinion of the rad dr, I chose to go with the most experienced
Robotic surgeon possible. I did not go and ask for his permission or even
his thoughts. I called and had the office forward the medical records to the
surgeon. There was no questions by the first uro, probably never need to see
him again anyway. I am not afraid of hurting his feelings, it is my body and
I am going to do what I think is the best. If he doesn't like that, I don't
give a sh.t! There was no questions needed to be asked by the surgeon about
why I didn't have the first Dr do the robotics. I may have said that the
reason I was talking to him was that I wanted opinions from the best, and
most experienced.

Where do you live? NYC can be very accommodating to having this type of
medical treatment done there even for patients that live far away. I live
100 miles away and have few problems making appointments etc. My mom does
live in a suburb 40 min out for some of the first post op travels.

Again, hope my anecdotal experiences help you in your complicated decision.
If I can shed any more light into this deep cave, let me know.

There is no need to be apologetic about your process and the use of this
group. The road maps read here are written by those that have gone through
your same conundrum. Some are very knowledgeable and some have a variety of
perspectives.

Again, Good luck

Peter
plangham@hvc.rr.com
> Of course that's what most of this group talks about, so I know it's
> redundant (and I apologize for posting so many times) but I'm big on
[quoted text clipped - 21 lines]
> Sorry for all the questions but understandably, this is the most
> nervous time of this journey.....
jloomis - 02 Nov 2007 03:25 GMT
I sense your feeling of confusion and "which way to go feeling".
I was there too, and also had similiar questions.....
My scores were not "low either"
PSA was 7 and I think I had 3+5 or........4+3  have to look it up.
I was destined for Radiation......External Beam.
The local Dr. here said that was the best treatment, and I did not know any
better......
I was given Lupron.....Depot
Got ready for radiation...............
Decided to go on and find other Dr.s and get 2nd and 3rd and 4th opinion.
Finally ended up with a "Prostate Cancer Specialist"
I had to drive about 250 miles and it was worth the trip.
I had RP in 1999 (i was 49)
My PSA is less that 0.01 last checked Aug. 07
I do not wet myself a bit, and never did.......even when catheter was
removed.......that is the honest truth.
I may have had a drip....but nothing to worry about......
I do have a good erectile function, and about 75  to 80% and with Viagra, it
is like High School days(25% of 100 mgs pill)
I did lose one set of nerves but the others came back.....It took about 1 to
2 years for nerve function to kick in......

So, get another opinion.
See a Prostate Cancer Specialist!
Have your lab work when you go and write a description of what you have been
told and have done.
Look for a Dr. you can trust and make sure this is his job.
Not a general Urologist...
Let me know if you need any more ideas or support.
Good wishes,
jloomis

You have not recieved your test results yet either so you are running ahead.

> Of course that's what most of this group talks about, so I know it's
> redundant (and I apologize for posting so many times) but I'm big on
[quoted text clipped - 21 lines]
> Sorry for all the questions but understandably, this is the most
> nervous time of this journey.....
Peter - 03 Nov 2007 17:56 GMT
> Of course that's what most of this group talks about, so I know it's
> redundant (and I apologize for posting so many times) but I'm big on
> summaries and recaps, etc.

No need to apologize... been there, needed the summaries and recaps also.

> I'm expecting a high Gleason score from my bipopsy for a number of
> reasons and am trying to mentally prepare ahead of time for the
[quoted text clipped - 7 lines]
> 2)How much of his treatment do I have to follow before he kicks me
> out?  For example, can I refuse hormones prior to surgery?

You are the master of your own plan. You hired the doctor to evaluate and to
provide information. You do not have to think of the dr/patient relationship
as as a contract or a marrage. With all due respect for the drs knowledge,
it is your body and your right to decide on treatments and providers of
those treatments.  The dr may have valid reasons for further tests.  By all
means, explore and find the best treatment and the dr with the most
experience to perform it. I just had the DaVinci proceedure 3 weeks ago. I
didn't want the dr that performrd the biopsy to do the proceedure because of
the fact he only performed ~30 of them. I chose a dr that performed 1000+. I
am happy with the choice, dr, hospital, location, and results (so far).

Age 56 PSA 5.1 Gleason 6 (3+3) T1c,  Robotic Surgery 10/13/07  cancer
contained within prostate Gleason upgraded to 7 Seminal vesicles removed
also. Catheter 9 days - removed 10/22  leaking urine less each day, erectile
responce starting to return

Can I
> refuse external RT even if that's what he recommends? (and still have
> his office work with me?)  Can I refuse a catscan or mri?

Having the most information from those tests may aid you in the decision
process.  The Dr's advice for the test has a reason. It may be for the $$$,
but more likely, treatment options need to be based on evidence of your
individual considerations. The tests you mention are not very invasive and
benifits need to be balanced with the negative effects.

> 3)Is it ok if no matter what his treatment recommendation is I request
> that I'd like to have the procedure performed by another
[quoted text clipped - 5 lines]
> Sorry for all the questions but understandably, this is the most
> nervous time of this journey.....

This is an important portion of your journey in this part of your life. It
is not wrong to have questions and to come to a group such as this. That is
why the NG is here and the information containe is and has been a benifit to
many. Including myself. Thanks to all. What goes around comes around. Being
that I had te same concerns as you, I feel good that I can pass my
experience around a bit. A caveat tho, anecdotal experience is not the same
as scientific data. Caution needs to be exercised. That does not dimenish
the value of my or others experience as it may shed some light on
possibilities.

Good luck on this path. Taking charge and making informed choice is a gift
of life.

Peter
plangham@hvc.rr.com
 
Sign In
Join
My Latest Posts
My Monitored Threads
My Blog
My Photo Gallery
My Profile
My Homepage

Start New Thread
Enable EMail Alerts
Rate this Thread



©2008 Advenet LLC   Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.