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Old 08-01-2011, 07:17 PM   #1
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DX in Michigan

Hi,

I got my PC dx last Friday, and I am struggling through the learning curve.

The facts:

Age 59
PSA July 2010 = 2.04
PSA July 2011 = 2.33

Gross Hematuria. June 2011
I saw blood in the urine off and on for 3 days. (Pretty scary for me, first time I had that experience)
Went to E/R on day 3 and that was the last day I saw any blood in the urine.

Consult with urologist for follow up and to try and figure out what caused the blood in the urine.

Abdominal CT Scan: 'short version'
No acute abdominal or pelvic processes identified.
kidneys and the tubes that lead to the bladder looked ok.
Liver, spleen pancreas and Gall bladder show no significant findings.

Nonspecific diffuse enlargement of the prostrate gland, which measures appx 5.2 cm in the greatest transverse dimension. The enlarged prostrate indents the base of the urinary bladder. A small focus of coarse calcification is seen within the central prostrate gland posteriorly.

Bony structures show no aggressive osseous process or fracture. Multilevel degenerative endplate spurring involves the lower thoracic spine. Mild multilevel degenerative change is suggested of the lumbar spine.

All in all, the CT scan looked pretty good.
++++++++++++++++++++++++++++++++++++++

We did a urine flow test, where I first filled up and then tried to void.
Then they did a quick ultrasound on the bladder to see if I was empty. I was not.

Then the uro inserted a camera up into my bladder to 'take a look'. He saw no sign of cancer, no stones and no blockages.

He also took a look into the prostrate and said that it looked a bit 'raw'.
The uro was pretty certain that the bleeding came from the prostrate.

++++++++++++++++++++++++++++++++++++++++ ++

Trans Rectal Ultrasound with biopsy:

A. Positive for Malignancy
B. Negative for Malignancy

Clinical
Preop: Hematuria, prostatitis
Postop: Not Stated
Procedure: Prostate bx.

Source
A. Prostate needle-biopsy, left; B. Prostate needle biopsy right.

Gross:
A. Submitted in formalin labeled 'LT' are six pale tan cylindrical cores, the longer measuring 1.6 cm in length. Totally submitted in 'A1' and 'A2'.

B. Submitted in formalin labeled 'RT' are six pale tan cylindrical cores, the longer measuring 1.8 cm in length. Totally submitted in 'B1' and 'B2'. RR/mlh

Diagnosis:
A. Left Prostate, Needle Biopsies
-Prostatic adenocarcinoma (Gleason's Grade 3+3=6) involving one of six tissue cores and less than 5% of the tissue submitted
-Neoplasm Focus measures 1.4 millimeters in greatest dimension.
-Negative for perineural invasion.
-Chronic prostatitis

B. Right prostate, needle biopsies
-Acute and chronic prostatitis.
(rjm)

cpt codes
Code CPT Count
000TR 1
88305 2

++++++++++++++++++++++++++++++++++++++

So, here I am, looking for direction and some hope.
I have not yet had 'THE TALK' with my uro.
More tests are scheduled this week. Some blood work, a bone scan and a chest x-ray I believe.
'THE TALK' will be next week, but already I have been burning up the internet.
I am glad I found this site. I have read some very encouraging threads. I can definitely 'relate' to many of the comments made by the newly DX'd.

Anyway, I am looking for a surgeon in Michigan that has a good rep and can handle the DaVinci robot. A real 'artist' is important, as I have read here.

Any input would be appreciated. Any comments on the facts above will be accepted with thanks.

Best wishes to all.
Tom

 
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Old 08-02-2011, 03:51 AM   #2
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Re: DX in Michigan

Tom

I do not understand what has made you to converge to robot surgery. Your diagnosis indicates your case as low risk. PSADT is over 70 months (slow activity), Gleason grade 3 and score 6 are the lowest and the volume of cancer (5%) found in one core out of 12 is more indicative of an indolent type to which active surveillance (AS) may be a better choice. In my opinion you have no reason to rush for a decision.

Radical treatments (surgery and radiotherapy) have risks and side effects attached to them which you may want to avoid. I wound recommend you to research on each treatment deeply before making a decision.
You can read details using a net search engine by typing “Treatments for Prostate Cancer”. Try to get as much information as you can and make a list of questions for your next visit with the doctor.
Surely one should consider that urologists may advice surgery as much as radiologists would advise on radiation. Just do not let anxiety to take over your case and try to educate yourself on the disease.

Prostate cancer is scary but there are many ways to fight it and you will do it well.

Welcome to the board.
Baptista

 
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Old 08-02-2011, 06:09 AM   #3
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Re: DX in Michigan

Hi Tom,

Welcome to the board. Sorry to hear about your prostate troubles.

I fully concur with Baptista's comments. I would also say that you might question the bone scan -- and the chest x-ray if it is meant to look for metastases. With such a low PSA and apparently low-grade PCa, there is virtually no chance that anything will turn up. The current practice is not to scan for mets if the PSA is less than 10, and many feel that a PSA of > 20 is a better cutoff. If you feel you must for peace of mind, that's fine, and the scans are non-invasive and easy, but they truly are not needed.

Because your biopsy is the most important piece of the puzzle, the one thing you should do before making any decision is to have your biiopsy reviewed by an expert in prostate cancer. Your average pathologist is not experienced enough with prostate cancer tissue to grade it with complete accuracy. Places like Bostwick Labs can provide a reliable evaluation. You can request that your doctor have this done, or you can request the slides and send them yourself.

A Gleason 6 cancer is treatable by many methods, all with great success. It would appear from your biopsy that this is a focal cancer, not being widespread. It might even be possible, using laser therapy, (Mayo, Florida) to zap that cancer in place and be done with it. Cryotherapy (freezing) can also handle focal cancer. And of course there's radiation, surgery and active surveillance.

So you are "blessed" with many options, which can make your choice a bit stressful, as there are so many ways to go. But anyway you go should result in an excellent outcome.

Best wishes,
Tom

Last edited by Gleason9; 08-02-2011 at 06:11 AM.

 
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Old 08-03-2011, 03:29 AM   #4
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Re: DX in Michigan

Tom52
My first advice is to avoid the DaVinci Robot for prostate surgery. I recently read an article that it takes on average 1600 prostate operations to become competent on the DaVinci Robot for prostate surgery. Many surgeons have quit doing the robotic procedure on account of the complication rate. I have met several people who had the robotic prostate surgery and all suffered from impotence and incontinence so I believe the outcome is even more dependent on the surgeon than with other surgeries.
I had a failed open RP and then Proton Beam Salvage Loma Linda.
Check out:
Proton Beam Therapy - higher or as high a cure rate basically without side effects such as impotence, incontinence, or bowel problems.
Brachytherapy at a recognized center of excellence.
Conformal Beam Radiation or IMRT at recognized centers of excellence.
Radical Prostatectomy at a recognized center of excellence.
Avoid surgeons who do the surgery once a month or once a week as you need someone who does this everyday. Go to the best hospital you can and don't accept lesser quality because it is nearby.
Check and compare all success and complications data wherever you decide to be treated and there are some heart-rending stories of complications on this board so be aware. My preference is to get treated as early as possible and get it over and done with as that is your best chance of a cure but there are fans of watchful waiting and active surveillance which I am not comfortable with. Not everyone with prostate cancer will die of it and I think some of these "non treatment" options have something to do with cutting health costs but that's your choice.
Best of luck,
Bob

 
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Old 08-03-2011, 06:41 AM   #5
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Re: DX in Michigan

Hi Bob,

If my recollection serves me, that 1600 robotic surgeries figure comes from a recent "broadside" by a HiFu proponent. It is a vast exaggeration for advertising purposes. Not that I'm in favor of nilly-willy surgery. All too many surgeries end up being failures, requiring the patient to undergo further radiation therapy. A more accurate figure would be 500 robotic surgeries, which is still quite high. No one wants to be on a surgeon's learning curve.

That being said, low-volume, focal Gleason 6 cancer would be very unlikely to result in failed surgery, because it is extremely unlikely to have breached the prostate capsule. Still, I would think long and hard before agreeing to at least partial erectile dysfunction and diminished continence and other serious risks of surgery when there are other far less invasive options that promise cure.

Cheers,
Tom

 
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Old 08-04-2011, 02:50 PM   #6
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Re: DX in Michigan

Thanks very much for the encouragement. It means a lot when you are feeling the anxiety. So far, this on-line support group has given me the most hope.

I know that my parents generation would hardly speak of cancer. To hear it from a doctor, meant a death sentence. It is still not a good thing to hear, but today there are many options that our parents never had.

I am getting the bone scan and chest x-ray tomorrow evening.

I am still researching but I get tired of so much reading, and all of the risks for each type of therapy. It seems almost like a crap shoot.

Don't we all want the same basic results?
Get all the cancer removed
Little or no side effects from the treatment
Make sure that the PC will not be coming back

I am trying to get my thoughts in order about how to proceed.
I hope things will become clearer when my uro finally has 'THE TALK' with me.
I cannot wait.

At this point, I am thinking that I want some form of treatment, I just have no clue about what type of treatment to get or what treatment would be the best choice.

I looked at US News & World Report (Health Section) to get hospital and doctor ratings.
The best hospitals for PC that I could figure in michigan and nearby are:

University of Michigan in Ann Arbor or the St Josheph hospital nearby
Cleveland Clinic in Ohio
Mayo Clinic in Minn.

Next item would be to find a doctor to do the job

Then get the scheduling done, the pocedure completed and the healing begun.

I do have one question at the moment. If I do go out of state have a procedure, then go back home, and a problem comes up with a cath, infection or something else, will they want me to go back to the out-of state hospital to get the issue resolved or should I expect the local uro to take care of any 'fallout' ?

Best wishes to all,
Tom

Last edited by Tom52; 08-04-2011 at 02:55 PM. Reason: cleaning up typos

 
Old 08-04-2011, 06:56 PM   #7
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Re: DX in Michigan

Hi Tom,

It's amazing how stressful the decision process can be. We've all had to agonize over unknowns, the worst of which is the true state of our cancer. But picking a treatment and then a doctor to do it is nerve wracking. There are no really good clearinghouses for reliable information.

I hope you realize that, with the slow rate of growth of your cancer, as shown by your PSA increase, you have a lot of time to make the right decision. All the books you read advise, and rightly so, to take weeks or even months to make the right choices.

Speaking of books, there are several worth looking at. Your urologist will likely recommend Surviving Prostate Cancer, by Dr. Walsh, himself a urologist. If you've noticed my recent post titled "Mea Culpa," I recently read the book through. It is heavily biased toward surgery, but is otherwise an excellent reference work. It also is out-of-date, with new studies invalidating some conclusions and showing that other treatments are equally viable.

Three other popular books (and there are many more, as I'm sure you're aware) by medical oncologists are:

Beating Prostate Cancer, by Dr. Myers. Written by a doctor formerly with the National Institute of Health who himself suffered from a challenging case of prostate cancer, this book gives a hefty dose of optimism.

A Primer on Prostate Cancer, by Dr. Strum. He was one of the pioneers of triple hormone therapy. This book provides an excellent, in-depth introduction to prostate cancer, explaining all the tests in detail, with excellent color illustrations.

Invasion of the Prostate Snatchers, by Dr. Scholz, makes the case for active surveillance, where it makes sense. He is quite willing to bring out the heavy guns when it is necessary.

I would say these three books are slanted away from surgery, but they provide a nice balance to the bias found in most books on prostate cancer.

You may think I'm opposed to surgery myself. In fact, I had surgery. Of course, with Gleason 9 cancer, the chances for failure are much greater than for lower grade varieties. I had positive margins and the cancer was contained in the prostate; I had no incontinence and my ED isn't as bad as most folks. I'm really only opposed to surgery when the surgeon should know better -- when it is likely that there will be avoidable positive margins or the cancer has otherwise penetrated the prostate. Anyway, how I feel is pretty much irrelevant to you.

To find the best hospital/doctor for your chosen treatment, it couldn't hurt to come right out and ask folks here and on other forums. There are several prostate cancer forums, some much more active than this one, so ask around. You'll get some input.

As for coming back for post-treatment care, that shouldn't be a problem. Of course, you current urologist will likely decline to treat you if you go elsewhere for your surgery. Still, you can either go to another urologist if you require that kind of treatment, and general practitioners can handle the simple stuff. Medical oncologists can help you if you need further cancer treatment.

Best of luck with this complex decision.

Tom

 
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Old 08-04-2011, 10:08 PM   #8
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Re: DX in Michigan

Another book suggestion:
You Can Beat Prostate Cancer and You don't need Surgery to do it. Robert J. Marckini - before you see the Urologist.

 
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Old 08-04-2011, 10:22 PM   #9
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Re: DX in Michigan

Look at CDH Proton Center in WARRENVILLE, Ill.

 
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Old 08-05-2011, 03:26 AM   #10
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Re: DX in Michigan

Quote:
Originally Posted by Tom52 View Post
Thanks very much for the encouragement. It means a lot when you are feeling the anxiety. So far, this on-line support group has given me the most hope.

..........

I am still researching but I get tired of so much reading, and all of the risks for each type of therapy. It seems almost like a crap shoot.

..........

Best wishes to all,
Tom
Tom (52)

I believe you are in the good truck. Researching and acquiring knowledge about the disease, its treatment and pitfalls.
Your comment;
“…. Don't we all want the same basic results?
Get all the cancer removed
Little or no side effects from the treatment
Make sure that the PC will not be coming back
….”

It is right, unfortunately, many find their PCa in an advanced status when looking for the same outcomes. Earlier status similar to your case has the highest probability of success.
Treatments for early or late cases involve the same principle in “getting free from the cancer” and they are only recommended if success can be expected. However, “Debulking” which used to be routine in the ‘90th is now seen as a wrong choice because risks from treatment outweigh benefits.

Practically all treatments do well in earlier low risk cases. I would recommend you to investigate about their “modalities” (3 types of surgery and 7 types of radiotherapies).

In your case quantifying the risks and the side effects from treatments may be the best way to get into a decision. Surely, after treatment care, financial matters and daily duties (job) and family, are all elements to include in the decision process.
A balanced choice between those items may give you the answer.

Treatment usually includes the period of care after been discharged. Its extent, however is ambiguous and you should inquire about the items and responsibilities included in the “agreement” you will sign with the hospital and doctor. You can always get your local health care giver to be included in the deal.

Wishing you peace of mind.

Baptista

 
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Old 08-05-2011, 08:02 AM   #11
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Re: DX in Michigan

Tom,

A search of this site using the words "Michigan prostate surgeon" brought up a post by IADT3since2000 that mentions Dr. Mennon at Henry Ford Hospital as a top surgeon. Using the same search on another site also mentioned his name with high recommendations from many patients.

Another surgeon spoken highly of was Dr. David Wood at U of M Comprehensive Cancer Center.

There's a lot more recommendations, including ones for oncologists, at least at the other prostate cancer forum, so look around (I'd give the name of the forum but fear being infracted).

Tom

 
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Old 08-05-2011, 08:49 AM   #12
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Re: DX in Michigan

Thanks. that helps.

 
Old 08-07-2011, 03:31 PM   #13
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Re: DX in Michigan

I had the bone scan and chest x-ray last friday. (2 days ago)
The chest x-ray took about 2 minutes. The bone scan took 3 hours including prep.
The scan starts with a small injection of nuclear material.
Then you wait for 3 hours while the body metablises the stuff. The bones are supposed to get it and then they take pictures of the skeleton.
The picture process takes about 15 minutes or so. The bone tech and I had a nice little chat while the machine was doing its work.
Afterward, he told me that he could not interpret the scans, but he had seen many many scans and mine looked clear.
I will wait for the written report and hopfully discuss it with my uro this coming wednesday.

More research on the web helped me decide to go to Henry Ford Hospital in Detroit if the treatment decision turns out to be surgery.
The Vattikuti Urology Institute seems to have it together.

Well, back to the waiting game..........I have not been very good at this game lately.

Best wishes to all
Tom

 
Old 08-09-2011, 09:41 AM   #14
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Re: DX in Michigan

Hi Tom,

I'll extend my own welcome to the Board, but I'm glad you have already received helpful responses. I'll add some thoughts in green to excerpts of your post #6.


Quote:
Originally Posted by Tom52 View Post
...
I know that my parents generation would hardly speak of cancer. To hear it from a doctor, meant a death sentence. It is still not a good thing to hear, but today there are many options that our parents never had.
Have you learned what the ten year prognosis for prostate cancer is for men like you with low-risk case characteristics? In the US, it is virtually 100%! In fact, it is 95% at ten years for men with high-risk case characteristics (like me, now going strong at 11 1/2 years on intermittent hormonal blockade as sole therapy). As you note, this is not our grandfather's disease, or even our father's disease. There has been and continues to be enormous progress.

Quote:
I am getting the bone scan and chest x-ray tomorrow evening.
Tom already touched on this issue, but I want to add some thoughts for you. I can understand the CT scan for general purposes based on your symptoms, but I'm wondering about that bone scan and chest w-ray. I realize you had some bone issues, but they did not seem cancer related. As I understand guidelines from my layman's perspective for scans from the American Urological Association and the National Comprehensive Cancer Network, the cancer bone scan and X-ray workup you got seem quite excessive and contrary to the guideline. I realize at this point that you would rather feel you can trust your doctor (I and probably the vast majority of us felt that way at the start), it's important to realize that many doctors are not practicing in accordance with research, endorsed by official guidelines, showing that bone scans for low-risk patients are virtually useless and a waste of time, money, and patient anxiety. The reason is that a bone scan needs about 10% of bone involvement to detect signs of prostate cancer, and such involvement is extremely unlikely for a patient with your case characteristics.

I'm prepared to eat my hat (and wise enough not to wear one) if your scan turns out positive. I would not mention this issue except that it is a reason for you to view your doctor's recommendations with a note of caution. I am reassured that you are looking for centers of excellence and have already located several.


Quote:
I am still researching but I get tired of so much reading, and all of the risks for each type of therapy. It seems almost like a crap shoot.
I'll just endorse what others have said: for men with low-risk cases, any of the major therapies will likely be curative. However, the huge question, which you really have not faced, is whether you need therapy at all. Tom and Baptista have raised this question, as has Harpman from a negative standpoint, but I want to add some thoughts.

Quote:
Don't we all want the same basic results?
Get all the cancer removed
Little or no side effects from the treatment
Make sure that the PC will not be coming back
No! As of the early years of the past decade, research on Active Surveillance (AS) programs at major centers began to appear in major, highly respected medical journals. The first publication was from the long-running AS series at the U. of Toronto, Sunnybrook, under Dr. Laurance Klotz, a noted surgeon and now arguably the world's leading expert on AS. That was followed by publications from Johns Hopkins in Maryland, by Memorial Sloan Kettering in NYC, by Erasmus University in the Netherlands, by the U. of San Francisco, and by MD Anderson, with other centers also publishing their results. That collection of centers known for their outstanding expertise in prostate cancer put AS firmly on the map of options for low-risk men. Indeed, the leaders of the AS programs are among the world's most highly respected surgeons for prostate cancer. This lead to endorsement of AS as the go-to choice for "very low-risk" patients, and as a prime choice for other low-risk patients, in the respected guidelines published by the National Comprehensive Cancer Network (NCCN). The American Urological Association - the surgeons association - is also enthusiastic about AS for low-risk men.

This is a long way of saying that current expertise feels that low-risk, indolent cancer is better approached by living with it than treating it, for most men. However, this is done under an Active Surveillance approach, with periodic monitoring to ensure the case is indolent. A substantial majority of patients never needs treatment according to the long-running series that have been reported! But even more important, those who turn out to need treatment are caught early before their cases have advanced to the danger point, and treatment for such men is virtually as successful as treatment for men who are treated right away!

What this gives the patient is a solid shot at a lifetime free of the potential complications and side effects of therapy, as well as the associated expense. All of those are well worth it if treatment is needed, but why be treated if treatment is not necessary? AS is profoundly NOT watchful waiting, a passive approach where you wait to see if you truly have aggressive disease by waiting until you have symptoms, which is too late for cure. AS also gives the patient the option of having therapy later. That can be highly advantageous, as therapies continue to improve on an almost yearly basis. For instance, it now looks like giving radiation in just five sessions for low-risk cases works very well, something we were not at all sure of just a year ago. Moreover, researchers for proton beam therapy finally published some solid results in the past year, giving us more confidence in that approach for the long-term. A comparison of therapies was also recently published that shows brachytherapy at centers of excellence to have a virtually perfect cure rate, clearly higher than other approaches, something unknown to most just a few years ago. AS also spares men side effects and complications, including the dollar impact, for key years of their lives.

One point to clarify: AS has not gained respect because it is more cost effective. It gained respect based on solid research that demonstrated impressive results.


Quote:
I am trying to get my thoughts in order about how to proceed.
I hope things will become clearer when my uro finally has 'THE TALK' with me.
I cannot wait.

At this point, I am thinking that I want some form of treatment, I just have no clue about what type of treatment to get or what treatment would be the best choice.
Some of us with low-risk cases will just not be at peace unless we run the gauntlet of a major therapy. You are your own best judge of that, but I hope you will reconsider AS. I believe the Mayo Clinic recently published a favorable paper on AS, so you might want to contact them. Of course, they are also known for expertise in standard treatments, especially surgery, as I recall it. "Invasion of the Prostate Snatchers" is the best book I know of that lays out the suitability of AS tailored to the patient's case characteristics.

It's hard to absorb all the information in the beginning, but it does get easier, and there is often a great premium for finding a course that is right for you. Good luck with this.

Take care,

Jim

 
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Old 08-12-2011, 10:03 AM   #15
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Re: DX in Michigan

Good News!
Well, I got the results of the Bone Scan and Chest x-ray 2 days ago from the uro. All indications are that the PC is localized. He gave us 'the talk' and was very informative about my options. The problem is : I have too many options.

The options presented were: Do nothing, Radiation, external beam and seeds, freezing and cooking.

The uro seemed to lean toward seeds and he has set up a consultation with a radiologist in town. I was leaning toward surgery


I am still kind of leary of the after effects of radiation. From what I understand, the effects don't show up for 6-18 months after treatment has stopped. (Please correct me if I am wrong) Then, if you need additional treatments, your options are limited. My uro said that radiation turns the prostrate into a 'stone' and makes removal difficult if not impossible.

Now, while I wait for the appt w/ the radiologist, I want to start looking at surgeons. I am really at a loss on how to pick a surgeon. I am not in the medical field and the people I do know in the field are reluctant to discuss the bad ones.
Any suggestions on how to pick a surgeon ?

Reports below:
++++++++++++++++++++++++++++++++++++++++ ++++++++++ +++++++++++++
NM Bone Scan Whole Body Panel
AZ

Nuclear Medicine Bone Scan

Clinical History | Prostrate Cancer

Radiopharmaceutical | Technitium-99 MDP, 23.7 mCi IV

Technique | Whole Body bone scan imaging was performed

Findings |
There is a mild curvature noted of the spine. There is a mild degenerative uptake. There is no
scintigraphic pattern identified to suggest metastic disease. Examination is otherwise unremarkable.

Impression |
No scintigraphic evidence of metastic disease
++++++++++++++++++++++++++++++++++++++++ ++++++++++ ++++++
Chest Two View

Chest Two Views|

Clinical History | History of prostrate cancer

Findings |
Mild degenerative changes are present in the thoratic spine. The heart and mediastnum appears unremarkable. The lung fields and remainder of the osseous structures appear unremarkable with no bony metastasis seen.
++++++++++++++++++++++++++++++++++++++++ ++++++++++ +++++++
I take these reports as good news.

Best wishes to all
Tom

 
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