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Posted 2/5/2011 12:21 AM (GMT -5)
On September 8, 2010, I had RRP at Cleveland Clinic, by 12/1/2010 my PSA had fallen to undetectable, and had started around 33.0 before surgery.  Even with that, the Onc surgeon recommended I have RT of bed and pelvis without HT.  Because of the long drive to Cleveland I elected to have it done in Erie.  The Radiation Onc. In Erie, recommended HT along with RT because of lymph node involvement. After checking with surgeon at Clinic I declined to have HT at this time.   The Rad Onc. In Erie has had an MRI of Pelvis, Colonoscopy, and PET Scan done in Erie.  The PET also included  simulation.   They found something questionable at the bladder neck, but the radiologist who read the scan felt it was only inflammation.   The Rad. Onc. Also read the PET and now wants to do a Prostascint Scan.  Which will delay RT for another week.  For those not familiar, the test takes four days, one day to inject nuclear dye, come back in four days for scan.  The scan is PC specific and  University of Google (OUG) says, “If prostate cancer cells have invaded lymph nodes in the pelvis or elsewhere in the body, then the antibodies typically will find them and bind to them… It is also important to note that not all hospitals offer the Prostascint scan and not all doctors that treat prostate cancer believe that the test is that useful or reliable.”

My question is threefold: does anyone know about a Prostascint scan; would my PSA  be elevated if the PC had spread; how much is another weeks delay going to hurt?

At this point I feel that the Rad. Onc. feels offended because I am not taking his advice re: HT, and I am going with RT only. It seems as if he wants to scour my body till he finds that PC cell that will prove him right.  Even though it may not be there.

I may be just a little paranoid, or maybe it is the late hour, but there are a few other remarks the Rad. Onc. in Erie has made that make me feel uncomfortable.  We do have a good insurance plan, and he did remark that “Prostate Cancer is a disease, but it is also a business.” 

As of January 21 my PSA was still undetectable. 


 

Posted 2/5/2011 1:06 AM (GMT -5)
Hi mr bill,

Undetectable PSA after 12-weeks...good news. Gleason 9, SVI and LNI...ouch!

Do you have Dr Patrick Walsh's book "Guide to Surviving Prostate Cancer"? There's a whole section which addresses your situation of locally advanced PC. I have the 2nd Edition of the book, and it's on pages 377-384. If you have this book (many here do; perhaps you do too), then please do read it; if not, let me know and I'll come back and insert some more key quotes.

I'm a little tired now (it's midnight, I don't have my glasses, and maybe I'm not clearly understanding), but as I scan these pages, Walsh is questioning radiation for high Gleason and SVI/LNI. He writes (p 377): ""We found that local recurrence was rare in men who had Gleason scores of 8 or higher, or who had cancer found in their seminal vesicles or lymph nodes during surgery; these men were more likely to have micrometastatic spread of cancer....Thus, the men who were at highest risk for developing a recurrence of cancer were those least likely to benefit from radiation to the prostate bed, and we didn't recommend postoperative radiation to these men."

Walsh's book has a pretty good section on advanced PC and hormone treatments...if you don't already have the book, it might be a good investment.

best wishes...
Posted 2/5/2011 6:12 AM (GMT -5)

Mr. Bill,

My local uro researched the issue and I believe he actually wrote a paper on his findings.  He said the scan just wasn't very reliable and wasn't much better than a coin toss.  He did not recommend a scan for me, in spite of the fact that his treatment center has all new state of the art imaging equip.  My rad onc agreed with my uro.

Carlos

Posted 2/5/2011 7:04 AM (GMT -5)
The Radiation Oncologist was supposed to get back to me on Wesdnesday with results from PET. I had to call him in Friday.  He had several excuses, part of report was blank, radioligist had to go over it again, he had to review it and meet with radiologist.  I really don't think this guy wants to treat me unless I take his suggested HT, and I am really getting paranoid about this.  Now if I call Cleveland back and tell them I want to come there they will probably request a mental evaluation as part of treatment plan.

Casey,  Yes, I do have Dr. Walsh's book.   I have not looked at it yet, but you can bet by the time you read this I will have it open.   I posted the thread yesterday not long after I had heard from my Radiation Oncologist.  Talk about the pits.

Carlos, I do find mixed opinions, findings, etc. at UOG.   In retrospect and Monday morning quarterback I am not sure I made the correct choice.  You should be done now, and I hope everything went well.

Mr. Bill

Posted 2/5/2011 8:06 AM (GMT -5)
.....

Post Edited (zufus) : 2/5/2011 6:25:10 PM (GMT-7)

Posted 2/5/2011 9:03 AM (GMT -5)
The best info I have read is in Snuffy Meyers book. He uses ProstaScint routinely, but is picky about who reads the results and the enhanced imaging used. The original imaging wasn't specific enough and led to the generalization that ProstaScint doesn' offer an advantage. Meyers refutes this.

Carlos, who is your urologist? Are you in the Atlanta area? Mine also wrote a paper several years ago and told me we wouldn't use it at this time.

Mr. Bill, at your risk level I recommend that you gat a really good medical oncologist on the team. You are at risk to mets and that is where the HT can help. My urologist, rad-onc, and medical oncologist decided on a three pronged approach using IMRT, High Dose brachytherapy, and ADT3 HT all together. "Hit it as hard as possible" is their motto. My urologist said he expected positive margins so he wouldn't operate. I finished radiation in December and will have my first round of tests in March.
Posted 2/5/2011 10:41 AM (GMT -5)

Mr. Bill,

A paper on the PCRI web site has an update on prostascint dated 2003.  This is the link in case you missed it:

http://www.prostate-cancer.org/pcricms/node/171.

JNF, My uro is Frank Greskovich in Pensacola.

Carlos

Posted 2/5/2011 10:52 AM (GMT -5)
I had a Prostiscint scan last October at the cancer center affiliated with Washington University Medical School in St. Louis. My surgeon and the radiologist believed the technology for these test has improved a great deal lately and the "false positives" were now only about 10%.

You are correct about the procedure. I went in four days prior to the scan and was injected with a radioactive solution. They gave me a card to carry in my wallet since I probably would set-off detectors in airports, Federal buildings, etc.

Four days later, and the morning after I had to do a bowel cleanse similar to that done for a colonoscopy (but on a smaller scale), I went back for the scan. The scan is done in different phases and takes almost two hours. There are two 45-minute sessions with the camera taking pictures of the abdomen from every angle, and then a 20 minute scan that reminded me of the bone scan. Also, there was an abdominal CT scan that fuses with the Prostascint pictures.

I had the results within a few days and nothing "remarkable" was found.

The reason they said they did this was my PSA had risen to .15 about 28 months post-surgery and they wanted to see if there was any more evidence of recurrence. The radiologist claimed the results did not show anything, particularly remote evidence of spread cancer.

My insurance covered the procedure as they would any other type of test.
Posted 2/5/2011 11:14 AM (GMT -5)
I am a big fan of the patient learning about the disease and reviewing options.  But we only start learning when we are faced with the disease.  The extent of our schooling is less than months before we make major decisions.

These doctors have gone to school for years and years.  They then become surgeons, urologists, oncologists, etc... and practice for years and years.  This is what they do.  It amazes me that with PC, doctors are all over the map.  You would think after 60+ years that doctors (regardless of which one he goes to) could tell Mr. Bill exactly what to do.

Often times, I feel this site is much more aware and educated than many doctors.

Mr. Bill - You don't need a mental evaluation.   Sorry for the rant.

Posted 2/5/2011 11:18 AM (GMT -5)
>>I finished radiation in December and will have my first round of tests in March.<<

JNF -- are you still receiving hormone therapy? 

ed

Posted 2/5/2011 12:11 PM (GMT -5)
....

Post Edited (zufus) : 2/5/2011 6:24:30 PM (GMT-7)

Posted 2/5/2011 12:37 PM (GMT -5)
Mr Bill, I agree with JNF. Get yourself to a top PCa medical oncologist in your area. If you are in Geogia and get find a way to see Dr Myer in Virginia it would be worthwhile. In any event you should get his book on hormone therapy and diet. Best of luck. BB
Posted 2/5/2011 12:56 PM (GMT -5)
I think a visit to Dr. Myers would be a good idea, but expect to pay $1600 up front and not get in until March, April.  I only know this because that is what I'm doing.

 

Posted 2/5/2011 3:24 PM (GMT -5)
 

Yes, so far this has been a long and tedious journey for all of us and our families, both on and off forum. I agree, you would think that after many years of education the doctors might agree on one thing. I did have one of the best medical oncologist in the area, from the Cleveland Clinic, tell me he thought we should hold off on HT until we saw a rise in PSA. The Radiation and Surgical Oncologist at the Clinic agreed. The clinic surgical oncologist then recommended RT. After the Radiation Onc. in Erie recommended HT I contacted surgical onc. In Cleveland who said no HT. I guess I feel like a pawn in the game of PC.

There is a lot of competition for our business here in NW Penna. With Cleveland Clinic 100 miles to the West, Roswell Park 100 miles to the East, the Regional Cancer center, which is run by UPMC, 100 miles to the South. The Rad. Onc. here in Erie even told my wife and I they have two branches in Ireland, which he is in charge of. Now for the real kicker concerning competitive marketing. When you go to Cleveland Clinic most folks take I-90. Right at the intersection of I-79 and I-90 (which is a major east - west highway) is a large billboard, visible to the west bound lane, which reads “If you have Prostate Cancer you should go to Roswell Park.” Keep in mind this is the way most folks travel to Cleveland, and one has to go in the opposite direction to get to Roswell.

I found the paper that Carlos mentioned most informative. It certainly laid the facts out in black and white.

Maybe it is because I have been folded, bent, spindled and mutilated over the past several months. I really do not know how much more I can take. I really just want them to heave me on the table and turn the “machine” on. This Prostascint seems like just one more delay.

　
Posted 2/5/2011 3:30 PM (GMT -5)
Mr. Bill,

Hang in there...


How are you feeling since the RP? Incontinence? (I did hold off on RT few a few weeks until mine got better)

Posted 2/5/2011 3:33 PM (GMT -5)
Jerry,

I cannot believe I have PCA.  I feel good physically.  Incontinence is just about gone. Only a small leak now and then.

Posted 2/5/2011 3:57 PM (GMT -5)
Mr. Bill,

At least you don' have to deal with that.  And I'm glad you are feeling good. 

I'm in Central PA.  My doctors have said no to HT at this time.  Every time I bring it up they seem to not want to hear about it. 

Are you mainly concerned about the side effects of HT?  Or is it that you feel that you are shooting the last bullet at a time where there is no evidence of PC?

 

Posted 2/5/2011 4:11 PM (GMT -5)
I find the differences in use of HT among top self cancer facilities amazing. I am in New England and was treated at Dana Farber. They said that because I was high risk, G8, they wanted me to have 2 years HT with and after SRT. I did have a consultation with Dr Myer last year and settled on 12 months HT. I understand the Docs at Cleveland Clinic are top notch. It just baffles me that there is no "best practice" on the use of HT.
Posted 2/5/2011 4:13 PM (GMT -5)
Jerry,

All the above.  Both side effects and last bullet.  In addition, the oncologists' at Clinic saw no need for HT at this time. I guess I sort of jumped on that horse, as HT seems very frightening. It may be I have not educated myself well enough.

Posted 2/5/2011 4:16 PM (GMT -5)
BB - you are so right.  I cannot wait that long to get in to see Dr, Myer.
Posted 2/5/2011 8:54 PM (GMT -5)
F8

I am on Eligard (six month shot in Oct 2010) and daily Jalyn (Avodart and Flomax). Both my urologist and oncologist want to keep me on this routine for 18 months, so that means two more Eligard shots in April and October.
Posted 2/5/2011 9:42 PM (GMT -5)
JNF -- thanx.  i had my last 3-month lupron shot on sept 14th and i had blood drawn monday and will see the doctor on the 8th for results.

ed

Posted 2/5/2011 9:45 PM (GMT -5)
Does Dr. Myers accept insurance?

BB-- I spoke with folks at Ford Hospital and Umich. They did not recommend HT.

Mel

Posted 2/5/2011 9:52 PM (GMT -5)
Mel, it does amaze me for all the conversations all of us have had collectively on the subject of HT, that the Yes and the No answer probably equal each other, again, leaving the patient to make a tough choice that even the experts can't agree upon.

Won't be a popular opinion, but the "Snuff's" cash up front policy would concern me. The waiting time I can understand, there is only one of him.

David
Posted 2/5/2011 10:18 PM (GMT -5)
Mr Bill,
Prostascint is used to see if you have lymphnode involvement and it is not very acccurrate. Dr Myers sent his pateints to Holland for the Combidex. He used Prostascint before Combidex was available.
Since you already know you have lymphnode involvement why take an inaccurrate test to tell you something you already know?
It is not accurrate enough to use it to individually target infected nodes so the only choice you have is radiation to the pelvic bed or full body radiation. In either case with node involvement HT is recommended with or without radiation. It is very unlikely that radiation alone will control your PC, but it could make HT more effective.
With seminal vessicle invasion there is a very high probability of lymphnode involvement in the lympnodes that were not sampled in surgery because it follows a different path and these nodes are not easily sampled.
The advice to find a top notch medical oncologist that specializes in only advanced PC is excellent advice and travel should be a secondary consideration.
Many speciality doctors do not accept insurance, but this does not mean that you cannot file a claim directly with the insurance company and recoup most of your costs.
Good luck in anything you decide.
JohnT
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