Have written biopsy results for husband

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Bedelia
New Member


Date Joined Nov 2009
Total Posts : 18
   Posted 11/5/2009 8:04 PM (GMT -6)   
Met with URO yesterday for consult.  I taped the meeting since I knew we could never remember everything.
 
He tested 10 cores, and 2 came back prositive, occupying 40%.  It's left mid and apex; it was the left side that was hard on exam.  He called it low to moderate agressive, and recommended surgery, with seed implants a close second.
 
Said there's a 65% chance hubby would have ED after surgery.  Since he has no problems now with his urine stream, the doc said there's a low chance of incontinence with surgery.  Also, he stated that there's a 35% chance that the post surg biopsy may have more cancer.  At least he's honest.
 
Haven't read up much on the seeds, but he referred us to oncol radiologist.  Haven't heard back from his office yet re the appt., so I'll call personally tomorrow.  If he went for the seeds, Uro said in 2 yrs. hubby would be impotent (I'll have to listen to the tape again re incontinence).  Plus his chances of reoccurence would increase in 15-20 yrs. 
 
I was wondering if anyone here had seed implants who can tell me his experience.
 
The Uro seemed knowledgeable, but really pushed surgery.  He's done 200 da vinci's over the last 4-5 years, and doesn't keep stats.  Is 200 procedures  a lot?
 
Upon the advice of a couple of posters here, I made an appt with Dr. Joseph at Strong (who has done many many more).  Luckily he had a cancellation for Monday, otherwise we wouldn't have gotten in til December. 
 
Neither doctor has heard of the color doppler that has been mentioned here. So that's it in a nutshell.  Does surgery sound the way to go? 
 
You have all been so helpful to me.  I'm trying to do the best thing for my husband.  If it were him alone, he would have signed up yesterday for surgery.  I guess I'm just another nagging wife. wink   
 
 
 
 
 

Age 60, no symptoms
Suspicious DRE 10/9/09
Uro visit 10/14 one side hard
Biopsy 10/23/09
Diagnosed 10/27/09
PSA 1.84
Left Mid and Apex: Adenocarcinoma, GS 3+3,
cancer in 2 of 10 cores occupying 40%


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 11/5/2009 8:18 PM (GMT -6)   
The Gleason 6 is the good news, and the low number of cores. I thnk you have plenty of time to get multiple opinions and make a decsion you can be comfortablw with.

We will help you along the way as a sounding board. Take some deep breaths, and proceed with the information search. I'm sure you've seen the info source contained in the forum.

Good luck.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/5/2009 8:18 PM (GMT -6)   
Bedelia, thanks for posting the results.

Of course, most urologists are surgeons, and of course they would be biased toward surgery. Though that doesnt make it a bad things. Soem of the remarks he made to you sound honest at least, the percentages with the side effects sound believable to me.

Seeding can be a good alternative, you owe it to yourself and your husband to talk to a good Radiation Oncoligist, and see if they feel he meets the correct criteria for seeding. JohnT here, and Tudpock, both had it done and all well versed in the particulars about seeding. I am sure they will reply when they see your post here.

I am an open surgery guy, and be happy to talk to you about that option. Plenty of men here have had robotic surgery, so there will be many opinions on that path.

With your husband's biopsy report, and his age, and assuming he doesnt have any major underlying medical conditions, he should still have a full range of choices ahead.

Please keep us posted.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 11/5/2009 8:26 PM (GMT -6)   
Agree that surgeons are biased toward surgery but good ones refer you to oncologists to get options of both surgery and radiation. Sounds like you are in good hands.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
12 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 11/5/2009 8:35 PM (GMT -6)   
Hi Bedelia, not the news anyone wants to hear.

Others here far more knowledgeable than I will be of more help than I can be, but I'll make two comments,

First, as you can see from my signature below, my PSA was 1.5 and there was some concern that the cancer might be more aggressive than it appeared to be from the biopsy. This was raised with me by a Uro from Mayo and my surgeon. Neither made a big deal of it, but I could tell they were concerned. I don't know if 1.84 would cause the same concern, but it would be worth asking about.

My second comment is a request: Please get the slides reread by a different pathologist. Pathology is an art as well as a science. The first pathology I had said 3 +3, the second said 3 + 4. That's a significant difference. If all your husband has is 3 + 3 it's still cancer, but anything less than a 3 is considered (I was told by a urologist) to be abnormal cells, but not abnormal enough to be called cancer. A "4" is a more aggressive cell. If you get two pathologists agreeing he is 3 + 3, and they have no concern about the tumor volume relative to the PSA, then that's one thing ---- and a good thing as Martha would say. If he has a possible "4" in the mix, and/or there is a concern about the low PSA, then that's another, but that's the same as I am, and I am 100% happy four months after surgery and making plans for my 100th birthday party 33 years from now.

Keep us posted,

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week. 
Feel free to email me at:  sheldonprostate@yahoo.com    


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 11/5/2009 8:37 PM (GMT -6)   
Bedilia,

With a Gleason 6 and only two cores positive this is considered a low grade cancer. ALL Treatment options will result in the same cure rate, surgery, seeds and external radiation. Everyone one will give their opinions, but the facts are the facts.
Seeds may cause impotance in three years, but meds like Vagra are effectve, just as they are for surgery. You husband wll have a much greater chance of permanent incontenence with surgery and will have incontenence for some period of time, usually a few months.
I had seed implants last May, it was a 45 min procedure with no pain and I resumed all normal activities the next day. I had urinary frequency and urgency for about 4 weeks that was very tolorable with FlowMax and did not interfer with any activities. I have absolutely no side affects, zip, nada, and I also had 25 treatments of external radiation.
There are a number of studies comparing seeds to surgery and the only difference is the side affects and the convience of a 45 min procedure vs a couple of days in the hospital, lots of pain, a few weeks of recovery and a few months of varying degrees of incontenence. There is also a much greater chance of complications in any surgery. Other seeders on this site have had the same experience as I did, so my experience is the norm, not the exception.
JohnT
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4156
   Posted 11/5/2009 9:59 PM (GMT -6)   
Dear Bedelia:
 
As JohnT said, with your hubby's stats, it is likely that either seeds or surgery will result in equal cure rates.  I am not surprised that your uro surgeon was promoting surgery and you should not be surprised either.  However, 200 robotic surgeries is on the low side of experienced and I would recommend a more experienced guy if surgery is what you choose.
 
If you reported the conversation correctly, a couple of the things the doctor said are incorrect.  A claim that in 2 years your husband would be impotent is not necessarily true.  The ED rate for seeds is slightly LESS than surgery, according to many studies.  If your husband is performing satisfactorily today, the chances are good that his post-seeding performance will still be good...even in the long term.  If not, Viagra, Cialis or Levitra are generally effective.  Also, the statement that his chances of recurrance are higher with seeds cannot be proven by research...in fact the long term studies show equal cure rates with surgery...as I said previously.  Of course, each patient is different.
 
I am personally an advocate of brachytherapy (seeds) based on my personal experience, my personal research and my reading of many heartbreaking stories of the aftermath of surgery.  So...I am admitedly biased but I do not believe any of my comments on this thread or the ones I provided on your original thread are incorrect.  Please feel free to click the link at the bottom of my signature and you will get a good idea of my experience with seeds.
 
I know this is a difficult time for you...the most stressful time for my wife and I was when we were doing our research, seeing multiple doctors and trying to make an informed decision.  But, if you do your homework, you will be able to reach a decision with confidence.  Yes, you absolutely should listen to your doctors but you must realize that you have multiple choices and, at the end of the day, it is YOU and your husband that must make the call....not a doc no matter how well meaning he or she is...
 
Tudpock
 
 
Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 9/1/09.  6 month PSA  1.4 and my docs are "delighted"!

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 11/6/2009 6:08 AM (GMT -6)   
Bedelia,
Surgeons will nearly always recommend surgery because that is what they know best. I would not be making any decision until I sat down with the radiation guy and got his input. If he recommends radiation ask why he feels it will be the best course. With your husband being 60, relatively low PSA, 2 of 10 positive (albeit 40% of core) time is on your side. 200 robotic surgeries are more than enough to become proficient in the use of the robot providing the surgeon has a great deal of experience in open. My feeling would be give me a guy that's removed 3000 prostates with 200 robotic over a guy that's removed 1000 only by robot. I would be a little concerned that he doesn't keep stats of the results of his patients though..........seems a little unusual. It would seem as though John T is correct------------there are many urologists out there who are saying "what the heck is a Colour Doplar Ultrasound"
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01
PSA August 09 (2 year mark), <0.01


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/6/2009 7:24 AM (GMT -6)   
Bedelia, the advice your are getting - as always, is right on target. I can only add my own personal experience as the wife of a PCa patient.

Like your husband, my John's biopsy showed 2 out of 10 cores positive, with one core being Gleason 3+3 and the other 3+4 occupying 30%. The cancer was only in the right side of the prostate and perineural invasion was identified in the 3+4 core. His clinical stage was T1c.

At diagnosis, John was 58 years old, in excellent health with no other medical conditions. Urologist told us he was a candidate for surgery (robotic as well as open) or radiation. In our case, John wanted the cancer out of him and had decided that surgery would be his treatment choice right in the doctor's office.

John had robotic surgery about 7 weeks after the biopsy. We received the surgical pathology report when we went back to have the staples and catheter removed (9 days after surgery). The final report upgraded John to stage III - PT3a: margins clean, seminal vesicles clean, bladder neck clean but there was a single miniscule extraprostectic extension (EPE) noted which changed the playing field at bit. EPE means that the cancer has invaded tissues surrounding the gland. Fortunately, the surgeon expected this and cut a wider margin than he needed to to obtain a clean margin. The cancer had also invaded the capsule in a few areas but had broken through in only one small area.

A radical prostatectomy is a major operation and, as with any surgery, has its risks. The pluses are that you have a definitive pathology report vs. a biopsy which is a estimate of the disease. The minuses are incontinence and ED for most men, although the duration and severity of these differ greatly among patients.

Our surgeon has performed hundreds of robotic surgeries and even more of the traditional open. He is the head of the prostate cancer division at our local hospital, which is considered a major medical center in Westchester County, NY. He proctors other doctors learning the robot and was trained at Johns Hopkins in Baltimore. We could have gone into NYC to a world-class hospital but the distance and the cost would not have worked for us. We were able to speak with men who had surgery with this doctor and a couple who went with radiation treatment including one who had seeds. The seed guy had no problems with his treatment except that he was told to stay away from small children and pregnant women for a while since the seeds were radioactive. The radiation guys had no major issues.

With any PCa treatment, there is simply no way to know which is going to work the best since the only way we have of knowing whether treatment was successful is through post treatment follow-up. No matter what treatment your husband chooses, he will need to continue PSA testing and regular doctor visits to monitor the situation.

I know that you are getting alot of information and that your brain must be full by now (mine certainly was). I wish you the best, and please keep us posted.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8. One spot on bone scan (clavicle) being investigated. Third PSA taken on October 16 - PSA IS UNDETECTABLE! Next PSA scheduled for early December. Urged not to begin radiation treatment until it's needed (no problem there!).


NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 463
   Posted 11/6/2009 8:03 AM (GMT -6)   
Since you have easy access to a surgeon like Dr Joseph who has well over 1400 surgeries, then I would rather go that route than someone with only 200 done over the last 5 years. Dr Joesph does 10 -12 surgeries every week, so his experience level far exceeds someone who has only done 200 in 5 years.
 
Age 56, Biopsy 6/2007 - PSA 4.5, 2 of 12 with  <5% cancer Gleason 6
Surgery 9/2007 Strong Memorial,  Rochester  NY with Dr. Jean Joseph (1300 plus surgeries)
 Path - Negative margins, cancer in 20% examined tissue, Gleason 6
 Post Op - No ED issues, full erections without drugs,  used 5-7 pads a day for 3 months. Now dry except for stress leaks now and then.
 All post op psa's <.04


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 11/6/2009 8:54 AM (GMT -6)   
Bedelia.
 
You're getting good advice from the professionals and from the forum.
 
Remeber no two PCa situations are ever really the same, there are merely similarities here and there. You have to build up a picture of what your husband's overall situation is. Information from the forum is just one part of that process. I hope may experience too can help guide the pair of you.
 
On the day I was told I had PCa my urologist gave me lots of advice even though he later handed me over to someone else for surgery as he didn't do the Da Vinci. But he recommended surgery of some sort as opposed to radiotherapy and his reasoning was this:
 
If I started with surgery and the cancer returned at a later date, then radiotherapy would still be possible.
BUT if I started with radiotherapy and the cancer returned then additional radiotherapy would not be possible as I would have already had my maximum permitted dose, AND any surgery after radiotherapy would be very much more complicated, as there would be a lot of scar tissue in the area that would make it very difficult to remove anything with ease. An additional aspect regarding the order of treatments is your age. If the cancer returns after say 10 years then it will have been less complicated to have had the surgery when you are younger and fitter and the radiotherapy when you are older than to have the surgery when you are older.
 
I am also suprised that you have been told that 2 years after seeds there will be impotence, as thought he is guaranteeing it rather than warning that it may be very likely. (But, as so many otgher threads in this forum show elsewhere, impotence is a very complex issue and not as clear cut as it may seem when it first rears its head. Impotence among PCa guys does not seem to be anything like the same conditon as it is with guys who are impotent without having had PCa.)
 
Take time to absorb the facts and weigh things up. But also remember to take a break from all this complex stuff and fit in some kind of enjoyable treat (My wife and I had a week in the Champagne region of France - thankfully it is only a few hours by road from where we live! But we also enjoyed all kinds of simpler shorter moments in the days and weeks leading up to surgery.) 
 
Even a long journey begins with a single step.
 
Best Wishes
Alfred
 
 

Age at Dx 48         No Family history  of Prostate Cancer

Married 25 years, and I cannot thank my wife enough for her support.

April 2009: PSA 8.6  DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.

RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.

Partial erections on 1st and 2nd Aug 2009, Catheter out on 6th Aug 2009. 

Dry at night, but wearing pads 24/7

Post-op Gleason 3+4. Seminal Vesicles invaded, but otherwise negative margins,

Erection 100% on 15th Aug 2009   Stopped wearing pads on 21st Sept 2009

Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.

 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 11/6/2009 10:18 AM (GMT -6)   
As you can see, I am a surgery guy -- but my younger brother had seeds at age 55 and now has PSA of 0.0 five years later. As far as ED, he reports that Viagra is "fantastic"

My doctor says that he thinks the number of positive cores is more important than the percentage in each. He says that sometimes he just gets lucky with the needle and gets it to the middle of a very small tumor.

I agree that 200 surgeries is at the low end of what someone should look for.

In any case, you have lots of time. Letting the biopsy heal is important so even if you decide on surgery, January would be about right and with your husband's stats, even a couple more months is unlikely to matter

I'm glad to hear you "hit your husband upside the head" as far as rushing to surgery. If you start with the assumption that guys are jerks when it comes to health care then you will know why so many of us are thankful to our wives not just for support but for reasoned guidance.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


Bedelia
New Member


Date Joined Nov 2009
Total Posts : 18
   Posted 11/6/2009 4:50 PM (GMT -6)   
Thanks everyone! We need encourgement now, as hubby is pissed off at the world. Hopefully, the anger phase will pass soon.

We'll have the 2nd surg opinion on Monday, and we meet with a onco rad on Thursday. He's pretty sure he wants surgery, but I'm insisting he gets more info on the seeds. He really just wants to get the cancer out, and is ready to deal with the side effects. I'm not sure he realizes how bothersome they can be, as he avoids reading about it. He already talked with someone who went through surgery, and it depressed him.


Hopefully, by end of next week, we'll have a made decision. I'll keep researching in the meantime.
Age 60, no symptoms
Suspicious DRE 10/9/09
Uro visit 10/14 one side hard
Biopsy 10/23/09
Diagnosed 10/27/09
PSA 1.84
Left Mid and Apex: Adenocarcinoma, GS 3+3,
cancer in 2 of 10 cores occupying 40%


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 11/6/2009 5:02 PM (GMT -6)   
The comments that there are no fall backs if you have radiation, but you have radiaton if surgery fails is simply not true. High dose Brachytherapy as a salvage to failed radiation is just as effective as salvage radiation after a failed surgery. HIFU and cryosurgery are also used as salvage therapies for failed radiation.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Hopeful in MD
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 11/6/2009 7:27 PM (GMT -6)   

Hi Bedelia,

Unfortunately, seeds in Jan 08 did not work for me.  So, on to hormone therapy - Lupron.  Even worse, radiation proctitis with burning in rectum and occasional bleeding (minor for the most part)  showed up in Apr / May 09.  Forty hyperbaric oxygen treatments for the proctitis apparently have not helped - per sigmoid exam yesterday Nov. 5.  Will talk to hyperbaric doc on Monday about alternative treatment. Metamucil and lots of water help somewhat.

So, be aware that radiation proctitis is a possible side effect of the seeds and may occur many months after treatment. 

Having said that, I would still choose the seeds because they reportedly can be as effective as surgery and are far less involved. You will note in my signature that I am 70, so ED was not a major concern.  I wish that I did not still have the cancer, but I would most certainly have had great difficulty with the side effects from removal of the prostate ( I am not a good patient turn ).

Wishing all that's good for you.

Gene in Md

 


Hopeful in MD
Age 70.
Dx Dec 07. PSA 8.4. DRE confirmed tumor. Three of six biopsies positive. Gleason: 6 (3+3).
Seed implants Iodine 125 Jan 08.
PSA's 3.9, 1.7 after implants. 
Rising PSA's: 2.3, 3.4, 3.9, indicating  seed therapy not working. 
April 09 began hormone injection therapy with Lupron 30 MG ea. 4 mos.  Side effects - hot flashes, about 1 an hour, initial severe fatigue. Gone as of mid-July. Jun 09 - Oncologist DRE negative for nodules - hooray!!! Aug 09 - PSA 0.5!!!  Lupron is working! Aug. 21 - 2nd Lupron shot.  Flu-like symptoms. Aug. 31 - hyperbaric oxygen chamber treatments for rectal bleeding. At least 20, possibly 40 or more.  Sep. 10 - dx radiation proctitis after sigmoid exam. 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/6/2009 7:33 PM (GMT -6)   
gene, sure wish things were going better for you, brother. I know you have had your share in your PC journey too. my best to you
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/7/2009 7:41 AM (GMT -6)   
Another possible option that is usually overlooked and not endorsed by most of the mainstream whom make it seem perhaps worthless, and there are still others protocols and choices that can do wonders, too.:
 
ADT3 combo hormone therapy(lupron+casodex+proscar) drugs for 13 months (approx.), go off these and take only proscar or avodart or similar family of drugs as maintenance. What??? That sounds insane and have not heard that from my doc?????  Well here is how insane it has been for a guy I know about in Michigan (Rick K.), had similar low stats like you do herein (psa near 11.0 and 2 positive cores).  Did these drugs way back when this even more experimental (around  1995 era). You can google or research Dr. Leibowitz and some others to read all about this concept/protocol. Also, about the numbers of patients that have done this protocol.
 
Rick had rebiopsies taken two times years afterwards and nothing found in those biopsies  (cured? no- unlikely). Here's the news:  normalcy as manhood and body functions, still can choose most any treatment he may wish to take (surgery still possible although more difficult on a shrunken gland-fyi). His psa finally went up some last year (12-13 yrs. later) he decided to resume another round of ADT3 and then quit and take proscar for maintenance like in the first round. Rick is no hurry to get a major invasive modality at this time, which is his right as any kind of patient and his choice as it should be with any kind of patient. So, currently Rick has kept PCa at bay for around 14 yrs. and counting.....this is not a sane possibility for others????  Is their anyone whom should look at this and decide for themselves???  Is it more profittable to subject a patient to surgeries, radiations and other major modalities that in fact cost 10's of thousands of dollars?  Is their alot of profits in any treatment on PCa (usually) but not necessarily every scenario or every drug therapy that you might be able to find about out. Is everything on PCa easily laid out in front of patients for them to 'see' like all or the majority of options that could be available.....NO-NO-NO. I got many opinions and discussions with various treatment centers, various types of docs, experts, many forums, books...etc.  Was it easy to find anything other than what is called normal treatments?  As patients looking for "all" possible scenarios we are not given that kind of information. Why not??  It could not be in our own interests...whom is messenger???
 
I have talked to Rick a few times, he is personally pleased as heck with his journey and outcome. Yeah I guess he would be biased, he also is totally normal in all his functions and still has all those choices....that he supposedly had to choose asap(1995) from recommendations from the first few docs he saw, whom anxious to perform, whatever.
 
There are other patients whom never had major protocols on their PCa, a famous doctor whom is the father of inventing Cryo-therapy(decades ago) is a PCa patient. He went totally the drug therapy method with emcyt and is still practicing medicine and doing ok, and this is around 10 yrs.+ dealing with PCa.  I have not had the pleasure to interview him and ask questions, if he saw huge benefits in any modality don't you think he would have taken them????  I would not try pass judgement on this man or his motives or his expertise(s), you have not walked in his shoes, nor know comparitive 25% on PCa of what he most likely knows.  He is one of a handful of doppler color sonographers, considered pioneer in this field also.  Interesting he did not do what is widely sold to 'patients' from other doctors and institutions. 
 
Contemplation consideration- suppose you chose this(ADT3 or other drug methods) and bought 5-10 yrs., and during these future years, another breakthrough occurs that is better or enhances your long term chances (these things are in the pipeline and will become available sooner or later). Maybe you could be cured or further prolonged and remain totally intact maybe with normal body functions...which is in your best overall interests? Negative side maybe you can die of PCa...which can happen in all the other treatment-scenarios, also. Never a guarantee with any modality on PCa. Alot more choices out there, than we are given awareness of.  Now if you would like to call Rick and tell him how wrong his choice is or was.....I have his phone number and he is pretty well versed on PCa issues overall, also.
 
Is PCa a minefield, the twilight zone, the jungle?  Well you decide, especially after you know most all your options....in your best interests.

Post Edited (zufus) : 11/7/2009 7:17:28 AM (GMT-7)


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 11/7/2009 11:39 AM (GMT -6)   
Whatever the husband's choice - and it'll be his choice to make - I think focusing on ED is misplaced emphasis. Dealing with the cancer the best way thought is where I placed my emphasis, not on my sex life. Best wishes to your husband, and your family, as you move through the decision-making and treatment options.

Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0

 


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/8/2009 8:59 AM (GMT -6)   
Bedelia, I found this interesting article about ADT3 treatment. As you can see, there are significant side effects with this treatment, as there are with any other treatment.

http://www.lef.org/protocols/prtcl-138m.shtml

Zufus, do you have any idea what the cost of this treatment would be over 13 or so years? I agree that there is alot of information out there and that doctors don't always clearly set out the options. But, we must be careful to not mislead others into thinking that one treatment is preferable or less expensive than another.

Every man is different and can tolerate different side effects.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8. One spot on bone scan (clavicle) being investigated. Third PSA taken on October 16 - PSA IS UNDETECTABLE! Next PSA scheduled for early December. Urged not to begin radiation treatment until it's needed (no problem there!).


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/8/2009 12:37 PM (GMT -6)   
You missed diagnosed me on this, 1st I said it is a possible choice(not the choice-men have to decide for themselves), 2nd I mentioned 13 months (just over 1 yr.-hello), 3 rd I would be against any long term useage of constant ADT3: in the long run over multiple years it can have alot of effects and even John Hopkins has an article about long-long run useage. I am interested in pointing out, what might be a working tool against PCa and any patients options that are available to us. It is no picnic and some men will tolerate this better than others. Let me add that these nasty side effects usually are temporary after one quits using these, after a little time goes by. The side effects of major treatments like incontinence, ed, bowel issues and others are sometimes permanent and talk about difficult for men to go through(tolerate)...just read the posts herein.

Let us not forget the side effects Rick K. has: 14 yrs.+, normalcy of body functions, can still get basically any treatment on PCa he wishes, via his own choice and timing. He is not a freak on this, I did 2 yrs. of ADT3(my stats are ridiculous compared to his), it is not real pleasant, but it can be done...others herein are doing similar therapies...out of necessity to keep PCa in control....Hey, if it works use it, you might want to question how long, can I do intermittently, and look into all your future options and choices, and there are many other protocols that most patients know little or nothing about. Maybe some need to find them?

Cost varies expect it to cost: $13,000 or more a year (back in 2002-2003) mine was worth around those dollars. It served me for about 2 yrs., pretty well as for keeping PCa in check(had radiations as major treatments). Glad I stopped and switched to something that has served me much better and without the side effects. That could be another thread and would be for the failed or super high risk groups to perhaps have interest in, I would have dreamed to have stats like Rick K. and had I known this option might have chosen it, objectively thinking.

Yes, I basically am smug on the drug companies for their pricing and marketing that is imposed upon us. These same drugs that are made here, are sold for way less in Europe, Asia etc.(we are marketed to) . I am for anything for PCa patients that extends life, enhances quality of life, or is in our best interests as a patient or shows that it works in some fashion.

(p.s. 13-months not years)- I know I can add you to my fan club  (LOL)

Post Edited (zufus) : 11/8/2009 11:42:32 AM (GMT-7)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/8/2009 5:32 PM (GMT -6)   
Zufus, sorry about the 13 years ... my head knew it was months but my fingers insisted on typing years!!!

Your post said it all - and very well indeed! You are a wealth of information about PCa treatment options and I am continuously amazed at your knowledge. Keep it coming!
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8. One spot on bone scan (clavicle) being investigated. Third PSA taken on October 16 - PSA IS UNDETECTABLE! Next PSA scheduled for early December. Urged not to begin radiation treatment until it's needed (no problem there!).


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/8/2009 6:35 PM (GMT -6)   
Well thanks for your extended hand on this, I know I receive some negative fan mail (lol) even on the board at times, and sometimes probably warranted too and I can forgive any arrows that came my way. My intention is to get patients off there complacency and realize that there are choices, options, other opinions that maybe they have not heard about or get someone contemplating their own PCa case and scenarios, that it might be useful and make a difference. That difference to the right person can be equivalent to having a blind man see again (maybe overstated) but huge perhaps in significance. All of us are trying help others in one way or another on this forum.

Bedelia
New Member


Date Joined Nov 2009
Total Posts : 18
   Posted 11/8/2009 6:37 PM (GMT -6)   
Thanks Sephie for the link.  I checked it out - a lot to absorb.
 
My husband's main concern is to get rid of the cancer before it spreads.   I'll let you all know how our second consult goes tomorrow.  At least we both feel a little more positive today than we have all week. 

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 11/8/2009 8:53 PM (GMT -6)   
I think your husband's reaction is one of the most common, and probably if you polled the surgical guys, the number 1 reason. In fact, it is the only way you will really know what you have. Until they get that little walnut in the lab, slice it up and examine it, all the biopsies, color dopplers, ct sacns, MRI's. etc, cannot tell what the pathology does.

Maybe it is the mechanic nature of many men. We just have to know, and if it is cancer, tearing it out seems better than trying to fix it.

There is however, some consequence for this action. Incontinence and ED are real, and surgery guys have a 30 to 40 % chance of having one or the other.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Hopeful in MD
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 11/8/2009 9:13 PM (GMT -6)   

David (Purgatory),

Thank you for the well wishes.  You are an inspiration to us all.  My wife and I pray for you every night (and for ourselves as well turn ). 

My latest, just for the record, is that the hyperbaric oxygen treatments (40 so far) apparently aren't working. I see the hyperbaric center doc tomorrow and will get his views after he sees the report from my gastro.  My gastro told me after my sigmoid exam this past Thursday that the treatments were not working.  So, will see what the doc says on Monday.

I'm leaning toward adopting some of the protocol that Bob Wall (you can google him) used for rectal bleeding.  Will consult with my primary care doc, uro, radiologist, and the hyperbaric center doc before doing that.

In the meantime, I hope you can finish your rad treatments and get some relief from your constant battle with PCa.

Gene in Md 

 


Hopeful in MD
Age 70.
Dx Dec 07. PSA 8.4. DRE confirmed tumor. Three of six biopsies positive. Gleason: 6 (3+3).
Seed implants Iodine 125 Jan 08.
PSA's 3.9, 1.7 after implants. 
Rising PSA's: 2.3, 3.4, 3.9, indicating  seed therapy not working. 
April 09 began hormone injection therapy with Lupron 30 MG ea. 4 mos.  Side effects - hot flashes, about 1 an hour, initial severe fatigue. Gone as of mid-July. Jun 09 - Oncologist DRE negative for nodules - hooray!!! Aug 09 - PSA 0.5!!!  Lupron is working! Aug. 21 - 2nd Lupron shot.  Flu-like symptoms. Aug. 31 - hyperbaric oxygen chamber treatments for rectal bleeding. At least 20, possibly 40 or more.  Sep. 10 - dx radiation proctitis after sigmoid exam. 

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