Procedures and Side-effects

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mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 4/20/2009 1:47 PM (GMT -6)   
 I am scheduled for a Brachytherapy consult and possible prostate mapping at the end of the month. I have been advised that the size and\or the positioning of the tumor\nodule will determine whether or not I am a candidate for this procedure. I am still having a major problem deciding whether or not to proceed with any treatment given my age, PSA and Gleason- particularly in light of the recent study and comments ( from Sloan_ Kettering for one) concluding that for every life saved , 48 men will have been treated unnecessarily for a cancer that was never a threat to his life.
 Quite frankly, the thoughts of a bad outcome and severe side-effects with treatment concern me more than the prospect of possibly shortening my life a few years by leaving it. 
  I expressed these concerns to my oncologist and he had a very interesting response and one which I was not expecting and had not heard before or read about. I understood him to say that not having treatment may  result in the onset of urinary and ED problems from the cancer itself.
 If true this changes everything for me whose main concern is the side-effects- if I am likely to have them with or without treatment, I may as well have treatment- no downside under that theory.
Any thoughts?
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 4/20/2009 3:04 PM (GMT -6)   
Well...yeah, there is some truth. The cancer as it grows could squeeze the urethra and/ or bladder neck and cause problems with continence. At the same time could spread out to the nerve bundles and cause ED.

But remember, this is the result of advanced stages of prostate cancer. My suggestion...don't wait for the advanced stage of cancer to begin treatment. You may have the side effects from treatment, but that is so much better than the alternative.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month April 2009 .06


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4186
   Posted 4/20/2009 3:31 PM (GMT -6)   
There was a post just recently that gave the guidelines for watchful waiting. I think that 4 positive cores puts you outside the guidelines. What % was in each of the cores?
Brachytherapy probably has the least side affects of all treatment options.
Doing nothing will probably have no effect for at least 5 years, maybe 10, but given your life expectancy of 20 years and the number of positive cores this may not be the best choice.
JT

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

As of April 10 and 7 weeks on Casodex and Proscar PSA has gone from 30 to 0.62 and protate from 60mm to 32mm. Very minor side affects. Doc says all this indicates tumor is not aggessive

Awaiting schedule for seed impants

 


RHC Jr.
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted 4/20/2009 4:55 PM (GMT -6)   

Hello mjluke:

I previously wrestled with your same issues, and eventually opted for a da Vinci robotic prostatectomy.  The surgery has produced 2 good blood tests to date (PSA undectable), but it also has produced extreme incontinence and ED.  I have written about my situation in other threads which you have seen.  In response to a question which you posed in another thread, I was not incontinent in any respect prior to the surgery, nor did I have any other urinary problems.

My intial reaction to the basic question which you posed is that our differing methods of treatment makes our situations only marginally comparable. I was not a candidate for brachytherapy (prostate size).

Were I in your position (and I clearly am not), I would note that my current condition of extreme incontinence is a side effect of da Vinci robotic surgery.  I would not assume, without further evidence, that this type of extreme side effect would result from brachytherapy.

Good luck in your decision making process.  IMHO, wrestling with these issues will help you make peace with whatever choice you make.


Last PSA prior to biopsy  -  11.9
Biopsy  -  8/7/2008
Cancer findings at left lateral and left medial apex of prostate
Gleason score  -  3+3 = 6
Staging  -  T1c
Prostate size/weight  -  128 cc./ 99 grams
Bone and CT scans  -  9/12/2008  -  both clear
Age at biopsy  -  65         Health  -  Excellent (other PCa)  (Lift weights, play golf & tennis (incl. singles))
da Vinci RP surgery  -  12/15/2008 at Naples Hosp.
Surgeon  -  Dr. Wm. Figlesthaler
Hosp. Stay  -  1 night
Catheter removed  -  12/23/2008
Post-Op blood tests  -  2/2/2009 & 3/27/2009                     PSA  -  undetectable
Scheduled 12 weeks biofeedback, coupled with electrical stimulation  (started 3/3/2009)
 


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 4/20/2009 6:46 PM (GMT -6)   
Hi mjluke,

For about the last 8 or 9 years I ignored the fact that I was having difficulty relieving myself. Last May 2008 it reached the point of barely able to get anything to come out. After a failed attempt I found if I walked around for a few minutes I could then urinate enough to get by.

Up to that point I had never had a PSA test and my family doctor said even though my prostate was enlarged he didn't think it was cancerous. He said it was my call to have the PSA test. Fortunately for me I chose to have the test. The results of the test led to a biopsy which in turn led to prostate removal via the daVinci procedure.

So you see it was the side affects of the cancer that forced me to seek treatment. Yes, I have different side affects caused by the surgery but I'm hopefully going to see the day when the cancer and the side affects are in the distant past.

Your decision on what is the right approach for you should be based on data received from many sources. I relate my experience for you to use as one of those sources should you see fit to do so.

I wish you well,
Bob
Age 69, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin

Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative

First post PSA < .1 Jan 16 2009
Second post PSA < .1 Apr 17 2009


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 4/20/2009 7:22 PM (GMT -6)   
At 46 I had the urinary habits of a man MUCH older. I had to go often and it was a SLOW, sometimes painful dribble when I went. I was able to perform sexually, but man, a bit of viagra helped a LOT. I now know that the cancer was the cause of all of that. After surgery, i pee like a racehorse and ED is well on its way to being gone. Most guys will end up using viagra anyway, so it's no big deal if I need it the rest of my life. I would probably be there despite surgery! Your surgeon is right. Cancer can cause all the same problems as surgery. Interesting point.
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6 (Biopsy 3/07 just suspicious)
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.
One year PSA - undectable!


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4080
   Posted 4/21/2009 7:18 AM (GMT -6)   

Dear mj:

Shown at the bottom of this post are the John Hopkins "requirements" for patients in their active surveillance program.  This is per John T's reference.  Based on the info you provided, you would probably not be a candidate for this based on their criteria.

Frankly, I can understand your concern about bad side effects.  Every time I read a post here about severe incontinence or injecting the penis to get an erection, I find it disconcerting.

Having said that, there are treatments with fewer side effects than surgery and clearly you are exploring them.  I would also suggest you check out realziggy's posts re TFT...I don't know if you would be a candidate but at least you might explore the option.

Best of luck and let us know how your brachy consult goes.

Tudpock

Hopkins Criteria for Active Surveillance

1.  Age 60+.

2.  T1C, i.e. nothing felt on DRE.

3.  PSA density of .1 or less (this is PSA divided by size of prostate, e.g. PSA of 3 divided by prostate size of 35cc equals PSA density of .086 which is less than the .1 threshhold.

4.  Gleason 6 or less.

5.  2 or fewer cores of cancer.

6.  No core with more than 50% cancer involvment.

 


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 4/1/09.

oletimer
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 4/21/2009 8:18 AM (GMT -6)   
Mjluke , I know where you are coming. I too have been recently diagnosed and the thing that scares me most is the side effects of the procedures. Quality of life is big in my book. At 60 I am very active and enjoy many outdoor activities. From what I have researched there are two options that seem to have less side effects than the others. They are Cyberknife and Proton Beam therapy. Proton seems to have the least but there are only 5 sites now offering this treatment. More are being built but the cost is very expensive [ $150 million and more ]. Cyberknife is offered all across the country and is a 5 day procedure as apposed to the 8 weeks for Proton. Just something else to consider. Good luck.

Diagnosed 3/09  Age 60                                                                              Gleason scale 3-3 left and 3-4 right                                                              PSA 4.1                                                                                                   Treatment - Proton Beam if insurance covers it                                     


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 4/21/2009 8:49 AM (GMT -6)   

Thanks to all for your responses and words of encouragement.

JT and Tudpock- two of my biopsy samples were 80 and 90 percent- I agree that I am not a candidate for watchful waiting under the guidelines- but are these guidelines even relevant anymore? In relation to the recent study results which I referred to in my initial post, Dr. Welch, a professor of medicine at Dartmouth welcomed the new data and said " its a shame we didn't have it 20 years ago". I find the study results and comments by those in the know to be very disturbing yet nothing seems to be changing in treatment. You see guys with one cancerous core at 5 or 10 percent being rushed into surgery when the word " cancer" is mentioned- seems to me they are treating anxiety more than anything else.

Sorry for the rant and thanks again to all- for now I will continue to struggle with my decision and hopefully all will become clear in time.


 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4080
   Posted 4/21/2009 9:18 AM (GMT -6)   

Dear mj:

Yeah, I hear you.  Frankly, I tried to talk myself into active surveillance but finally realized that was not a good choice for me if I wanted a long life.  I'm not a doc but you DRE results would concern me if I were you.  However, if you are considering active surveillance, I suggest you consult an expert with experience.  Why not call Dr. Ballentine Carter at Johns Hopkins for a telephone consult?  He is head of adult urology there and runs the AS program.

Re all of the recent study results, yes, they should give you pause to seriously consider treatment.  However, please remember that each man is different and you don't want to be the one with advanced PCa.  The result of that is far worse than the treatment options you have now. Having said that, there are less invasive procedures e.g. the ones I referenced in an earlier post.  Why not explore those as well?

Finally, I have to admit that one of the reasons I chose brachytherapy was because of the chance of relatively low SE's for my particular case.  If you want to see how I have done with that procedure, click my journey at the bottom of my signature.  Or, check out JustJulie's Journey on this forum.  You won't find many of us seed folks here as most patients here seem to have chosen surgery.  But, you should certainly explore multiple options.

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 4/1/09.

mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 4/21/2009 9:58 AM (GMT -6)   
Good Day Tudpock:
I have just finished reading your journey and wish you continued good health- your results are encouraging and don't ever underestimate the value of the information and words of support that you provide.
I have already done the expert consult and have been advised that I am not a suitable candidate for active surveillance. It just seems that when it comes to prostate cancer and treatment I continue to question and second guess even the "experts". This study thing ( 49 in 50 chance of unnecessary treatment ) continues to boggle my mind.
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 4/23/2009 7:47 AM (GMT -6)   
Don't worry mjluke...all of us Gleason 6 men struggled with that very same question over and over in our minds before deciding on a treatment plan. I choose surgery as many of us here have done, and the one thing that I was grateful for, was the pathology report showing a Gleason 7. That in itself supported the decision for doing something and not waiting in my mind. It completely eliminated any hindsight. I know I did the right thing and will never second quess having treatment.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month April 2009 .06


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 4/23/2009 9:51 AM (GMT -6)   

You make a good point about the readings Les.

Thanks for taking the time to post and continued good health to you my friend.


 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 4/23/2009 7:57 PM (GMT -6)   
Mjuke, Good luck to you. One thing to remember....If you have the radiation and the cancer returns...there are not many options available. If you have the surgery, and it returns, you can have the radiation then. We have been there.....Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 4/24/2009 6:25 AM (GMT -6)   

Good morning Diane:

Thanks for your response. My understanding is that if the cancer returns after Brachytherapy then surgery is difficult and generally not an option. However in that case the cancer had probably spread beyond the prostate and surgery would have been useless anyway.


 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 4/24/2009 7:27 PM (GMT -6)   
Mjuke, That is not what the doctors at Sloan Kettering told us. Dr. James Eastham operated on Pete...a salvage surgery after the cancer returned....He said there was a 40 % chance of a total cure...or at the very least a "debulking" of the tumor.... ....Pete was 63 at the time it was originally found and in excellent health..........Read what happened to him after the treatments.. (Of course, to be fair brachy and radiation has changed a lot in the past eight years....... Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09


Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 4/25/2009 7:17 AM (GMT -6)   
mjluke,
I will reinforce diva's comment. In my case, when the cancer returned 10 years later, it was still contained within the prostate.
Diagnosed @ age 47 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
Colostomy Reversal - January 2009 @ Cleveland Clinic
Will have AUS implant - May 2009 @ Cleveland Clinic
 
 

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