On the road to recovery...

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41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 9/28/2007 8:39 AM (GMT -6)   
Last night I started writing a post about this whole PCa experience and ended up writing 4 pages!  It's somewhat of a journal about my decision process that I thought might be useful to some to read, but again, I'm not sure if it's too long to include here.  Most posts seem to be short Q&A.  I'm 11 days post surgery and doing well.
 
So is a 4 page post too long? I copied it to a Word document and saved it rather than post it. 


 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 

Post Edited (41diagnosed) : 10/16/2007 10:20:53 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 9/28/2007 9:06 AM (GMT -6)   
tongue This is so important!!!!!!  Please!!!!   Post it!!!  yeah

             Long??....  see "Our Journey"... in the signature below!  tongue

Knowledge gives us POWER….  POWER takes away the fear.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/28/2007 9:51 AM (GMT -6)   
Nope. Not at all. The beauty of this site is we can say what we want when we want. I'll read it!

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
STAY POSITIVE!


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 9/28/2007 12:06 PM (GMT -6)   
After agonizing research since my diagnosis in June and trips to see doctors literally across the country from Boston's MGH to Loma Linda's Proton Therapy Center near Palm Springs, I chose open surgery here in Chicago. In case this may help others, I want to share how I arrived at my decision. The decision is truly personal and must be made based on one's own priorities and tolerance for risk and/or the unknown.

Each of us goes into our treatment with unknowns...is the cancer still organ confined? What is my real Gleason score? What are my risks of recurrence? Would radiation kill all the cancer cells or will some be resistant to radiation, survive, and continue on? Even if my bone scans and CT scans are negative, what is the risk that some undetectable microscopic cancer cells have escaped into the prostate bed or have already traveled to and lie dormant -- or worse aren't dormant -- in some distant part of my body where they may continue on? What new tests are available that can help with clinical staging of PCa that maybe I should do? And so on and so on.

At the end of the day, there are not answers to all these questions, nor are there guarantees for treatment success. Each of us must find the inner strength to incorporate these unknowns along with what we know into our psyche and move forward with our decision for treatment and our daily lives. It does, however, change each of us forever and makes us more sensitive to our own mortality and the value of life. It has also made me appreciate more the people around me who have supported me emotionally, including the people's posts I have read here and those from Healing Well to whom I have spoken.

I truly wanted to make a completely rationale decision based on fact and data, not one based on emotions. I didn't care about just cutting it out of my body with surgery if radiation was proven to be just as effective. I wasn't going to be afraid of radiation if the success spoke for itself and the risks of secondary cancers were truly nominal. I did care about minimizing side effects and maximizing my quality of life after treatment. I wasn't going to avoid surgery despite the risks of side effects if it offered me the best chance at long term survival, because I wanted to make a decision that gave me the best chance at being around with my wife to see our 9 year old twins grow up and enjoy my time with them.

So I read and read and read...articles, studies, books, and medical journals. I interviewed surgical and radiation patients, had many physician consults, and spoke to any medical professional I knew. I discovered after awhile I knew more than many doctors about PCa, as I'm sure many of us here do. I also opened the eyes of a few who from me better understood the dilemma of the decision each of us with PCa faces in choosing a treatment option.

I discovered that for higher Gleason scores and PSAs, the risk of surgical failure is reasonably high (greater than 30% to me is high!) and the outcomes for radiation therapy and surgery are similar. The way I saw it was this...as your Gleason Score and/or PSA goes up, so does the surgical failure rate and the risk of surgical complications and negative side effects (i.e., incontinence and impotence). Radiation started looking more attractive in particular because of the more favorable side effect profile. I actually laughed at a physician who said to me that the ED side effect of radiation over 6-7 years was the same as surgery. I asked him if he saw no difference between waking up the next day with ED and having it happen gradually over years? He of course did not answer my question.

Proton Therapy to me seemed the most attractive radiation and treatment option because it had the most favorable side effect profile and also provided the ability to receive higher radiation doses than traditional radiation modalities with minimal increase in side effects. I was leaning toward Proton Therapy for sure.

My fears of incontinence and ED were my biggest objection to surgery. I felt compelled to continue to evaluate Proton Therapy. It certainly sounded so much better and the patients truly are INCREDIBLE advocates and boast minimal side effects overall...and I believe them, I really do. I spoke to many of them including Bob Markini who wrote the book You Can Beat Prostate Cancer And You Don't Need Surgery. They were all generous with their time and all were passionate about their decision. I admired them for their resolve and found myself wondering why I couldn't share their resolve. So I continued on talking to more patients, both proton and surgery (both open and DaVinci). I also ran across a couple of seed implant patients who I spoke to as well, though I wasn't really considering it as an option.

In talking to Proton patients, I spoke to one Proton patient who was 10 years post treatment but had two successive rises in his PSA (not yet clinical failure, but was only one PSA rise away), and two other younger patients whose PSA nadirs were not at a favorable low point. This concerned me greatly. Maybe Proton Therapy was not the right option for me? But it certainly didn't seem as scary to me as surgery, and others were doing it.

Yet, by and large, the surgery patients I spoke to were doing well. Many had no incontinence issues post surgery. Others had some that resolved over the months after surgery. Actually, only on Healing Well did I encounter patients who had long term incontinence issues. Others spoke of ED issues, but again, many indicated that they had good recoveries or that drug interventions (not injections) were working well for them. This didn’t sound like the nightmare I had read about in the books. I also focused on talking to younger men whose situation was more closely aligned to mine.

I continued on with my research compiling data relative to MY Gleason score and PSA -- thanks to my wife for helping me with this. I’d recommend this approach to anyone. It’s hard to decipher all the data and not all of it pertains to you. It was hard to carve out the time to do it, but my wife and I did it. I found that the success rates for disease free progression 5-10 years out based upon clinical stage were similar between Proton Therapy and Radical Prostatectomy. My clinical stage was favorable, T1c. However, my Gleason score was 3+4 not 3+3 and my PSA was over 4.0 and that put me in a higher risk group for recurrence with both treatment options.

After over a month of reading, I started to better understand the studies and results I was reading. It meant going back over some to reread them. Some divided groups based on post op pathology rather than clinical stage (pre op pathology such as biopsies). I learned that with post op clear margins and otherwise favorable pathology, the chances of having disease-free progression at 10 years were marginally higher for surgery than the general grouping I fell into in the published Loma Linda Proton Therapy studies for my Gleason score (3+4) and PSA (4.65). This was based on looking at numerous surgical studies too.

Note: for anyone who is not aware, www.pubmed.com offers a wealth of information and informative articles by researchers and physicians.

I figured if I did surgery, of course I'd do Robotic Laparoscopic surgery. So I found the best in Chicago. He readily put me on his surgical schedule with very little interaction other than the obligatory DRE. He was responsive to my emails and questions. I felt lucky to have found a competent and experienced surgeon in my own city. But still I continued on reading and still I had not yet ruled out Proton Therapy.

I then went to a consult with one of the PCa "masters" Dr. Catalona. You will find his name in many of the PCa studies. He first told me definitively I should have a radical prostatectomy. He did not waver when I asked him why open vs. DaVinci. He explained to me that the open surgery has no risk of adhesions in the abdomen which was one risk, for other medical reasons, I was happy not to take. I figured if I kept adding on risks, eventually one would stick! I also learned on my own that with an experienced surgeon recovery from open surgery is on par with the DaVinci method in terms of continence and ED recovery. So right then I ruled out DaVinci surgery for me.

Now for those who are considering or have done DaVinci surgery, I’m not saying it’s not a good treatment option. It is a fine choice for many, but I had a bowel obstruction history from another much less significant issue and decided it had a risk for me that I didn’t want or need to take.

After reading what I will call the "anti surgery" books, I believed that when surgery failed, it was because the cancer had already spread and the surgery was ultimately not an effective treatment option. And if I had a 30%+ chance of surgery failing, I challenged him by asking why I should have surgery and then have to do radiation anyway?

To this Dr. Catalona pointed out two things that I hadn't really considered nor read anywhere. The first was that if there was biochemical failure after surgery, but the cancer was still at a locally advanced stage, he felt that adjuvant radiation had a better chance of being successful since there would be less cancer cells. As he described it, if you have a termite problem and you get rid of 99% of the termites, you still have a termite problem. The less there is to start out with, the better the chances of resolving the problem.

Secondly, at age 42, even if Proton Therapy was successful and killed all the cancer I have today, since I'd still have healthy prostate cells, I'd still have to worry about whether I might get PCa again, even if I made it 10+ years without biochemical failure post radiation treatment. He suggested that my body had already proven to me that my immune system could not fight PCa. Since my normal life expectancy is longer at 42 than the average age of PCa patients, the chance of getting the cancer again was greater for me.

If I did get it again, I could be in my 50s or 60s and my options would be limited. I had read enough to know from studies that both surgery post radiation and cryosurgery -- the two recommended salvage options for local PCa failure post radiation treatment -- have worse outcomes in terms of the very side effects that scared me the most than having surgery as a primary form of treatment followed by radiation as a salvage treatment if ever needed. Or I'd be banking on whatever advances in treatment options might be available when and if I needed them.

I was still scared of the surgery, but what kept me open to it as an option was that the statistical recurrence rate 10+ years out after RP was in the low single digits, and that seemed a chance for living hard to pass up. This also was a statistic that was undocumented for radiation treatments. Additionally, the data set for radiation was so small for my age group and much smaller than the data set overall for surgery. While I had read that no randomized studies had proven surgery to be effective at extending life, none had been done for radiation either.

So I rolled the dice on open surgery and came up with negative margins (see my updated signature for more details). I had very little blood loss, very manageable pain, a short hospital stay, and a scar that doesn't offend my vanity. I know have the cath out as of yesterday and am dealing with some minor incontinence issue that I am hopeful will resolve within a reasonably short time. While it has not been the summer camp that Loma Linda markets, and hasn’t been a pleasant experience, it has been manageable.

It really does make one reflect on where medical science is in treating cancer. Still, the treatment most medical professionals feel is most definitive and effective is to cut it out. It's not emotional either. It's based on what they know about cancer and what they don't know. It sounds so barbaric, but given the way cancer cells can spread, and the difficulty in controlling cancer once it has advanced, it seems only logical that until there are better methods of managing advanced cancer in later stages, surgery will continue on as the preferred treatment for operable cancers.

I have numerous friends and relatives in the medical profession. I asked all of them their opinions and asked them to make inquiries of their colleagues on my behalf. Across the board, 99% of the recommendations I received were to have surgery, except from Loma Linda and one Radiation Oncologist who recommended seed implants. Even at Mass General in Boston where they offer both IMRT and Proton Therapy, it was recommended I have surgery by the Oncology Team, and that recommendation included input from the Radiation Oncologist who said IMRT was a viable option for me if I didn’t want to do surgery, but he would recommend surgery.

On a final note, I am amazed by the number of people who truly believe that the medical profession is filled with people are simply interested in recommending surgery to "line their own pockets". I have heard this said a lot about why Urologists recommend surgery and not radiation. It's amazingly simplistic to believe this to be the reason why a surgeon recommends surgery. It's funny, I have never heard an advertisement for Dr. Catalona on NPR, but I did for Loma Linda. And while Proton Therapy and other forms of radiation therapy certainly have shown promising success and are not to be discounted as viable treatment options for some, the Radiation Oncologists are certainly earning good incomes along with Urologists. And don't misunderstand me, I don't begrudge them their incomes given the effort and expense to learn and be successful in their discipline, not to mention the costs associated with malpractice insurance. I just believe that doctors are following the research and data and focus on being good at what they do. Ok by me.
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 9/28/2007 12:35 PM (GMT -6)   
Hey 41diagnosed (wish I knew your name),

WOW!!! This is the best summary of the treatment decision that we have to make that I have ever read. Your thorough research led you to an excellent result. Congratulations sir...

When I first started doing research, the general consensus was that for "younger" patients surgery was the answer because of the long term survival rates. For "older" patients (like me) the general recommentation was for radiation because we were likely to die of something else anyway. BS!!! I said. It seemed to me that my life was not as valuable because of my age. I wanted the same chance of long term survival as the 40 and 50 year old patients have. So I had RRP and would do it again in an instant. I was incontinent for about 8 hours after the catheter came out and have an active sex life with the help of Viagra and Trimix. For an old guy that had ED before cancer, this is not a bad thing.

Best of luck to you on your continued recovery. You did a great job...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Started Tri-Mix on 8/7/07.  .02 ml and 50 mg Viagra.  It works!!!
Next PSA and T tests on 10/17/07
 
"Patience is essential, attitude is everything."
 


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 9/28/2007 12:41 PM (GMT -6)   
My name is Doug. Thx for your reply :)
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


kdnole
Regular Member


Date Joined Jun 2007
Total Posts : 152
   Posted 9/28/2007 2:40 PM (GMT -6)   
Hey Doug - I love the "let the games begin" Good one!
Age 44
PSA 4.8
Gleason 3+3=6
T2
Biopsy - 3 of 12 (2@20% / 1@80%
Da Vinci 7/31/07 @ Duke
2.5 hr. surgery, released from Duke with in 14 hrs.
Saved both nerve bundles. 
Foley out 8/10/08
Positive Pathology Report 
Near left side nerve bundle
New Gleason 7
Oncology visit in the near future for radiation
Back to work 3 weeks following surgery - Sales
 
9/13/07 - 1 Post PSA Undetectable less than 0.1 
 
9/17/07 - Pad Free! 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/28/2007 2:54 PM (GMT -6)   
Doug,
You did much of what I did in research and we chose a similar path. This is a good write up. I struggled with this decision for just a short time. It was obvious that surgery was the only choice for me. For almost exactly the same reasons you state. And I did have similar advice from my surgeon on the RT versus surgery. And wouldn't you know it, a radiation oncologist confirmed that I made the right decision. As is in my case below, I had the surgery in February. When it was discovered that I had local metastatic disease I had to consider adjuvant radiation. It was then that my RO, who by the way at one time stated he would have RT before surgery, told me that his job was much easier since I had already had the surgery. That's why a post operative patient who needs RT only gets 35-38 treatments as opposed to 43-45 for those who never had surgery. If you don't think that those extra 7 or so treatments don't make that much difference, think again. The side effects for 43 treatments are the same only for a while. As time moves on, that changes. Even more so for those who chose brachytherapy and IMRT or Proton. Like you said, it's possible that a relapse could actually be new prostate cancer. My only exception to this story is the daVinci versus open. The results are the same and there are those who lose blood. open is the age old technique, and is well proven. DaVinci will continue to grow and is already the most widely used treatment for prostate cancer. And it too is proven. That stated, any surgery is looking more difinitive that RT because of that post-op pathology report. A disected prostate gland has more information. Valuable information. I sure am glad to have the knowledge of my disease status, and the option of additional adjuvant therapies BEFORE a PSA rise.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
STAY POSITIVE!


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 9/28/2007 6:55 PM (GMT -6)   

Thanks for sharing your story and best wishes for a successful recovery from surgery.   I truly believe that you have to be your own advocate in this fight and it sounds like you have got your bases covered!  Best wishes and keep us posted!

Doting


Father's Information
DX July 15, 2007
Age 62 (now 63)
PSA 5.5
Original Gleason 3+4=7 
Post Surgery Gleason- 4+3=7
DaVinci Surgery Aug 31, 2007
Positive Right Margin
One positive node
Bone Scan/CT Negative (Sept. 10, 2007)
T3a N1 M0
In process of determining follow up therapy
 
 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 9/28/2007 8:06 PM (GMT -6)   
Doug & wife,

I appreciate how through you were in laying out how you came to your decision. It sounds like you & your wife are a great team that left no stone unturned...and with a very good pathology report for the payoff.

I sincerely wish you continued success with your recovery and in the long life you have ahead of you.

God Bless,
Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
3 mo. PSA Post LRP Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
09/06/06: 6 mo. PSA: 18.8 Distant lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1
09/05/07: PSA 0.1


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 9/28/2007 9:52 PM (GMT -6)   

Hi! Doug,

 

I remember when typing up “Our Journey”…. my fingers seemed to take on a life of their own… Over the past year I’ve added and changed a few things but the core essence of the path we chose is still there!  Hoping to touch at least “1” life with our experience…..

 

After reading your journal entry On the road to recovery...  it makes me realize that what I wrote over a year ago ** hit the target…

 

**excerpt from:   Our Journey ~ Sharing is Caring by....... Buddy & Lee

All different kinds of lifestyles…  different PSA scores, different treatments, different incomes, different jobs, different health issues, all different ages, and most of all… MENTAL ATTITUDES ARE DIFFERENT.

 

Remember… YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…

 

You have just touched many lives with your thoughts and your process and will certainly make someone’s journey smoother by sharing this with all of us.  Keeping you close as we all share our travels along this path with prostate cancer. 

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 435
   Posted 9/29/2007 12:24 AM (GMT -6)   

Doug,

Great writeup!!!  Very informative...  I was interested in Dr Catalona's statement that he recommended open vs da Vinci as open had no risk of adhesions in the abdomen...  I had never heard of that comparison and was wondering if he elaborated on it at all?

I am also finding it mindboggling at the young ages we are seeing PCa...  you at 41 and TC at 44 when dx...  I was 59. Anyway, it gives us more reason to tell our stories to all so more men are aware of this #%! disease and that early detection and the newer treatments are making the odds of living long lives with minimal complications much more possible than the "old days". 

God Bless and praying for many victories in your "Recovery Game"!

Ray

 


Age 59 y/o - Last 3-4 years of annual general health checkups - PSA 5-6
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 Diagnosed as T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx,   approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks post-op incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
7/30/2007 ED improved to about 60% erection and "functional". Only using 50mg Viagra generic every 2-3 days.
9/10/2007 Ran out of pads one day and had no dribbles all day...  Now pad free. :-)


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 9/29/2007 10:27 AM (GMT -6)   

Great post!  Speaking of age, I learned the other day that a friend's brother was diagnosed and treated when he was in his 30s!!  My friend is checked twice a year and so far, has no indication of PCa.

puget 


Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07 = <.01 (Hooray!!)


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 9/29/2007 4:08 PM (GMT -6)   
Hi 41,

My husband and I just read through your post together. Thank you for sharing your journey and insights. So pleased to hear of your excellent path report. A massive relief - heal well now, and take care. Lana & CJ.
Creed_three
Lana posting for husband CJ (49 years). First PSA 3.5 (Nov 06). Open Radical Prostatectomy on Tuesday 17th April 2007. Gleeson 3 + 4 = 7. Confined to prostate. PSA 0.01 (June 07).


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 9/29/2007 4:11 PM (GMT -6)   
Mr. "Young 41 Doug"

Great job sharing your experiences, research and decision processes!
Your answer from Dr. Catalona concerning why surgery first over radiation put very succinctly an idea Tony and others here have discussed passionately.
An idea that I have always believed is a most important part of the decision process for choice of treatment. - Still, a notion that I could not articulate.  This is not to say I am recommending surgery for everyone or even anyone in particular!  Rather that this aspect of surgery must be weighted in the individual's decision process.  Especially the relatively young  individual with fewer co-morbidities.
Quoting this excellent point from your post:

And if I had a 30%+ chance of surgery failing, I challenged him by asking why I should have surgery and then have (chance having) to do radiation anyway?

To this Dr. Catalona pointed out two things that I hadn't really considered nor read anywhere. The first was that if there was biochemical failure after surgery, but the cancer was still at a locally advanced stage, he felt that adjuvant radiation had a better chance of being successful since there would be less cancer cells. As he described it, if you have a termite problem and you get rid of 99% of the termites, you still have a termite problem. The less there is to start out with, the better the chances of resolving the problem.

Secondly, at age 42, even if Proton Therapy was successful and killed all the cancer I have today, since I'd still have healthy prostate cells, I'd still have to worry about whether I might get PCa again, even if I made it 10+ years without biochemical failure post radiation treatment. He suggested that my body had already proven to me that my immune system could not fight PCa. Since my normal life expectancy is longer at 42 than the average age of PCa patients, the chance of getting the cancer again was greater for me.
Much deserved Kudos aside, a suggestion:
I would like to mention that your discussion of the "risk of adhesions" was confusing to me.  Very likely it is some concept I am not familiar with.  [I can confuse easily... :-) ]
However, from my experience, the body will most likely produce adhesions after any open surgery.
I've had several open surgeries in both the pubic and abdominal cavities.
As predicted by urology surgeons both at M.D. Anderson and Austin Diagnostic Clinic,
 the initial attempt for my da Vinci surgery was aborted and completed with open
(not retropubic, rather a "bikini cut.") surgery.

Edit Sunday September 30th
Thanks for the clarification on adhesions in the later post!
As usual, your work is enlightening, thoughtful, and a must read.
It is also an argument FOR retropubic open surgery over ventral open.  THANKS  CC

Regardless, as the others have said, excellent and most helpful work!

Thanks.

CCedar
ICTHUS!


2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?

Post Edited (Cedar Chopper) : 9/30/2007 7:18:00 PM (GMT-6)


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 9/30/2007 4:37 PM (GMT -6)   
Hi 41(AKA Doug)

I must say you long post was very well done. You have told a story that everyone with Prostate Cancer should read. You researched some areas that I only gave a passing glance since I really want that thing out of me. I too had open surgery and I tell everyone it was not that bad. Not a fillet job like I had a radiation oncologist tell me. Breaking my arm last summer was a lot more painful and had a longer recovery time. My shoulder is still not 100% since last June. I am glad you have shared your journey with us and know it will be an inspiration to others. By the way Myrtle Beach was wonderful this week.

Mika

41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 9/30/2007 5:04 PM (GMT -6)   
On adhesions post surgery...here is a definition I found:

Adhesions are strands or of scar tissue that form in response to abdominal surgery and extend beyond the specific site of incision, sometimes forming separately from the incision site within the peritoneum (abdominal cavity). Scar tissue that mends the incision is normal, but the adhesions form additionally under some circumstances that are not fully understood. Laparotomy (open abdominal surgery) is more likely to produce adhesions than surgery performed via laparoscopy in which a small scope with attached microsurgical instruments is inserted through a slit in the abdomen.

The incidence of adhesions following abdominal surgery is cumulative with multiple surgeries. Adhesions may occur as the result of tissue damage to the abdomen besides surgery, including traumatic injury, inflammatory disease, intraperitoneal chemotherapy, and radiation therapy.

The most frequent problem with adhesions is a constriction of the small intestine, producing constipation (sometimes complete bowel blockage, requiring emergency treatments). Abdominal pain is another common symptom, caused when the bands of scar tissue bind up the internal organs so that movements pull on them.

End of definition and complications that can occur...

Now to relate this to the open vs. DaVinci surgery for prostatectomy:

During he open Radical Retropubic Prostatectomy, the surgeon does the surgery below the abdominal cavity so there is no risk of abdominal adhesions that can cause bowel issues.

Without going into tons of details, I had never had surgery, but had a bowel obstruction in my 20's, followed by other occurences. They were more annoying than anything else, and landed me in the hospital for a day or two. 10 years ago, I had one that did not resolve and had to have surgery which was done laparoscopically. The surgeon found an adhesion to my small intestine that he cut. He felt I would be fine after that. However, I've had 3-4 more incidences in the past 10 years that I've had to deal with. None required surgery, but the question is whether even though the surgeon resolved the adhesion during my surgery, whether the surgery itself caused additional adhesions. It's a cummulative problem, and surgery is one of the main culprits. So for me to have had lapascopic surgery would have increased my risk of further problems.

Dr. Catalona believes that this is an unnecessary risk to take when the open procedure doesn't have this risk. And for me in particular, there was no reason to risk making something worse.

The incontinence and impotence risks are the same for either the laparoscopic surgery or open, so what the heck. Once less risk for me was just fine!
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/10/2007 8:46 PM (GMT -6)   
  tongue Helping to keep Doug's Journey together.....
 
Posted 10/16/2007 8:12 PM (GMT -8)
 
 
 
 

41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 7/20/2008 8:11 PM (GMT -6)   
Did I really write all that? 
 
42 yo. now
 
5/07 PSA 4.65 at routine physical
6/07 biopsy positive for cancer...Gleason 3+4...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision.  I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.  Thankful the father of the PSA test was right here in Chicago.
 
Post op pathology was Gleason 3+4 with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  
 
9/27/07 - Catheter removal...let the games begin...
 
12/07 - Threw out the pads.  I only had to use 1 pad per day for protection against minor drips. 
 
I started Trimix 8 weeks after surgery with success.
 
I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
 
 
 


taiping
Regular Member


Date Joined Apr 2008
Total Posts : 62
   Posted 7/21/2008 3:40 AM (GMT -6)   
Doug said...
While I had read that no randomized studies had proven surgery to be effective at extending life, none had been done for radiation either.
Doug,
 
I agree with the above comment. It's interesting that people look at the same facts but come to different conclusions.
Wishing you all the best.
 
Steve
 
Diagnosed: June 2007. Aged 61. PSA 19.6. DRE negative.
Biopsy: June 2007; 2 cores of 18 positive.
MRI and Bone Scan: Negative.
Pathology: 5% of 1 core, "Small focus" in another core +ve.
Gleason 3 + 3 = 6.
Clinical: PCa considered confined to prostate. Stage T1c.
Treatment: After considering RP and HD Brachy, decided on Intermittent Triple Androgen Blockade Therapy for 1-year, using ZOLADEX, CASODEX 150 mg/day, AVODART 0.5 mg/day. Start PSA 19.2 (July 2007).
Current Status: PSA 0.018 (June 2008) - PSA nadir.
---------------

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