Just diagnosed

I am sorry to say it but your thread made me laugh. Choosing a treatment for prostate cancer is a more serious affair than a simple “purchase” of a commodity with which one could be satisfied or disappointed. You may have received such “simplicity” impression from your urologist because he suggested robotic surgery without any established clinical stage. However, without a proper diagnose on one's status, one enters into the “world of guessing”. Luck must be in one’s side to expect to be more "satisfacted" than disappointed, after the treatment.

From the data you share I think that 7 cores out of 12 (????) were positive which makes your case into a voluminous cancer status. Gleason score of 7 is a classification given to intermediate risk for possibilities of existing extra prostatic extensions, which, if existing, would turn the surgery option into a none satisfactory intervention.

I would recommend you to get an image study (ies) done with high sophisticate equipment to have a more reliable exam so that your doctor can get better information of cancer location and then attribute you a proper clinical stage. Once with this in hand you would be then ready to look for a treatment that would satisfy you. PET scan and 3t-MRI are the best ways for an exam you could demand.

I also would recommend you to get second opinions from doctors away from your initial urologist, now suggesting a robotic treatment. You can even recheck the data from the biopsy at a different laboratory (eg; Johns Hopkins) and get there an opinion.

In the end, one could have a great surgery and become cured but become handicapped due to a secondary effect caused by the intervention. “Satisfacted but disappointed”.

Best wishes and luck in your journey.

Welcome to the board.

VGama

I'm also looking for some input.  It's quite depressing, but we just need to move forward.  I'm leaning toward radiation, unless it's spread and I won't find out until the end of the month.  If so, then chemo.  Gosh, I just hope it hasn't spread.  Basically - this sucks.  Take care of yourself.

MurrietaJimmy said:

Good luck my friend!

I'm also looking for some input.  It's quite depressing, but we just need to move forward.  I'm leaning toward radiation, unless it's spread and I won't find out until the end of the month.  If so, then chemo.  Gosh, I just hope it hasn't spread.  Basically - this sucks.  Take care of yourself.

I just replied to Jimmy, above.  You can read my reply on his post, above (Also--Just Diagnosed).

My case was as follows (cut and pasted from Jimmy's post):

I was diagnosed two and a half years ago, at the age of 67.  I had a PSA of 69.  My Gleason Score was (3+4) 7. I had had no symptoms that I had a problem.. I had a Robotic Assisted Prostatectomy in Dec 2013.  My PSA went to <0.010 in two months.  I had 8 weeks, 5 days per week, of Radiation and have been on Lupron for two years.  I am now off the Lupron and so far my PSA is staying "0".  There was 40% involvment of the prostate, and one lymph node involved.  So, I was diagnosed as an early Stage 4.  My MRI's are still clear and there has been no involvent of bones, at this point.  So, there is hope for help fighting this disease.  The fight is hard and some times very frustrating. 

Our cases are all different and what works for one person might not work for another.  I went with the surgery because a wanted the cancer gone.   Turned out the Radio Active Seeds wouldn't have worked because of a birth defect, that my Prostate was adhered to my bladder. They couldn't have gotten all the seeds located where would have needed to be.   

This is a hard fight.   But don't give up. Learn all you can about the treatments and all of the side effects.  Many of the side effects are worse than the disease, as many of us know.  But that's just the way this all goes. 

Know you have friends / brothers here and we are all thinking and praying for you.

Fight as hard as you can.

Peace and God Bless

Will

Welcome, Hopeful.

Fortunately the fight against PCa ordinarily is indeed  full of hope.

As Vasco noted, with as much volume involved with the disease and a Gleason of 7, your case is serious. Not horrific, but significant.

What most caught my attention in your report is that one side of the gland indicated perineural involvement.  This means that the disease has followed nerve tissue out of the capsule. This demands high quality imaging to attempt to see if the disease has spread.  Cases in which cancer has spread ordinarily suggest radiation verses surgical removal.  Any man with any stage of newly diagnosed PCa owes it to himself to also speak with a radiation oncologist in addition to his urologist.  If you see 100 urologists you are likely to get pretty close to 100 recommendations for surgery.   Consult with a radiation oncologist also.

max

Hopeful,

 I agree with Max.  Make Sure and talk to Radiation Oncologists before you make a decision.  My Urologist /Surgeon (Dr. M-----),   INSISTED that I see a Radiation Oncologist before I made my desision.  I was ready to have the surgery done before I even talked to the Radiation Oncologists.  Then when I went to Radiation Oncology, I thought I would go the Radiation Route.  However, the longer I thought about it, I wanted the cancer gone.  As I stated, as the surgery went along, My urologist / surgeon said he would have been the one to implant the seeds, and he & Dr. D------ (Radiation Onclogist) coudn't have gotten the seeds where they needed to be to stop the cancer in one section of my prostatate.  As I said, that problem was becasue of a birth defect where the prostate was adhered to the bladder.  As follow up to the surgery I had 8 weeks of radiation and ADT (Lupron for 2 years).  When I went in for the pre treatment work and tattoos ( to align the machinery) they do before the radiation, the Radiation Oncology people said that I had made the right decision by having the surgery, because they couldn't have gotten the seeds where they needed to be. In order to remove the prostate, they had to make an incision in my bladder to get the prostate removed.  That caused some problems for a bit, but that has improved and I continue to improve as time goes along.

Radiation Oncology will most likely show you what the seeds look like (ones that aren't active).  They will explain side effects, dangers to people close to you, etc.    Also they will tell you about the possibility of some of the seeds working their way out of your body.  I was told that when that happens there would be no danger to family and that the seeds would come out during urination.    My Oncologists gave me all of the worst case scenarios about the entire radiation treatment proceedure.  So, if you aren't sure ask as many questiosn as you can.  Get all of your questions answered about the Radiation and the Surgery treatments. 

I just saw the reply from VGama, as I posted.   Make sure and check those articles he sent you.  He finds the best information, and has helped me think through many things.

Good Luck & Best Wishes

Peace and God Bless

Will

Hi Hopeful,

Sorry to welcome you to the club.  You have received some excellent advice here.  I am in a similar situation and was diagnosed last month.  I interviewed 2 surgeons and 2 radiation oncologists before deciding anything.  They all basically agreed that either radiation or surgery was appropriate and had about the same outcome.  Side effects do differ greatly however.  I am headed for a 3TMRI in about 2 weeks.  UCSF recommended that I wait 6 to 8 weeks after the biopsy to get the best results from the 3TMRI.  You have time.  Read the things these folks recommend and find a doctor with skill regardless of the path you choose.   Good luck.

Hopful said:

Update

Hello to all

Talked to a radiation oncologist. A nice Dr. Took the time to answer all my questions. Thinks I am candidate for HT combined with Rapid Arc IMRT. LDRT/HDRT will not work for me and he is not fan of SBRT. He  Wants me to undergo bone scan and endorectal mri to help develop treatment plan. I told the Dr I have a frequent urination problem that is already very bothersome to me and asked if IMRT will make it worse.  He thinks the problem may get worse  and suggested doing TURP prior to radiation. From my readings TURP is just as bad as prostatectomy in terms of side effects. I am leaning towards prostatectomy if I need  any kind of surgery to treat my coexisting BPH.              I will talk to urologic_cancer surgeon with extensive experience in robotic surgery before deciding.  Is there a  way to know how many robotic surgeries a surgeon has performed (besides asking the Dr directly ). I assume medicare and insurance companies may have this data but don't know if the general public can access it. Appreciate any input in this regard.

 

 

Hopeful,

I would just ask the surgeon himself how many DaVinci prostatectomies he has done.  He should understand the question, and I do not think any doctor would take offense. I asked my doctor, and he seemed to understand that it was very reasonable, but as he had already done over 900, he was probably quite confident to begin with. What I have read is that "proficiency" for DaVinci Prostatectomy is unoffically regarded as around 200 or therabout.

Most doctors have a Biographical video of themselves online now, especially if they are part of a large group or hospital, so you might try checking the website of the practice he belongs to.

I have had a prostatectomy, but never a TURP proceedure. But I do not believe they are similiar in side-effects (intuitively, it seems a prostatectomy would be much harsher to undergo).  It is true that prostatectomy will eliminate the issues with urinary stricture -- a  sort of "two birds with one stone" solution.  Urinary stricture is very generally regarded as a clinical suggestion for surgery verses radiation, and it seems the radiation oncologist partially admitted as much to you.   But, on the other hand, the possibility of cancer having escaped via the nerves points back to radiation, specifically IMRT or IGRT (the two are very closely related).

IF you go the surgical route, be sure that the doctor agrees to (1) remove the seminal vesicles [wing-shaped glands that feed into the prostate gland; these are usually wrapped around the base of the bladder], and (2) remove a lot of lymph nodes for testing.  Virtually all prostatectomies today include the vesicles being removed, but some very minor cases of PCa to not suggest removal of many nodes. My own surgeon told me there was absolutely no reason to "'farm nodes," and he in fact did not.  Your biopsy shows more volumnous involvement and the perineural involvement, so your case is different.  Have the surgeon state what his approach to node removal would be. 

"My take" on your situation:  I would talk to the surgeon at length. Ask him to "sell you" surgery. That is, make a case for why he feels it would better serve your needs. Then I would take a while to ponder all of this.  And I would not rule out the IMRT, not yet at least.  

Good luck with your decision. I hope you decide to share whatever the surgeon tells you regarding all of this,

max

Hopful said:

Update

Hello to all

Talked to a radiation oncologist. A nice Dr. Took the time to answer all my questions. Thinks I am candidate for HT combined with Rapid Arc IMRT. LDRT/HDRT will not work for me and he is not fan of SBRT. He  Wants me to undergo bone scan and endorectal mri to help develop treatment plan. I told the Dr I have a frequent urination problem that is already very bothersome to me and asked if IMRT will make it worse.  He thinks the problem may get worse  and suggested doing TURP prior to radiation. From my readings TURP is just as bad as prostatectomy in terms of side effects. I am leaning towards prostatectomy if I need  any kind of surgery to treat my coexisting BPH.              I will talk to urologic_cancer surgeon with extensive experience in robotic surgery before deciding.  Is there a  way to know how many robotic surgeries a surgeon has performed (besides asking the Dr directly ). I assume medicare and insurance companies may have this data but don't know if the general public can access it. Appreciate any input in this regard.

 

 

Hopful said:

Update

Hello to all

Talked to a radiation oncologist. A nice Dr. Took the time to answer all my questions. Thinks I am candidate for HT combined with Rapid Arc IMRT. LDRT/HDRT will not work for me and he is not fan of SBRT. He  Wants me to undergo bone scan and endorectal mri to help develop treatment plan. I told the Dr I have a frequent urination problem that is already very bothersome to me and asked if IMRT will make it worse.  He thinks the problem may get worse  and suggested doing TURP prior to radiation. From my readings TURP is just as bad as prostatectomy in terms of side effects. I am leaning towards prostatectomy if I need  any kind of surgery to treat my coexisting BPH.              I will talk to urologic_cancer surgeon with extensive experience in robotic surgery before deciding.  Is there a  way to know how many robotic surgeries a surgeon has performed (besides asking the Dr directly ). I assume medicare and insurance companies may have this data but don't know if the general public can access it. Appreciate any input in this regard.

 

 

I am a relative youngster at 53 but just completed cyberknife treatment (SBRT).  I would be "suspcious" of a doctor not being a fan of something he doesn't do.  Everyone is entitled to their opinion and doctors certainly have a ton of training BUT, as noted in many posts and my own experience.  Doctors will almost always recommend a treatment that they personally do.  That's OK, as you are the CEO here, you have to check out the options as you are able.  If Cyberknife or other SBRT is available in your area, just talk to someone there.  Like the other docs, they will push what they know so in the end, you have to make the choice, but I recommend you get as a broad a picture of those options as you can.

Good Luck.