Just got my biopsy results .. now what?

Avi, I believe you ment to say RP (radical prostatectomy).

Hi Grahambda:

My dad was 71 years old when he got diagonised with PCa back in April 2017. His GS was 9 with cancer spread to nearby lymph nodes. He is one of the healthiest person I know (wakes up at 5 AM, exercised every day for an hour and walked 5K every single day rain or shine, feeling good or under the weather!). He underwent RP (with removal of lymph nodes) in September and below is his journey so far post RP, hope it helps you in some ways:

Positives:

He had no complications post surgery (except Lymphocele which I will share in detail below). He had no issues with incontinence. Once the catheter was taken out, he felt and behaved like a "new" man full of excitement and got back to his true passioon of visiting different countries. His follow-up PSA scores were<= 0.1.

Negatives:

I read his is a rare case but 6 months post RP he went in for a routine follow up visit and the Dr found a lump in his abdomen. They did US and found it was a lymphocele. They put in a drain pipe in the abdomen, monitored him in the hospital for couple of days and released him. Once he went home, he complained of pain in his left hand and was taken to another multi-speciality hospital where they said he had experienced a massive heart attack (not sure if the ymphocelle and heart attack were connected). They could not do an agioplasty since he still had the drain pipe in his stomach and the Drs were scared that if they gave him any blood thinners he might bleed profusely. Finally the urologists and cardio guys met and decided he was ok to have the angogram. The results showed blockage in his heart but not that bad that it needed angioplasty. He was prescribed a few meds and sent home. His Lymphocele has still not drained completely since past 6 weeks, but recent US showed that it is draining and he has a follow up again next Wednesday. 

I am not trying to scare you wth the above, but just sharing what my dad is going through post RP. Please make sure you and your surgeon know about the Lymphocelles post RP even if it is rare occurances! 

Wishing you and your family the best!

Avi.

Robotic Davinci surgery was exactly what was required in my case... but the PC was entirely contained and had not escaped the capsule.

It like a sealed box full of roaches in your house. As long as the box is sealed, the easy solution is... get the box out of the house!

But once that box gets opened, roaches start scattering... taking the box out of the house is no longer the easiest option. 

As for side effects, the one that is inevitable for RP is the shortened length that we discuss at length (pun intended) throughout this forum. I lost 2" for sure. .. it may be because of the size of my prostate, i dont know. With BPH and a Staph infection, I dont know how big it was when infected, but it would shut all my plumbing down. With antibiotics, I could knock down the size to a manageable 250cc when i had my biopsy, and then down to 197cc during RP. As long as I kept it in the 200cc range, I could function with Cialis and Flomax. Once the infection flared up, it was off to the ER to get a Foley. 

At 197cc during the operation, I dont know if it took more of the urethra along with it. It may have had nothing to do with it... I don't know. If it did, then most guys probably don't have to worry about losing that much.

Incontinence was 6-8  month recovery, now about 98% recovered. I fold up Viva paper towels and stick a piece of double sided carpet tape along the folded seam. Much cheaper than minipads and more comfy. Since I hardly ever drip, they work fine in the rare occasion... I probably could get by without them.

ED for much longer with more gradual improvement. After over a year and a half, I have full recovery except for quirk... I have to make sure bladder is completely empty before any sex or... you get the idea.

So you asked, those were the side effects of RP in my case. It was an absolute necessity for me... but it may or may not be right in your case. Every procedure should be on the table and your urologist/oncologist/GP should have ONLY your best interest at mind.  There should be no other motive. In my experience, that is not easy to find, but they are out there.

Hi,

Well that's your opinion, I think they are very relevant to what radiation can do to you. I have no regrets with my surgery and I am not trying to justify anything.  Just trying to let people know that all treatment plans have side effects.  Pick and choose carefully after you study them because they can effect you for a long time after you have the procedure. Surgery & Radiation have different effects both long term & shorterm.  It's all out there on the internet, just look it up.

Dave 3+4

Don't know if I would compare Pca to a car/pedestrian accident but I guess stranger comparisons have been made. AS is fine but does nothing to get rid of the cancer, it just monitors it.  Great if you want to do that but I wanted to treat my cancer.

Dave 3+4

Yeah in my opinion active growing cancer is not a thing I want in my body, just makes sense to me. No doctor guided me to this decision, something I knew I wanted long before I saw a doctor.   Just my choice to not let it grow and become more of a ploblem later on.  If I would have done AS my cancer would have escaped and spread to my bladder and Prostate bed. AS might be a good choice for you but that does not make it right for everyone, depends on where the cancer lays inside of your Prostate, mine was close to the edge.  Intervention was necessary in my case.

Dave 3+4

In surgery vs Radiation contest my vote goes to Radiation.

Radiation SE are delayed and progressing slowly so you don’t experience them as total nock down where you loosing your game. You have more options, non invasive options, to counteract them where in most cases PDE5 inhibitors are working giving you your sex life back. 

What I like about it, livin life as it could be possible at older age. Pop up Viagra and do the job. If your heart is strong enough, sex Life could be as good as with normal aging.

i would forget everything about surgery if, if at least I would have some kind of semi sex life. I am 17 months post RP and my last attempt to have a sex was last Labor Day weekend. Also missing ability to experience good and satisfied orgasam. I am in sexless life now.

MK

I had the Prolaris and PTen tests which were worth my time especially considering AS. A second review of my biopsy slides by MDAnderson pushed me over to Hormone treatment as it changed my intermediate to the advance side with a 4+3=7. I also sent my samples to John Hopkins, but it won't change my treatment opinions. I am leaning toward pencil beam proton at MD, but could do treatment with radation at local hospital. It depends. I will need 48 days of treatment and although I can stay with my son in Houston I would rather be home with my wife. It is a hard choice but take your time. Good Luck!

68, PSA 5-18: 12.7, 4-30-18: 13.9, 1-30-18: 13.2, 1-13-18: 13.7, 5:04-12: 2.1

3-month injection of Lupron 5/21/18 Bicalutamide 50 mg 30-day supply

3+4=7 in two cores 2/13/18 or 4+3=7 MD Anderson review of images 5/21/18

1.8 lesion MRI T3 3/27/18 Bone scan clean

grahambda said:

So the opposing view from a Robotic Surgeon

I met with the Dr that performed my biopsy earlier today to gain his insight on my prognosis and recommendation. Not surprisingly as the leading  radical robotic specialist (11,000 surgeries and counting !)  he was suggesting  that surgery was the way to go given my age and biopsy results. In summary his thoughts...

 

 

• Although he concurred my current state is on the lower end of intermediate risk,  but  due to the fact that 7 of the 21 core samples were confirmed cancerous  Gleason 6 (3+3 for three  of them) and Gleason  7 (3+4 four of  them) and were widespread in the right lobe and near the exterior of the gland,  in his opinion  Active Surveillance (AS) is not recommended as I already have a 15% probability that the the cancer may  have escaped the gland.
• When I requested a Genomics DX test he was fine  to make that referral  and would expect the result to return a low to intermediate  risk of aggression  given my Gleason and PSA score , "but the cancer is not going away and will only get more aggressive over time,  so a low DX score today may convince me to go the  AS route but this would delay the inevitable and longer I wait the probability of the cancer growth and spread is guaranteed - its not  IF but WHEN"
• When we discussed radiation as a treatment option in his opinion: "the side effects will eventually equal or exceed that of surgery, difference being with surgery the impact is immediate (ED and incontinence) but with a 90% chance of reversal within 3-6 months (of course no guarantees)  vs Radiation where the side effects will inevitable occur  but at a later date (6-12 months). He also noted that due to my biopsy revealing a widespread cancer within the prostate the radiation would need to attack the majority of the gland which could be an issue and needs to be considered. 
• He also cautioned that radiation "may" cause the secondary  spread of  cancer , so although it may treat the prostate there is a published high probability that cancer may appear in the rectum, bladder, colon  etc at a later stage  which would result in far more radical surgery being needed to address those areas  vs the  immediate  removal of the prostate which would greatly reduce  any such risk..
• He did make an "of the cuff" remark that if I chose the radiation route "that is  fine- but eventually you will come back to surgery for removal with  more serious  consequences and a higher probability of permanent   ED and continence issues".

 

So as you can imagine I am now totally confused, concerned  and unsure of which direction to take :-(       I know that the final decision has to be mine but to reach that conclusion  I need to be as informed as possible and have no regrets post- treatment regardless of outcome.

 

Thnask once again in advance for any input.

It will be important to take your time and do some research. Your surgeon looks like a a high volume guy and maybe he has some patients that are willing to talk to you. I would ask him. Also get a second opinion on your Biopsy and get andy genetic tests and T3 MRI or other test done too. These will all help with staging your cancer treatment. I like the new book by Mark Scholz The Key to Prostate Cancer. There are a ton of other books too that you can probalble find used on Amazon. I think everyone needs 3 or 4 months to really figure this out. No treatment option is great, as far as potential side effects.