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Recent Diagnosis - Surgery soon

graycloud
Posts: 38
Joined: Jan 2018

Good afternoon.  My title definately fits the mood in our home right now.  This has been the most difficult season for us in a while.  A little background. My husband is mid 50's.  My  husband's father had prostate cancer years ago.   He's doing great considering the barbaric type of surgery they did 20+ years ago.   Because of his father's history, he's had PSA test annually since he was in his 40's.  Over the past 3 years, he has had a rising PSA. Current PSA is 7.8.  The graph has been up and down - not consistently up.  He has had 2 MRI guided biopsy's with negative results (2015 and 2016).  In July, when his PSA hit 7.8, another MRI/contrast was done.  Everything looked clear, but his urologist had us meet with the group's surgeon to review.  Other tests were done.   Decision was made to do Truss Biopsy which was done in October.  We chose this route to "finally get a peace of mind and hopefully get off this roller coaster of emotions every time my husband had his quarterly PSA check."   Well.... that didn't quite plan out like we wanted it to.  Of the 14 biopsies taken, one came back 3 + 3, and one came back initially 4 + 3.(2 local pathologists concurred with  4 + 3).   We opted to look at FLA/HIFU studies and applied to Memorial Sloan Kettering and Mayo.  He was accepted to both.  After our initial meeting with Memorial Sloan Kettering, we seemed to fit the criteria for FLA.  The doctor wanted his pathology group to review the slides.  Their pathologists scored 3+3, and 4+5.  6 and 9.  Not what we wanted to hear.  We sent additional slides to John Hopkins.  They concurred.  He has had zero symptoms of any kind.  Urinary symptoms - none.  ED issues - none.  Pain - none.  Absolutely normal.  The volume of 9 is very very small.  Cannot be seen on MRI.

A bone scan was done a few weeks ago - clear/negative by radiologists locally and radiologists at MSK.  First good news we had in months. 

So we are now on the road to surgery in about 3 weeks.  We've researched, and feel we are with the best surgeon and group -  especially with the nerve sparing capability.  My husband has already met with the Bladder specialist pre-surgery and is doing the needed "therapy" before surgery.  We also met with MSK's ED specialist who has started him on a pre-surgery plan to hopefully help with ED issues.  We started an intense exercise program to get in shape.  He's lost over 30 lbs. since October.  I've made dietary changes as well. 

In the back of my mind, I keep thinking his symptoms and pathology just don't match.  Is it a 7 o r 9?  Are we doing the right thing?  I'm just looking for any input on alternative recommendations.  The emotional part of this diagnosis has taken a toll on my husband's emotions.  I know we can get through all of this together, and I am not as concerned as he is with possible side affects. He is not sleeping, thinking constantly on "what if's".   It's been a true roller coaster of emotions over the past several months. 

I just want the best possible outcome for our family.  My husband and I are high school sweethearts.  We've been together over 35 years.  We have a child that just started high school. I just want us to grow old together.  The gleason 9 is just frightening.    

Thank you.

Clevelandguy
Posts: 462
Joined: Jun 2015

Hi Graycloud,

Boy you are right, you are always wondering what if, but don't let it drive you crazy.  Sounds like you have done some good investigative work which is always a good thing.

Both surgery & radiation have side effects don't let anyone kid you. I had surgery a little over 3 years ago, ED is all gone and still have just a little stress incontinence for which I wear a light pad, probably will for the rest of my life.  Radiation can have late developing side effects also like scar tissue and sometime a higher than normal chance of getting a secondary cancer where the radiation hit.  The pathology report after the surgery will tell you where your future path will lead you.  Hopefully all works out and a long life is in store.  I Know I was scared to death when I had my surgery and wanted to bolt from the surgical prep room.  Hang in there, if you have done the proper research your husband & you should know that you are doing the right thing.  His best day is when they yank his catheter our about 10 days after surgery.

Dave 3+4

Old Salt
Posts: 720
Joined: Aug 2014

Wrong! They do match. Only in very advanced cases with metastases does one experience pain. 

On the positive side, you and your husband have made the decision to go with surgery. And most importantly, the surgery will be at a world-reknown center. Side effects (both short and long-term) can be expected. But it appears that you and your husband have been made aware of them by MSK (GOOD!).

Since you asked for alternative therapies, I would recommend that you consider SBRT as well. Dr Alan Katz (extremely experienced) is in your NY neighborhood, but MSK may have a capable group as well. 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

graycloud,

Old Salt is spot-on.  First, PCa is usually symptomless, or else just displays the symptoms of benign prostate hyperplasia ( BPH, enlarged prostate), so a lack of symptoms does not counter-indicate disease, or even advanced disease.  In this, it is similiar to ovarian cancer in women, or pancreatic cancer in men and women:  All of these do not show themselves until very, very late.

Scanning for PCa tumors is, in layman's lingo, lousy.  Lack of detection on the scans, while I suppose better than seeing them, is not an indication against aggressive disease.  Even the best, even with the newest MRIs.  PCa tumors are just too small until very, very late.  

Second, false negatives in prostate biopsy are common, as is underestimating volume and Gleason.  I was biopisied at Stage 1, but surgical removal a few weeks later showed significant Stage II was in fact what I had.  But false positives or overestimation of Gleason are nearly unheard of.  So, be thankful that the truth about his disease was found in time.  And be thankful that he is being treted at the best cancer center in the world.  Most men with PCa get treatments and options that are inferior to what he will receive,

max

graycloud
Posts: 38
Joined: Jan 2018

Thanks for thoughts and comments.  We are hopeful for a great outcome post surgery.We are thankful our research led us to MSK and Dr. Edhaie! 

MK1965
Posts: 178
Joined: Jun 2016

While it is about time for surgery and what I read in your post sounds like both of you are well prepared and informed which puts your at ease and you can concentrate on other things. I hope you got all your questions answered especially those related to surgical SE like incontinece, ED, penis shortening, loss of libido, nerve sparing and recovery, loss of sensation, inability to orgasm, loss of quality of orgasm, loss of QoL etc. Since decision for RP is already made, he must be okay and accepted surgical risks and SE. Even those who who doesn’t have unrealistic expectations very often get discouraged and disappointed when obstacles are encountreed on the road of recovery.

I had RP almost 15 months ago. So far my post op PSA is undetectable and I regained continence 99% with stress incontinece especially while being active but that is something I can live with. From my experience, hardest to recover is to be man again and recover sexual function with erections sufficient for intercourse. 

I hope your husband will have complete recovery achieving trifecta effect within first year.

Good luck,

MK

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