15 yrs. with Pc. Treated twice with Radiation. Recurrence 2016, second time. Mayo consult. Both seminal vesicles 4+4 cancer. They recommend surgery; only the open will suffice for them. They (Kwon and Karnes) recommend removal of SV;s and 18-20 lymph nodes for proactive stance. Consult outside Mayo and find robotic an option. Whoopee! for I am dreading the open. 11/15/16 complete robotic procedure at U. of MN. Dr. Chris Weight, young gun, does the surgery. With radiated bed, he manages, with the DaVince to complete operation in four hours, slowly and carefully. Got both SV's out. Also able to dig into my existing, dead prostate gland, for additional cancer in roots of SV's. Lab instantaneous results, say 3 layers still cancer found; 4th tissue sample to standby lab., finally shows not further cancer present. Thus I am hopeful that all of the PC is mostly absent in that area. Lymph nodes dissection occurs. With only visual analysis, Doc says lymph nodes look OK. Recovering now at home. Able to be up and about, independent and can take basic care of self. Friends and family are coming with food and company. Major side effects are scrotum all enlarged and bruised. Ice packs here. Urinary Incontinence worse since operation. Doc says it should improve in time. I had stress incont. prior to surgery. 2-3 level, dull pain, in groin area. Manageable. Off pain killers, onto PRN Tylenol and coping fine. Day 8 of recovery. 10-14 days and then some daily improvement, I hope. Not driving yet. Laying low with the cold weather of Minnesota pounding us with ice and snow. Staying home and riding the storm out. Doc Rok
Docrok Update:: 15 yrs. with Pc... - Advanced Prostate...
Docrok Update:
Sounds great! Best for future.
Tx Buddy. U at a similar junction as I am/was?
Not really; my experience started in 04 after I had surgery for colorectal cancer which sewed up anus and also prevented surgery in when Pca popped up in 07. Had HDR brachetherapy (the kind where 18 rods go up through scrotum to where they think the cancer is located and then radiation 3x in 24 hours). Did this twice and they said PCA in remission and a few weeks later said Whoops it is still there. Radiation left incontinence and urination each hour or so making good night's sleep impossible. Recently got condom catheters from VA (coloplast) which hook to bag and I sleep without getting up. Hallelujah! Diapers through the day, about 2 per day, get me through wake time. Have other issues but I will kick cancer's ass.
Hey blammel; Great attitude Mr. Soldier. Carry on. Side effects are crap all right. U find ways to accommodate yourself, more power to you man. We all have our individual experiences with our nemesis, prostate cancer. Glad to know another fighter is out there, putting up some resistance to the terrorists, called Cancer. My best; doc
Hi DocRok it's great to read positive guys, makes us all feel energised and ready to face anything. I had to chuckle at your mention of the swollen scrotum - it's all I can do now to find mine! Zoladex, chemo, steroids, Zytiga have shrunk my testes to large butter beans and the scrotum to the size of a newborn's single fist. I might try radio! Perhaps not?
Keep going and stay positive. Every little helps others. David
Hi Scruffy: I hear you. From one extreme to the other. Somewhere in the middle please. Nurse told me that the swollen scrotum was due to lymph node removal. Fluid in there, really? That sure is a lot of fluid, and the bruising part of the testacles, hmmm. I think they roughed me up with the tube up my penis to put two stents in my ureters, as the tubes coming down from my kidneys to my bladder filling it with urine. Damned side effects of drugs too huh, now shrunken balls? What the hell do we have to do to just keep on rollin'? Tx for your comments. Doc
Yes Doc keep on rollin' but not on your balls!
Yes Scruffy: My scrotum has finally begun to return to almost normal size. 10 days out of surgery. No pain, just discoloration and "big balls" as one of my buddies said. No balls to the wall with this kid. Tx for your support buddy. Doc
It is very rarely one can learn of a case like yours where salvage prostatectomy ( Robotic ) has been done so many years after the initial treatments with radiation. ( Very tricky and difficult surgery, the entire tumor having been debulked, SVs and many LNs removed etc.) Oh my God! What a miraculous surgical performance!
Thank you for joining us to tell your story. It is really worth learning more about your case being a 15 year survivor. What was your PSA level when you were diagnosed 15 years ago and what was your age then? Were you treated only with radiation and when was the first bio chemical failure ( recurrence )? What was your PSA before surgery in 2016 and what is it now?
Did you know your cancer staging at any time - TNM?
You have definitely handled your PCa with lot of courage and can be an inspiration for many of us and I think you are in the safe hands of wonderfully skilled doctors at Mayo. You will recover soon and please keep us informed of your progress.
Wish you all the very best.
Sisira ( My true name )
Hi Sisira: Yes dude, if U look under my history, U will see my narrative. Very briefly, just for summary; 2001 dxed with PCancer, 3 + 3 Staging 2a here. Did 42 sessions of IMRT. Went 10 years hence, with a nadir PSA of .54 4 yrs. out. Over next 6 yrs. PSA rose to 2.0. Another biopsy. Cancer found in prostate gland again/yet, now one 4 + 3 and 3 + 4. Staging moving up to 2b or 2c. Do brachytherapy or seed implant. Go 5 years out to now, PSA rising more rapidly last 8 months. PSA doubling Time now 6 months. Go to Mayo (I live in Minneapolis, Mn). for smancy fancy c 11 choline acetate Pet scan. Find only detectable cancer in right seminal vesicle. Do biopsy and document cancer in both seminal vesicles, not in existing, radiated, dead prostate gland ( I still have mine). Staging is usually 2 c and maybe 3a, just outside of prostate bed. Depends upon who I talk to doc wise. Right on the border though of 2 to a 3 staging wise. They recommend surgery, not hormones, for that is doc Kwon's attitude. If U can locate the cancer, he feels to go after it, especially with me since no other cancer mets showed up on my scans. They recommend open surgery, rule out cryo. I get another consult on my situation and find out, separate from Mayo, that the robotic is an option and actually a better choice than the open. Much relieved to hear. Do surgery on 11/15/16. BTW I found out from the pathology report and all my lymph nodes removed, 10 in all, all came back negative for cancer. Could be very good news buddy. Yes surgery on the radiated beds is possible I have learned. One needs to find a willing and competent surgeon to do it. Too I think the Davinci robotic is the best choice to perform the operation. And like in my case, if one can locate the basic nest of the vipers, it may pay to eradicate them with surgery, radiation, HIFU, proton beam, or whatever else U can find. In my case, since I had been radiated twice already, proton, cyberknife, or other additional radiation was off of the table. Cryo not as able to get all of the cancer removed from SV's, was the take I got from the mayo consult, due to limitations of access through the skin. I may get lucky here guys, and then again I am not so naïve as to believe that there are no microscopic cancer cells still flying around my system. Will they root into tumors? I do not know. In the meantime I am hopeful that my PSA will come down and stay flat as I move ahead into the wilderness. Doc
Great writeup. I love your attitude. Six year survivor here after RP and radiation and so far no recurrence.
Great news! Hope your recovery continues with no glitches.
Hey yes sfboy. Tx for the shout out. Me too, I hope I have that nasty nest of vipers and that things settle down with the PSA for a bunch of years. Too much to hope for??? Doc
Definitely not too much to hope for. Especially since the lymph nodes showed no cancer. That is good news. Happy Thanksgiving Day!
Tx man: I am feeling optimistic with the news of the clean Lymph Nodes. 71 now, and want a reprieve from this active surveillance where the PSA just kept rising. I hope my efforts with the recent treatments will pay off. Looking for 3-5-7 years of freedom from daily worry over rising PSa. It has been a long journey with this nemesis, starting out in 2001. Happy Holidays to you buddy. Doc
Hi Good to hear you got the treatment that was best for you. Good luck and best wishes for quick recovery.
Bill
Hello dollar man: Yes, it took a lot of work and advocacy and drive my man, and I did get the best treatment I could find in my area of Minnesota. I would have liked to have gotten a consult on the HIFU but that option is not really available in the Twin City area. FDA just recently approved the procedure, and no one has purchased the million dollar machinery to use it. A few local Urologists, have been flying down to the Bahamas or Cancun,. where it is legal. I think they are standing by to jump into the HIFU when some outfit invests into the technology. Since I wrote yesterday, I have learned that with the lymph node dissection, actually 10 nodes were removed. All came back negative for cancer from the path. lab. That is good news and validates that the main nest of the cancer may have been in the seminal vesicles. With both removed now, I am hopeful my PSA will drop way down, and level out over time. Got my fingers crossed. In the meantime my recovery, Day 9 now, is tolerable and I get very small glimpses of progress. Still the rate of positive change is too slow for me. I am an impatient man and have to practice more of the P word. Tx for giving me a holler'. Doc
Thank you very much Doc for obliging with a detailed account.
The key learning point for me is even a GS 3+3 low grade PCa should not be taken for granted.
Best thing is to hit it as hard as possible and destroy the tumor before microscopic cancer cell leakage could start ( This can happen even at a very early stage ).
Some times harping about over treatment, preferred watchful waiting, non pervasive diagnostics, being too concerned about the quality of life can be detrimental and self defeating.
No one would ever think of going for a Radical Prostatectomy with a low grade cancer for fear of side effects which may affect their quality of life for many years and they will choose periods of remission as a preferred way to deal with the cancer rather than to attempt for a cure. It indeed is a tough decision. But in the end it will prove to be a lost opportunity of a possible cure!
Best wishes for your quick recovery and stable health!
Sisira
Good morning Sisira: Very cogent observations and attitudes expressed in your response to my narrative. Hindsight is always 20-20 they say. I was walking a tightrope early on in my journey, in 2001, of wanting the least intrusive treatment with the best results. In 2001, the open surgery, radical prostatectomy was the only surgical method available. Now with the Davinci, a better choice as of 2005, and one most men make at this juncture in their story, given the choice of surgical procedures offered. Radiation remains a choice, and I have several men who have been radiated once, with the IMRT, and are still cancer free, low PSA's years later. No guarantees in this struggle, tough decisions as U mention. U seem to be in the camp of "hitting it hard-full steam ahead." Yes and no for me. Got to smash it and yet I can "dance around the thing" hoping the lesser interventions, do offer the "cure" I was looking for. After two recurrences since 2001, I am jaded to think I ever cure this crap. At 71 now, I would like 3-5-7-10 years of low PSA's not rising. That is what I now have my sights set on for me man. Tx for your sharing's and support buddy. Doc
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