End to active surviellance

[GeoffNoLongerAS]

I have been on active surveillance for eleven years. That has now ended. For the last couple of years my PSA has been slowly rising, doubling time, 3.0 to 7.5 over 11 years. I switched treatment centers to Barnes Jewish/Wash U in St. Louis (due to relocation not an issue with my previous treatment ctr.) My new urologist strongly recommended and MRI and biopsy. I had the biopsy right after Christmas, got the results 2 days before we were leaving on a 2 week cruise in the south pacific (fortunately just before the issues with cruses there). Three positive were positive, 3+3, 3+4, and 4+4. One core 75% involved.

Not the news I wanted. My wife contacted the nurse at the prior office (we had been there 10 years and become involved in support groups. My wife had become friends with her). She suggested a book, Guide to Surviving Prostate cancer by Dr. Patrick Walsh (full disclosure I have no interest in nor know Dr. Walsh). I downloaded the book and took it on vacation to read. It was a great book to read with some sound information though the field is rapidly evolving and some some information may be old. I would recommend the book.

I had set up an appointment with a surgeon for a couple of days after return. He answered our questions directly and we had a good discussion. He was straight forward about outcomes from surgery. A week or so later we met with a radiologist that also went as well. My wife and I talked it over for a couple of days and I made the decision for surgery. The main reasons were from the MRI it appeared to be organ confined both my urologist and the surgeon agreed. By going in to take it out, the surgeon could get a look inside, the tissue would be biopsied, and radiation would be a fallback. With radiation the tissue would be destroyed in place. With radiation if there were to be side effects, they would develop over time and be permanent. With surgery they would be immediate and may be recoverable over time. I opted for the eyes on approach.

I had a laparoscopic prostatectomy on Marh 2nd, the doctor was optimistic and said the surgery went well. I received the results yesterday, lymph node negative, cancer organ confined, the amount of cancer only slightly more than the biopsy, and no evidence of cancer outside of the prostate. I could not have had better news. Next step is PSA in 6 weeks.

I have been asked if I regret my original decision. Eleven years ago I made the best decision for me at the time. Additionally I look it as 11 years of advancement in treatment, that I provided 11 years of additional experience. No regrets.

We will see what the future holds. One thing is I know I have a great partner to go through this with, she has been very helpful and has had excellent guidance.

[Ramp7]

When I was first diagnosed 12 years ago, Guide to Surviving Prostate cancer by Dr. Patrick Walsh, was may path forward. Like you, I was pleased with all my decisions,

no regrets.

[jimreilly]

Best of luck with post surgery recovery, including that PSA

[peterman]

GeoffAS, Thank you for sharing your story and advice on the book. I am early in my active surveillance having been diagnosed 2.5 years ago. While I am comfortable with my decision now, it is reassuring to hear confirmation that it is a course of action that has worked well for others in the long run.

[GeoffNoLongerAS in reply to peterman]

peterman, Glad you are able to do AS going forward. There has been a lot of improvements in the understanding and monitoring of AS. For example when I started a color Doppler guided biopsy was on the forefront. Now we have MRI guided biopsies. It was an MR that gave the first clue it was spreading.

During the 11 years I was on AS there have quite a few advances in all areas of PCa treatment.

The one piece of advice I would have is use the time to monitor the changing landscape in PCa. Read all you can. If and when you need to change course it can happen rapidly (it did for me) you want to be ready.

I hope all goes well for you going forward.

[Mufj]

Hi

Wish you best of luck on youre next stage

You bought youreself 11 years free of SE and 11 years of treatment advances. So you did make the right decision at a time that was more difficult to make(fewer tool avail and less info)

Since I am on AS with low vol g6. And clean mri would like to know your story

Again best of luck

[GeoffNoLongerAS in reply to Mufj]

Mufj, I would be glad to tell you my story, anything in particular?

I was diagnosed Nov 2018 and scheduled for surgery 4 weeks out. Through a series of fortunate events I ended up at an UsToo meeting and was introduced to AS. My original surgeon was not happy when I cancelled surgery. I met with him and mentioned AS. His comment was sure we could watch it and when I was ready then we would operate.

I had the slides sent to a couple of places to be read, all results very close the original result. I learned about color Doppler biopsy and went to see one of the leading proponents at the time. Didn't help

I found an AS study at Northshore University Systems outside Chicago and I signed up. Pretty much followed the protocol. The entry biopsy confirmed the original diagnosis, 2 cores 3+3 5% or less. Originally scheduled for a biopsy annually. The second biopsy put me in the hospital with a blood infection. I was biopsy adverse after that point.

We moved mid 2014 to the St Luis area. Originally continued in Chicago. Last year decided to go to BJC/Wash U. to avoid the long drive. Mri showed significant cancer. The usual route, meeting docs, reading the book, making decision, scheduling surgery (and 2 week cruise in the middle). Surgery March 2nd, back in FL now (we moved mid last year, have trouble staying in one place too long). Now dealing with SE.

[den44 in reply to Mufj]

Hi. I thought you may want to know my story as well. My PSA rose from 2.5 to 4 over 2 years. Prior to that it was about 2.5 for many years. Based on that increase, 3.5 years ago, my urologist recommended a biopsy. The results were 3+4 (5%) in 1 core. I decided on surgery, which was cancelled. I decided to send the slides Dr. Epstein of John Hopkins. He couldn't confirm any cancer and suggested a second biopsy. The results of the second biopsy were 3.3 (5%) in 1 core. Dr. Epstein agreed with the results. The original pathologist then sent both sets of slides to a pathologist at Sloan Kettering, who said both biopsies had one 3+3 (5%) core.

Yes, three different opinions on the first biopsy and 3 of the same opinions on the second biopsy. I've been on AS for 3.5 years and, since that time, my PSA has never been higher than 4. In fact, it was 2.5 about 2 years ago.

I can't have an MRI because I have a defibrallator in my chest. I am scheduled for another biopsy in 2 months.

[j-o-h-n]

Remember: NEVER "coulda, woulda or shoulda".... Damn the little bastards, full speed ahead.

Take your wife to a special lunch.... at Costco's... make her pay.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/13/2020 4:02 PM DST

[GeoffNoLongerAS in reply to j-o-h-n]

Yep, don't look back and keep moving forward, good advice. And yes I have taken her out to eat.

[j-o-h-n in reply to GeoffNoLongerAS]

Okay, now how about taking my wife out to lunch? (you pay)...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/15/2020 5:55 PM DST

[RonnyBaby]

11 years is a good outcome under the circumstances.

There's an indication that it was a slowly progressing condition with the outlook for a reasonable opportunity to fight back the PCa.

We wish you well - keep us posted.

[GeoffNoLongerAS in reply to RonnyBaby]

Thanks.

[Jeff85705]

Congratulations GeoffAS! You made the correct decision for you, especially with the fairly aggressive cancer it became (Gleason 4+4). I too picked laparoscopic prostatectomy. Unlike some who rave about radiation therapy here, I chose surgery to get rid of the offending organ (gland actually): the prostate itself. It's not for everyone, but I researched all options, saw my urologist, a RO, and a clinical oncologist for an overall view of the situation. I chose surgery and, despite its after effects, have not regretted it. Best wishes to you as you go forward.

[GeoffNoLongerAS in reply to Jeff85705]

Than you for the best wishes. The one thing I have learned through the last 11 years is there is not any one size fits all option. There are pluses and minuses to each. Each person has their own outlook on life, what they can tolerate, etc. The best advise is to research, understand, research, talk their doctors, and listen.