RALP "Bail-Out"

Hi everyone, I am new to the forum and a relatively new PCa patient. A few years ago I started experiencing unusual nocturia which did not respond to the initial treatments recommended by my FP; as such, the FP referred me to a URO. Thus, I began PSA tests at 6 month intervals. When my PSA rose from 2.6 last summer to 3.4 over the holidays, my URO offered a biopsy, which was administered last January and indicated G6 (3+3) T1C (10%, 5%, 5%). A second opinion from JHU confirmed the original DX but added an indication of PNI. At DX I was 38 YO; will turn 39 in July.

At my DX consultation my URO provided me with a copy of Dr. Patrick Walsh’s book, The Guide to Surviving Prostate Cancer, which I found to be an impressive overview of PCa DX implications/outlook and treatment options. It left me with the view that RP was probably my best option. With PCa onset at such an early age I seem to stand a greater chance of “dying from the disease, not with it”, and I preferred RP to radiation because RP enables a thorough biopsy of the prostate specimen and has a more clear definition of PSA re-emergence compared to the somewhat fluid PSA framework used to assess radiation results.

I scheduled a RALP appointment at JHU for May 15th and remained firm in my conviction that RALP was my preferred treatment. When it was time to fly out to Baltimore I boarded the plane accompanied by both parents. However, losing fertility was a lingering concern. I am single with no kids or ex-spouses and have been ambivalent about having kids, but the prospect of losing sexual fertility was a bit startling. I know it is still possible to have kids after an RP, and I took measures to retain that prospect. That said, I still harbored reservations about losing my sexual fertility. Although my parents have never pressured me to have kids, I am their only child, and I am sure they would like grandkids. Whether true or not somehow I feel that an RP will diminish my odds of starting a family.

We flew to Baltimore a couple days before the surgery and my misgivings increased as I spent time there with Mom and Dad. The night before the surgery I was wide awake frantically researching treatment options, unsure whether to go ahead with the surgery or to cancel, vacillating back and forth in my thinking. I read about Dr. H. Ballentine Carter’s AS study at JHU suggesting that participants were successfully delaying interventionist treatment without missing the window for cure and that younger patients were fairing especially well on AS. Then I discovered that the AUA now recommends AS for Gleason 6 patients. With this information I just was not comfortable that I had made the right decision to pursue a RALP so quickly, thus I cancelled in the wee hours of the morning, only an hour or so before I was due to check-in for the surgery.

While this was kind of a harrowing experience, I am still glad I became enrolled in PSA screening. Although my DX was not good news, I think it is better to know that there is a tumor in my prostate so that I can make informed health decisions. I feel like we are in somewhat of a tough decision-making backdrop because not that long ago AS was considered perilous for young patients but there has recently been a change in thinking in favor of AS. This could be a positive development, but the information out there can be confusing given the recent shift in treatment commentary. I felt bad that I cancelled on the surgeon at the last minute but was just not comfortable and thus was compelled to “bail out”. Frankly I should have been more active about researching resources beyond the Dr. Walsh book. I did review a variety of resources prior to my trip, but it was only until it came down to the wire that my sense of urgency spiked and I discovered Dr. Ballentine’s study and the AUA AS recommendation for Gleason 6.

I am somewhat concerned that I will experience grade progression on AS and will need an RP because 1) PNI has been linked to faster grade progression in AS 2) with 3 positive cores I do not fit the profile of the ideal JHU “very low risk” AS patient and 3) my PCa seems to have symptoms (dribbling, nocturia, pressure in right hip although I am not certain this is due to the PCa).

Anyway I am glad that there is a forum here for people to share their stories and perspectives. I look forward to contributing to the discussion, and I wish everyone health and wellness.

Welcome Cruiser, sorry to hear about your diagnosis at such a young age, but glad it’s low grade.
Sounds like you are on the right track in doing lots of research, and educating yourself.

What makes your bailout decision the right decision is the simple fact that you were not convinced it was right for you. That may change in the future. But for now you did the right thing. You can always change your mind in the future if circumstances change.

I applaud the courage it must have taken to bail out at the 11th hour.

Well done, Cruiser!

Trust you thanked Ball Carter and apologized to the surgical team.

The updated 4th edition of Walsh’s book, just released, would probably have helped you more.

AS make sense, just remain vigilant, and best of luck.

What we're dealing with Cruiser....it's not "right" or "wrong" .... it's "we're doin' the best we know how"..."we're doin' the best we can".

People make decisions with this stuff....and when it goes south...they can sometimes take more blame than is due them and leave no room for bad luck....just as....when things go swimmingly...people can do the same thing on the other side of the coin and take all the credit and leave no room for good luck.

Hopefully the surgeon didn't get too upset if it inconvienced his morning schedule.

I know mine didn't...when just as they were about to turn on the gas....I said "no"...got up off his operating table and walked groggily out of the hospital and into Central Park.

Patrick Walsh said in an interview...."Before PSA came along, I had no way of knowing it, but for 90% of the men I operated on, I was doing each one a whole lot more harm...than good." This...coming from a man whose probably done more good...for more men with prostate cancer...than any other single human being (or two) has in our life time.

You're gonna be just fine man.

Take care and good luck

My surgery was moved up 3 hours because the guy ahead of me left the building after getting his belly shaved.

Hey Cruiser, welcome. You may have the dubious distinction of being our youngest diagnosed member. Good for you for making the AS decision. It may be that you'll be one of the truly fortunate 50% who never need to treat aggressively. Time will tell.

Keep telling your story. It's an important one.

Great, you did the right thing.
My brother had a hurry up RALP from the advice of his uro and has had side effects for the past 2 years and no end in sight; he was a G6. He could have benefited greatly from AS. My MO explained there are many different kinds of PC, not everybody should have a ralp.
Larry E