Leave AS behind now?

[Hope4Happiness]

Looking for some insight and perspectives here:

I've been on active surveillance since August 2017. My fifth biopsy (!) revealed Gleason 6 in two cores. Here is my current info:

Age 52 at Dx - 8/17 (5th biop); MSKCC-NYC

2 of 14 cores: Right base medial, G6, 1%, 0.1mm; Right apex medial, G6, 3%, 0.5mm

6/17, Pre-biopsy: MRI - PI-RADS 3 - hypointensity in peripheral zone; no dominant lesion or adenopathy

Prost. vol. 43cc

PCA3: 29

PSA at Dx: 6.19, fPSA: 23%

PSA, 2/18: 6.06

Confirm. biop. (4/18): 1 of 14 cores: Left apex medial, G6, 2%, 0.3mm

PSA, 8/18: 6.41, fPSA: 22%

Well, I just had my six-month check up in March 2019, and my PSA came back at 7.54 with a free PSA of 23%.

I was supposed to have an MRI this August, but I'm think I should just get that done early and move right to a curative procedure.

Although I've had six (!) biopsies since 2009 and only a very small amount of G6 has been discovered since 2017, I think I just get ahead of this and take action.

What say you?

[aceace12]

Looks gud to me for AS . But curious why so many biopsies? Is this prodacal

[Hope4Happiness in reply to aceace12]

Thanks for your response. Since I was in my 40s, my PSA was up and down between 4.0 and 6.0. Starting in 2009, that seemed to be the standard procedure to figure out if these high numbers were caused by cancer. The biopsies always came back negative until 2017.

[123-Anoka]

What curative procedure are you considering?

[Hope4Happiness in reply to 123-Anoka]

I've been investigating all the procedures during the years, and I am leaning toward some type of radiation treatment -- low-dose brachy, high-dose brachy, or SBRT. The curative results with SBRT for the type of cancer that I have seem to be positive with the balance of manageable side effects.

[NashTim]

I have been on AS since 2015 and have had 5 biopsies and just as many MRI's, with a Gleason 6...I plan on staying on AS for as long as I can...….

[EdinBmore]

First, I'm not a physician. But (isn't there always a "but"?), I'd get a second opinio: from another uro at another site; and from radiation oncologists. If you remain undecided, then, talk with a medical oncologist. Weigh the pros and cons of treatment now vs. later and type of treatment that makes sense for you. For myself, I chose ADT, beam, and seeds; a trifecta approach. The ADT has been the worst part of it for me. But, if you choose radiation, I suspect a recommendation of either beam or seeds; not both. For whatever it's worth, both are non-invasive, quick to recover from, and provide comparable cures to surgery.

Second, from the numbers you reported and from I know from my own 7 yrs on AS and recently treated PC, it seems that yours is low risk. It comes down to: is having cancer worrisome to you? do you dread the idea of cancer inside you? are you preoccupied with the whole idea? If so, then, treatment seems to be in your future sooner rather than later...but give yourself time to make the decision; it's life altering and it cuts to the core of who we are as gay men. Just saying!

You mentioned a MRI. MRI fusion guided biopsy? I'd definitely have that procedure before making a decision; it targets the suspicious areas and provides better info about extent of cancer.

For me, I treasured keeping all of my parts in working order and was in no hurry to be treated. No matter the treatment, your life will change BIG TIME. Make sure you learn as much as you can, talk to as many specialists as you can, and have a support network...and...good luck to you.

I found Patrick Walsh's book, "Surviving Prostate Cancer," very helpful in spelling out clearly the treatment options.

EdinBaltimore

[kayak212]

In my short 3 1/2 years on AS i have learned from participating on several very valuable boards like this one that a lot of people do seem to seek multiple opinions from specialists as they try to figure out what to do or what is best for them. To some extent i havent been much different getting second opinions on my 2 random biopsies, on my latest MRI and on my overall case when my original Urol suddenly retired. That said, an overriding feeling i have developed during that time has been how hard it is to truly get what you feel is an honest, objective opinion from a specialist about what the best course of action is for you and your case. Even though honest , and trying to provide you with the best recommendation they can, most if not all Urols an Oncologists frame their recommendations in terms of their experience and backgrounds...what they do well or what has worked well for them. I recently had a friend who is the head of an excellent PC website tell me that he felt i was looking for a "perfect " solution in my effort to figure out what to do about my PC. Unfortunately, he told me, it isnt out there and in the end only I will be able to decide how to proceed and that decision will be based on a lot of subjectivity...given the nature of the beast, for example, biopsies, MRIs are reviewed by humans and while there are guidelines to follow they arent as absolute as we would like them to be to help make our ultimate decision/s easier. I assume many of us started out like i did with an increasing PSA who didnt know squat about PC so we went forward and learned the hard way about all the pitfalls that exist in our PC journey. I recently attended a PC conference which was excellent.Two of the presentations involved 5 individual specialists...Urol or Rad Onc..who discussed a variety of approaches to diagnosing and treating PC. Each of them had 15 or more years of experience in their area of specialty and in spite of my having acquired a fair understanding of methods of dealing with/treating PC over the last 3 1/2 years, I can honestly say any of the 5 would have made an impressive argument for using their form of therapy etc to deal with PC. They werent selling their preferred method....they just had so much experience with it they were convinced it was the best overall treatment method for the majority of PC patients. I came away from that conference glad that i had attended it, but feeling a little helpless about how best to proceed to make my decision about treatment if i decide to have any in the future.

Im sorry for laying out this boring story, but I feel bad for new PC patients like we all were at one time in our desperate effort to find the magic best path to a cure. Unfortunately, my own perspective is that i will only know if i made the right/best decision when it is too late to go back if it doesnt turn out well. Hope4happiness...if i could only have one thing...a Urol and Rad Onc that i felt i could trust 100% to give me an unbiased objective assessment of how i should proceed given my particulars...the rest would be easy. After 3 1/2 years i still dont have that. I hope you do because it will make your decision/s a lot easier. Good luck to you!

[Umpire20 in reply to kayak212]

Unfortunately medicine can be an inexact science. It might be easier to figure out the engine noise in your car than your Prostate cancer

[Chemtrails-USA in reply to kayak212]

Well said, Kayak212.

Old proverb: "A man with one watch always knows what time it is. A man with two watches is never quite sure."

- Bobby

[jackcop]

That was an awesome post, kayak212, and one which I can relate as an AS patient of 1 year.

[AS2010]

Your choice of course. What does your md recommend?

[Hope4Happiness in reply to AS2010]

Staying on AS. Given my stats, she feels a change in PSA should not initiate immediate treatment— just more testing and analysis.

[AS2010]

That sounds wise. Why rush into surgery or whatever?

I was diagnosed almost 10 years ago. The urologist gave me seven choices. All therapies he supported. He didn't mention AS. I did. It was newish then (maybe 6% of men with low-risk disease were on AS and a lot of docs had no experience.) This guy tried to push me into surgery--in a week because lucky day he had an opening. I have watched my PSA go up and down, mostly down after hitting a peak of 9. I had to ask about AS. He just said he didn't support it. I found someone who did. I used to get a bit nervous or maybe disappointed when my PSA rose. But my urologist was reassuring: "By now we know your prostate. No need to do anything now." Next time, the PSA was down. PSA can be affected by a number of things--avoid sex and bike rides before it and realize there may be seasonal trends. Mine hit a peak of nine. Last time, using a PHI test, an index of different types of PSA, my number went up but my risk went down. AS enables you to go slow and watch what is going on. If things suddenly head south, you should have plenty of time to react.

[Umpire20]

Why have unecessary surgery just because you're uncomfortable with having a Little Bit of cancer. I've been on AS with G6 since Nov06

[JimVanHorn]

I did not have surgery. I had radiations and then 3 years later they found metastases in the hip bones and I started Lupron injections. I continued these injections for 6 1/2 years and now I am cancer free. I still have all my junk. I am 73 and grateful that I did not choose surgery. I am on AS now. About 10 years ago in Orlando there were two urologists who were very highly respected. They each were diagnosed with PCa and one chose radiation pellets and the other chose radiation. After one year one died and after 1 1/2 years the other died. The reason I am telling you this is that they knew everything about PCa but waited too long to start therapy. Now PCa is usually a slow growing disease, but you never know when it will take off like crazy. I wish you luck, maybe a second opinion would help.

[jackcop]

I say no. Unless you are so anxious, then yes, do the robot thingy and you'll know you are free of cancer. It just seems to me that you are like me: I have G6's no mets but can't get past the fact that cancer is growing inside me. I'm 69, dx last year, on AS, but feel a general yet obscure anxiety.