AS or Surgery?

[JW2019]

New to the group- recently diagnosed w PC. Age 49, Gleason 6, 1 out 12 core positive at 15%, PSA 4.7, clean MRI. No family history and very athletic so came as a shock. Everyone recommending AS but I am leaning toward just taking it out/robotic surgery given my age and success rate,etc. I guess why wait longer than a year when I know I will most likely need treatment in future? Any words of wisdom from anyone in same boat?

[rsveeneman]

Hi Joe:

I have a similar Gleason score to yours. For now I am choosing AS. I am 65, and in good health otherwise. I was diagnosed in April. I will have another PSA screening in October and will work with my doctors on what information is presented. I did see other doctors for a second and third opinion, they included a oncologist urologist and concluded AS is my best option. I will have another biopsy done in April of 2020.

[JW2019 in reply to rsveeneman]

Thanks....very helpful. I have not spoken to another urologist yet but I did have an oncologist read my MRI who told me there is no sign of it outside and barely detachable in the prostate.

[aceace12]

first i would have second and third opinions . but AS would be best . i would never consider surgery with your current diagnosis . your too young and also thats not true you may never need any treatment .guys have been on AS for 20 , 30 years ....

good luck,

David R King

[kevinf]

Same boat as you-but older (68) I've decided to hang in and avoid surgery if at all possible. There is a well above average chance we'll never need it, so why risk the side effects?

[Hope4Happiness]

I was diagnosed at age 52 with two cores of 14 at Gleason 6 at MSKCC -- one core at 1% and the other at 3%. PSA - 6.1, Free PSA - 24%. The biopsy results were confirmed by a second opinion at Johns Hopkins.

After much consideration, I chose to go the AS route. I'm following a a very specific protocol and taking AS in six-month intervals. Will I need treatment somewhere down the line? Probably. But with PCa and treatment, even five years can make a significant difference -- compare what research and knowledge has been revealed from 2014 through 2019.

If you choose AS, one of the most important steps is to find a facility -- MSKCC, Hopkins, Dana Farber, MD Anderson, etc. -- that has a very defined AS program and follow it closely. In addition, it is very important for all patients choosing AS to have a confirmation biopsy 9 to 12 months after the biopsy that revealed their diagnosis.

[EdinBmore]

Age 61 at dx, 3+3, PSA 7. Considered options. Chose AS at Hopkins. Monitored every 6 mos. Biopsies, MRIs, DRE, PSA. Fusion guided biopsy - get it - allows doc to target suspicious areas.

Numbers changed in 2018. Uro and RO recommended treatment. Chose IMRT, brachyboost and ADT based upon National Comprehensive Cancer Network guidelines. If you're not familiar with the NCCN, become familiar with it; it's basically the bible for cancer docs (there are versions for lay people and for professionals). My docs referred to it (and showed me it online) during my appointments.

Suggestions: WAIT! you have low risk PC. Take your time in making any kind of treatment decision (cuz once it's done, your life WILL change). I am glad that I waited before seeking treatment. Having my parts for an additional 7 yrs was important to me. Who knows, you may be someone who can remain on AS for decades.

Read as much as you can about PC. The progress in treatment options has improved dramatically over the years. Who knows what is in the pipeline?

Check out various PC networks, websites; there are many out there (I just stumbled upon one that compares various treatments and provides links to studies supporting their findings. It's the "Prostate Cancer Free Foundation." prostatecancerfree.org/pros.... Given your comment re surgery, you might want to look at their treatment graph and see how surgery compares with radiation, for example.)

Get second and third opinions (to state the obvious: uros are surgeons, they want to do surgery; ROs want to do radiation. Talk with medical oncologists for an unbiased opinion as you are likely to get.)

Chat with the guys here. They are supportive, informed, and can provide guidance on what questions to ask, and who to talk with. They've "been there" and know what you're going through.

Although this is not a group that any of us wants to belong to, welcome, nevertheless.

Good luck to you.

EdinBaltimore

[JW2019 in reply to EdinBmore]

Thanks so much for the insight and advice. I am going to go on AS until something changes at this point. Your detailed comments are helpful...

[AS2010]

It is your choice. And you are young for this diagnosis. But generally this is a slow-growing cancer. You have plenty of time to monitor the cancer and undergo the surgery if the cancer flares up. Maybe the thought of having cancer is getting to you? It can be an adjustment to accept the idea of living with cancer. My diagnosis was similar to yours and my first urologist told me I was lucky and he could work me into the OR for a radical the next week. I sought a second opinion and the new urologist said I was a poster child for AS. That was almost 10 years ago. I soon will be 72. And things have only gotten better--my PSA has dropped more than half from a peak of almost 9 and the cancer has never again been seen on biopsy. I avoided the surgery--thus far--and its side effects. Again, your choice, But you owe it to yourself to get a second opinion.

[JW2019 in reply to AS2010]

Thanks for the reply. The majority if not all the folks I am talking with say AS is the route for my diagnosis. Talking this through with others like you makes a world of difference. Much appreciated.

[NashTim]

Hey man.....I was diagnosed in 2015 at the age of 55 with just about the same numbers as you and my Doc put me on AS, I get PSA test every 4 months, a yearly MRI and a yearly Biopsy. My PSA has gone up and down in the 4 years I have been on AS but still at G6. I am not going to offer you any advice but I for one am staying on AS for as long as I can....I don't know if this helps in anyway but that's all I have to offer......

[JW2019]

Thanks for the reply - I am definitely sticking to AS until something moves me forward....the majority of docs and others are saying I am a strong AS candidate. Much appreciated. I just received the results from a Genomic /DNA test, Ondoctype?, which also confirmed that I am low risk.

[EdinBmore in reply to JW2019]

FYI: I responded to your original post earlier. Just wanted to add that I, too, had the oncotype Dx and it showed low risk (87% chance of non progression/low risk). This (and other test results) supported my decision to go on AS at Hopkins. Initially, I WAS the poster child for AS. After 7 yrs, my luck changed.

Although I think you've made the right decision re AS, please be aware that the oncotype Dx results are considered valid for 2-3 yrs.

EdinBaltimore

[Hidden]

I'm choosing AS for now and my data isn't as good as yours. It has been shown that with low risk cases which you are part of, if you did AS now and remained low risk for 5 years and then had treatment, your outcome is the same as if you had treatment now. So waiting shouldn't hurt. So make sure you keep up and keep vigilant. If something changes during your surveillance, reevaluate at that point in time. Maybe someone can correct my statement if not accurate.

[TB2G]

Joe - I just joined the club a few days ago as well... my first post here:

healthunlocked.com/active-s...

My diagnosis was very much like yours.

I've been told and seen from other folks that having your pathology slides reviewed by Dr. Johnathan Epstein at John Hopkins is a good idea. That's my next step. Uro Doc at Mayo is saying AS is my best option. Wants me back there in 3 months.

Since I also have ongoing prostatitis the is moderately difficult to live with at times - that's my immediate concern.

I turn 52 in a few days. Looking to hang on to my piece parts for as long as possible. My PSA has been up and down for 9 years since my retirement physical in 2010.

I work with a guy who had a RP 12 years ago - he also advises that, if I can prolong the need for surgery - it is a good idea, though 12 year later he remains BCR free (it's like being back in the Army - all these new acronyms), and seems to do all right - one thing is for sure - guys with no prostate sure can pi$$ fast... he can come and go and I'll still be standing at the urinal.

Some guys I think, once they know they've been diagnosed with cancer - just want it out of their bodies - but I think in cases like ours, best to use a methodical and rational decison making process.

I'm not complaining however, things can always be worse. I'm actually at peace more now, knowing what should be close to the ground truth, than I was back when I really wasn't sure if or to what extent I had a malignancy. For me, knowing the truth puts more at ease than the unknown... of course - had my gleason come back higher, I'm not sure if I could say that.

I'll see you around on this forum I'm confident.

regards.

G

[JW2019 in reply to TB2G]

G - thanks for sharing your background. Like you, I was first surprised to get PC at such an early age (I am 49) with no fam history. I went from 2.85 to 4.1 in one year so my initial PSA test ride was not as long as yours....I go back in 30 days for my first PSA test following the biopsy. At this time, I too am going to do AS as long as I can then most likely surgery. It is interesting all the opposing opinions on treatment but at our age, it just seems that surgery is the best road to take when that time comes. I am curious if you have decided on the potential treatment after AS and why?

[TB2G]

Joe,

My biggest problem at least from a symptoms standpoint is dealing with prostatitis - it never really goes away. I often have difficulty emptying my bladder completely. I can't under most circumstances just go up to a urinal and let it go - I have to usually take at least a minute, try and relax, and then make sure my bladder is empty - often have to double void - meaning go once, and then 3 minutes later, go again to let the rest out. This can lead to other issues like bladder wall thickening apparently. I was considering a TURP prior to all this, because I want to be able to piss normally. In three years, I've had three severe bouts of prostatitis - twice had to go to the ER, and once was septic (the first time before I knew enough to go RIGHT AWAY). So, I have to take all of this into the equation when it comes to treatment. So, if I decide to get mine out - it'll be not only because of the PC, but also because I'm tired of Prostatitis. It is a real drag. When the symptoms subside to a degree, I have learned to live with it. I've been on Tamsulosin for 3 years. I've got research to do though if/when I go the surgery route - I've heard some people say this DaVinci machine is a good tool for the surgeons to use.

r/

G

[TB2G]

What is this Genomic /DNA test, Ondoctype (or Oncotype) test mentioned above? Where to get it?

[JW2019]

My urologist ordered it.

[Hidden]

I also had my sample through Oncotype DX. My urologist’s staff arranged it. It’s pretty expensive if insurance doesn’t cover it like $4k. I paid $900.00 or so. Might want to ask your insurance company and the OncoDX group. The test examines the genetic makeup of the cancer. It gives a risk assessment and helps with the decision making process whether to pursue AS or treatment.

[TB2G in reply to Hidden]

ejc - what is the ONCO DX group?

I sent a list of a bunch of questions to my Doc at Mayo - got a response from his PA - you should come in to talk about all those questions.... looks like back to Phoenix (204 miles away). I'll add this question to my list.

Thanks.

G

[aceace12]

Stay on AS guys have been on it 20 years and longer ....your way to young ... those numbers indicate AS

[Umpire20]

Joe, I understand the angst "You have Cancer" causes in anyone especially a Male when we're talking about his prostate which plays such an important role in sexual performance and even continence. However as someone who has been on Active Surveillance for Gleason 6 since November 2006 I hope you're weighing that very seriously in your decision making.