Got my Biopsy results/ What a day

So Story.. Father had PC at 51. Ive been getting tested since 40...
PSA Levels
40-2.1
41-1.9
42-2.2
43-3.8

Did 2 weeks Cirpo nothing changed. Biopsies sucked. Dr is gone for a week so I just had them upload my results. The Patience game isnt in my DNA..

Took 12 specimens.
A was Right Apex Negative
B Right Mid negative
C Right Base Negative
D Left Apex Negative
F Left Base Negative

Now

E Left Mid found Prostatic Adenocarcinoma, Gleason score 3+3=6/10 involving 2 of 2 biopsies
Approx 5-10% prostate
No Perineural Invasion Identified
No Extraprostatic Extension Identified

I DONT KNOW WHAT THAT MEANS AND DONT MEET DR TILL TUESDAY..

Any help would be great...

Murph, as prostate biopsy reports go that’s pretty darn good. You have been diagnosed with only a couple of samples of low risk cancer. The first thing you should do is get a second reading on this pathology report from Dr. Epstein at Johns Hopkins. See the instructions on how to do that in our sticky thread for newly diagnosed patients. This expert reading will give you comfidence about your diagnosis. Assuming this holds up, most of us here will suggest that you seriously consider Active Surveillance where you treat this as a chronic condition rather than something that needs more drastic intervention.

Stick with us...we will help you through this...and let us know how your doc visit goes.

Jim

PC at G6 never metastasizes. Even at age 43, it's possible that this will never be a life risking cancer. The risk to you is low. PC is a slow grower and you'll have plenty of time to react to anychange.

I get that you're a bit freaked about this. It's an emotional kick in the head. Breath slowly for a bit and get use to it.

also, the cancer world has changed a lot - it's now longer a death sentence and there are tons of treatments that are likely curable.

Andrew

no it`s not wrong to be racing with CRAP !......you have been told you have cancer.....ALL of us go through this ....but , you,....you have a great biopsy report !!...so, like T-18 said ...slow down ....inhale...have a drink or whatever....and know that you are So lucky to have such a small amount of cancer and that you have stayed with it AND, that can be treated very easily....wait for the docs report ....and try to relax. Quit thinking "cut it out".....at your age it would mess you up big time....just my opinion , and I`m a no body on this forum, but have been through it....good luck ....stick around ,we`re glad your here ....David

Your emotional reaction is VERY normal. We've all been there, and we've all been through the "just cut it out" initial phase. My ruminations about it got so bad (and annoying!) that I went for some psychotherapy and practiced Mindfulness to help me stay in the present moment and deal with what IS instead of what MIGHT BE. But when it's brand new, the mind is going to race no matter what you do (other than drugs). I promise that your emotional temperature will cool down with time and knowledge, although it doesn't seem so now. You may need some sleeping pills for a little while to get a good night's sleep.

There is absolutely no rush to do anything , and it won't change a thing with your diagnosis if you take over a year to decide.

When you are able to absorb stuff, there is an informative sticky for the newly diagnosed at the front of this site. You will see there a recommendation to get a second opinion on your biopsy slides from Epstein's lab at Johns Hopkins.

Here are some questions to ask your urologist:

/pcnrv.blogspot.com/2017/12/questions-to-ask-and-not-ask-on-first.html

Bring all your questions in writing, write down the answers, and bring someone with you if you can.

Your reaction was exactly like mine. I was diagnosed in December with G6 so I got my PCa for Christmas. You have lots and lots of time to decide. You have the full selection box of options in front of you including AS. Be gentle with yourself buddy and learn to own it. It probably sounds silly to some but as I've said on here before I call it my dragon. They can be bringers of great wisdom and learning. It will certainly teach you what is important in life and what is not. Study loads, stick with the guys on here, they are amazing. Don't fight your dragon. Stand before him and stare him straight in the eyes. Your going to be ok. Get things into perspective. If you are going to get PCa you have been given the best possible diagnosis. You are a firm candidate for Active Surveillance which means you can carry on with your life without seeking any treatments if thats what you decide to do. Breath.

Jmurph.....I was 42 when diagnosed as well..I am 52 now...yea it's been almost 10 years..PSA has been <0.3 ever since surgery at Johns Hopkins.....same stats. as you except I think I had 5 cores positive with G6 out of 52 punches.....

I almost went crazy...thinking that it all had to be bad at such a young age....Not true with G6. You can pull random people off the streets with normal PSA at your age and find G6 all day long.....

I also told my URO I "WANT IT OUT...NOW." I remember yelling at him.....Ha!....So, I will tell you this LOUD AND CLEAR....you have the best biopsy results you can get for having PCa.....what is known now about G6 is not what was known when I was diagnosed....Nobody will tell you G6 won't kill you, but everyone will tell 99.9% of people with it won't die from it. It's true....especially now. A lot of the studies where someone did die from G6 were very very old...and I would argue that most of those people who did die would not have been G6 today....You have to calm down and get your wits....this is not the death sentence everyone who is just diagnosed with cancer feels they have been given.

I would strongly suggest you try AS if you have the nerve for it. I would put off having it removed as long as you can....I could not....I had to take it out and regret that I did. Especially, what I know about low risk G6 Pca now that I didn't know then....start doing some research on G6 prognosis you will see.

I have a study from Walsh at Johns Hopkins where in 30 years he did not loose one patient to Organ Confined G6 prostate cancer....100% survival in his study.

Here is what you need to do...

1.) Calm down and try to relax...."have a drink or whatever"
2.) Get a 2nd opinion on your slides...it will re-assure you.
3.) Heavily, pursue AS if you think you can take it...
4.) Take your time to decide on your options....I waited 6 months to have surgery....

Keep checking back in with us here....anytime....everyone here will help you get over this....

My dad is an 18 year survivor of G6 and had SBRT only....

Dx @ 42 PSA 2.76 GS6
open RP 10-15-2008
pT2 Organ Confined GS6
9 Year PSA <0.03

JMurph-

You may be able to take some comfort in this, maybe not. The chart in the link below is based on autopsy studies of trauma victims. Roughly 40% of men in their forties were found to have had some prostate cancer that they never knew about. The only tragic thing in your case is that you learned about it before you ever had to. You should have gone another 20 years without ever having to be troubled by knowing about it. Unfortunately, in your case, your father had it, so it was prudent to get tested at a young age. And now that you know about it, you are forced to deal with it in some way.

urology.ucla.edu/body.cfm?id=267

The only difference between you and many men your age is that you looked for it and they didn't.

"You should have gone another 20 years without ever having to be troubled about knowing about it"
- Tall Allen

One urologists said the same to me. Another disagreed with that. If your going to get tested from age 40 for whatever reason its a moot point. personally Im glad it was found and that I knew about my G6. This is not hindsight. When the urologist said it to me on the day of diagnosis I remember thinking , No, Im glad I know , however crapty it is. I want to know.
Personally I wouldnt recommend not getting tested until 60. Who knows what stage the cancer may be at then..... however smalll the risk. Just my opinion. But then I believe that 100 to 1 shots are still shots and knowing my luck I would be that boy. Thats how I think. Others think differently.

As many have said your reaction is very normal. What I know is you have lots of time to make a decision, many months. I strongly suggest you become a student of PC and learn all you can. Ignorance is the enemy and leaves you at a disadvantage to what the last doctor tells you. Get informed so you can advocate for yourself. I took nearly six months to make a decision. I had very similar numbers to you and was leaning towards AS until the second opinion yielded an upgrade of one ore to G7 3+4.

I had to really understand the choices for treatment, the extent of the treatment procedure itself and the typical side effects form most treatments. I chose HDR Bracheytherapy and had two treatments last February. I was back playing golf the next day after each treatment.

I could only make that choice after studying all the options in detail. I am not suggesting any choice for you, rather that you study all the options over the next few months. And please ask questions on this forum, these guys are a wealth of knowledge and experience.

Update

So I have a buddy whose wife is a Peds Urologist at Mayo Rochester where I live. We had a long convo, she read my path report. She mentioned with my report I had 2 options. AS, or removal. She stated she would have it removed. She would get me in with the best Mayo has. She stated that if I was older AS would be very reasonable. But being 43, if anything changes in the years ahead I might not be as good of a surgical canidate that I am now. She said your young, healthy as a horse, everything works. In 15-20 years that might not be the case.

Thoughts??

Im kind of scared of surgery.. ED, Incontinence doesnt jump out as things I want.

Just updating, Ive been reading and collecting info... I am sending my slides to Johns Hopkins for a 2nd as well.

Post Edited (Jmurph) : 5/6/2018 8:00:46 PM (GMT-6)

You expect that sort of thing from a urologist. Especially one that knows little about AS in adults.

A recent analysis from MSK showed why AS is the preferred option, especially at a younger age:

/pcnrv.blogspot.com/2017/08/the-myth-that-younger-men-should-not.html

And my analysis of the same subject broadened it to include incontinence as well as impotence:

/pcnrv.blogspot.com/2016/08/can-man-be-too-young-for-active.html

Leonard Marks, the head of the UCLA AS program and among the top urologists, wrote this to me: "My first patient in the UCLA A.S. program was 31 y.o. when he was diagnosed; he is now 42 years old, has in the interim gotten married and fathered a child; and his last biopsy was negative for any sign of malignancy.'

Im leaning for AS for a bit... Thank You...

Pratoman said...
Jmurph, your chances of being inc0ntinent after surgery are very small. Most guys within a year are fully continent, particularly if you find the best surgeon you can find. Note, the are no guarantees, some guys do have issues that don’t resolve without some kind of treatment. But the odds are in your favor.

The odds of ED, or at least not being quite the same in that department, are higher, even though good chance you will be ok in that department too.

Unfortunately, you are choosing among the lesser of two evils, which risk are you least uncomfortable with.

Guys here will tell you that you are a good candidate for AS. They are right. But yeah, at your age, your in great shape for surgery.

We’ve all been there as you already know. Take your time, no rush in making a decision. Maybe even go on AS for 6 months or a year, then revisit, after having the opportunity to live with it for a while