52 and diagnosed with stage 3 aggressive prostate cancer-

hello - new to here- i am 52 yr old - diagnosed with stage 3 aggressive prostate cancer - gleason 9 !!-- all 12 modulars full - was a 10 hour surgery - surgeon said was largest prostate he ever saw and removed - this was quite a shock after biopsy - could barley walk before surgery april 13th this year- they did the best they could PSA was .02, 3 months after recovery - i just finished 8 weeks radiation with lupa ( hormone ) shot- then told to wait until january 3 months for next accurate PSA test ------ i went to get 2nd opinion from medical oncologist who said " do not wait " get done now- wants to see PSA every month going into jan/feb- finally a Dr with a sense of " urgency " that i always wanted - my 1st test result psa .01 - so its low which was expected - but still scared crapless !!! been a rough year - will do every month hoping for a zero score- but i know its ALL about when it comes back - and where-

any advise ?? all my cancer group meetings are with 65-75 yr olds with Gleason 7 and told they really dont need to be treated as much -

any help ? someone just told me to get PEt scan - not sure why this was never done ?

sincery
G

gman,

I completely understand where you are coming from.

Us “younger” guys are definitely under represented in both the research and treatment protocols. It seems like PCa treatments arecall about buying time until something else gets you, and thats fine if you are 70…. but if you are like 50 or 40, it doesn’t sound so great!

It seems though you have taken some pretty mighty swings at your cancer. The waiting game is admittedly tough.

Do you have your pathology report handy from the surgery? Do you have questions about it?

The new Pet scan you may have heard about is a PSMA Pet….and with a psa as low as yours is now will not now likely find anything. It was just recently approved and wasn’t widely available outside of clinical trials until this fall.

I think that you have done everything that you can at this point. Now it's a matter of waiting to see what happens. It might make sense to keep reading and learning about the options available to you should your psa rise again. Some people (such as me) find it helpful to keep learning. I think it gives me a better sense of control over an uncontrollable situation. Others find that thinking about prostate cancer makes them more anxious. Good luck, and keep us posted.

Yeah it's guys like you that make me (one of the 60-something 7 guys you talk about) feel like a fraud. A "real" cancer patient. BUT that PSA suggests you haven't metted so no real front of the queue and the odds are in your favour. Good luck.

Hi

Sorry your here. Tough set of cards you have been given.

I would hang around here and ask questions and educate yourself on treatment options, there are quite a few folks who have battled this disease.

There is a thread for Gleason 9 and 10 people on the forum you might want to check out

https://www.healingwell.com/community/default.aspx?f=35&m=4105098


Hang in there.

GMAN2667 said...
oncologist and surgeon told me if i was 65 NOW and had gleason 7 they would do nothing - live 15 years or longer without all the meds, chemo ect and watch PSA- - ect

That is not exactly true and probably more false than true. If you were to have one core of Gleason 7(3+4) with the grade 4 being a low % and not much else in the other 11 cores, the statement might be correct. Most Gleason 7 diagnosis are worse than that, especially the 4+3 version, and would be treated at age 65. The thoughts may be a little different for the over 70 crowd and certainly over 80 but a lot depends on health and life expectancy of the person.

The specifics of each man's cancer determines the treatment scheme along with the patients preferences. Sitting in a group becomes a bit like the 8 blind men describing an elephant as they all have a different situation and experience. Focus on your specific situation and don't look backwards while you plow ahead. It is easier that way.

Michael - what are u on now ? and why no prostate removal ? i really didnt have a choice- no gaurentee my tumor would shrink 25% - again my prostate was so enlarged i had hard time walking - you are 1st person i met my age with Gleason 9 - gives me hope - appreciate !!

Hi GMAN-I’m sorry to hear of your diagnosis. I too was diagnosed 2 1/2 years ago at age 52. Stage 4 with Gleason 10 in all cores. Mets to hip and lymph nodes. My initial treatment consisted of Lupron, casodex, chemo and radiation. My psa went to undectable and so far so good on no recurrence. I also got a 2nd opinion from another highly respected medical facility. They were able to review all my records online and came to the conclusion they had nothing to offer in addition, as I was receiving the best care available. This helped tremendously with my anxiety and proceeding with my treatment plan. It’s good you got a 2nd opinion also and are treating it aggressively. Everything I’ve heard on the highly aggressive grade is to treat it aggressively and as early as possible. Good luck in your journey and I wish you all the best.

Post Edited (Jesse WI) : 10/23/2021 3:33:31 PM (GMT-6)

Hello, GMAN2667 ---

I was diagnosed in my 40s, with a PSA that was skyrocketing during those days of diagnostics, biopsies, and scans.

When all was said & done, my PSA was over 100 --- and the prostate cancer had infiltrated both my lungs. Treatments began in earnest, FROM THE JUMP!

A key point of your post --- which I will echo, as I share this with you ...

When I was first diagnosed, my doctors took me under their wings. It was a sobering moment when they said I was their youngest prostate cancer patient.

Ironically, my dad was already being treated by these same doctors --- and Dad and I have sat together in that same waiting room.

My dad stands alongside all of us here on this website!

He is 25-year leukemia survivor --- a prostate cancer patient --- and a corona virus survivor. He is an inspiration to all who know him --- and his story has encouraged many others.

With dedicated doctors --- I have pursued a proactive course of treatments. My treatment history is shown beneath my signature at the bottom of this post.

When I was first diagnosed, it felt like a whirlwind --- an endless battery of tests --- worrisome thoughts --- difficulty in concentrating ----sleepless nights ...

Those first treatments kicked in ... treatments brought newfound HOPE, just when I needed it through most.

In those early day of my diagnosis, I found THIS website. It was invaluable to know I WAS NOT ALONE!

This website connects all of us fellows --- and I soon began seeing posts from other fellows who were my age, as well. It's a "band of brothers" here!

I am a teacher --- and treatments allowed me to keep working full-time. I stay active --- and walk on trails each day. I am just stepping into my 9th year of survivorship.

I don't take it for granted --- and I have much to be thankful for ...

My lessons learned? Form a trusted medical team --- pursue a proactive course of treatments --- and stay the course.

My toughest treatments have paid the greatest dividends, over time.

I am not going to promise you that each day will be easy, but I can assure you that there is value in fighting the GOOD FIGHT.

No one here fights alone --- we ALL walk alongside each other!

# BELIEVE IN THE FIGHT !

Handshake, from across the miles ~~~

CYCLONE --- # Iowa State University

GMAN, glad you found this site and now you know you have company. There are still others who have even worse diagnosis to start and are still here posting. One day at a time my friend. Learn to be mindful of today. You have my number so text me anytime.

Hey there, sorry to hear of your diagnosis. That is a shock. You have had aggressive treatment, and may do very well indeed. Never give up hope!

Unfortunately (or maybe fortunately), there are not many cases like ours. High grade PCa, "very high risk" with G9 and multiple positive cores, stage 3, all add up to a challenging case without a lot of guidance for the doctors. These are pretty rogue cells, and it's a bit hard to predict the course of such a case.

I started a thread some years ago for what I called the G9 Crew, so you may find a number of people who've been here and what their situation was. As you're finding, the support just due to numbers tends to be around guys dealing with pee dribbles and weak erections. The G9 folks are usually less concerned about that, and looking for ways to survive. It's a different focus, and you won't find a lot of understanding among the G6 and G7 cases. It's just the way it is.

Here's a link to the latest version I know of for the G9 Crew thread. You may find it interesting. There are links to the threads for many of them. All the best as you move forward; it sounds like you're in good hands now.

Link to the G9 and 10 Crew thread

G-man,
Sorry about your luck as far as this disease is concerned. Being scared is definitely understandable. I was pretty freaked out as well. When I was diagnosed, I had a huge prostate with a tumor coming out of the organ and invading my bladder. I also had a chest full of prostate cancer in addition to bone metastasis. My PSA was over 3200. I guess if there was any good news my Gleason was only a 7. I was 42.
Here’s the deal. That was 15 years 3 months and 23 days ago. Not that I am counting.
It’s easy to say and hard to do but relax a little. This is a long slow moving train and the stress will do you no good at all. Lots of changes coming to your life and lots of treatments available. Live your life every day and enjoy
All the things the immortal take for granted. Todd

@Gman sorry for the cross post but @Todd1963 that is INSANE.

@Redwing I hear you on the numbers, but any lack of "proper" prioritization is not intended to minimize your (plural) challenges. We are all doing what we can to avoid an extremely unpleasant late stage. The (IMO nonsensical ) concept of "cure" perhaps does more harm than good in confusing the issues in that regard. Many people who are "cured" were essentially not ill in the first place. But I think the rest of us, while on different decks of the boat, have hit the same iceberg if our docs are honest with us.