New Member - recent diagnosis

[Johnson411]

Recently diagnosed with aggressive metastasized prostate cancer (Gleason 4+5=9). TURP was performed last week to help alleviate some symptoms. Radical prostate surgery was not possible due to the spread of cancer. Started ADT (Lupron). Radiology is scheduled for the fall of this year. The bone scan was clear. PET scan scheduled for next week. As far as my PSA, it was .99 in Q4 of 19 and rose to 5.06 over 18 months.

[Tall_Allen]

Let us know the results of the PET scan next week. That may make quite a bit of difference in your treatment decisions. Do you know which kind of a PET scan it is?

[Johnson411 in reply to Tall_Allen]

The only thing I know is that it is a PET/CT Whole Body scan.

[Tall_Allen in reply to Johnson411]

There are different types- ask which one. The most common is the FDG PET. NaF PET is sometimes still used for bone. But Axumin is more specific for prostate cancer.

[Johnson411 in reply to Tall_Allen]

It is Auxumin.

[Tall_Allen in reply to Johnson411]

That's a good one. At your PSA, if there are any metastases, they should show up.

[Magnus1964]

Sounds like you're on the right path. I have a Gleason score of 9 and after 29 years I am still here.

[Johnson411 in reply to Magnus1964]

That is encouraging news! Thank you.

[RonnyBaby in reply to Johnson411]

I was a G9 at Dx 4 years ago. I also needed a TURP - but had much higher initial PSA.

Had lymph node involvement and had RT, with ADT.

4 years later I'm doing well and managing the disease.

Predictions aren't really a great idea due to variants and the nature of the disease.

DIRECT comparisons can be misleading.

Be the best person you can be and enjoy the time that you still have - take care of yourself and a good attitude will take you a long way.

Get educated about your PCa - you'll need to be your own best advocate.

Wishing you well on your journey .....

[Miket218 in reply to Magnus1964]

Magnus1964, big thanks for posting that remark! I’m a G-9; 4 years out from RP followed by 42 radiation treatments to the prostate bed and so far undetectable PSA. Your comment is super encouraging! Good luck on the next 29 years!

[6357axbz in reply to Magnus1964]

Magnus, we’re you metastatic at diagnosis?

[Magnus1964 in reply to 6357axbz]

When I had my surgery the cancer had spread to the lymph nodes alongside the prostate, so yes I was considered stage 4.

[Hidden]

Sorry you are here but I'm here so it's not all bad. Couple of rules you may want to follow to make the most of your stay...TA is the most knowledgeable when it comes to treatments that are evidenced based...Nalakrats is very good with the supplements and so is learn_all. Me..I'm just a jokster trying to interject humor where I can to help distract from this serious disease.

My advice to you is take it literally one day at a time...you are starting on a journey, not a race.

About me..I was 53 when diagnosed. G9. Since June 8th 2019, I've had a RRP, 39 IMRT Sessions and nearly 2 years of Eligard, and 20 months of Zytiga.

I workout at least 5 days a week. Play ice hockey 2 times a week and I like my beer.

My post RP pathology was pt3bn1m0. My current psa is < 0.01

My last eligard shot is on July 14th. Time does move fast.

Is your Johnson only 4.11 inches long?

[Johnson411]

Hahaha. I like your humor. No, but after the ADT it might be!

[treedown in reply to Johnson411]

That's in the club info in small print.

[Seebs9 in reply to treedown]

I have to take half a viagra so I don't pee on my shoes

[TwilightZone]

Take it easy, you have exactly same Gleason score as I in 2015 when I had prostate removed. In 2018 started Lupron injections, more recently replaced Lupron injection with quarterly Eligard and Prolia injections, plus daily 1,000mg. calcium and vitamin D. As of last month, PSA was 0.06. I AM DOING WELL AT AGE 70, and hope it stays that way for a long time. Please do not panic like I did because you can be helped!!

[TwilightZone]

One more thing, I had 40 radiation sessions over 8 week period, soon after prostate removal.

[DMohr011]

Welcome Johnson411. My only info to add, if your pissing problems return, do not do another TURP as it will delay any radiation for 6 months. Self catheter is the option.

I had a second turp done and that further delayed radiation. Some cancer types do not wait around.

You will find lots of support on this Forum. Wishing you the best outcome to this long road ahead.

Dave

[diamondrn]

Why did you have the TURP.? Are you happy with the results so far? Thanks.

[Johnson411 in reply to diamondrn]

TURP was to try to provide some relief (Quality of Life) while I battle the rest of cancer that has spread outside the prostrate. Hope that answers your question.

[diamondrn in reply to Johnson411]

Definitely understand quality of life, Johnson. That's what I am hoping to improve with a TURP.