Started the battle: I have been dancing... - Advanced Prostate...

Advanced Prostate Cancer

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Started the battle

Emak1 profile image
20 Replies

I have been dancing with PCa for a while at a young age, Father, uncle, multiple cousins of my fathers side all had PCa in their late 50s, 60s and 70s, All had surgery or radiation and were fine, most still kicking, but no deaths from PCa. Lucky me, I got the curve ball.

First biopsy was at 41 with a PSA of 9, 13 cores negative but had pre-cancerous indicators

Year later at 42 second biopsy with PSA of 15, 1 out of 15 cores showed 20% GL 6(3+3), got MRI, clear, 3 moth later PSA is 14, stable, a bit lower.

At 43, PSA climbed to 19, third biopsy with, new MRI overlay picked up GL (3+4), performed surgery 8/16, recovery went well, pathology confirmed GL (3+4), T2c, margins, EPE, SVI, 10 lymph nodes all clear.

Thought I was headed in right direction.

11/16, PSA undetectable

4/17, PSA undetectable

Then

10/17, PSA ~0.2, reconfirmation in early 11/17 (0.18)

12/17, PSA 0.23, then 2 weeks later 0.27

Took action quickly, within 4 weeks of confirmation, we had an RO at Sloan Kettering, and the last reading of 0.27 was 1 hr before starting Firmagon

Very nervous at this point, doubling time has me worried (about 3 months). Read multiple studies and have seen number ranging from 30% to 68% (MSK nomogram) for a multi-year remission, potential long term.

Naturally, those are good number, esp the 68%, but I am cautiously optimistic.

Have been exercising since the spring for a blown ACL (different story), but dropped from 207 to 170 and diet is on track.

In any case, I have been looking at posts and have been amazed at the information here and the perseverance of everyone.

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Emak1
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20 Replies

Sounds good! Keep exercising, keep your weight down, and make sure you examine your diet carefully. Disclaimer, I'm no doctor, heck I was never even a custodian in a hospital. Sloan Kettering equals top notch. One thing, you must check back in at least every ten years.

Of course what do I know?

in reply to

Good humor and comments brother. Happy new year!

Your PSA is very low which is a really good starting point for going on ADT. You might want to also consider early chemotherapy or Zytiga in accordance with 3 recent trials: CHAARTED, STAMPEDE and LATITUDE. Those trials found a median 13 months additional survival beneift when either 6 cycles of Doctaxel or continuous Ztyiga are used. I did the 6 cycles of chemotherapy early and saw a sharp reduction of my PSA from 463 to .19 in 6 months. The chemotherapy is more toxic, but it's over quickly. The Zytiga is less toxic overall, but has to taken continuously and also Prednisone must be taken with it. I prefer the chemotherapy because it kills a wider spectrum of cancer cells, not just those with androgen sensitivity.

Good luck with your treatments and keep us posted. My guess is that you PSA will start going down under ADT, perhaps staying low for many years.

Emak1 profile image
Emak1 in reply to

Thanks. I should add we are doing 40 treatments of SRT. That starts in March

in reply toEmak1

Ok, I missed that you are stage 2. SRT makes sense for you since you don't have any distant mets.

in reply to

I agree!

BillNIttles profile image
BillNIttles

Because of my family history of every uncle getting prostate cancer I was diagnosed young too, at 44 in 2010. RP, SRT, then last year chemo and adt, which I just stopped. Everything looks good.

It looks like you are doing the right thing, hitting it head on. I know you will keep up with what you need. Stay in touch, this site has been invaluable to me and many others.

Take care

Bill

Emak1 profile image
Emak1 in reply toBillNIttles

Thanks bill. Gonna take a crack at SRT. Will keep everyone posted

Sisira profile image
Sisira

I would call you " The wise young man"! Excellent, very proactive right from the beginning. Yours is medium risk PCa : GS 3+4 . Try your best to achieve a "cure" or to be more realistic a stable long term remission. In doing so take the earliest instance to hit the cancer as hard as possible at the first sight of a biochemical failure. At your age you can be a physically and mentally strong warrior. Before launching your next attack, be well prepared. Read and understand fully well the findings of STAMPEDE, CHARRTED and LATITUDE Trials. Never forget the fact that PCa is heterogeneous. Some cancer cells are hormone sensitive and there are some really nasty ones which are hormone insensitive/refractory which don't give a damn to hormonal therapies. Give your thoughts early enough how to kill both types. I think you have enough time to learn about new PCa drugs and innovative treatment strategies to manage your decease well.

Again I admire, you are a WISE man!

Best of luck and Happy New Year to you.

Sisira

Emak1 profile image
Emak1 in reply toSisira

Thanks. Good to know on the chemo

E2-Guy profile image
E2-Guy

Hello Emak, I gave you a 'Like' not because you are now one of our comrades, but because of your detailed explanation. You have moderate stat levels which puts you in a better category than I was in. When I had a robotic RP 13 years ago my GL was 4+4 with T3a staging. My urologist/oncologist is very conservative and has not suggested any adjuvant therapy until last May when my PSA reached 1.1. A 68Ga-PSMA-PET/CT scan identified only sacral LN involvement which a subsequent adenectomy reduced my PSA to 0.54. I have been totally symptom free for all of these years and wouldn't change a thing other than getting a biopsy a few years sooner. My oncologist feels that I most likely had PCa at least 5 years previous when my PSA was about 2.0. I'm not disputing anything that your docs are doing or the replies here on the forum; however, I hope that the side effects of your 'aggressive' therapies are not worse than what watchful waiting may or may not accomplish? In my opinion, the 13 years of a great QOL have been worth more than an extra few years of survival. Richard J. Wassersug, PhD, Medical Neuroscience, (on this forum, and author of "Androgen Deprivation Therapy") is a 17+ year PCa survivor and has had tremendous success with simple transdermal estradiol gel. My family history is also significant, however, like yours, they all were long term survivors. (Def. of a cancer survivor: "One who dies of something else.") My best to you, Ron

Emak1 profile image
Emak1 in reply toE2-Guy

On the original visit the thought was only SRT. But with the rise in PSA over a short amount of time. We are going to get aggressive

Break60 profile image
Break60

Emak

You’re fortunate in a sense to be so knowledgeable about this disease so you can treat it aggressively.

Best to you

Bob

j-o-h-n profile image
j-o-h-n

Emak1

That's right, slap that Friggin Pca silly.

Good Luck and Good Health.

j-o-h-n Wednesday 12/27/2017 5:26 PM EST

ronton2 profile image
ronton2 in reply toj-o-h-n

Emak1, These guys know what they are talking about. New directives in treatment of PCa call for a dual regime: ADT + Zytiga or ADT and chemo. I am on the former (Lupron + Zytiga aka aberaterone). You are doing all the right stuff but, as Sisira says, be well prepared for the next step in treatment. You will get good advice here. Good Luck!

MelaniePaul profile image
MelaniePaul

Your PSA is very low which is a great starting point for any treatment. So good luck and keep us posted!

Mel.

Welcome brother. What a rap sheet. Good you lost that weight.I did also. My first shot was firmagon, 3yrs ago Then on to others. I’m having good results for the time being. You should be able to get to a better place also. I’m 57 But I believe you being young Although is totally screwed up,your youth might give you more strength to battle our common internal enemy.Firmagon is high quality Adt ..Not without side effects.. You can and willl push this thing back for along time.We are all on eternal watch. Don’t be hamstringed by fear of the known and mainly fear of the unknown..We all have the same concerns and worries.. Get helpful answers here and don’t let this desease define you as a person. You are so much more than that. I’ll pray for good results soon for you. Take care!

All of these terms and treatments and stats can be overwhelming.

By all means you are still very young ..#2 you can probably push this back for decades..If you do all that you can , you will live a long life. Not without strife and some suffering but you can live to be an old man .Enjoy all that you can in life...

Emak1 profile image
Emak1 in reply to

Thanks. Hoping to hit it hard this round and at least buy a chunk of time.

Then we cross another bridge when we get there

Thanks for the positive messages

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