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Posted 10/3/2017 11:32 PM (GMT 0)
Guys, I need some help. As we all are I'm sure, I was hoping to find a little peace of mind here. I have been a long time lurker since my diagnosis and finally worked up the courage to make a post.

Early 2016 I was diagnosed with prostate cancer after my biopsy came back positive with 2 out of 12 cores having Gleason 6 (both from the apex). My father lived to almost 100 after being diagnosed in his 60s with prostate cancer and my brother is now in his 70's with it as well. I am one of those that had to deal with the cancer right away so AS was not an option. Unfortunately, after nerve sparing RP my cancer was upgraded in the post op pathology to Gleason 7 (4+3) with focal EPE but no other adverse findings.

My first PSA tests 3 months later came back at .02. I thought I was well on my way but the next two tests showed a rise to .12 over a 7 month period. SRT with ADT became the plan and I am 6 months in to the process with SRT being completed. It sounds like I am going to be on ADT for one year. My first two PSA's over 6 months after SRT came back <.010. Northwestern lists it as 0.00.

First off, I am ecstatic with these results but something inside of me is still scared as hell. Its the last thing on my mind when I fall asleep and the first thing when I wake up. I just don't know what to make of it. Why did my PSA go up so fast post RP? I keep reading this rapid doubling time is not good and it means it may have spread already. Should I be encouraged that it dropped to <.010 so soon? Is it just the ADT masking my PSA or did SRT really work? Can I still hope for a cure? I wish I could list all the questions that go through my mind on a daily basis! Can you guys offer any opinions? I appreciate all the hope you guys give other people and I was hoping a few of you would chime in. I know it can always be worse but I thank you ahead of time!

Jack

PS To offer hope for others, the first 6-8 months of hormone therapy have not been bad at all. I still get up and run everyday and do everything I used to before. I think the only noticeable SE I have had so far are the hot flashes.

Age 64 at dx PSA 5.1
Biopsy Feb 2016, 2 of 12 cores positive, Right Apex and Right Lateral Apex both Gleason 6 (.1cm in greatest length)
RP Northwestern May 2016
Post op pathology upgraded Gleason 7 (4+3) Margins, SV, LN all negative but Focal EPE pt3a
PSA post RP 7/16 .02
10/16 .08
12/16 .12
SRT+ADT 2/17
07/17 <.010
10/17 <.010

Post Edited (boc1324) : 10/3/2017 5:41:07 PM (GMT-6)

Posted 10/4/2017 1:28 AM (GMT 0)
Hi Jack,

Glad that you posted. I bet you felt better once you pressed the submit button.

I think you are doing everything possible to combat the PCa. You should be fine for many years to come.

My urologist and I discussed the idea of peace of mind about 9 months ago and we decided that it was his job to worry about my PCa. We are calling my case a cure. If anything pops back up, we'll deal with it.

Good luck. You have impressive longevity in your family
Posted 10/4/2017 1:38 AM (GMT 0)
Welcome to HW Jack. Hopefully the SRT and ADT have provided you with a cure. Time will tell, and if for some reason it is not cured, you will just move on to the next treatment. For some reason I don't worry anymore. I never call to get my PSA results and I just wait until my next appointment in two months to learn the results. Every once in a while I do get pissed that I have PCA, but being pissed lets me vent, but it won't cure me. Try to stay active and put your mind to good use.my best to you.
Michael
Posted 10/4/2017 1:47 AM (GMT 0)
Guys thank you for the replies. As they say, sometimes it just helps to talk about it, and I think this may be the first time I have since my journey began. It's amazing how reading one of your success stories changes my mood!

Again, thank you for taking the time.

Post Edited (boc1324) : 10/3/2017 7:52:33 PM (GMT-6)

Posted 10/4/2017 2:33 AM (GMT 0)
Welcome Jack. We are glad you are out of the shadows and actively posting.
Sounds like your in good shape
Posted 10/4/2017 3:21 AM (GMT 0)
Welcome and very glad to hear that hormone therapy has been tolerable. It was the hardest part of my journey--just wore me down.

It's hard to say how you should be feeling emotionally at this point. I think we're all scared of the unknown and PCa sure has a lot of unknowns. For my part, I didn't have a particularly great prognosis as a G9 but--five years after diagnosis--I seem to be doing very well. As in really, really well. There's no guarantees in this game, but based on what you've written you should also do well. (As do most of us...)

So for the last few years, my motto has been "cured unless proven otherwise!" (You're welcome to adopt that if it works for you!) Feel free to hang around here and post as needed. (Plus some guys will want to know your secret about handling hormone therapy so well!)
Posted 10/4/2017 4:27 AM (GMT 0)
Welcome and you have every reason to hope for a great outcome.

The HT is masking the RT result so you don't really know how effective the SRT is until you're clear of the HT and your T value starts to rise.

That said, I still think you have every reason to be hopeful. Fear is natural, but at this point there isn't anything to do but watch and wait. Likely the hardest thing to do.

Hang in there,
Andrew
Posted 10/4/2017 9:08 AM (GMT 0)
Welcome Jack and those feelings are normal and sharing them is the solution. I wish you peace. Denis
Posted 10/4/2017 10:07 AM (GMT 0)

boc1324 said...
Its the last thing on my mind when I fall asleep and the first thing when I wake up. I just don't know what to make of it. Why did my PSA go up so fast post RP?

Jack -- thanks so much for sharing.

From a mental standpoint, I'm in the same boat as you are... constantly worried.

I just had a baby girl (my first) at the ripe old age of 46, and here I am worried about being there for her as she gets older.

I think it's important to keep a positive mental state...

Thoughts become Actions
Actions become Habits
and Habits become your Fortune.

We'll make it out together my friend... keep your chin up.

Zzarth
Posted 10/4/2017 10:50 AM (GMT 0)
Good morning Jack

Glad you have joined in the conversation. Your feelings are quite normal. You have sought out excellent medical help. You have done the prescribed treatment. Your results show that your body is responding as desired. You have the potential of beating the beast! The HT treatments were manageable. The HT drugs do mask the results of the RT. This PC race is a marathon. You are in the early laps right now. Hopefully, in several months you will be disqualified from staying in the PC race because your qualifying PC numbers do not show that you have PC! If that is the case, we all will rejoice. If not, we will run beside you as we all run the course. I am pretty sure that peace of mind can not be simply based upon periodic test results. There are those here and other places who are on the very last lap of the race, whose tests results are woefully dismal and yet they have peace of mind - they are encouraged and hopeful. PC does not define who they are. My friend, I pray that you can be disqualified and no longer be in this race!
David
Posted 10/4/2017 11:54 AM (GMT 0)

Jack said...
I still get up and run everyday


No wonder your hormone therapy has not been bad at all. Exercise helps a lot.

George
Posted 10/4/2017 12:30 PM (GMT 0)
George I have to agree with you, I think the exercise helps a lot with the hormone therapy. It was stressed to me that I do not change a thing in my daily life and I always ran every morning before work. I'll admit, I do get sore too but I blame it on getting old.

And David you are so right. I have to keep reminding my self this is not a sprint and probably something I'll have to deal with till the end. Changing ones mindset to deal with the ups abound downs is difficult. I thought I could handle it on my own but I now find myself here and thank you all again for taking me in with open arms.
Posted 10/4/2017 1:29 PM (GMT 0)
Interesting story.... Good Luck.
Hero
Posted 10/4/2017 6:09 PM (GMT 0)
You are learning, as I did, that your mind is not your friend. It buzzes like a fly circling a turd - how can anyone get any rest with all that going on? I learned a couple of tricks in psychotherapy in getting that fly to go away. The first step is what you've just done - acknowledging that it's there, that it's not doing you any good, and it's darned annoying. Instead of trying to ignore it, I learned to do the opposite - notice it all the time. And I mean all the time. There is a practice called Mindfulness that trains one to do that. It took me a couple of months of daily practice until it became second nature.

It doesn't kill the buzzing fly, it just makes it buzz for shorter periods of time. It also changes my attitude from annoyance to amused resignation, making it more tolerable. I get to sleep faster, sleep better, and have less anxiety.

It also keeps you focussed in the present moment. As you pointed out, things are pretty much OK with you right now. It's only when your mind goes buzzing into imagined and often improbable future scenarios, or to the past and "might have beens" that you get anxious.

I found that classes in Mindfulness (available in most cities) provided a discipline that I couldn't do on my own.
Posted 10/4/2017 7:25 PM (GMT 0)
Allen,

if I look at your signature, you have a Gleason 6 and a successfully radiated prostate. There is no way this cancer will cause any trouble within the next 20 years and beyond. If you look at it this way, no need to think about PCa during this period. smile

George
Posted 10/4/2017 7:45 PM (GMT 0)
George-

Thank you for your well-meaning but useless comment.
Posted 10/4/2017 8:40 PM (GMT 0)
😱
Posted 10/4/2017 8:52 PM (GMT 0)
Welcome to the group. From your signature it appears you could be a Chicago area member.

It must have been a shock to find your pathology upgraded after surgery. However, your report on hormone therapy shows how effective it can be. Staying fit has additional benefits.

I wish you continued good luck.
Posted 10/4/2017 11:52 PM (GMT 0)
Jack
welcome!
Congratulation of the < sign. I surely hope that SRT did the work and ADT is just an insurance policy. Its encouraging to know ADT is not as bad as I have read in many cases.
I also had my biopsy at NW but decided to get RP done in Florida.
Would you be able to share where you got the SRT done and who your SRT/RP doc was. NW seems to be beefing up the uro/pc dept - esp with ben stiller getting his surgery done there.
Posted 10/5/2017 2:01 AM (GMT 0)
I am a Chicago area native of the western suburbs and the RP was performed by Dr. Catalona and my RO is Sachdev. Neither are who Ben stiller consulted although I have to admit I did check
Posted 10/7/2017 2:35 AM (GMT 0)
I second Tall Allen's recommendation of mindfulness as a way to deal with the chatter of the mind. Let me also put in a good word for yoga. Until recently, I had no time for mindfulness or yoga, but the last couple of years have changed all that. Exercise, diet, and sleep are also important. So is being active in whatever gives your life meaning. I am so busy with community organizing around environmental issues that I don't have time to obsess about my PCa except during periods when I have to make a major decision about treatment.

Glad you spoke up and don't hesitate to pose those questions that are bugging you when you wake up and try to fall asleep. Perhaps we can whack through some of them and help you find peace. We are all searching for answers.
Posted 10/7/2017 6:21 PM (GMT 0)
Thanks again everyone for the replies. Time will tell...
Posted 10/8/2017 1:27 AM (GMT 0)
Some really good practical testimonials as to how to deal with brain strain has been given. And as overused as cliche's are....sometimes their cliche's for the kernel of truth they contain. One is....

"this too shall pass" ... (which is akin to "time heals all wounds")......

This disease....and it's accompanying treatments (which can be more dramatic than the disease itself in many cases).....can be somewhat more tramatic for some than for others (take *me*....as an example smile)

But time *does* change things doc. "It's the only consistent thing we have" (couldn't help myself smile)

Take care buddy

David

It's not been all that long since you've reappeared from the rabbit hole. And you were in it for quite a while smile

We have an amazing ability .... for adaptation.

Post Edited (island time) : 10/7/2017 7:33:29 PM (GMT-6)

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