Sustained bounce + blues (SBRT) - Prostate Cancer N...

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Sustained bounce + blues (SBRT)

Frostypro profile image
17 Replies

Just had a nice long overseas vacation trying to pretend everything is normal. Back on the homefront now and test time has come for me once again. I've come to absolutely hate the week or two before psa tests. Can't escape the anxiety blues. And of course when you force yourself to open the results and dont see the result that you want, it only adds blues for the coming weeks/months. I know I've been bouncing around rather hard but I really wanted to see something low this time. Instead I got the dreaded hold at the same +1 bounce after another 5 months. Wondering if this is/will become a serious problem. Wondering will I ever get down to a nice little nadir and be happy ever after? Holding my breath on that. Waiting on call from doc probably again saying he "isnt too worried". (Shrugs)

05/2017 PSA 5.1 Biopsy 4of12 (3+4) Decipher .27

09/2017 SBRT at age 40 (Dr King UCLA)

12/2017 3mo PSA 2.5 T 245

03/2018 6mo PSA 1.6 T 288

06/2018 9mo PSA 2.8. T 330

10/2018 1 yr PSA 3.4 T 572

12/2018 15mo PSA 0.9 T 292

09/2019 24mo PSA 1.9 T/285

02/2020 29mo PSA 1.9 T/299

17 Replies
Jimhoy profile image
Jimhoy

What did you do between 12 and 15 months?!!

Frostypro profile image
Frostypro in reply to Jimhoy

Between 12-15 months I Stressed myself out to the max thinking I was doomed. But I'm not sure I want to try it again even though the strategy seemed to work.

Jimhoy profile image
Jimhoy in reply to Frostypro

I’m no Dr but seams that you’re hovering all around 2.0 for as many years!! Test results can be corrupt and vary for a number of reasons. They often repeat if questionable!! I think if I was in your range, I don’t know if I’d be shitting bricks!!! Like I’m am now that I am waiting for my first test to be taken since starting iADT in Nov.

Best of luck brother!!!

Jc

in reply to Jimhoy

Jomhoy . That adt is going to work! Best of luck brother! 😂

in reply to Frostypro

I too thought myself a goner. Truthfully I don’t know what I’ll do when pc comes back for its dinner .. It’s dinner being me. I’m like that ostrich with my head in the sand . I think in time you’ll feel better .

Tall_Allen profile image
Tall_Allen

I can't see a thing wrong with that. Bounces and a longer time to nadir are prognostic for a more lasting success. You probably have some prostatitis that will go away eventually. Anxiety can kill you long before prostate cancer.

pcnrv.blogspot.com/2018/03/...

Frostypro profile image
Frostypro in reply to Tall_Allen

Thanks Tall_Allen. I'm certain you've told me this information at least a couple of times now and deep down I know I'm probably just killing myself with unwarranted anxiety. But it's always much more reassuring when people like you and Dr King tell me I'm still good. I need to trust the process and limit worry to when the gentlemen on the west coast tell me I have real problems. I hope you're right about the prostatitis.

Frosty in MI

Tall_Allen profile image
Tall_Allen in reply to Frostypro

Dr King has been doing SBRT since 2003 and has seen it all.

kayak212 profile image
kayak212 in reply to Frostypro

Frosty,,,Does Dr.King at UCLA specialize in SBRT? My son lives in LA and although i have not decided on starting any treatment at age 80...4 1/2 years on AS, if i do i might go out there for a doc of his reputation.Just wondering. Best of luck to you. I see how young you are so it is impossible not to worry a lot,but it wont change a thing in your PC...if you are following a sound protocol with a doctor you trust with good creds that is about all you can do. I doubt the terrible anxiety etc can be good for your health generally even if it doesnt impact your PC....if that is true. Hang in there!

curtisbirch profile image
curtisbirch in reply to Frostypro

Based on my reading — and dialogue with Dr King as well as a conversation pre treatment with Dr Dimanes, who also was at UCLA, you are totally fine. Your numbers indicate nothing but a normal bounce. If you stay at a number you don’t like over two tests that doesn’t mean you aren’t still in a bounce. Especially under a 2. I would love to be back in the 1’s. Haven’t been since 6 mos post HDR brachy, when I was 1.6. My last two tests at 16 mos and 19 mos were 3.5 and 3.4. I was expecting a big immediate drop from the 3’s like you had. That’s when I basically had to go through all the stress you are feeling now and learn a little more. I was sure that not having the big drop, like everyone else seems to have around that time, meant something bad was going on. But now, after this extra research, I’m confident that all these abnormalities and lack of patterns are what make them bounces. And bounces are good news. Per Tall Allen, and legit studies, the more bounces —and the longer it takes you to get to your nadir, or low point—the better the outcome will be. So looking at your PSA chart though this lens, you are right where you want to be.

in reply to Tall_Allen

Amen.

Magnus1964 profile image
Magnus1964

So your bouncing with low numbers. Looks good to me.

Wow! Frostypro , 40 was an early ticket .. that’s crazy .. glad you got away for a vacation.. But you’re correct , we carry this with us . I’m undercut by treatments And crippled by no t and osteo .. I test in a week . Have tested clear four years now. Stiil , we know the beast lurks within. Worry is stress . It comes hand I hand with this darn disease.. I got blood drawn yesterday . Took a long time. Barely pumped out three bikes in five minutes. My veins wear big before dx. Now they can’t find em easily. What’s that say an bout my heart? We all can understand how you feel .. I’m with your Doctor in saying that don’t worry . Line Alfred E. Newman said” What me worry”? Laugh and cray each day brother . Bit get something from each day . You’re not done yet . Don’t quit . Knock that pc away . Easy to say while I’m not under the gun at the moment. That doesn’t mean that pc has had its fill with me yet. Basically once we step through the treatment door we live on pins and needles . Be well .😎🌵

Verso profile image
Verso

I am glad you had a holiday, this is what I always think of after having had a prostate removal a year ago. I just feel like I would just go away from my wife, fortunately she has not complained about my ED, its only that I dont know what deep in her. I am 54 and she is 14 years younger, I feel that she is more worried than me. Sometimes I think it would have been better if I did not wake up from that theatre bed. It pains me very much and to think that I am less of a man or not a man at all is killing me. Fortunately there is no trace of PC for me, but I dont know if that is helping.

tucker_man profile image
tucker_man

Wow, you’re post came at the right time. I too am on vacation and had my blood drawn last Thursday. Got notified by email that my results were in. I dreaded what I would read. My PSA went up to 5.4 from 4.5 3 months ago and 4.04 before that. Dropped from 7.74 right before IMRT last April to 3.94 3 months after. I’ve been trying to stay positive but this last result really got me down and I didn’t need to see that on vacation. My urologist states he’s okay with the result but you’re post is reassuring. I feel better and won’t worry the rest of my trip. Thanks.

RonnyBaby profile image
RonnyBaby

The trend is within an initial pattern that 'bounces' in numbers that are still low enough to have some optimism.

You are still in the earlier phases of treatment.

Maybe you will go lower or continue to trend in the lower ranges.

We wish you the best.

curtisbirch profile image
curtisbirch

I have new insight on PSA bounce from Dr King himself. And it’s the first time I’ve actually felt comfortable with my PSA results not going as low as I’d wanted them to go. After HDR brachy therapy I reached 1.6 pretty fast but then was up in the high 3’a for quite a while. Then after 2 years, I finally had my first significant drop since my treatment—my PSA went down to 2.2. My January PSA result was 2.4 and I wasn’t sure what it meant. I honestly wanted to see something in the 1’s after 2.5 years. But I got a promising response from Dr King in that my nadir could be 2. He mentioned that I didn’t need to get back into the 1’s. He also says .2 difference up or down doesn’t mean anything either. Further, the best news to hear was that he told me definitively that there was no cancer in there. If that were the case, he said, I’d be seeing a steady and dramatic rise in PSA. So now all of a sudden I have a completely new perspective on PSA bounce. I wish I had known this all along— it would have saved me a ton of stress each time I received new PSA results. How have your results been over the last year? Hope this information is as helpful to you as it is to me. Here’s to a happy and healthy 2021 — and stay safe out there.

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