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Latest PSA reading, and the last one I will be posting

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Posted 6/5/2013 1:35 PM (GMT 0)
Got the e-mail from my oncologist this morning.

My latest PSA is 60.0

That is up by 16 whole points since December

Also my largest increase at one time in a long time, I was predicting it to be 50-55.

This will be the last time I put my PSA number out to the public.  It will no longer serve any purpose here, as there are already enough men with extreme PSA anxiety on their own, and I don't want them to be alarmed.

Plus, just like with Sonny, my doctor is not treating a number.  With both failed surgery and failed radiation, we are way beyond that point.  We will continue observation, and will do scans as needed.  My recent full-body PET/CT scan still indicates that I do not have evidence of any mets that can be detected by scan. My doctor feels in cases like mine, and perhaps Sonny's as well, there might be areas or pockets of micro-mets, each giving off small amounts of PSA, but collectively, combine to a total PSA number like you see in our cases.

To the urologists and oncologist that subscribe to the inherent danger of PC cases that originated with extreme PSA velocity, my case is being the poster child example of that line of thinking.  Where death from PC is up to ten times higher within 7-10 years, regardless of treatment(s).  For a Gleason 7 case, my cancer has acted aggressive from the very start.

I am okay with all of this, it is what it is.  I still have enough serious quality of life issues with all of my severe chronic pain (nearly 2 years now) and chronic fatigue syndrome, the bladder spasms, and all the rest to keep me busy.

If my oncologist feels we need to do something (HT or Chemo), I am open to his treatment, or until something shows up on a scan, the plan is to continue as we are now.  Don't expect everyone to agree or disagree, this is an unusual case, and has been plagued with severe issues from the very start.  It's been a long hard 5 years.

David in SC

 

Post Edited (Purgatory) : 6/5/2013 7:48:22 AM (GMT-6)

Posted 6/5/2013 1:40 PM (GMT 0)
I know you aren't really surprised, but I'm sorry to hear of the rise, David. I think I can understand why you don't want to post them anymore.

Juliet
Posted 6/5/2013 1:40 PM (GMT 0)
Wow, David...so sorry.  Will this change anything re your treatment plan?

Jim

Posted 6/5/2013 1:53 PM (GMT 0)
Sorry, I was still adding in the edit mode as some of you were posting.

No, not going to change anything right now, knew that before this test was done.

The "go-ahead" with the current plan was based on that recent PET/CT scan being clear, and that was a full body scan.e

Doctor has told me before, that in the few rare cases like mine, he has men with post surgery/post srt PSA readings of 100.x with still no evidence of mets.

So since my current QOL is already so low, we both feel we are buying me some time before making anything worse. Bought 2 years already on this plan. My case can only be examined from a QOL perspective.
Posted 6/5/2013 1:56 PM (GMT 0)
Juliet,

We have men here that get so unglued when their PSA goes from .002 to .003, and those that get real antsy before every single PSA test, even if they are several years out pulling zeros. To those new, it would be hard for some to understand why an increase of 16 points at one time isn't cause me to raise an eyebrow. So since we are not treating a number, its expected to continue to rise, my doctor is treating the "whole patient" instead, knowing my future numbers serve no purpose but possible alarm and fear to some.

David
Posted 6/5/2013 2:04 PM (GMT 0)
Hi David. Okay, then I won't say sorry... But let me ask you once, are you sure this doesn't bother you? It would sure bother me.

I ask the same question to my mother when we talk about where things "might" be going with her or what new scans might show.

I'm not being callous, in case it appears that way, But I asked you about pain management since that is her biggest issue and I'm asking you about this since it's also an issue I'm not sure my mother has fully processed or one she has fully shared her thoughts/fears on.
Posted 6/5/2013 2:09 PM (GMT 0)
I have to hand it to you Dave. If I were you the last thing I would be considering is not to post out of concerns how others may be alarmed. You're a better man than I.
Posted 6/5/2013 2:14 PM (GMT 0)
Actually David, that doesn't sound too bad. Wasn't your PSADT less than 3 months at one time?

This time, your PSA went up roughly 36% in 6 months. At least your PSADT is slowing down.

Mel

Posted 6/5/2013 2:21 PM (GMT 0)
heck that's a piece of cake...mine went from 2.4 to 217 in 4 months!
Posted 6/5/2013 2:29 PM (GMT 0)
davidg -when I say I never have PSA anxiety, I am not being brave or trying to put on a good face, I am being literal. I am not a worrier, about PC or anything else. guess I am fortunate to have this kind of personality, I always take good news and bad news in equal stride, hard to get a reaction out of me with either.

casper, my friend, yea, you got greedy on the PSA cake and took more of your share at one time, lol. my best to you, I am with you

mel, its actually on the increase now according to my doctor, but I not worried about that specific either, not going to change anything for now

ziggy - not being noble, just feel that is in the best interest of my fellow HW's people. I know many men here that would be out of their mind in my situation, I'm not one of them. I don't see the logic in worry and/or despair, when you are through, you are still right where you started.
Posted 6/5/2013 2:31 PM (GMT 0)
davidg - I want to answer the second part of your post about your mother and pain, but don't fully understand how or what you are asking. can you re-word that part for me? really concerned about your mother.

david
Posted 6/5/2013 2:39 PM (GMT 0)
Hang in there dude. You're still on my prayer list.

All the best,
Andrew
Posted 6/5/2013 5:44 PM (GMT 0)
thank you, Andrew. I need that, can't have too many prayers.

------------------------------

Note to Mel:

The way my doctor has explained it to me before, the normal doubling time routine is appropriate when you have cancer/tumor that is basically in one area. But he said that with the thinking on multiple micor-mets, they can be of various sides, located who knows where in the body, and they are growing and replicating at different rates. He said the high PSA number is the cumulative total of these various micro-mets, so the normal logic of doubling time would never be consistent in this situation. Sounds very logical to me. Based on my recent full body PET/CT scan, there is still no one area large enough to be picked up by a scan.

david
Posted 6/5/2013 5:49 PM (GMT 0)
David:

That may well be true (makes sense), but I do know PSADT is still a very important consideration at our stage.

Yours is not that bad at all, and still better than it has been as far as I remember.

Whether it is in 1 place or many, the PSADT has always been a measure of the total PSA increase.

Mel

Posted 6/5/2013 6:00 PM (GMT 0)
Don't wish to argue that point. I accept what my oncologist feels is the case. He has dealt with a small handful of the "PSA Velocity Prior to DX" cases, and he has told me that they are among the most difficult to control, let alone stop.

david
Posted 6/5/2013 6:58 PM (GMT 0)
David, already had a post of mine removed, hope this makes it too you once cancer has left the effective area, it can travel to any part of your body it has mastastisis. What,s considered conventional medicine has not come up with a cure we can all agree on that. My last psa was 30.08 by the way. Write this down ,,how to outsmart your cancer,, change your circumstance my loved friend, remove the hovering cloud, and replace it with rays of hope. I,ll be hoping and praying you did. Jim
Posted 6/5/2013 7:02 PM (GMT 0)
Oh, sorry it a book called how to outsmart your cancer, best seller,s list wonderful informatn
Posted 6/5/2013 7:11 PM (GMT 0)
While 60 has the sound of heft to it, your doubling time is like 2 plus years?

I experienced mine going from .13 in Dec to 155 early May and then dropping to 28 within 3 weeks. I am very comfy with 28 right about now. 60 wouldnt scare me either at your doubling rate.

Now about that pain problem....
Posted 6/5/2013 7:44 PM (GMT 0)

Purgatory said...
davidg - I want to answer the second part of your post about your mother and pain, but don't fully understand how or what you are asking. can you re-word that part for me? really concerned about your mother.

david

thanks, today was a much better day for the second day in a row btw.

What I'm asking is about pain specifically since you're also in serious pain.

I came here and all I was thinking about was cancer, the type, the stage, the treatment etc.

But it became apparent really quickly that the immediate and critical issue was her pain. Once that became clear, cancer really took a back seat. We've started to manage the pain with heavy doses of morphine and "tachiperina (???) ". How do you handle serious pain and do you adjust to it mentally after a while?
Posted 6/5/2013 7:47 PM (GMT 0)
David:

I'm not disagreeing with your doctor.

In fact I agree with him that there are probably lots of micromets and some are fast and some are slow. But I'm just saying that the PSADT reflects the whole situation and it is important.

I'm suggesting that your situation is better than you framed it. Someone else posted that your PSADT is 2 years plus. That's a lot better than 2 months.

Mel

Posted 6/5/2013 8:08 PM (GMT 0)
It is not 2 years, not the way my doctor calculates things. Again, let's drop this part of the conversation, I can see where it's going. The real issue in my situation, is not doubling time, its when mets may begin to big enough to show up on scans. This is where there is a waiting game, a certain element of risk, and my doctor's desire to keep my already poor QOL stable, without going into any advanced treatments. I am still comfortable with his analysis of my case, and while there is a gamble involved, its a risk I am willing to continue with, especially with my doctor's encouragement.
Posted 6/5/2013 8:13 PM (GMT 0)
UPDATE:

My oncologist surprised me with a 10 minute call just a little while ago. While I receieved my PSA reading by e-mail from his nurse, he wanted to talk to me in person about it.

Also, he was assuring me, that he's about to have the phone conference with the doctor at Duke, about the bladder spasm situation.

And, he wants a good report in detail from me, when I meet with the CRPS specialist next week. He's hoping, as I am, that this doctor will be able to diagnose properly what is going on with my increasing chronic pain issues, aside from the generic "cancer pain" caused by nerve damage explanation. His big concern is why is it still getting worse over time, and never better.

He ended up talking about my pain meds, which we are going to leave alone until I talk to the new doctor, and for the first time, instead of being neutral, he's suggesting that I quit the oncology rehab, even though I have been going for 2 years. He feels that is doing more harm than good, and that its very counterproductive.

I like a doctor that will still make a personal phone call on his own accord. It's not like I asked him to call me.

david in sc
Posted 6/5/2013 9:22 PM (GMT 0)
In a way, my case is a lot like yours and Sonny3's in that we are not focused on the PSA per se, but rather the bone scans.

On the other hand, we are exact opposites. My PSA was low at Diagnosis (3.68) and is low on Lupron (0.40). However I have 5 bony mets, but no pain.

Next bone scan will be on July 29, 2013, and every 3 months thereafter.

Neither is ideal. If we could combine the best features, we would be cured, and if we combined the worst, we would be in hospice.

Like you, I am very anal with respect to metrics, without emotion but with faith. I want to see the numbers whether good or bad, just to know where I stand and what the next steps are.
Posted 6/5/2013 9:48 PM (GMT 0)
David it is disappointing to read that your PSA has increased more than you anticipated. That's a real bummer. With the PET scan revealing no recognizable tumour in any one place the multiple mirco tumours is a fair assumption. Faced with constant daily pain I completely understand you putting off the added complication of HT at this time. That would be all that you need ---- hot flashes, emotional downers while coping with severe pain. When the pain is hopefully controlled then perhaps a different plan can be considered by you and your obviously well qualified doc. Know that I think of you constantly, my friend.
Bill
Posted 6/5/2013 9:56 PM (GMT 0)
David--You are in my thoughts and prayers. Take care and hang in there.....Tim
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