Uptight about Monday

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compiler
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Date Joined Nov 2009
Total Posts : 7211
   Posted 10/28/2010 3:03 PM (GMT -6)   
Well, I'm scheduled to meet with Dr. Maha Hussein, supposedly a top-notch medical oncologist at Umich on Monday. I am really uptight about one thing. I suspect they will want to do another PSA test. My post-op PSA has been rising (see my signature below). My next one is scheduled for 12/21/10. I will probably delay that until 1/3/11 as I have my next appointment with my Ford team on 1/7/11. I might as well wait so I can enjoy the holidays.
 
My concern is that if it is done on 11/1/10, the cat might be out of the bag at that time. I would just like some time to try and live life. My wife and I are thinking about going on a cruise (we have never taken one) during my break, around 12/13 for a week. I fear that a bad PSA test on 11/1 might result in a suggestion to start SRT immediately or do another PSA a month later and then start SRT should it confirm the bad numbers.
 
I guess if they want to do a PSA on Monday I'll express that opinion and see what they say!
 
Incidentally, here are the questions I'll be asking on Monday. Feel free to suggest others:
 

1) How do I know if the barn door is open? In other words, is there any way to determine if the PC has gone systemic, which would eliminate the need for SRT?

2) Does it make any sense to do any kind of scans? If the probability of anything showing up is say 4%, does it make sense to subject myself to those tests?

3) Does it make sense to get on HT before SRT? If so, right now? Or under what conditions?

4) I am assuming that SRT is the next step if my PSA rises. If so, what PSA level would trigger that next step?

5) Supplemett/diet recommendations. I read a lot of contradictory reports (except for D-3). Opinions?

 

Mel

 
 
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06

LV-TX
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Date Joined Jul 2008
Total Posts : 966
   Posted 10/28/2010 3:24 PM (GMT -6)   
Good questions.

Let us know what the answers are.

Personally, I am with you on the waiting with the psa test until after the holidays. The few months won't change any outcome or future outcomes. No since stressing yourself out.
You are beating back cancer, so hold your head up with dignity

Les

Signature details in Sticky Post above - page 2

BB_Fan
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Date Joined Jan 2010
Total Posts : 1011
   Posted 10/28/2010 3:38 PM (GMT -6)   
With your PSA progression, you may not get ot .2 if you are indeed on the way up. If SRT is in the cards, you don't have to start right away. You can go on HT for a month or more to get through the holidays. Adverse effects of HT, hot flashs and loss of sex drive, take a while to kick in, so it shouldn't impact your trip. Alternatively you can just roll the dice and hold off on the PSA test. Best of luck in whatever you decide. BB
 
PS - How about my Celtics kicking Miami's butt. Go green!!!

howard l
Regular Member


Date Joined Aug 2010
Total Posts : 152
   Posted 10/28/2010 3:54 PM (GMT -6)   
 I started SRT at .5. Which was really 1.5 due to tests which all showed clean. Another waste of money with PSA being so low. SO it actually took 2 months before I started. PSA 1 month into SRT 1.0. PSA at completion of SRT .47.
PSA 2 months post SRT .24. I would say you have time since your doubling time is slow.
DX age 58
PSA 5.4
Gleason 5+4 = 9
City of Hope Clinical Trial (punch protocol). 6 sessions textore every 3 weeks + lupron
PSA .1
RP Oct 2009. Seminal Invasion positive margins. Lymphnods clear.
1 month PSA post op undetectable.
4 month PSA undetectable.
7 month PSA .5
Bone scan and CT scan negative. Prosticint scan mild activity in prostate bed.
EBRT May 2010. 39 sessions 70gy. On number 37.

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/28/2010 4:26 PM (GMT -6)   
Mel...your doubling time isn't that slow. .01 to .06 in six months (psa doubling 1.1 ~ 2.6 months w/ 10% error margin) isn't in your favor and if that trend continues by January it will be 0.14. Still under the 0.2, but with the velocity and with a 4+3, I wouldn't wait much beyond January for testing.
You are beating back cancer, so hold your head up with dignity

Les

Signature details in Sticky Post above - page 2

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 10/28/2010 4:26 PM (GMT -6)   
Mel,

There you go again, way out ahead of the situation. It just is what it is. Knowing you from listening to you on HW, whether or not you know what your PSA is, you will think about it every day anyway.

On the positive side, if it has dropped, you will feel great relief for a while. On the negative side, if it has risen, you know what it is, and all the worrying about it will do no good. Get a script for some happy pills and go on the cruise.

Don't let this disease rob you mentally as well. Just decide to live each day to its fullest, and when you can't, live it as much as you can. Your cruise will be just as great whether your PSA has risen or not.

You've got a lot of good years left, no matter what the PSA does. Enjoy every day.

That is what I tell myself.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/28/2010 4:29 PM (GMT -6)   
mel,

why are you even seeing a medical oncologist so soon? you dont even have BCR, and you are a long way from that yet. in my local
area, the prevailing thinking post-surgery, is 3 consecutive rises above .10, based on 3 PSA tests each 3 months apart. i would at least
wait to see if you even hit .10. just seems like jumping the gun a bit.

i think any scan at this point would be a waste of time or money. with a psa of .06, what would you expect it to find?

on your question #1, not even an expert can give you a sure or exact answer. how long it takes you to have BCR, if you ever do, would give
some possible clue to the question

question #3 - you would get many answers there. i talked to 3 radiation oncologist, 2 of 3 said not to do the HT before SRT, the 3rd one said yes, but then said he couldnt prove that i really needed it or if it would work.

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 10/28/2010 4:29 PM (GMT -6)   
If the doctors want to do a PSA test now, then I say do it. If you really don't want to know the results before your holiday, then tell them -- I'm sure there is a way to do it.

My uneducated response to your questions are:

1)You won't know if the PC is systemic but with a positive margin, there is a reasonable prospect of it being local.

2)With your current low levels of PSA, scans won't show anything.

3)HT before SRT is a good question, and I'd like to know the answer to that too.

4)A PSA level of 0.2 is the usual trigger level for SRT, but if you or your doc are more pro-active, it could start at 0.1

5)Supplements are largely ineffective and may do some damage. Eat a normal heart-healthy diet. I have started taking a daily 100mg aspirin, as there have been reports that is slows the spread of PCa.

Good luck for Monday.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7211
   Posted 10/28/2010 5:05 PM (GMT -6)   
Thanks for all your responses.
 
Piano -- your answers to my questions agree with mine. But I want to see what the expert says. Yes, one of my main queries involves HT in conjunction with SRT. There seem to be a few studies that indicate it might improve my odds (again, at a cost). I have also heard of various tests to determine the aggressiveness of PC (ploidy analysis?). I'm not sure if they would be useful (ie: impact any choices). Certainly a question to ask.
 
Goodlife -- thank you for telling me to relax and not think about PSA/PC/etc. I'm pleased that you can do it. I can't quite get there although I am close most days. As I've said before, when a PSA is looming (within 2 weeks) my anxiety goes way up. THAT'S WHEN YOU SEE ME POSTING A LOT! When it is not looming, life gets back to very close to normal. I daresay that MOST folks here DO think of PSA and PC every day -- especially those who don't have the best pathology. We all have different psychological makeups.
 
David -- why NOT see a medical oncologist? With a BCR apparently on the horizon, there are questions that I have that are best answered by an expert. Additionally, if things really go south I will need a good medical oncologist on a regular basis. Dr. Hussein is not easy to get in to see. She is SUPPOSEDLY one of the best around. I want to establish myself as one of her patients (unless I end up not being impressed). Now is the time to do that. I hope that answers your question. But I have one for you: why are you NOT seeing a medical oncologist?
 
LV-- yes, I am very concerned about the doubling time. However, I am not sure how valid any of that is with PSA scores under .10. In fact, the MSK nomograph won't even accept figures below 0.10.
 
A general comment to all. One of the criticisms about the ultra sensitive PSA tests pertain to the anxiety it causes. I am a perfect example of that. But, on the other hand, it has allowed me to get everything in place. If I do have a BCR and need to start SRT, I will be in a position to start it quickly, and not scrambling to set up appointments and first find out about SRT. Kind of a double-edged sword here!
 
Mel
 
 
 
 
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/28/2010 5:11 PM (GMT -6)   
mel, why do you think i need to see one? i have no proof yet of srt failure, though it is possible. plus, with my 3 previous non-pc ultra rare cancers, already have a relationship with one of the sharpest medical oncologist in the state. if i need one, he's there for me. right now, i am not going to jump the gun. i feel sometime, no insult intended, that you get too far ahead of yourself, and set yourself up for a lot of needless worry. stress can kill too, brother. pass on the next psa test, take the cruise, enjoy the holiday. nothing is going to happen between now and the first of the year that would hinder or worsen your situation, regradless of the next psa reading
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7211
   Posted 10/28/2010 5:18 PM (GMT -6)   
David:
 
I don't know... if I was looking at a possible SRT failure, I would be looking at seeing a medical oncologist.
 
But, then again, as you point out, perhaps I am way too far ahead of the curve.
 
(I honestly don't think I am, but I wouldn't bet on it!)
 
I'm glad you have a contact that's a good medical oncologist.
 
Mel
 
 

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/28/2010 5:19 PM (GMT -6)   
Mel...

see if this will copy and paste into your browser. It is a psa doubling calculator using your stats

adam.drahtwarenhandlung.at/webapp/mg2008/chapter_prostata4/example_psa?sessionId=695d82ad7f3a826c1cfdb3f9d651696c&transactionId=30f98e1b3d78bf6634c0af1e86780c2b&redirect=1

I'll see if I can add a clickable link...

Post Edited By Moderator (James C.) : 10/28/2010 4:27:21 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/28/2010 5:27 PM (GMT -6)   
mel, hes more than a contact. at the time, i was one of only 38 known cases of that type of cancer in all of US medical history, and less than 300 cases in ithe world. he had one other patient beside me with the same cancer, which effectivey made him the world's expert. since then, they have reduced the number of cases, where i had the cancer on my body, i am now one of only 6 verified cases in the entire world. that is way beyond being ultra rare. his research at the time, probably saved my life, as it was a very malignant cancer, i have been free of it for 10 years now, which he considered the safety mark for that cancer. so if i had to see him, he's my man in advance
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7211
   Posted 10/28/2010 6:32 PM (GMT -6)   
Thanks LV. I can do the math myself if I want to. I know it's bad (probably 2-2.5 months). BUT my point was that MSK will not accept input of less than 0.10, meaning that perhaps at this level the doubling times are not that valid.
 
Anyway, the oncologist on Monday will have all that data. I'm sure she will comment on the figures.
 
Mel

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 10/28/2010 6:46 PM (GMT -6)   
I have said this to you before. I would say , again, the 0.01 and 0.02 are esentially the same and the variance could likeky be "noise". So if that is true, the 0.06 could be considered just one rise? you really need some more psa data before you can draw ANY conculsions. I am sorry to see the agony you are in and we all feel for you. You (we) are all in a situation, we can not control weather our psa rises and if I was in the agony you are in, I would definately get myself on some medication for anxity/depression. It seems like your head is about to bust? Sorry to be so blunt but, some way, either by looking at the numbers differently or medication, you seem to in need of some relief.
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total , considering IPP
10/10 Dr Boone, Baylor recomended AUS
post op psa's 0.04,<0.1,<0.1

alf203
Regular Member


Date Joined Jun 2010
Total Posts : 52
   Posted 10/28/2010 8:37 PM (GMT -6)   
 well it is only a number you need to have a handle on where your number is so you can make the right decision for your treatment . They will want 3 psa going up to make sure it is going up, best to be armed with knowledge to make the right choice. I get my psa every month to see how fast it is moving . Take your trip you need to get your mind off it every once in awhile.  good luck alf
AL - 49 Feb 09 dx PSA 118 Gleason score 5-4=9 cores 11-12-100% Stage T4m Cat Scan -mri -Bone scan/ caner spread - spine/lung/liver. Treatmen; casadex + trellstar 3 months PSA droped to .054- pulled off casadex .8/09 PSA 7.43 12/09 PSA 11.65 started lupron/ new drug tak700 1/10 PSA 7.81 -2/10 4.95 4/10 3.34 7/10 [4.02] 8/10 4.4 now upgraded to [T4M1C ]

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 10/28/2010 9:01 PM (GMT -6)   
Alf,

What a journey you are having. I thank you so much for posting. I take great encouragement from hearing men with Gleason 9 who are giving the PC a run for its money.

There are times in my mental journey that I say what's the use ? It is guys like you and others who give me the courage to go on, and be thankful for where I am at.

I hope you too can find time that you are able to somehow push the PC to back of your mind and enjoy the life with your significant others, be it cruises, walks in the park, weekends away, or whatever you find pleasure in.

Goodlife
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

alf203
Regular Member


Date Joined Jun 2010
Total Posts : 52
   Posted 10/28/2010 9:29 PM (GMT -6)   
goodlife; Well I did take my mind off pc for awhile , went to ny [time square] for the week end to spend time with my wife . the doc was all for it he says you need to get your mind off it once in awhile , saw a show had good time ,wife need it not handling this very good best of luck. alf

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 10/28/2010 9:32 PM (GMT -6)   
alf so pleased that you tood the break in NYC. I know it was good for the both of you. Thanks for you post. You give all of us hope.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 10/30/2010 11:13 AM (GMT -6)   
Good hunting Mel if you find any definitive answers to such questions, we can all learn something perhaps.
The experts vary in their advice and protocols so do they know the answers?????  Scans are basically worthless and nice the FDA shot down Combidex for us, which is a little better in definitivy questions, but it isn't about us as much as it is about the medical profits and their served interests, you come secondly if that (is my perception but big brother would have me eliminated at some point for speaking my mind).  This Twilight Zone scenario gets wilder and wilder as you travel down this road. Yeah they will seek to do scans, it is standard protocol and profit maker and probably find nothing even if you psa reaches  20-30 range or so.
 
I have heard about Hussein at U of M, I elected to go with another doc (I could go anywhere with my current insurance and have done so for other opinions that I wanted to seek).  I know another patient whom saw Dr. H, cannot say this person got anything other than what you would guess as treatments, unfortunately this patient only lived maybe 2 years after hiring this doc and had much lesser stats than I was found with. 
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage
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