Welcome New Member-----Jtouchdown

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Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 10/18/2010 11:11 AM (GMT -6)   
In another thread, jtouchdown posted this............welcome, and hopefully you'll get some members chiming in shortly.
 
Arnie in DE
 
This is my initial post and I first want to thank everyone for the time and effort and support given by all!! I'll try to be as thorough as possible but I don't have my "numbers" in front of me. Here goes: Current age - 59

My GP noticed a rise in PSA in early 2009 from 3.6 to 4.1 and referred me to a urologist. I saw him in 4/09 and PSA had risen to 4.6. Biopsy next month (5/09) confirmed PC in 1 of 6 samples and only to a disease degree of 6%. Pre-op Gleeson score of 3+3. After considering my options, I had RP via DaVinci robotic method on 9/17/09. Post-op Gleeson of 3+4; margins "clean", no lymph node involvement therefore no lymph nodes were removed because of my minimal amount of disease.

First post-op PSA reading on 1/5/10 was .19. Surgeon considered possible lab error and confirmed .19 a week later. One of his associates recommended radiation of prostate bed; I decided to "watch and wait". On 4/8/10, PSA rose to .46. I saw a radiation oncologist (RO) who was alarmed and sent me to see a medical oncologist (MO). On 5/10/10 my PSA fell to .27, which I showed to the MO a few days later during my consultation with him. He recommended no hormone therapy nor radiation therapy "unless and until you see a sustained rise in the PSA number." My RO concurred with this since he was the doctor who referred me to the MO.

On 7/21 my PSA rose from .27 to .28 which is negligible and my RO recommended to continue "active surveillance". On 10/4 my PSA rose from .28 to .38 and my RO has now recommended radiation therapy. I have an appt with another RO this Thurs. 10/21 just to see what he thinks but I feel pretty sure that I'll go ahead with the radiation therapy.

Here is my frustration............when my PSA was .19 last January and I considered radiation therapy at that time, I was told by my RO that there was a 50/50 chance of actually hitting and killing the cancer cells. In other words, the protocol is to radiate the prostate bed as soon as possible, however, there's no guarantee that the disease has not moved on to somewhere else. (By the way, a full bone scan and MRI of my organs surrounding the prostate bed were both negative.) So I chose to "watch and wait". And now that it has been 13 months since surgery, who knows where the presumed cancer cells have traveled to??

This post-operative PSA rise......and fall.......has my docs scratching their respective heads as to why it would drop from .46 to .27. And the inability of these "pros" to definitively say that radiation therapy would wipe out the disease, is frustrating me. I worry about healthy organ tissue getting "fried" in the radiation process, based on some horror stories you read about.

Thank you for the time taken by anyone who is reading this. I will keep you posted going forward and I would appreciate hearing from anyone who has experienced a similar situation.

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 10/18/2010 1:14 PM (GMT -6)   
from other postings - put into this new thread -
FROM COMPILER ( MEL)
Jtouch:

I am close to where you are. My post-op PSA is rising. While not at your level, it could be getting there soon.

Look, there was no guarantee with surgery and there is certainly none with backup SRT. I intend to start it as soon as BCR is confirmed. But it is still only a percent probability. Unfortunately, I think 50% is overly optimistic. But if you can get to it before 0.50, I think the data indicates a decent chance of a cure. I will be consulting a medical oncologist at Umich on 11/1 and I might end up with a better handle on the statistics. I will also ask about doing HT before SRT. I'm not sure if it is appropriate in my situation.

I also wonder if I should have caught my PC sooner. I had a slowly rising PSA but it didn't hit the magic number of 4.0 until my routine physical in August, 2009.

MelPSA-- 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
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tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 10/18/2010 1:15 PM (GMT -6)   
from jtouchdown -from other posting - put intohis won thread -
jtouchdown
New Member

Date Joined Oct 2010
Total Posts : 2
Posted Today 1:54 PM (GMT -5)
Thanks for your input, Mel. You're correct re: "no guarantees". I guess my disappointment stems from the fact that my initial prognosis was "low-grade" disease. In fact, I thought I was being a little radical with my decision to have the surgery, as opposed to radioactive seed implantation or single-beam radiation. I even remember being embarrassed at my first consult with the second radiation oncologist I saw because he is the dept chair at a well known city hospital and I felt like my case wasn't serious enough to warrant taking up his time.
Now I'm reading that I should probably consider combination therapy, i.e. radiation along with hormone therapy is supposedly getting better potential cure results. And the RO that has now recommended radiation told me to get an opinion from the medical oncologist again that I saw back in May.

Thanks again for your input!

gold horse
Regular Member


Date Joined Nov 2009
Total Posts : 360
   Posted 10/18/2010 2:45 PM (GMT -6)   

I undestand why you feel this way,pc is a crazy with your numbers you shuld be ok.

so do not give pc any more chance and do what you need to do.good luck. shakehead


Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 10/18/2010 3:02 PM (GMT -6)   
I think it is unfortunate that there is so much focus on the variance in ultra sensitive PSA results because ultra-sensitve is even more unreliable than normal PSA, which can see very substantial swings. I wrote up a piece which you can see here Ultra Sensitive PSA

There was also an interesting discussion on my Forum Explanation for nondecrease in PSA despite prostatectomy?

One aspect of this continuing discussion on pst RP PSA levels is that it appears that with modern approaches to surgery there may be a greater chance of some of the gland being left behind and continuing to generate PSA without necessarily containing PCa cells (I assume everyone knows that PSA is not PCa specific?). This was said in one thread to be more common with RALP (Robotic Assisted Laparoscopic Prostatectomy) procedures than the old 'manual' procedures although the only study I have seen does not support this view.

Don't know if this helps. PCa is an uncertain disease to deal with.
Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 7: No treatment. Jun '07 PSA 42.0 - Bony Metastasis: Aug '07: Intermittent ADT: PSA 2.3 Aug '10

It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey

jtouchdown
New Member


Date Joined Oct 2010
Total Posts : 9
   Posted 10/18/2010 6:38 PM (GMT -6)   
Arnie and Tatt2man, gold horse and Terry.........Many thanks for the warm welcome!! I'll be sure to keep y'all in the loop. Arnie, I'm right up the road in Chester Co Pa.
Thanks for the prior pieces, Terry. Good stuff!

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 10/18/2010 10:08 PM (GMT -6)   
Jtouchdown, you are indeed right up the road. I'm in New Castle County.............where did you have your surgery performed, and who was your surgeon, if I might ask?
 
Arnie

jtouchdown
New Member


Date Joined Oct 2010
Total Posts : 9
   Posted 11/4/2010 12:51 PM (GMT -6)   
Sorry I'm just getting back to you Arnie. My surgeon was David McGinnis, at Bryn Mawr Hospital in Bryn Mawr, PA. He has an excellent reputation and has performed well in excess of 500 robotic RPs.

Update: I had my first of 38 radiation treatments this morning. My oncologist said I have a 70% chance for a cure. Again, on 10/4/2010, my PSA rose from 0.28 to 0.38 and I was advised by 2 different radiation oncologists and a urologist to begin treatment.
So here's to hoping whatever is causing my PSA number to rise is still in or near the prostate bed!!

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 11/4/2010 1:03 PM (GMT -6)   

Jtouchdown...........still a small world. I consulted with McGinnis, and would have had no problem going with him. My local uro referred me to him and Dr. Lee at HUP, with whom I eventually went. I'm sure you were in excellent hands, as was I----------good luck on the radiation, and keep us posted on your progress.

Arnie

 

 


jtouchdown
New Member


Date Joined Oct 2010
Total Posts : 9
   Posted 11/16/2010 1:59 PM (GMT -6)   
Update: Just finished my 9th IGRT radiation treatment today. I feel fine (no fatigue) and I just hope that the presumed disease that is giving me a slightly rising PSA reading is still in or near the prostate bed.

I should finish with my 38th "salvage" radiation treatment just before New Years. My understanding from both my surgeon and my radiation oncologist is that my PSA #s will NOT "drop like a stone", i.e. they should come down gradually over a period of several months following the end of treatment. Anyone have any experience with this? Again, I had RP surgery in 9/09 and had a .19 PSA in 1/10, .46 in 4/10, dropped to .27 in 6/10, .38 on 10/4/10, which prompted me to decide to treat via IGRT.

howard l
Regular Member


Date Joined Aug 2010
Total Posts : 152
   Posted 11/16/2010 2:21 PM (GMT -6)   
I also had RP. My first two readings were  undetecdable. I showed a rise to .5 7 months after RP. Started GBRT 39 sessions 72g. The last being in August. PSA was actually 1.5 by the time they started IGRT. One month into IGRT PSA droped to 1.0. PSA after completion of IGRT .47. One month post IGRT PSA .24. So keep beleiving because it does work. At least for now.
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.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7204
   Posted 11/16/2010 4:36 PM (GMT -6)   
Jtouch:
 
I never heard of a 70% chance of a cure with SRT.
 
Sounds a bit overly optimistic
 
Don't mean to be a downer.
 
I'm in a similar situation (well, maybe heading for SRT)
 
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

jtouchdown
New Member


Date Joined Oct 2010
Total Posts : 9
   Posted 11/16/2010 5:21 PM (GMT -6)   
Thanks for the info, Howard. I'll continue to put one foot in front of the other and hope for the best. The technological advances our system has made in recent years are superb. I have a close friend who had radiation 20 years ago for testicular cancer and he said it made him sick as a dog!! Again, thanks for the information.


Mel, my friend, it's funny that you say that about the 70% chance for cure because I had an initial consultation back around February, just after my initial post-op PSA reading of .19. The radiation oncologist I met with (and continued to see right up until August) said that "if I do radiate you, there's only a 50/50 chance of success". So he sent me to a very well-known medical oncologist because my PSA had risen to .46 by April, and the RO thought we might be dealing with an aggressive strain of disease. By the time I saw the MO however, in June, PSA had dropped to .27 and he recommended neither hormonal therapy nor radiation.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3741
   Posted 11/16/2010 6:43 PM (GMT -6)   
Today's radiation treatment produces far fewer side effects than 20 years ago...Yes, salvage radiation is a 50-50 deal..But a 50% chance is a heck of lot better than NO CHANCE!! Your 3+3=6 moved up to 3+4=7..That means the pathologist detected some grade 4 cancer in your prostate. Grade 4 is aggressive cancer..

But anytime your PSA drops, I would go with your MO and not rush into aggressive treatment..Quality of life matters..

My post surgery PSA was a HUGE disappointment, but what is is...I start SRT and ADT combined in a few days...Best of luck to you...
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
" 61: 5.2
" 64: 7.5, DRE "Abnormal"
" 65: 8.5, " normal", biopsy, 12 core, negative...
" 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
" 67 4.5 DRE "normal"
" 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT, Dec

jtouchdown
New Member


Date Joined Oct 2010
Total Posts : 9
   Posted 11/16/2010 7:59 PM (GMT -6)   
Thanks Fairwind and the best of luck to you!

Interesting that the 3+4 post-op Gleeson score was never explained to me that the "4" means I have an aggressive type of cancer. Where did you learn/hear that, i.e. I'd love to see that in Walsh's book or some other type of reference material like a JAMA (Journal of American Medical Assn) article. I'm not disagreeing with you, rather wondering why my "team" of surgeon/urologist, 2 radiation oncologists, and a very well known and respected medical oncologist never explained that to me.
Tomorrow, I'll run that by my radiation oncologist; can't wait to hear what he has to say.
Thanks again Fairwind. I'll keep you posted.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3741
   Posted 11/16/2010 9:04 PM (GMT -6)   
There are five Gleason grades, 1,2,3,4,5..One and two are seldom if ever used. The first detectable cancer is graded as "3". The next higher grade is "4", the cells are now becoming poorly differentiated, the cancer more aggressive. The next is "5", no longer even recognizable as prostate tissue, aggressive and fast growing, prone to metastasizing early...Walsh's book, pg 183-185....

While 4+3=7, so does 3+4=7..But they are not the same...the 4+3=7 is considered to be worse because the majority of the cancer is grade 4....

jtouchdown
New Member


Date Joined Oct 2010
Total Posts : 9
   Posted 11/16/2010 9:41 PM (GMT -6)   
Many thanks for that explanation, Fairwind! In retrospect, maybe I should have been more inquisitive with my surgeon after my RP, re: the 3+3 vs the post op 3+4. Again, none of my docs raised a red flag over that. My margins were "all clean" and, based on my initial diagnosis, I had a minimal amount of disease and time to decide which course of treatment to pursue.
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