Stilll struggling with the decision

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compiler
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   Posted 3/7/2011 12:19 PM (GMT -6)   
The decision I'm talking about is whether to add HT to my SRT regimen. I am supposed to do the SRT set-up Tuesday next week and probably start the following week.
 
Ford Hospital called me just before I was about to call them. They had just received the PSA result. I told him I was going to start SRT and that would have been the end of the conversation. But I did ask him then about HT and he admitted it was a "very gray area." But he also indicated it might be a good idea, but they really don't know for sure. He then recited the side effects. Basically, it was not a ringing endorsement of HT and he wouldn't have mentioned it had I not asked. Still, he did say it might help. He said the radiation oncologist might know. But my radiation guy is on vacation this week. His office said to ask him when I see him on the 15th for the set-up. I will, but I wonder if these guys are knowledgeable in this area.
 
I am awaiting a callback from Dr. Hussein at Umich. She is a top medical oncologist. I'll see what she says. She never responded to my email. I had to call the Umich Cancer Center and leave a message. I finally got a callback from someone who will actually then get the message to her and I can expect a callback probably tomorrow.
 
I have to be honest with myself: I SOOOO do NOT want to do this. It is hard enough to resign myself that I have to do SRT.
 
I am very frustrated. The feeling is that events are running away from me. Confusion lives on!
 
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- yes.. PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06; 1/4/11-0.13,3/1/11--0.27

Old Sailor
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Date Joined Aug 2009
Total Posts : 209
   Posted 3/7/2011 12:36 PM (GMT -6)   
Mel, I asked the same question when I started SRT (why not HT at same time).  Mayo Doc said that to be honest, SRT probably only effective 50% at best but if HT is added and PSA is reduced, they would not know if SRT or HT caused the reduction.  He also said that if SRT not successful (which it wasn't) we could still go with HT several months after the completion of SRT which was completed on 6/4.  I started HT on 11/26 when psa 1.0.   The Old Sailor

Sonny3
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Date Joined Aug 2009
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   Posted 3/7/2011 12:51 PM (GMT -6)   
Mel,

I posed the same questions to my Oncologist and Rad Onco when I began my RT, they both agreed that RT would either solve my issues or not. If not, HT could well be in my future. Both are well respected in their fields with MD Anderson. Personally I have a lot of faith/trust in MDA. My RO is now the head of the UCLA Radiation Dept.

My Onco has discussed HT with me in my last two visits. In Sept when my PSA was 2.2 and in January when it was 3.9. He still said not yet. We will discuss it again in May when I have another complete skeletal survey to look for METS.

I think that this is one of those areas where there is not a universally accepted agreement on which is better/productive.

Disclaimer: I am not an MD or any other initial, this is just my own personal experience and opinion. It is not intended to start a discussion of Point - Counter Point that has seen a rise here lately.
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5% positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9

Tudpock18
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Date Joined Sep 2008
Total Posts : 4278
   Posted 3/7/2011 12:51 PM (GMT -6)   
Mel, I don't know anything about Dr. Hussein but does she specialize in prostates?  I guess if I was in your shoes I would strongly consider seeking out a top prostate oncologist before finally deciding on the next steps.
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 3/7/2011 12:52 PM (GMT -6)   
Old Sailor said...
... if HT is added and PSA is reduced, they would not know if SRT or HT caused the reduction. 


I don't get this comment.  Old Sailor, my reply has nothing to do with you personally or individually; I have heard this arguement before, and I simply don't get why it's relevant.  Can someone enlighten me?

Other than for academic reasons, who cares whether one has the ability to isolate which specific treatment had the larger affect in lowering PSA?  As the patient, you just want it down.  Once you go through the SRT routine, there is no going back and doing it again (you will have essentially reached the lifetime radiation limit for that part of the body), so that really doesn't matter.  The HT can continue.  Unless you are on a clinical trial studying the benefits of added or not added HT (to SRT), isn't the only real objective to the patient to lower the PSA?  I don't get why this question is relevant.

I do get the point that it is unclear whether HT (with SRT) is strongly beneficial or not.  That has more to do, I believe, with the fact that some men's cancer responds to HT and others simply do not resond to HT at all.  At this point, we simply do not know in advance who will and who will not respond.

So, the part I'm unclear on is why it is an issue to understand (for those who might do both) how much of a contribution to PSA reduction comes from SRT and how much from HT.  Why does it matter...?


Sleepless09
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Date Joined Jul 2009
Total Posts : 1267
   Posted 3/7/2011 12:56 PM (GMT -6)   
Hi Mel,

I certainly can't advise you on this, but as I too may someday follow in your footsteps, I can appreciate your agony. I wish you all the best --- that whatever treatment(s) you decide on do the job, works 100%, and your mind is 100% at ease with your choice when you make it.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

F8
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Date Joined Feb 2010
Total Posts : 3998
   Posted 3/7/2011 12:59 PM (GMT -6)   
what i'm seeing so far are guys who opted for only SRT but now need HT because SRT failed.  again, if there's a chance for a cure or durable remission i'm for hitting the disease with both barrels.
 
ed
 
 
age: 55
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

Old Sailor
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Date Joined Aug 2009
Total Posts : 209
   Posted 3/7/2011 1:00 PM (GMT -6)   
Casey, I can only tell you what the Doc told me.  The Old Sailor

Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 3/7/2011 1:03 PM (GMT -6)   
Old Sailor said...
Casey, I can only tell you what the Doc told me.  The Old Sailor

I know...I'm just struggling to understand "why" this is relevant to the patient.

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 3/7/2011 1:03 PM (GMT -6)   
Dr. Hussein is a well-regarded expert in prostate cancer. I think asking for her advice and doing whatever she suggests would be a pretty reasonable approach. Best wishes, Medved
Age 47. Father died of p ca.
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 3/7/2011 1:07 PM (GMT -6)   
Medved:
 
Even if she suggests HT, I will be very hesitant and might not do it.
 
(I know, then why ask her).
 
I just don't know yet.

Sonny3
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Date Joined Aug 2009
Total Posts : 2448
   Posted 3/7/2011 1:11 PM (GMT -6)   
I just located an extremely informative article on the PCRI website about Hormonal Therapy. I found it a very interesting read. The article was written by Snuffy Meyers, who is referenced and quoted here very often.

Dr. Meyers chose a very aggressive treatment path and in that path HT was the last of the options he utilized. Although it immediately followed each of the others, it was not done concurrently.

Even more enlightening was his discussion in this article of the role of optimism versus pessimism.

www.prostate-cancer.org/education/andeprv/Myers_HormonalTherapyDiet.html

Sonny

F8
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Date Joined Feb 2010
Total Posts : 3998
   Posted 3/7/2011 2:53 PM (GMT -6)   
Dr. Myer's cancer was stage four when he was diagnosed. Rudy Giuliani was diagnosed with prostate cancer about a year after Dr. Myers (2000) and he chose HT + BT + IMRT -- in that order -- and today he is cancer free. 
 
ed
age: 55
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/7/2011 2:56 PM (GMT -6)   
Mel,

Sounds like the great minds at "Ford" basically told you the same thing the one radiation oncologist locally told me, the story we talked about last night. The bottom line: I can't say for sure that you need the HT, and I can't be sure that it would help.

In my eyes, that's 2/3rds of a No answer.

I don't think you will find a comfortable consensus of professional opinion on the subject, so that you easily say, that's it, thats my answer.

It sucks to be at such a critical juncture, when the jury is really 50/50 on the subject.

Even now that my own SRT has failed, like Sonny's doc, I am being told to wait for now, before jumping into HT (even if I wanted to)

David

Post Edited (Purgatory) : 3/7/2011 12:59:10 PM (GMT-7)


Purgatory
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Date Joined Oct 2008
Total Posts : 25393
   Posted 3/7/2011 3:04 PM (GMT -6)   
Ed, in fairness, when any of us surgery guys chose surgery, we did not expect it to fail. But despite having a great surgeon, etc, it obviously does. Then when you have to make the SRT decision, you are looking at odds in the 20-50% chance of it even working, which sucks, but most of us still do it in hopes of being on the good side of those odds. Then that's it, folks, the end of the purely curative means.

Casey, again, not pretending to know more than a doctor or more than you, the but argument made to me by my own doctors about not combing HT with SRT, or jumping to HT immediately after SRT, had to do with the assumed risk, that at some point, you would become refractory to the HT. If used early, and it doesn't help, either on its own or with SRT, then its thought to save the HT till a much higher post-SRT failure level of 10-20. Doesn't seem to be any agreement on the actual number. HT is only going to slow down things for so long, so choosing when to use it, or use it and stop it for awhile, then restarting HT again, seems to be the educated guesswork of the doctor, along with the particulars of the patient.

David
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 2/11 1.24
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 9/10,

F8
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Date Joined Feb 2010
Total Posts : 3998
   Posted 3/7/2011 3:15 PM (GMT -6)   
Dave -- i don't disagree with you;  i just don't prefer the piecemeal approach which i'm pretty sure reduces the chances for a cure for guys with intermediate to advanced cases.
 
ed
age: 55
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 3/7/2011 3:19 PM (GMT -6)   
Purgatory said...

Casey, again, not pretending to know more than a doctor or more than you, the but argument made to me by my own doctors about not combing HT with SRT, or jumping to HT immediately after SRT, had to do with the assumed risk, that at some point, you would become refractory to the HT. If used early, and it doesn't help, either on its own or with SRT, then its thought to save the HT till a much higher post-SRT failure level of 10-20. Doesn't seem to be any agreement on the actual number. HT is only going to slow down things for so long, so choosing when to use it, or use it and stop it for awhile, then restarting HT again, seems to be the educated guesswork of the doctor, along with the particulars of the patient.

Thanks for the reply, but that's a completely different question than I was asking.
 
The question I raised is not the high-level question Mel is asking about whether it is "best" to combine HT with SRT or not...there are differences of opinion out there about that, and no one "right" answer appears to fit all situations (and not all situation are alike).
 
Rather, the question I raised is much more specific & detailed.  My question was prompted by Old Sailor relaying a comment from his doctor, and just within the past week or so someone else said the same thing (or maybe it was Old Sailor again...I don't recall who asked, but I remember the comment being raised here).  The comment was:
Old Sailor's doctor said that one rationale for not combining HT with SRT was that "...if HT is added and PSA is reduced, they would not know if SRT or HT caused the reduction."
My comment (from earlier in this thread) was:  "Who cares!?"  Given that we don't know how one individual person's PC will respond to HT, other than the academic question, for example, through participation in a clinical trial...it seems to me that the patient absolutely wouldn't care after the fact about which treatment mode caused the greatest reduction in PSA.
 
So, my comment was put out there for others....   What am I missing here?  I'm interested in learning why doctors are saying this "...we would not know" question.  I hope I explained it better this time.
 
Ideas?
 

MiraBeau
Regular Member


Date Joined Jan 2011
Total Posts : 42
   Posted 3/7/2011 3:27 PM (GMT -6)   
Mel

For what it's worth, and bear in mind, that I am very new to all this...

My husband is undergoing IMRT along with HT as a primary treatment right now, as he was not a candidate for surgery. He started on Cassodex in December, then had his first Lupron shot in January, about 2 wks. before his RT was to start (40 RT treatments), he was then told to discontinue taking the Cassodex. His doctor told him he would be on the Lupron for the next 3 yrs. He had his 25th RT today. So far just very minimal side effects.
Nocturia (x 3-5) being the worst. It has not interfered with his schedule at all, as yet. He goes to the gym 3-4 times a week, works 40+ hrs. per
week, and (since you're a fellow Michigander/Michiganian I think you'll appreciate this), keeping all the snow cleared! Since you will be doing SRT, side effects may, or may not, be the similar? Then again, every one reacts differently.

Let us know what Dr. Hussein says. I hope she gets back to you. I for one will be interested in her opinion. Wishing you all the best, no matter what your decision.

MiraBeau
58 yr. old husband dx with PC in Dec.2010
PSA 139.9
Gleason Score 9 (5+4)
Biopsy 12 of 12 cores positive, majority 100%
Stage T3a N0 M0
Treatment HT and IMRT

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/7/2011 3:31 PM (GMT -6)   
ed,

i see your point actually, but i guess from my point of view, i would rather be tortured in pieces with these invasive treatments, one at the time, instead of taking on all the side effects and QOL issues at one time. If my surgery had worked, wouldn't have needed SRT and all the damage it did, and if the SRT had worked, then I wouldn't need to think about HT in my future (and I am not). guess it just depends how one looks at it. i was in the "only use' what you actually need to get the desired results, so far, for me, that plan hasn't worked very well. in my case, i dont think it has anything to do with my treatment order, i believe it has to do with the agressiveness of my own particular cancer.

david
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 2/11 1.24
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 9/10,

142
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Date Joined Jan 2010
Total Posts : 7087
   Posted 3/7/2011 4:50 PM (GMT -6)   
Casey,
 
I am the one who brought up the doctor's concern of not knowing which of HT or adjuvant RT made the difference.
 
And the answer is, I care. The generally referenced side effects of HT would have left me unable to do my job, when combined with the time / side effect issues of RT. I could either do the whole thing, and lose my job, then go bankrupt to write off the costs (oops, if I lost my job while they were going on, maybe would have to pull the plug, stop early?), or do RT alone.
 
Since the doctors were not insisting, and could not give me any justification more than "it might help, but the RT is the important part", I decided not to take the risks. After the fact, with the issues I had / still have with RT, the choice was correct.
 
If I still have to do HT, the question will arise again, but I hope that's a few years down the road.

goodlife
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Date Joined May 2009
Total Posts : 2692
   Posted 3/7/2011 5:29 PM (GMT -6)   
Mel,

I am probably 4 to 6 weeks behind you.

I have decided no HT for many of the reasons mentioned here. Probably if you took a poll, it appears it would be almost a split decision.

I don't believe many of the " experts" view HT as curative. I understand the rationale that it may allow some cells to die off by starving it for food. But in my mind, unless we can kill off 100 % of the cells, it is only a delaying treatment.

I am saving it for the bitter end. I am hopeful to get a few years out of the RT, which I am insisting be WPRT to increase my odds a little.

Of course I am not suggesting that you or anyone do what I am doing, just letting you know you aren't the only guy out here making this decision. In my view, whether we do HT now or later will have little impact on the ultimate success or failure of our war on PC.

I really have found this to be more of a mental battle for me.
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

Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 3/7/2011 5:33 PM (GMT -6)   

142, thanks for replying.

I understand your comment about one's strong desire BEFORE a the decision & treatment (of either SRT or SRT+HT) to know whether the HT will also "work" for you...but one never knows this for sure.  To this comment, I would say "Yeah, it absolutely would be nice to know in advance."

 

Perhaps I simply misunderstood what Old Sailor was saying when he wrote "...if HT is added and PSA is reduced, they would not know if SRT or HT caused the reduction."  The way Old Sailor worded it, this appeared to be a question in the rear-view mirror, AFTER treatment, for someone who elected for SRT+HT as to whether, in the end, the HT was really needed or not.

My point was simply that AFTER treatment, once one elects to do SRT+HT, it really doesn't matter "whether SRT or HT caused the reduction," as long as one gets a reduction.  That question appears to me to be academic.

 

[BTW, just for clairty, I am absolutely not advocating one option (SRT or SRT+HT) over the other; BCR cases are too different to generalize.]

 

Thanks again.  Just trying to see if there is something new for me to learn here...but it's possible that I simply mis-interpreted the quote, above.  thanks

Post Edited (Casey59) : 3/7/2011 3:38:15 PM (GMT-7)


compiler
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Date Joined Nov 2009
Total Posts : 7270
   Posted 3/7/2011 9:33 PM (GMT -6)   
Goodlife:
 
What does WPRT mean?
 
Have you decided to do RT?
 
It seems you are doing very well PSA-wise.
 
My PSA is skyrocketing (doubling time of 2 months) so things are much more tense here.
 
But I tend to agree with you regarding HT/SRT.
 
I should hear from Umich tomorrow.
 
Mel

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/7/2011 10:14 PM (GMT -6)   
mel, it stumped me too, not sure what the WPRT meant either. Perhaps we will get an explanation on that one.
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 2/11 1.24
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 9/10,

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 3/7/2011 10:23 PM (GMT -6)   
Mel,

Actually Tony threw the term out last week. I believe it stands for wide field pelvic RT. In other words, getting the lymph nodes as well. Snuffy Myers is an advocate for it.

My PSA has gone to .02 in 2 months, and I am watching it carefully. I doing it before it hits .05 with my Gleason 9. I am hopeful that it is still in the prostate bed and/or pelvic region yet. I didn't do adjuvent because of incontinence , even tho Dr. Hussein recommended it. So I am jumping early.

Goodlife

Post Edited (goodlife) : 3/7/2011 8:30:10 PM (GMT-7)

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