When to pass on SRT

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BB_Fan
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Date Joined Jan 2010
Total Posts : 977
   Posted 6/9/2012 3:59 PM (GMT -6)   
Newspaperlover, seems like we have nearly the same stats and have approached treatrnent in the same aggressive manner. I am almost 12 months post end of ADT3 and all things are good so far. Your in upstate NY? Will you be able to make it to Rockchester in Sept?
Dx Dec 2008 at 56, PSA 3.4
Biopsy: T1c, Geason 7 (3+4)
Robotic RP March 2009
Path Report: T2c, G8, organ confined, neg margins, lymph nodes - tumor vol 9%
PSA's < .01, .01, .07, .28, .50. ADT 3 5/10. IMRT 7/10.
PSA's post HT/SRT .01, < .01
End ADT3 5/11
PSA 10/11 < .01, T 103
PSA 1/12 < .01, T 214
PSA 4/12 < .01, T 288

Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 539
   Posted 6/9/2012 10:05 PM (GMT -6)   
Here are some research studies regarding concurrent HT with SRT (called neoadjuvant hormone therapy salvage radiation therapy by some):

http://www.europeanurology.com/article/S1569-9056%2807%2900218-7/fulltext
http://www.redjournal.org/article/S0360-3016%2811%2903455-9/abstract
http://prostatecancerinfolink.net/2011/03/25/6-months-of-neoadjuvant-adt-doubles-survival-when-given-with-radiation-therapy/
http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confid=104&abstractid=72226


Sorry, you may have to copy/paste these links as I don't know how to make them live.

David, you should be able to find some hard numbers among these articles.
Jeff

Post Edited (Im_Patient) : 6/9/2012 10:08:32 PM (GMT-6)


Startech
Veteran Member


Date Joined Jun 2011
Total Posts : 979
   Posted 6/10/2012 12:00 PM (GMT -6)   
Bookmarked this thread for future reference if needed since I decided against ART. Best wishes to you all during our journeys.
enlarged prostate at age 25-dx'd 51
3/2000 psa=.08
4/2002 psa = 1.4
4/2011 psa= 49.2
5/2011 Prostate Biopsy-3 of 12 cores Positive
Gleason 4+4=8
T2c n0m0
Bone&CT=neg
MRI-1 nerve bundle involved
open RRP 8/5/11,home 8/6/11,cath out 8/16/11
Post Op Path
71g-1 NERVE spared
Gleason upgraded 5+4=9
13 lymph nodes,SVI neg
Margin-indeterminate,PNI-pos
pT3aN0Mx
PSA <0.1 as of 3/2012

MsWorryWart
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Date Joined Aug 2011
Total Posts : 1354
   Posted 6/10/2012 8:47 PM (GMT -6)   
Purg,

Did anyone at MDA suggest that HT was not beneficial with radiation therapy? I'm curious since MDA in Texas is most adamant about HT along with Radiation. However, since this is my husband's primary source of consolidation, I was wondering if that made a difference in their decision?

For obvious reasons, I would love to learn more about HT masking the results of radiation.

Thanks!

PS.. We passed on surgery because we knew SRT was immediately in the cards.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2621
   Posted 6/10/2012 9:05 PM (GMT -6)   
Well, the masking comment is really straightforward. When one is on HT, the PSA generally drops to undetectable, because the testosterone is eliiminated, which is the primary food source for the PCa.

When one has radiation, if the radiation is successful, we also expect a drop in PSA, hopefully to undetectable. So if we do both things at once, we cannot tell if the radiation was successful, because the HT most likely caused the PSA to drop. Not until the HT is stopped for several months do we know if the radiation did the job.

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3256
   Posted 6/10/2012 9:33 PM (GMT -6)   
Well, the masking comment is really straightforward.

so what's the difference of knowing now or in six months especially when the addition of HT is a superior treatment?  if you are medium to high risk is it better to know sooner or is is better to go with the superior treatment? 
 
and does HT really "mask" PSA?
 
BTW, these are rhetorical questions because i already know what i believe cool .
 
ed
 
 
age: 57
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
6/8/11 PSA .2, T = 540 ng/dl
8/19/11 PSA .3, T = 487 ng/dl
10/5/11 PSA .2, T = 530 ng/dl
3/1/12 PSA .3

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24302
   Posted 6/10/2012 9:45 PM (GMT -6)   
goodlife, your answer pretty well mirrors the opinion of 2 of the 2 radiation oncologists I spoke with, and mirrors the opinion of my current oncologist.

msworry, my radiation oncologist and the other two I met with, were not associated with MDA, so can't answer your thoughts there. my current oncologist is directly associated with MDA.

david
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 539
   Posted 6/10/2012 11:16 PM (GMT -6)   
I guess my point is - if the HT helps, it should be a lot more important to get it to help the RT, even if it takes you longer to find out that it worked. The subject usually doesn't want to perform an experiment, he wants to be cured!
Jeff
Gleason,3+4;PSA 9.8,Nerve-sparing RRP,03/2008(Age 48 then),pT2c, 60g, neg margins; perineural & lymphatic invasion;3 lymph nodes removed,clear; seminal vesicle invasion:absent;Gleason 4 was 5-10%; PSA <0.1 until Oct 09:0.1; retest <0.1; scans clear;monthly results from Jan 2010:0.2,.2,.17,.17,.24,.31,.29,.41, IGRT SRT started 8/4/2010, PSA@5 weeks in: .17,after:.12,.10,.06, .05 since

Riviere
Regular Member


Date Joined Jul 2011
Total Posts : 324
   Posted 6/11/2012 7:51 AM (GMT -6)   
LM,

Thanks for posting the links to research on HT and RT. When I contemplated ART a year ago, I did considerable study, and at that time research had shown pretty conclusively that HT has a synergistic effect with RT, making it more effective. I have in previous posts linked papers supporting this practice as well. I have since continued to look at PubMed to keep up on the latest studies. Support for combined HT and RT has not waned.

[Removed comments that I regret making to Purgatory.]

I wish you the best.

Nellie

Post Edited (Riviere) : 6/12/2012 11:34:49 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24302
   Posted 6/11/2012 8:37 AM (GMT -6)   
Nellie,

Then you aren't reading closely what I write about RT or SRT. Other than my own horrific experiences, twice with RT, I still state that it's a viable treatment method, and that men shouldn't avoiid it because of what happened to me (and trust me, I am not alone). I have no bias against RT, in fact, considering I am a "surgery guy", I often reccomend to new men with Gleason 6 cases, to consider the use of RT seeds. I do, however, feel that what happened with men, is not ultra rare, and men should not go into any type of RT blindly. RT is serious business with its own set of serious risks, these need to be considered and factored into any treatment decision.

David in SC
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

brookpe
Regular Member


Date Joined Jun 2012
Total Posts : 24
   Posted 6/11/2012 1:56 PM (GMT -6)   
Thanks for the thread and I am in the zone now.

I read one page about how radiation works and it seems that cancer cells are distinguished from ordinary cells by the fact that they are dividing.

My question to the RO and the URO was- " since radiation is the big gun and curative, why do you want me to take something that suppresses the lone identifying characteristic of cancer cells during the 8 week radiation period in exchange for that which is not a cure and can be done anytime. I want those cancer cells standing tall during the radiation so we can cut them down".

The answer was generally- "we don't really understand how it works blah blah...."

I have a post surgery PSA of 0.11 so if that cancer is local to the radiation it seems it would be minimal and is probably dead already (after 6 sessions)... they wanted to give me the lupron shot 2 weeks before my radiation started-I went for the day after. I really think the Sloan Kettering educated RO I have thinks that the Lupron kills metastatic in remote locations, or slows it down enough to essentially kill it, but he can't say so... I have to ask the questions that would bring you to that conclusion if you listen to him. You can tell he's bright as hell.

I told the URO- " I'm afraid if that cancer is lined up for the raygun you are going to put it to sleep with this lupron shot and then after I go off the lupron the cancer will come back alive and this whole thing was bass ackwards because of one study you guys apply to everything. You have 2 hammers and all you see are nails."

Being an engineer, stuff has to make sense first.

Great forum and tremendous comfort to me.

Jim
dx 49 7/2011 PSA 11.7
BIO 8 pf 12 cores G 4+3
DaVin 10/06/2011
T2c 4+3 PNI yes SVI no

Date delta T PSA

11/09/11 34 .05
02/08/12 125 .08
03/08/12 154 .08
05/15/12 222 .11
05/23/12 230 .12

SRT 70 grays 06/04/12
HT 30 day Lupron 06/05/12

Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 539
   Posted 6/11/2012 2:55 PM (GMT -6)   
Jim, welcome to the forum.
I'm an engineer as well, and usually feel the need to get comfortable that I understand the process I am being recommended.

Regarding how radiation works, just one correction: cancer cells are distinguished from ordinary cells by the fact that they are dividing at a faster pace than normal cells. My understanding is that the radiation essentially kills cells that try to divide, after recently being irradiated and put in a state of damage from ionization. Healthy cells are less likely to be in that damaged state when they divide, and thus have a better chance of coming through without being killed. I am sure that this is an over-simplified description of the process, but it satisfied my engineer's curiosity.

I am not going to try to defend HT in concert with RT, as I have no idea how that might work, aside from saying that HT does not "cure" the cancer - it is still present but not in as aggressive a form as long as it is not castrate-resistant yet. It just appears that the research is supporting that HT helps RT. I would probably insist on a better understanding of HT in general before I tried it out in any context.

To defend David a bit - when I was deliberating about choosing SRT, David was advocating it sooner than later in my case, a couple of years ago.
Jeff
Gleason,3+4;PSA 9.8,Nerve-sparing RRP,03/2008(Age 48 then),pT2c, 60g, neg margins; perineural & lymphatic invasion;3 lymph nodes removed,clear; seminal vesicle invasion:absent;Gleason 4 was 5-10%; PSA <0.1 until Oct 09:0.1; retest <0.1; scans clear;monthly results from Jan 2010:0.2,.2,.17,.17,.24,.31,.29,.41, IGRT SRT started 8/4/2010, PSA@5 weeks in: .17,after:.12,.10,.06, .05 since

brookpe
Regular Member


Date Joined Jun 2012
Total Posts : 24
   Posted 6/11/2012 3:34 PM (GMT -6)   
Jeff-

Thanks for the response and clarification regarding how radiation works.

Like the trend in your PSA following SRT. Sure would make one suspect that your cancer was in the nuke zone.

That 0.1 PSA following your surgery report must have been a shock.

BB's case sucks with a 3.4 PSA and 9% tumor involvement- what a freakin crap shoot this stuff can be.

Best

Jim
dx 49 7/2011 PSA 11.7
BIO 8 pf 12 cores G 4+3
DaVin 10/06/2011
T2c 4+3 PNI yes SVI no

Date delta T PSA

11/09/11 34 .05
02/08/12 125 .08
03/08/12 154 .08
05/15/12 222 .11
05/23/12 230 .11

SRT 70 grays 06/04/12
HT 30 day Lupron 06/05/12

Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 539
   Posted 6/11/2012 10:18 PM (GMT -6)   
Jim, that PSA rise was sure a shock, as you know from having gone through it. Let's hope you get a good drop when your RT finishes (and stays that way after the HT is through).

Too much of it is a crap shoot - the RO still only gave me a 50% likelihood of no recurrence in my lifetime. So after surgery and RT, I still am stuck with the gray cloud over my head for the long haul. Gives you a new perspective - every day is a blessing.
Jeff
Gleason,3+4;PSA 9.8,Nerve-sparing RRP,03/2008(Age 48 then),pT2c, 60g, neg margins; perineural & lymphatic invasion;3 lymph nodes removed,clear; seminal vesicle invasion:absent;Gleason 4 was 5-10%; PSA <0.1 until Oct 09:0.1; retest <0.1; scans clear;monthly results from Jan 2010:0.2,.2,.17,.17,.24,.31,.29,.41, IGRT SRT started 8/4/2010, PSA@5 weeks in: .17,after:.12,.10,.06, .05 since

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24302
   Posted 6/11/2012 11:50 PM (GMT -6)   
brook,

welcome here, appreciate your comments and opinion as well.

prior to my decision to undergo SRT with a rising PSA of .16, one of the RO's i sat down with, was pushing for the HT alongside with the SRT. being that i was not hip to wanting to deal with HT, i tried to get him to prove his point. he showed me a well worn 2 page printout, which i quickly read. then when i pushed him, he freely admitted, that he couldn't prove that i needed HT, and he couldn't prove that it would help me. so it wasn't a very convincing argument to me, so i passed on him. interestingly, the other 2 RO's I met with (all three were in the same practice in the same building), strongly agreed that they not reccomend using HT at the same time as SRT. They did not want the masking effect of the HT to interfere with the SRT, and as you suggested above, you could always do the HT later if the SRT failed. That made more sense to me at the time, and still does.

It's all a mute point with me, the SRT failed within 9 months of completion, and I am now dealing with a fast rising PSA that was at 37.x as of April of this year. Sure wasn't worth it to me.

david in sc
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

brookpe
Regular Member


Date Joined Jun 2012
Total Posts : 24
   Posted 6/12/2012 8:07 AM (GMT -6)   
Purg-

Thanks for that-- at least I know I'm not crazy, someone else has wondered about the same.

Have a decision to make about that next Lupron shot July 3rd, whether to take it or maybe to delay to early August or September.

Probably splitting hairs and trying to make decisions that can't be made, but I've had to make a living making those type of decisions.

Having read your story, I truly admire your courage.

Are you going to do the ADT?

Jim
dx 49 7/2011 PSA 11.7
BIO 8 pf 12 cores G 4+3
DaVin 10/06/2011
T2c 4+3 PNI yes SVI no

Date delta T PSA

11/09/11 34 .05
02/08/12 125 .08
03/08/12 154 .08
05/15/12 222 .11
05/23/12 230 .11

SRT 70 grays 06/04/12
HT 30 day Lupron 06/05/12

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4453
   Posted 6/12/2012 8:36 AM (GMT -6)   
brookpe, welcome to the Forum and I hope your current treatment plan works for you, so you never have to think about this stuff again. smilewinkgrin
James C, 65, A Better Man, Injections? Read This
4/07: PSA 7.6, 3/16 PCa, 5% inv, lf. lobe, GS6
9/07: open RP, Path: pT2c, 110 gms., Prob. micro.inv.-left apical margin -GS6
4 Yrs: .04 'til 4/10-.06, 12/10-.09, 5/11-.08, 9/11-.14, 2/12-.10

Riviere
Regular Member


Date Joined Jul 2011
Total Posts : 324
   Posted 6/12/2012 8:39 AM (GMT -6)   
Hey David,

As always, I wish you well. It's great to have someone who knows the other side and can provide a counterpoint to the optimism of some radiation oncologists. My earlier comments, which I've deleted from my post, were not called for, and I apologize.

I had to laugh at myself this morning. I'm clearly still processing my newly discovered lymphedema, which resulted from whole-pelvic radiation. While it pales in comparison to what you and others have gone through, it was an unpleasant surprise and somewhat of a damper on my enthusiasm for RT. Of course, it's somewhat uncommon, and given my stats, the RT was still worth it. But for many, it would be another reason to reconsider RT.

Best wishes,
Nellie

Post Edited (Riviere) : 6/12/2012 11:37:52 AM (GMT-6)


reachout
Veteran Member


Date Joined May 2009
Total Posts : 583
   Posted 6/12/2012 8:57 AM (GMT -6)   
David

I'm sure you've mentioned this more than once in your many posts, but for the sake of those of us without the best memory, can you address the following.

You had a horrendous experience with SRT and, as I recall, you were cognizant during SRT that something wasn't right, yet your RO was giving you the brush off (as I recall). So, thinking back your experience, when and how did you know that something wasn't right? In other words, for those of us contemplating SRT, what advice could you give us that if we feel a certain way, at a certain point, it's probably more than the usual side effects and we should have a serious talk with our doctors?
TIA
Age: 66
PSA: bounced around from 2.6 to 5.6 over 2 years
Biopsy 8 of 12 +, G 3+4, T2a
DaVinci 9/09, path G 4+3, - M, NX, MX, T2c
Continent right away
ED pills did't work, Trimix works well
Post-surgery PSA:
12/09 <0.1
4/10 <0.014
6/10, 9/10, 12/10 <0.1
4/11, 5/11, 9/11 all .05
12/11 .06, 3/12 0.13!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24302
   Posted 6/12/2012 9:22 AM (GMT -6)   
Reachout,

You ask a most important question, one that needs to be answered properly.

To be honest, I was suspicious the first time with my RO right after she had developed my radiation plan (as they like to call it). She knew that I would have a suprapubic catheter in place during the entire duration of the radiation. She was in agreement with my Uro, since I had a long track record of difficult stricture issues, and knowing that radiation can cause swelling and create even more strictures. I knew from m own research, and from following the SRT journeys of many others, that the normal standard of care was to have a full bladder before each treatment.

So after she told me the "plan", I asked the right question. "How am I going to have a full bladder with this catheter in place?"
(Obviously, with the catheter, my bladder was constantly being drained as soon as any urine entered it). The RO looked at me, and said "Don't worry, I got that covered." I thought about that a second, and I said, "What do you mean, you got it covered?" She seemed aggervated, and simply answered, "I have taken that into account".

This didn't sit well with me, didnt' sound right. Based on the troubles and side effects I had endured with neck and throat major radiation 8 years prior, it made me nervous and worried. But in the end, I felt I had to trust her judgement, as she was the doctor, she was the expert, and I was the patient. So I entered a trust relationship with her decision.

Now, when the radiation began, the first 3 treatments went by without anything unsual happening. On the particular IMRT machine I was on, it indexed its position 6 times to complete one "zapping" session.

It all began to go wrong on the 4th day of treatment. As soon as the machine hit and delivered the radiation on the 5th positiion, I immediatley began to feel a deep burning deep inside me. From the laying down posiition I was in, it felt like it was coming right inside my bladder. It was an internal pain, but distinctly a burning feeling.

I reported it to the machine techs, and they said, "You cant feel anything, but report it to the doctor next time you see her."

On the 5th treatment (it was Friday now), the same thing happened, but it burned deeper and longer. It was uncomfortable lifting back off the table.

That very next Monday, I told the RO when we had our weekly check up session. I could tell she didn't believe a word of it. But I insisted. I even suggested that perhaps it was because of "scattering". That seemed to annoy her, and she said that with IMRT , there really isn't any "scattering" of radiation.

So to make a long story short, as I went through each and every treatment after that, the burning got worse and worse. It was unbearable at times, and it reached the point, that the techs had to lift me up to a seating posiition, and help me off the table. It would be all I could do to limp back to my car. At its worse, it would take 2-4 hours for the pain to subside that evening. Needless to say, I was really afraid to go back each day, as I knew I would be burned again, but felt like I had to tough it out.

Yes, each week, I would tell the RO, and she would take note. Not until week 7, I believe, after much complaints to my Uro (who thought something terrible was happening), my Uro called the RO, and asked her "What are you doing to my patient? He's complaining about a lot of burning pain from the radiation". It was only then, that she admitted to the Uro, that perhaps there was some scattering going on. But she never stopped the treatments, or dug into why I was being burne.

In hind sight (and I am not responsible for what happened to me), I should have made her stop the treatments after perhaps the 2nd time I got burned. I knew something was wrong. Perhaps having the catheter in place was making some kind of "microwave efffect" - you know, heating up the tube inside me (just guessing), or in the back of mind, knowing that I was getting a strong jolt of radiation (70.2 gys total) on a completely dry bladder.

The doctor should have stopped the treatments to investigate, instead of pushing off my complaints. There shouldn't be any pain during radiation, and if there is, why? I took the pain and discomfort, because I was being complaint in this doctor-patient relationship. Plus, I knew you couldn't abort the radiation mid-stream, and be able to resume it safely later (so I was told).

I still feel radiation is a very good tool in fighting cancer. I am not against it. But all 3 radiation doctors I talked to this time around, really downplayed the dangers and side effect potential. And the RO I had back in 2000, with the neck and throat, never even discussed the danger I was facing while undergoing a large amount of "old school" pre-IMRT radiation. I was clueless of what I was about to undertake.

When this RO told me not to worry about it (the lack of a full bladder), I should have trust my gut feeling and walked away, until she could convince me that I would be safe, that is the biggest mistake I made, but again, I wasn't the doctor here.

David
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

reachout
Veteran Member


Date Joined May 2009
Total Posts : 583
   Posted 6/12/2012 11:32 AM (GMT -6)   
Thanks so much, David, that's a gut wrenching story, and a great help as red flags for those who may go through radiation. I hope you didn't have too much agony in remembering what you went through.

I can well understand your dilemma as you found yourself feeling that something was seriously wrong, yet having to trust the doctor in whose hands you placed yourself. That initial brush off about the full bladder, like you said, was a red flag, though I doubt if many of us would push it at that point. The key thing I get from your story was the intense burning pain, you say the techs even had to help you up. That really is well outside the range of what most experience. Shame on your RO for not stopping right then and there and doing a complete check of the setup.

Most of us do thorough research before we make a decision for any type of treatment. But once the decision is made, including our choice of doctor, it's very difficult to stop treatment, especially with radiation which is composed of a long series of treatments.

If I do need SRT, and I suspect I will, I'll be much better armed by the knowledge of what you went through. Thanks again.
Age: 66
PSA: bounced around from 2.6 to 5.6 over 2 years
Biopsy 8 of 12 +, G 3+4, T2a
DaVinci 9/09, path G 4+3, - M, NX, MX, T2c
Continent right away
ED pills did't work, Trimix works well
Post-surgery PSA:
12/09 <0.1
4/10 <0.014
6/10, 9/10, 12/10 <0.1
4/11, 5/11, 9/11 all .05
12/11 .06, 3/12 0.13!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24302
   Posted 6/12/2012 11:52 AM (GMT -6)   
reachout,

from that perspective, i hope i have educate you a little bit. if you eventually need SRT, make sure you really need it. don't jump on it at the first sign of a rise, this is the mistake my current oncologist says many men make. of course, any radiation clinic is going to push for it, all kidding aside, its a big money maker for them. second, make sure they spend the time to answer all your questions, make them explain in graphic detail if needed, what the risks for you are really all about. most men here, i haven noticed over the years, have asked about short term effects, but few push for the long term risks and potential damages. my case may be rare here at HW, but never forget, all of us together, don't make up but a few grains of salt in a very full salt shaker. both my uro/surgeon and my oncologist (combined, they have 60 years of experience), tell me that severe radiation damage is not that uncommon, and both have told me horror stories that make what happened to me look pale in comparisom.

while i don't push any one particular primary treatment over the over, because there are too many factors involved, and you would have to know a patient's full medical history for starters, i still like the idea in most case, of having surgery first (the risks there are more known), and then, and only then, have radiation as in a salvage situation if needed. once you have been damaged by radiation, there is no fix in the normal sense of the word.

but on a positive note, if you (or anyone else) needs radiation to try for a cure, then i think they should go for it, if their numbers and health dictate it. just realize, there are real risks of potential damage. as you know, i am in the the ultra rare club of Zero ED, despite having a total of 8 PC related operations and 2 months of radiation. My doctors feel its simply the luck of the draw, or at least a miracle. But radiation can effect that long after it ends, so I will not be surprised, if one day I start to "lose it" down there. Right now, I in my 45th month of my PC journey, and still having 100% normal pre-PC sex. For that, I am thankful.

Good luck, as you contemplate your next move, if needed.

David
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 5248
   Posted 6/12/2012 11:54 AM (GMT -6)   
Let me follow up on David's story with my own, as we both got the RO brushoff. I was told to drink a lot of water. They were never specific when and how much, just that I come in with a full bladder. By my 4th tx., I too was experiencing a miserable burning sensation. It was brushed off. What I was doing was downing a jug of water, finishing it just before I hit the table.
 
After reflection, I started thinking that maybe the water had not reached my bladder yet. So around the 7th time, I started drinking maybe 20 minutes before getting on the table. Bottom line: complete reversal. No burning.
 
I did berate the technicians and the RO for not conveying that simple adjustment. The technicians were great but the RO was pleased but I could tell couldn't care less.
 
Mel

Riviere
Regular Member


Date Joined Jul 2011
Total Posts : 324
   Posted 6/12/2012 12:44 PM (GMT -6)   
David and Mel,

My experience was the opposite. Before each session the techs took a CAT scan and made sure my bladder was full and my rectum empty. After one of the first few sessions, the tech told me that I had to have an empty rectum before I came in again. This should be part of any RT treatment regimen that uses machines that combine CAT scan and RT. Something to look for when choosing your radiation oncologist.

Funny thing is, instead of making me have runs, RT gave me slight constipation, so the tech's orders proved a daily hassle.

Nellie

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2621
   Posted 6/12/2012 1:15 PM (GMT -6)   
As a Gleason 9, I have developed kind of a different thought process on this whole question of SRT.

I have conclude that I will never be cancer free. This G9 is so aggressive that it only takes a couple cells, and eventually, it will return.

Because of a good surgeon, I bought 3 years of low cancer time. Numbers were good until about 18 months, and ever so slowly started to rise. It is undeniable to me, that even at a .06, the graph unmistakably shows a rise constituting BCR.

So my next step will be SRT. Hopefully, I can buy another 2 or 3 years of high QOL, and wait for it to rear its head again. Maybe I will get nothing, but at a 20 to 30 % chance of success, it is better odds than any lottery or casino, and a lot higher stakes.

The HT or chemo if it keeps on developing, will be next. Hopefully with each step, I can buy another 2 or 3 good years.

By then, I will have wearied from this silly game, and start thinking of the easiest way to the final step.

Just my own ideas, and plan. Makes me feel in control, even tho I'm not.

Goodlife
Goodlife


Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9 Da Vinci, Cleveland Clinic 4/14/09 0/23 lymph nodes involved pT3a NO MX,
Neg Margins, blad. neck. PSA 6 wk,<.03, 3 mo. <.01 (dif lab), 5 mo. <.03 , 6 mo. <.01, No pads, 1/1/10, 9 mo. < .01, 1 year .01, 15 mo. <.01, 18 mo. .01, 21 mo. .02, 24 mo. .03, 27 mo. .02 , 30 mo .02, 33 mo .04, 36 mo. .06.
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