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Posted 11/14/2012 2:27 AM (GMT 0)
So, I've been going along for a few months with the idea that I would have IGRT/IMRT starting at the end of November (already have it scheduled). This was recommended to me by 3 docs, my regular oncologist, the RO, and my uro based on the fact that I had Gleason 8 (plus some Gleason 5 in my post-op biopsy). Also, my PSA started to creep up again after going down to .02 (last was .06).

Today I was listening to NPR and they aired a talk by Dr. Otis Brawley, executive VP at the American Cancer Institute. It froze me in my tracks when he started talking about PCa and then IMRT and how it basically uses a shotgun approach by zapping the prostate bed when they really don't even know where the cancer cells may be. Then he mentioned one poor guy who was left with a double bag because of the RT.

Now I'm wondering if RT is even worth it. So, I'm asking myself whether it will buy me anything or if it will leave me debilitated and whether it's worth the risk. I've recently recovered my bladder function (no pads) and will be starting Trimix in a few days and feel like my life is getting back to normal.

Dr. Brawley wasn't necessarily knocking RT, just the fact that so many docs blindly use it without telling patients what the risks are and whether it actually gets the cancer.

I have an appointment scheduled with my oncologist on Monday, and will ask her for a reality check, but I'd love get some feedback from anyone who's gone through RT and/or decided not to. I have a tough decision to make.

Thanks,
Ted
Posted 11/14/2012 4:32 AM (GMT 0)
Ted,

I won't, in fact can't argue with what the doctor said. I can only tell my reasoning for proceeding.

RT is in fact the only curative treatment option left for you. Numerous studies show that there is around a 25 to as much as 50 percent chance that it will in fact allow you 5 to 10 years of cancer free living. All other treatments such as HT or chemo are palliative in nature. They can reduce your PSA and keep the PC under control, but will not eradicate it.

Yes there are side effects, but for me it was worth the risk for the chance at a cure. As you well know, surgery carries a lot of risks as well, but I took those too.

If there are PC cells that have escaped the prostate, it is generally believed that they stay close to the food source, testosterone. The prostate bed still has some of that left after the prostate is removed.

It was my belief, that as soon I could identify that BCR had occurred, the sooner I attempted to radiate the little buggers, the better chance I had of catching them before they moved on. Stephenson has some studies that confirm my thoughts.

So, once my PSA reached .06, 3 years post RP, I did the IGRT. 60 days after completion, my PSA has dropped to .03, so I got a lot of them. Probably won't know for 3 or 4 months if I got all of it.

Side effects were minimal, never missed a day of work, never felt bad, and I am continuing to live the good life.

Good luck to you. With a Gleason 8, you really do need to hit it hard. Some do RT and HT at same time. There are some studies that show the combo approach gives even better results.
Posted 11/14/2012 4:53 AM (GMT 0)
Ted, I would echo all that goodlife said. For me, I had negative margins (meaning they believed that they got all of the cancer with the surgery). I had BCR, and it was clearly explained to me that they were irradiating the prostate bed, although they had no evidence that the cancer had spilled out past the prostate. It was possible that it had moved elsewhere in my body, in which case the radiation would do no good. However, my PSA went down immediately after the radiation and has stayed at a stable point below 0.1 since. It is your one shot at a cure. Your choice - it is not a sure thing. For me, it was worth the risk and so far it has paid off (2 years+). The pathology reports are apparently not always as accurate as they would have you believe.

I wish you well with your decision and treatment.
Jeff
Posted 11/14/2012 6:38 AM (GMT 0)
Hi, Ted

Just want to check with you on a discrepancy in your data. In the message body you say you're at .06 but in the footer it says 0.6. Which is it? It makes a big difference. I havent faced your decision yet but may in the next year or two.

Post Edited (proscapt) : 11/14/2012 11:49:17 PM (GMT-7)

Posted 11/14/2012 7:06 AM (GMT 0)
Ted,

I am the perfect example of what can go wrong with RT or SRT. I had one tiny positive margin. After surgery, my PSA was never below .05. It quicly rose. 9 months later, i had SRT, it was not administered correctly, and my bladder and bladder neck were burned into oblivion. I ended up on a catheter for a year, then had major bladder by-pass surgery ,and I will be peeing into a plastic bag from a hole in my side for life. On top of the that, the radiation failed to remotely stop my cancer. I now have advanced prostate cancer with a fast climbing PSA (most recent: 40.4).

I agree with what you heard, RT or SRT is a crap shot after surgery. I was only given a 20% chance of it working to start with. The best estimates I hear are 40%. For the most part, the RO's are guessing and hoping the cancer is still in the prostate bed. Often it isn't, and a person goes through radiation and the risks of short term and long term side effects and damages for nothing. For some men, it does work.

In such cases, the RO's really really don't know where the cancer is, so its a calculated risk on a good day.

If your PSA, despite your other stats, is truly .06 (not .60), I don't feel you have recurrance, so why go through all that, and the associated risks when you might not even need a secondary treatment at this time.

Just something to think about. Certainly not telling you what to do, or to discount your own doctor's advice.

david
Posted 11/14/2012 7:44 AM (GMT 0)
Hi Ted,
Please note that I'm not giving you any advice, but only my own history because I too am a T3a guy.
I had RRP in 2006, but my PSA started to creep up about 2 years later. When it reached 0.1, I opted for SRT (my only chance for a cure). The SRT was completed late in 2008 (33 days/66 gy). My PSA has been <.04 ever since and I'm feeling ok. My 4 year PSA test is coming up next month and I'm hoping for another good result.
Wishing you the best of luck in your journey.
Mag
Posted 11/14/2012 8:09 AM (GMT 0)
When I was told I needed SRT I asked if they knew whether the cells that were making the PSA were in the prostate bed (ie the intended target area), or if they could tell if it was one large clump of cells or say a hundred small clumps. They said they had no idea for certain where the bad cells were, and that basically the SRT was going to be used to find out, ie as a diagnostioc tool. If they targetted the prostate bed and the PSA went down then that would indicate that the cancer had been in the prostate bed. (Thus they did not give me HT at the same time as SRT so that there would be no effect on the PSA from the HT) But they were optimistic because as I had had seminal vesicle invasion there was a good chance that there might be other cancer cells close to where the prostate had been.
Not long after my SRT my PSA was undetectable, so, for me, the method worked.
I am more than 2 years on from SRT and my PSA is still undetectable. Yes I had side effects from the SRT, but I am coping okay.

One of my brothers-in-law had RT as his primary treatment as lumps felt during a DRE etc showed that the PCa had already gone beyond the gland. That was over ten years ago. I think his PSA is around 5 these days and he has ED side effects, but he is nearly 80, which is better than his father who died from PCa aged 65.

Trouble is I still can't really offer you advice about what to choose.

I was also wondering if you have had any scans to check for mets etc?

Alf
Posted 11/14/2012 11:36 AM (GMT 0)
In your situation Dr Brawley would probably have the SRT.  His doctors would provide the compelling case for a chance of the cure and point out how rare the problems actually are.   What he generalizes about in public and how he would pursue treatment for himself could be entirely different.
Posted 11/14/2012 4:12 PM (GMT 0)
Thanks for all your views and suggestions, guys.

First of all, I gave a wrong figure for my PSA (wishful thinking?). At last count, it was 0.6, not .06. The numbers in my sig lines are correct. PSA is 0.6, up from 0.2.

I suppose I had an initial reaction after hearing Dr. Brawley talk about potential complications with RT. I had it in the back of my mind that there could be problems, but his comments brought whatever fears I had to the fore.

Purg, I hear you, and do feel for your situation. You've had a hard road and I wish you all the best. Of course, I am hoping for a good outcome, no matter what I decide.

I'm actually in a tougher place now. I was all set to go through with RT (have it scheduled - first day is 11/26) and feeling at peace with my decision. Now I'm wondering if this is truly worth it. I guess it's just a crap shoot and I need to take the odds into account.

Alf, all my scans were pre-op, and all clean. I wonder if it's worth it to re-do them prior to RT (not that I want to have another CT scan). Man, it doesn't sound like anyone knows the correct course of action. Nasty little bugger, this PCa, huh?

Thanks again, guys. I just have to sit with this.
Posted 11/14/2012 4:33 PM (GMT 0)
Ted,

I completely sympathize with you on your apprehension. I have a feeling that RT is in my future as well and it worries me greatly, much moreso than the original surgery.

I think in these situations we just have to accept the risk while hoping for the best. 

I recall the way another member put it:  A 30% chance of a cure with RT is better than 0% chance without.

Posted 11/14/2012 4:33 PM (GMT 0)
We all have to do our own risk/benefit analysis.

My reading tells me that the quicker the rise after surgery the less likely the cancer is limited to the prostate bed. I experienced biochemical failure about 18 months after surgery. Given my numbers, the nomogram

http://nomograms.mskcc.org/Prostate/SalvageRadiationTherapy.aspx

gave me a cure probability of 55%. That was good enough for me to take the plunge. I knew the probability of cure otherwise was zero. Of course I was much younger than you, only 56.

That does not mean that I didn't approach the whole radiation thing with a bit of trepidation. The horror stories are too real. Unlike most, however, I've had a tumor successfully treated with radiation in the past so I also knew that it could be done right.
Posted 11/14/2012 4:38 PM (GMT 0)
While I will offer no advice I will note that our situations are similar and, while I am very cranky about the situation, I am happy with my decision to throw everything at it as soon as possible. This is not to say that the kitchen sink doesn't leave a mark.

And, technically, if you go ahead with RT in November it would count as adjuvant, rather than salvage, treatment (the cutoff is generally six months). It's the same treatment but the odds are a bit better.
Posted 11/14/2012 4:41 PM (GMT 0)
At your current PSA doubling time, you could very soon be a good candidate for treatment at Mayo, first with a C11 Choline Pet scan to locate the lesion, and then radiation or surgery to treat it, assuming you turn out to be oligometastatic. Mayo has had good success with folks like you who experience rapidly rising PSA. They want to see the PSA at least at 1.5, and optimally at >= 2. Drs. Myers and Dattoli using the feraheme scan would also be an option.

Perhaps you don't want to wait for your PSA to rise that much before taking action, but it does provide a different option.

Wishing you the best.
Nellie
Posted 11/14/2012 5:53 PM (GMT 0)
The good doctor is correct in that in the majority of patient's doctors have no idea if the cancer is local or systemic and are taking a shot in the dark. This is why only 30% of salvage radiation is effective. It's a tough call, going for a cure that has a 30% probability with the possibility of more damage or going straight to HT. There are nomograms that can give you a bettter idea of your individual probability (search Hopkins) where you input your pre and post op numbers. Not ideal, but better than just rollong the dice with out any information.
JT
Posted 11/14/2012 5:55 PM (GMT 0)
Here is an MSK nomogram and you can search for others.

http://nomograms.mskcc.org/Prostate/SalvageRadiationTherapy.aspx

Posted 11/14/2012 8:47 PM (GMT 0)
Thanks for the info and suggestions, guys.

What I especially love about prostate cancer is the well-defined paths to take. All I have to do is look around me 360 degrees and choose the right one. confused

While I still have some reservations, I do side with Peter's suggestion of throwing as much as possible at it. I just want to be as comfortable as I can be that what I am throwing at it won't hit something else. No guarantees. That's another thing I love about this so much...

JohnT, thanks for the link for the nomogram. I did it - not the most optimistic result. However, I'm not going to give in to this sucker. Above and beyond the medical kitchen sink, I'm going to throw my own tools at it. I've spoken with an 84 year old man who was diagnosed with Gleason 9 PCa with a PSA > 50 who was told he had 3 years to live. That was 24 years ago (granted, diagnostics have improved greatly since then). He didn't have an RP or anything, but modified his lifestyle and went the macriobiotic route. So, we'll see. Throw the kitchen sink at the basterd PCa and modify my life and see what happens. What else can one do?

Thanks again, guys, it's been a help.

Ted
Posted 11/14/2012 9:01 PM (GMT 0)
We agree with David!Happy IMRT is working out for you. We were not so lucky, first 2.5 years no problems at all, then all he$$ broke loose! Tumors in bladder and many parts fried up. Now we spend 2 hours a day in a hyperbaric chamber. all it takes is for the radiation tec to be a millimeter off the target and your toast. Its pure he$$ urinating blood and the severe burning when urinating. Just be aware IMRT can have many side effects years later. Sorry for the venting!
Posted 11/14/2012 11:00 PM (GMT 0)
Ted, 

Are tracks are fairly similar.  Both Gleason 8.  In my case it took 18 months to note a rising PSA.   Radiation therapy is our only shot at a cure.  (I am currently waiting on results.)  Whether the chances are 20%, 30% or 50%, not much matter.  All other treatments are only delaying actions.  That is why I went into radiation.  Yes, sometimes it can go wrong.  But not often.  Find a center with experienced people, and you should avoid the bad side effects of the radiation itself.  Best wishes!  Hope we are writing here in twenty years!

Newspaper Lover

Age 68

DaVinci surgery 11/09. Clean margins, clean seminal vessels.

Rising PSA noted 06/11

Gleason 8

Time to recurrrence 18 months

Three month doubling time (summer 2011).

PSA rose from .07 on 06/11 to .17 on 11/11.

MRIs and bone scans negative so far.

Started hormone therapy (Lupron/Casodex) 12/11

Began radiation (SRT) 02/20/12.

Finished SRT 04/16/12

Last Lupron shot 03/12

PSA and testostorone "undetectable"  07/12

Next PSA and testostorone test early January

 

Posted 11/14/2012 11:07 PM (GMT 0)
I think the other thing to consider here is IGRT vs IMRT.

The IMRT did a scan, and then they built a plaster or some other material form that was supposed to position the body correctly.

With IGRT, they take a scan prior to every treatment. They observe bladder fullness and position, as well as rectum fullness. They then shift the patient as well as move the table to insure proper placement. At the facility I went to, the radiologist had to come in and double check alignment, dose, and setup before the tech could push the button to proceed. I thought it was a great technique. Every Monday the radiologist checked progress, asking about any symptoms, issues, etc.

I say all this to also advise all persons considering RT to be sure that your oncology center is up to speed.

Ted, with your updated PSA numbers, I would consider asking for full pelvic radiation which would go after the next logical place for the PC to have migrated to, the lymph nodes.

Goodlife
Posted 11/15/2012 3:04 AM (GMT 0)

Ted,

A major new study out of Europe reports the relative benefits of immediate vs wait and see radiation after surgery. The Lancet reports a long term study (median 10.6 years) of 1005 men after radical prostatectomy surgery.  These men were judged at "high risk". Half were randomly assigned immediate (Adjunct) radiation therapy. The other half were placed in a wait and see category.  This second group received Salvage Radiation (SRT) only when judged necessary by subsequent clinical or biochemical evidence.  This study was done by the European Organization for Research and Treatment of Cancer (EORTC) 22911 study, and was published online October 19 in the Lancet. 

Five year Progression Free Survival was significantly higher in the Adjunct group (61.8% vs 39.4%), and the Adjunct group was less likely to need hormone therapy.  However, overall survival (about 80%), after 10 years was about the same in both groups.  Maybe that has something to do with the age of us guys who get this disease.

As far as I know this is the most thorough long term study of the benefits of Adjunct vs Salvage Radiation for men at high risk.  (I would assert men at Gleason 8 or above are at high risk).

Here is the connect to the Lancet article.  More complete summary.  You would have to subscribe to read the full report.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2812%2961253-7/abstract

Newspaper Lover

Age 68

DaVinci surgery 11/09. Clean margins, clean seminal vessels.

Rising PSA noted 06/11

Gleason 8

Time to recurrrence 18 months

Three month doubling time (summer 2011).

PSA rose from .07 on 06/11 to .17 on 11/11.

MRIs and bone scans negative so far.

Started hormone therapy (Lupron/Casodex) 12/11

Began radiation (SRT) 02/20/12.

Finished SRT 04/16/12

Last Lupron shot 03/12

PSA and testostorone "undetectable"  07/12

Next PSA and testostorone test early January

Posted 11/15/2012 3:22 AM (GMT 0)
With your number being .60 instead of .06 does change the thinking a bit, even with me. Many RO's feel that your best shot with the radiation is to hit it before it hits .50. Others will say 1.0. And still others, as my own oncologist, say there is no exact number to look for.

I was radiated with the latest and "bestest" machine at the time, with each zap, they used GPS on the table, I was in a body cast, and they used 2 "snap" x-ray machines to line everything up. None of that technology helped my debacle. I can remember all the trouble they would have lining up things, some of my "15" minute sessions lasted more than an hour as they were constantly screwing around with adjustments. Add that to the mistake of having me being zapped on empty bladder, and it was a disaster waiting to happen. and when i started reporting to the RO after my 4th treatment that i was feeling a physical burn in my bladder area, she simply laughed it off "as my imagination" and the famous "there is no way you could feel anything". It was only near the end of my 39 treatments, and after my urologist got her on the phone and said "what in the hell are you doing to my patient" did the RO ever start to believe something terrible was happening to me. still, she never stopped the treatment to investigate the constant burning from treatment 4 through 39, and ignored my cries of pain.

my oncologist feels that way too many men jump into RT and SRT, mostly out of misplaced fear of a small psa number and with the urging of RO's that generate a lot of revenue for the radiation clinics, all on the hunch (as we have discussed here at length) that just mabe, the remaining PC cells are in the prostate bed. And with 30% being considered a good outcome, when you weigh that in with the risks of serious damage, both short and long term - all i can say, is for anyman to really think this radiation thing through. despite what i am saying, i am not against radiation as a secondary treatment - just want to make sure every man knows what he is getting into.

david
Posted 11/15/2012 6:41 AM (GMT 0)
One thing to look at is the issue of combining RT with adjuvant HT. While this make the RT useless as a diagnostic instrument, it ups the odds of the RT succeeding by a significant amount. You can exercise the MSK nomgram and compute odds with and without adjuvant HT and see how much the percentage odds change. The swing can be large.


Regarding the timing, the case for waiting has been made eloquently by others. Without disagreeing with the issues and risks that have been raised, there is another side. Most of the outcome research on SRT says that the earlier you do RT after a confirmed recurrance the better the odds of cure. The threshhold for confirmed recurrence is hotly debated, but most of the data says somewhere between .1 and .4 is the time to pull the trigger. Below .1 the odds are still high that the PSA will not progress further so you are potentially blasting yourself for no benefit. But, given you are at .6, if you are going to do radiotherapy at all, I would say now is the time. It is a legitimate judgment call whether to do radiotherapy at all if the nomograms say your odds for cure are low. I can't think of any logic that says it is better to wait until your PSA is 1 or 2 or more to do radiotherapy.

Post Edited (proscapt) : 11/14/2012 11:48:47 PM (GMT-7)

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