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IMRT - need to understand more

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Posted 9/16/2009 5:15 PM (GMT 0)
Now that my new radiation oncologist has switched gears and called me to let me know that she wants me to go through IMRT instead of conventional, I have been trying to fully understand the differences in technology, and what her thinking might be in my particular case.

Could use some help from the more technical minded here on the subject.  Does she think I am worse off, or does she think it will do a better job, or is this just another calculated thing on her part, thinking more is better.

I think I understand that they can safely give you more gys with IMRT, but not sure.

I think she said you don't have to feel your bladder up before treatments, does that make sense?

What are typical gys given for radiation as a primary treatment vs. gys for a salvage job?

I think in the last phone call, she was talking as much as 72, isn't that a lot for salvage only?

Going to do it, so its not about making a choice, but want to know more before I see her again next Monday.  Most of the sites I found were clinics that were too busy tooting their own horns.

Any advice from the brethren will be appreciated.  And as a reminder, she was dead set against including HT as part of this process.

David in SC

Posted 9/16/2009 5:33 PM (GMT 0)
I am not in agreement that a person that has failed surgery should not consider HT.  There are many very qualified studies that show improved results with salvage radiation therapy with ADT.  Especially when grade 4 cancer cells likely escaped the prostate.

IMRT uses patterns of beams to intensify the radiation at a specific target.  (thus the term Intensity Modulated)...The device rotates around your body and shapes the beam according to your personalized program that was set up after MRI and CT Scan images taken prior to starting treatment.  It does allow for a more intensified delivery with less side effects.  Unless the use of image guiding technology is used, then bladder empty of full will depend on what it was when the MRI and CT Scans were done.  If you had a full bladder in the initial scans then you might want it to be full when treated.  Still they map these things when setting up your specific patterns, and it can be adjusted during therapy. 

Tony

Posted 9/16/2009 5:36 PM (GMT 0)
From what I understand the radiaton is the same; IMRT is just a more accurate way to apply the dose without damaging other things. Another way to look at it is that it can deliver a higher dose with simlar or less side affects than ERBT because it is concentrated where you want it to go. You can safely deliver 81 g with few side affects. I don't know what the standard dose for salvage is, but 72 sounds right. Higher doses are more effective in klling the PC than lower doses. Years ago the standard dose was was 65 g and there were a lot of falures. Go on Prostate Pointers ERBT and pose the question; there are a lot of knowlegable guys there.
JT
Posted 9/16/2009 5:46 PM (GMT 0)
Tony, not disagreeing with you, can only report what I was told. My uro/surgeon, and two of the radiation oncologists, and my GP, and my former GP now, all feel that HT is not needed at this time. Only one other rad. oncologist said it shoud, and it was a standard part of his treatment for salvage radiaton. My vote was not t o have HT at this time, unless a wide majority of opinions pointed that way.
Posted 9/16/2009 5:48 PM (GMT 0)
John, I will check that out later when I am back home. I think I understand the more precise focusing part, but if that is the case, why would t hey use anything else. The dr. did say she wanted to look at every slice of me down there when they do the scans on Monday, so I am assuming it's a somewhat 3 dimensional approach. She does want to restrict it to the prostate bed, not the whole pelvis, and she's trying to protect further damage to the touch bladder neck of mine.

THanks.
Posted 9/16/2009 6:08 PM (GMT 0)
I would bet a near majority of oncologists who see your PSADT at about 4 months would advise ADT and possibly skipping the radiation. I would not side with that either. But again, this is your call and you need to be happy with your decisions. I fully support that...The terrible part of where you are is the controversey in what to do next.

You always have my prayers for a great outcome...You have been through quite enough already.

Tony
Posted 9/16/2009 6:37 PM (GMT 0)

Hi Dave

sorry you have to get radiation at this time i like you was thinking i might need it i 4 or 5 years i saw the doctor on Friday and i asked way do i have to get radiation when all my psa results ware <0.1

And i was told it is the standard with a Positive margin you get radiation

I have to drink about 2.5 UK pints of water a half hour before i get the radiation

No greens

I will be getting 66gys

Day 1 Scan+Radiation

Day 2 Scan+Radiation

Day 3 Scan+Radiation and a scan once a week

No vegetables

No fruit fresh dried or tinned

No cheese or yoghurts with seeds nuts

No hot&spicy food

No fizzy drinks no beer no fruit juice with bits

No brown breads

No porridge

Plus i have to take a xanaz table is to high for me

To day was my 15 doze

Posted 9/16/2009 7:05 PM (GMT 0)
David, Not certain, but I was under impression that no one uses EBRT anymore. So, perhaps the choice is between IMRT and IGRT? IGRT is a CT machine and IMRT in one. It allows them to take 3-D picture of your insides and re-adjust the body position to better hit the target area. It is not often used for SRT, as there is no prostate to move around and the differences between the two are minor. However, I would understand the need for frequent adjustments that IGRT affords, given your bladder neck situation. The no-drinking approach I dont understand. After your prostatectomy, the bladder drops down and gets in the way of radiation targetted to prostate bed. Filling the bladder makes it "pop-up" and move out of the way. Given your bladder neck problems it might be even more important. The doze I am getting at MSK is 72 as well. I believe this is the latest recomendation for SRT. I think the primary treatment is now up to 85. Finally to answer Tony's comments - my oncologist was first suggesting radiation. My stats are similar to David's: 9 months post op, PSATD 3 months, G7. If you go to mskcc.org web site ( http://www.mskcc.org/applications/nomograms/prostate/SalvageRadiationTherapy.aspx ) and run the calculator (based on latest research) you will see the probability of non-recurrence. You can do this with and without ADT and with different dozes of radiation. I think those results are good subject for conversation with your radiation onc. Greg B.
Posted 9/16/2009 7:18 PM (GMT 0)
My oncologist was against my radiation, though I was a 3B guy. He has softened his take on it since and I went against him anyway and had one more swipe at a local therapy. Every study that compares radiation and ADT to radiation alone has marked improvement in relapse data. Some RO's still shy away from ADT because they don't want to introduce additional side effects. I can understand that. But if it fails the patient will likely be on long term ADT anyway. And if they are interested in intermittent hormone therapy at some point, why not start it and use it to try to enhance the benefit of radiation? I say this as I finish my 2 and a half year stint on ADT. Would I do it this way again? Yes. Even though the ADT was harder on me than surgery and radiation combined...

Tony
Posted 9/16/2009 8:18 PM (GMT 0)
Tony, the "your call" bit makes me weary, because despite what we learn, what we ask, who we ask, etc, the PC patient is left to "make the call". I am not qualified. Already, despite getting several opinions, I am getting lots of contridicting advice, even from the radiation oncologists in the same practice in the same city. What is a person really suppose to do, to clean up a common phrase, its like you are cursed if you do and cursed if you don't. Tony, when I look at your specs, espec. post surgery, I strongly feel you are doing the correct thing, and it seems to be working for you, and I would probably have opted the same direction as you.

I come back to the same point, the only dr. I have spoken to locally, that reccomended HT along with the radiation, is the same guy that told me on the tail end of the talk, that btw, I can't tell you that you really need it, and I can't tell you that it will help for sure. What kind of advice is that to give to a patient (me) to convince them to include HT with the radiation. He gave me two good reasons not to, and then when you factor in the quality of life issues that come with HT, and I know, brother, you know them all first hand, then why would I want to? THen factor in the other two rad. oncologists I spoke to there, that were totally opposed to that approach.

So once again, I feel like I am going to have to make a complex call about something that I don't really know one way or the other. I don't think any of us are medically qualified to make these decisions.

Not even sure who or what I am angry at, but the back and forth answers even with the doctors have left me feeling like, you know what, screw the whole thing, don't do anything at this point, and whatever happens, happens.

David in SC
Posted 9/16/2009 8:22 PM (GMT 0)
6071, hey mate, glad to hear from you on the other side of the channel. Most dr. wouldn't automatically do radiation with a positive margin here in the states, at least not any more, the ones I hear from want to wait and see an authentic rise in post surgery psa before beginning a salvage treatment. In your case, you have very good numbers since your surgery, but of course, I would listen to my doctor first.

geebra, the drinking water bit makes sense to me, that's what the original order was given to me after this last visit. when the dr. called me at home, she said not to follow the written instructions, just to come as I am. perhaps some of that will be cleared up after monday
Posted 9/16/2009 9:20 PM (GMT 0)
David,
Sometimes I think it's because the doctors really don't know themselves. If it was black and white, the decisions would be 100x easier. I've had to "educate" my doctors about some ailments myself.

Sometimes the Internet makes decisions more difficult because we have more information and with more information contradictions can arise.
Posted 9/16/2009 9:57 PM (GMT 0)
Medically qualified? Who is?
Stage 3 or relapse of PSA is an area that doctors conflict with regularly. Stage 4 has easier decisions to make, but no one likes the options. But relapse and Stage 3x guys have to make decisions that doctors can't fully assess. Our best guage is statistics and studies. I remember meeting Dr. Paul Schellhammer, the former President of the AUA, and I remember him saying that with 40 years in the business he was totally unprepared for his diagnosis with a late stage of prostate cancer. He too has struggled with decisions. He said in his interview at the open Conversation in miami that I attended that after he was diagnosed, he had an epiphany on what it's like on the other side of the mask. And he did not like it...

David, you hang in there. You need action and even if it's just radiation now, then you have taken the right action. If you decide to do it with or without ADT, don't look back and question it. So many better things to do with your time...

Tony
Posted 9/16/2009 10:08 PM (GMT 0)
Tony, thanks for your patience. I assure you I am not angry at anyone here. Just angry at PC, it is a relentless ******, excuse my curse, to many of us. And if one more person in my real life tells me how lucky I am for only having PC, I may forget that I am a pacifist and punch them out, lol. It's like one of the most ignorant things anyone could say to us. Nobody is lucky to have cancer, I don't care what kind it is, and with PC, there are too many of us eveyrwhere that aren't having the fairy book happy ending to the story.

The work you do, is great and wonderful, keep on keeping on for the rest of us. If through encouraging early testing, etc, and getting the education about our cancer out there, then it's all worth it. Even if its to help the next generation of diagnosed.

David in SC
Posted 9/17/2009 3:53 AM (GMT 0)
Purgatory:

TC-Las Vegas explained IMRT well. You can “google” IMRT and some of the equipment manufacturers have detailed information on how the equipment works. As far as the drinking water thing goes: When I was mapped, they gave me three small tattoos, inserted a catheter, filled my bladder, removed the catheter, and placed a clamp on my penis. After the mapping, filling my bladder was my own responsibility. Thank goodness!

The mapping was done with a full bladder, each treatment was done with a full bladder and the trial run they do to ensure everything is programmed correctly was done with a full bladder. The idea being, I’m sure, to keep everything in the same position each time. I was given an ultrasound each time to check that my bladder was full. I think I only failed once.

My IMRT was done, here in Denver, in January and February and my treatments were at 6:45 a.m. Nothing like scrapping snow off the car windows and doing a bit of snow shoveling after pounding 32 oz’s of water! I was at work by 8:00 a.m. each morning. Of course I don’t know what your hospital is like, but I thought the early morning was a good time. Much more peaceful that time of day. Just a thought….
Posted 9/17/2009 12:45 PM (GMT 0)
Para, sounds like you had it all planned out. Being long term unemployed, the time of day really doesn't matter to me at this point, and from my house to the clinic, even with traffic, fifteen minutes on the average door to door.

Hopefully Monday I will come back with many more answers.

Looks like you were doing radiation as your primary treatment? Am I correct? This will be a salvage RT, with a couple of built-in problems, so I think the doctor is scheming how to work around the problems.

David in SC
Posted 9/17/2009 1:25 PM (GMT 0)
I dunno David. I keep looking at your stats, your progression and the potential side effects with your already complicated issues. To me personally, it seems that your new doc says that radiation treatment by itself will have somewhere around a 48% success at a cure, but with potential side effects of causing more complications with what you already have. This is not a direction I would recommend. I would be saying, screw with trying for a cure at this point especially in light of the possible additional problems that will cause permenant quality of life issues. I know the HT is not something to take lightly, but on the other hand, everything says that going the radiation route isn't stacking up in your favor.

You said that there are possible strictures with or without radiation ahead of you. I think your radiation oncologist is trying to devise a method to minimize radiation damage to urethra and bladder neck so that if you do need additional treatment for any stricture it can be done. BUT...there isn't any guarantee even with that. Take nothing for granted.

Your particular situation is not the norm, as most men that have to go through additional treatments for a cure after surgery, radiation is a breeze. I know you are thinking it through very carefully, but opting for a cure that could potentially be a quality of life issue for you is something I would think long and hard over.

Sorry David, I just felt I had to say something, and if I am out of line with my comments, I sincerely apologize to you.
Posted 9/17/2009 1:48 PM (GMT 0)
Les, your opinion is always welcome, you are trusted to me, and your own experiences very real, and I am the first to say, I don't have all the answers. If you research the latest on PSA velocity, it seems that outside of a miracle, nothing I have done or will do (including this salvage RT), with or with out HT added, is ultimately going to do me any good in the long run. I picked the short straw with the velocity issue.

On the stricture side, I am now one day shy of having had the laser corrective surgery, that bout cost me another 38 days on a foley, and for about the first full week, I was peeing almost at pre-surgery levels, which was intense. Now, I can feel and tell that my flow is getting weaker and weaker, lots of bladder neck pain again, even 3 Advil's can barely cut the pain at night when it is at is worse. What I thinki? The think the painful dialation did the most good, temporairly, not convinced the latest surgical effort did me any good. Now that the cath has been out for over 3 weeks, the urethra is reducing back to its former blocked size on its own. My guess, not a doctor.

At least my new woman dr. is very much in tune with the issue, and working hand in hand with my uro/surgeon. She is now my primary care giver, not him, so if we want to do something different, its out of his hand.

I was in a real negative funk yesterday, try not to get like that, but anyone that has PC will have those days, at different times on different days. My negative thinking was, what is even the point of going through all this with the radiation, knowing that I am going to have issues, and based on my stats, it's probably going to fail. What a lot of money and time down the drain, and for what?

I know I am not suppose to feel this way, and then most times, I feel like I am in the fighting mode. But I also learned many years ago in my past, that be careful to pick your fights, you can't fight them all, and yes, there are plenty of people that can kick your butt!

Since my surgery last Novemember, I have only had, at the most, a two week period of time where I am not fighting pain from one source or the other, all connected to PC one way or the other. When I did the surgery, I went into it tough, and thought, I can do this, I can win, and I will recover fast, and by now, I expected to be cancer free, healthy feeling again, and employed. As of this date, none of the above has happened.

Not so much that I have given up hope, just readjusting my thinking based on reality, not what I want or expect things to be.

We got to get the message out there, Les, early testing, new testing methods, more research, etc. etc.

Looks like you are holding your own still, and that makes me happy.

Thanks for your words, always appreciated.

David in SC

ps Will be talking to my county VA rep, to see if we can get some paperwork started on the Viet-Nam Vet/Prostate Cancer disability claim going.
Posted 9/17/2009 4:45 PM (GMT 0)
David, I'm sorry read what your going through. On the other hand there is a reasonable possiblity that SRT will cure you of cancer. And if you continue to have blockage problems and pain then that can be addressed with SRT out of the way.

It sounds like you have a great radiation doctor who is doing everything to try and cure you and prevent furthur complications with the blockage issues.
Posted 9/17/2009 6:00 PM (GMT 0)
That's what I believe too, Squirm, and I am hoping she as good as her reputation is, I know a former patient of her's that expounds about how great she is with all the little patient issues that a lot of doctor's seem cold to. The only way to know if the SRT works, is to have it, and wait and see. I realize that if I don't have SRT, it will be 0%, so it's kind of obvious despite my reservations.
Posted 9/17/2009 8:30 PM (GMT 0)
David,
Are you drinking pomegrante juice? There's more evidence that it helps extend psa doubling time.
Posted 9/17/2009 9:27 PM (GMT 0)
No, and no offesnse to those that drink it and believe in its powers, I think it tastes nasty, as I rarely drink anything that isn't 100% straight water. don't like the aftertaste to it. My GP, and please readers don't jump me, he's thinks it's a big waste of time for health reasons, unless you happen to like drinking it. He said that all it does is masks the psa numbers, in the same way that saw palmetto falsley lowers psa numbers, giving guys false hope that it working. I don't know, not clever enough to know the facts in this case.
Posted 9/17/2009 11:37 PM (GMT 0)

Hi David.  I have been out of town on a business trip for about a week so I have been reading and responding in a hit or miss fashion.  I was going to post this on a new thread but since this thread mentions both of these items thought I'd go ahead and post it here.  On this business trip was having breakfast and heard a couple of guys talking.  One was a marine vet and one was an army vet.  The army vet was a physician who is now retired and works for the VA in the department that handles disability claims.  I told them I was an air force vet and we had a great conversation. 

After the marine left, I mentioned to the doc that I had prostate cancer last year and that I participated in an online group that is very beneficial to me.  I gave him the contact info and then asked him about the recent thread we had that VietNam vets were eligible for disability if they got prostate cancer.  As it turns out, he had prostate cancer last year (I would estimate he is about 70) and he said it was absolutely correct that the default was that if you had boots on the ground that you were eligible.  In fact, he is drawing disability for his prostate cancer.  I explained that I was in Thailand and not Viet Nam and he said I should absolutely apply and he was very confident I would be approved.  I said to him that I really thought that the fact my father had prostate cancer was probably a much greater factor than serving in southeast asia.  The doc said that was absolutely true, but that congress has said that vietnam vets with prostate cancer should receive disability.  I would really encourage you to give it a shot. 

The second subject we discussed was radiation.  He had IGRT - Instrument Guided Radiation Therapy.  He said that is the only kind he would have.   You might ask your doc if that is an option.  This gentleman had it as his primary therapy, but I got the idea it was available as salvage therapy as well.  I think Geebra mentioned this earlier but you might ask about it.

Trust your appointment on Monday will go well.  Please know we continue to pray for you and your family.  David

Posted 9/17/2009 11:56 PM (GMT 0)
Thank you, David/CPA

Wondered where you had been lately. Funny you mention the VA disability. I contacted my county Vet rep just today, to make an appointment. The advice I got is that you don't want to go through the paperwork/online mess by yourself, too easy to mess up and cause rejection and massive delays. The woman I talked to sounded familiar with the process, and on the surface, felt I would easily qualify.

Think I had mentioned to you way back, that I use to fly into your base, believe you said Utapo, can't spell it any more. We would go there as an alternative for refueling, when there were weather issues or if it were too "hot" in Cam Ram Bay, in the Nam.

Getting a whole new list of questions for next Monday's session with my new doctor.

I am disturbed, that tommorow will be one month since I had the laser surgery, and already my flow is perhaps half of what it was immediately after the catheter was removed. Getting real tired of that game.

Hope you and your family are doing well too.

David in SC
Posted 9/18/2009 4:35 PM (GMT 0)
Hi David.  Hopefully there is some reasonable explanation for the decreased flow and there is something they can do about it.  This gentleman I talked to said the same thing - go to the VA office in Richmond and let them help you.  He was very helpful.  Trust your paperwork will fly through and you'll soon see that income stream coming in.  David

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