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Posted 3/8/2007 6:38 PM (GMT 0)
I live in Dallas, TX and although it would appear that proton beam therapy would be the best way to deal with my prostate cancer, which is supposedly not metastasized according to the MRI scan, the logistics of going to Loma Linda and staying there for 10 weeks is a bit overwhelming in my current semi-hysterical state.

I have talked to two people who have gone to Loma Linda, and they both swear by proton beam therapy.

However the urologist here, who is a member of a group of urologists and one (presumably biased radiation oncologist), seems to have a vested interest in Image Guided Intensity Modulated Radiation Therapy (IMRT) and is therefore pushing it. My Internal medicine doctor who also serves as my GP, has all sorts of dire predictions about the outcome of *any* radiation therapy which tells me that he knows nothing, is obsolete, or whatever.

However, it appears from looking at various web sites that there are potentially disastrous side effects that may not even show up for 1 to 2 years after treatment with IMRT. The very fact that the beam is burning up tissue all along its path (e.g., the rectum, etc.) rather than supposedly being stopped at the prostate like the proton beam, leaves me rather concerned about this strategy for treatment. Therefore, I suspect that this scheme is being pushed by the urologist simply because *his* group has it because IMRT equipment is much less expensive than that needed for proton beam therapy.

So to my question: Has anyone had IMRT? Does anyone know anything about it (i.e., know somebody who had it, etc.). Any threads here or links you can direct me to?

If this question has been asked before, I apologize; I have done a search and I cannot find any posts related to IMRT . . . possibly because I am not using the proper search terms, I don't know.

Thank you for any input.

krt

Post Edited (krt) : 3/8/2007 11:42:06 AM (GMT-7)

Posted 3/8/2007 7:39 PM (GMT 0)

krt:

Think Jetguy's thread - Radiation A Journey would be a good one to check.

Have you checked with MD Anderson in Texas?  They now do proton, but don't know if they are doing prostate cancer yet.

Good luck to you.

Dutch


Posted 3/8/2007 9:23 PM (GMT 0)
hi KRT

i am not here to knock IMRT (photon or x-ray radiation) which is the most sophisticated form of x-ray radiation today.  Based on my research, I don't believe it produces the horrible side effects that less advanced forms of x-ray radiation produced years ago.  Some experts say that it is on par with proton radiation.  I don't fully agree with that position and that's why i elected the proton radiation.  If you have not already done so, consider reading my thred on Proton Radiation Therapy --My Journey With Prostate Caner.  I explain the reasons why I elected proton rather than x-ray radiation.

Unfortunately I do not believe that any definitive long-range studies presently exist which specifically compare patient outcomes with IMRT (x-ray) and proton radiation. There are studies relating to each type of radiation, but no comparison of the two. Loma Linda, of course, has published a 10-year study which indicates a good degree of success with proton radiation which they started in 1990.

In conclusion, if I could have my choice of either x-ray or proton, I would opt for proton because it appears to be a safer form of radiation therapy with less of a chance of damaging good tissue surrounding the prostate.  I could have had IMRT radiation closer to home, but elected to travel to another city where proton radiation was offered. Obviously, any PC doctor (including an IMRT radiation oncologist) is going to push for his speciality--it is often all about dollars and cents.  I don't like doctors who give a sales pitch.  It is imperative that we get the facts (independent of our doctors) and make our own decision.

Good luck to you in your treatment decision and knocking out your PC.

Dave

Posted 3/8/2007 9:54 PM (GMT 0)
KR---Although Proton Beam may have slightly less side effects than IMRT with image guidence (gold seed Implantation), the long term results may be very similar. But in any case the experience of the radiation oncologist is very important. I would very wary of any local IMRT center owned by a local urologist since the treatment experience may be limited, and would favor any university affiliated program. This advice comes from a retired physician who recently had IMRT with minimal side effects. Whatever you choose. read the nuerous books (Dr. Walsh, etc.) on the subject. Good luck!
Posted 3/8/2007 11:42 PM (GMT 0)

krt:

As of today I have completed 32 of 43 IGRT treatments.  I'm probably at the clinic that you are talking about.  Dr. T is the radiation oncologist.  It's on North Central Expressway near Presby Dallas.  It's important to distinguish between IMRT and IGRT.  With IGRT, the prostate is located each day of treatment after you are on the treatment table.  This is done with sonogram, CT scan, or, in my case, x-rays. 

ALL prostate treatments have side effects.  Surgery, radiation (including Proton Beam), and chemical treatments.  There is no excaping it.  That is the reality and we all hate it.  My neighbor had proton beam at Loma Linda five years ago.  He had some loose bowel problems that have resolved themselves.  He also experienced fatigue.  Much the same as IGRT.  He is cancer free today. 

Last week, I was experiencing some fatigue that seems to have resolved itsself.  I recovered over the week end.  I told my oncologist on Monday, that if I didn't know I was having treatment, I wouln't know I was having treatment.  I am having some loose bowel. 

MD Anderson in Houston has Proton Beam and they do prostate cancer.  I talked to them before deciding on my IGRT. 

I think that most of us when we make our treatment decision choose that which frightens us the least.  Or that which we dread the least.  Do the research and make your decision.  It is an agonizing process.  It will consume you, but eventually you will come to grips with it.

Best to you,

Bill   

Posted 3/9/2007 12:55 AM (GMT 0)
Jetguy said: "With IGRT, the prostate is located each day of treatment after you are on the treatment table. This is done with sonogram, CT scan, or, in my case, x-rays."

I assumed that IMRT was the same thing as IGRT since the brochure the urologist gave me abbreviates "Image Guided Intensity Modulated Radiation Therapy" to "IMRT"

Yes, Jetguy, that is the one I am supposed to see tomorrow; then I'll have to make a decision as to what I am going to do. Your comment about the x-rays is one thing I was going to ask Dr. T; why is that not bad if you have to have that done so many times? Looks to me like you are getting an awful lot of radiation that way to otherwise healthy tissues that might be adversely affected . . . ?

Why did you decide to go the IGRT route instead of the proton beam scheme? Other than convenience here of course, was there any particular medical reason?

I have talked to two people here who have gone the proton beam route, both of them because they heard about it from someone else. One fellow who has a very high opinion of MD Anderson in general (they saved his wife twice with breast cancer) went and looked at the proton beam setup they are using at Anderson, and he was appalled; he commented that they don't use a pod or anything to position you properly (of course maybe they are using x-rays to position you each time, but if so, again, why does that not *over radiate* you?). Cousin Bill mentions gold seed implanting. What is that? Did Dr. T mention anything like that? I notice the brochure mentions implants to help locate the prostate properly each time.

I gather you have not experienced any of the bleeding in stools, urine, etc., or other adverse side effects (other than the fatigue and loose bowels you mentioned) that are mentioned on some of the IMRT sites?

Any further comments would be greatly appreciated because the deal with Dr. T is basically my other option short of Loma Linda . . .

Cousin Bill: "Although Proton Beam may have slightly less side effects than IMRT with image guidence (gold seed Implantation), the long term results may be very similar." What is gold seed implementation? And what about Dave's comment about the implanted radioactive seeds; is there a similar problem with "marker" seeds?

Thank you very much people,

krt

Post Edited (krt) : 3/8/2007 6:37:21 PM (GMT-7)

Posted 3/9/2007 2:04 AM (GMT 0)
All of us here anguished over our best treatment plan.  It is good to know that proton therapy is now done in Texas and other locations.  I had the DaVinci Surgery and I think it was the best decision for me. I do have a question about the cost of Proton beam therapy.  I didn't pursue it long enough to know the answer, but What is the "out of pocket" cost at a place like Loma Linda?  I was told by a good friend that the cost Not covered by insurance would be in the neighborhood of $40,000, in addition to possibly another $10,000 in living expenses.  He said that Loma Linda would allow you to pay on a financed monthly plan. Obviously we don't want to put a price tag on something that might prolong our lives, but it did make me wonder.  My out of pocket cost for the DaVinci procedure will be less than $1000. There is no way I could have paid a $50,000 medical bill. I guess what I am saying, is that everyone should have the same medical options at a price they can afford to pay.  Post not edited ~ only the bottom 9" of white space that was empty!!!   :) Post Edited By Moderator (bluebird) : 6/26/2007 1:27:47 PM (GMT-6)
Posted 3/9/2007 2:29 AM (GMT 0)

krt,

IGRT is the same as IMRT except that the prostate is located each day.  If you go with the same place as I, you will have to have markers implanted.  I am going to bump my Radiation - a Journey to the top for you to read.  Dr. T will show you what the markers and the balloon look like.  You will not like what you hear about the simulation and the balloon.  I spent many hours researching this and came to the conclusion that it is best practice.

Yes, you are getting extra x-rays, but you are getting so much that it almost doesn't matter.  Prostate cancer is serious business and the treatment of it is serious business.  You may decide that you don't want radiation.  Every person here will support you.

You will find that Dr. T tells it like it is.  He does not sugar coat anything.  He is a radiation expert. Post tomorrow after your consultation.  He will tell you that you don't have to make a decision tomorrow. 

This is an unpleasant experience for all of us.  I suggest you read all that you can here.  You may be more interested in surgery.  Or watchful waiting. 

I chose IGRT instead of Proton Beam because of logistics.  My wife and I are taking care of our five month old grandson for ten hours each working day.  The ability to be in Houston, or Loma Linda five days a week was going to be very challenging.  Is Proton Beam better.  Well  -  maybe.  Just maybe.  Maybe fewer side effects.  Maybe less long term cure rate.  Maybe. 

When it comes to prostate cancer treatment, you pays your money and takes your chances.

I'm gonna' bump my radiation journey to the top.  It is mostly an unemotional report on what I have experienced.  I also posted a 'why' I chose radiation.  You can find it if you wish to.

Best to you,

Bill

Posted 3/9/2007 2:39 AM (GMT 0)
Hi krt:  It would help to see your stats, as far as PSA, date of diagnosis, biopsy report, Gleason etc. -- although none of us here are doctors. You've received good advice from the others in this forum, but I wonder if you have done enough research. My advice is: Good doctors, whether they are radiologists or surgeons, will tell you all about the benefits of their therapies, BUT will also encourage you to explore other therapies before making your final decision.  If you sense that you are being "sold" on this IMRT treatment, from this particular group, take a little more time before commiting to them.  You MUST feel confident about your path to treatment and you don't want to be a notch on some doctor's belt, in order to build their resume. We've all been through this tough decision-making process and I was "semi-hysterical" as well.  First, the shock, then talking to guys who swear by radiation, or open radical prostectomy, robotic etc.  On and on. Explore your options as best you can.  Understand that right now it's difficult to make your decision.  Get someone to help you in the research.   And remind yourself that this is YOUR decision and the hell with anyone who doesn't agree with your decision. Approach it that way and you'll feel better about the whole thing.  Trust me.  Have a glass of wine.  The right decision will come. Best to ya!!  
Posted 3/9/2007 5:51 AM (GMT 0)
Hi ~ KRT   &   Loved Ones,               A    “Special”   Warm Welcome   to   You!      I know we can “all” make "Your Journey" smoother just by being here for you!   This is truly a great forum!!! ~ You have joined!  You are now part our forum family ~ a group of wonderful individuals who are so willing to share...     It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it!   Keep posting.... OKAY!!     KNOWLEDGE IS POWER... and POWER conquers fear YOU MAKE THE DECISIONS… YOU HAVE OPTIONS… ~ and ~ Your decision will be the right decision for you!!!     We invite you to visit our personal thread in the signature area below . Our thoughts and prayers will be with you as you continue to move forward with your decision.   In Friendship ~ Lee & Buddy   “God Bless You”   It's a little prayer   ~   "God Bless You" ...but it means so much each day, It means may angels guard you and guide you on your way.     (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Helpful Hints for New Members... Hope this helps you! :)   A sampling of links attached below from Helpful Hints page :) (direct link ~ just click on the title!   Reminder to click on the REFRESH icon once there) Jetguy's Page... Welcome Friend :) Radiation - a journey   IGRT Why I chose radiation JustJulie's Brachytherapy Journey  
Posted 3/9/2007 5:28 PM (GMT 0)
Thank you for all the good comments.

On the Loma Linda cost thing, I asked them, and since I am 74 and under Medicare, they say that they take Medicare assignment, so assuming that my supplemental covers the rest OK, there would theoretically be no additional cost.

Jetguy, your description of the initial part sounds less than pleasant . . . to put it mildly. I appreciate it being bumped up where I could find it and the link to get to it.

Present PSA is 8.0 or 8.5 depending on which lab you believe; it has risen from 6.3 in past 22 months since last one was done.

12 core biopsy showed 4 cores on left side at 4+3=7, left side one at 3+4=7.

MRI report indicates that it is supposedly contained in the prostate (provided they looked at it right . . . I have seen so much about pathologists missing breast cancers when looking at mamograms that I don't put 100% confidence in any lab). It particularly bothers me that the biopsy shows the 4 bad cores on the *right* side while the MRI report refers to seeing the area on the *left* side, unless this relates to whether you are looking at it from the rear (rectum) as in biopsy, and from the front as in MRI . . . ? Bone scan looks OK.

Thank you,

krt
Posted 3/9/2007 10:46 PM (GMT 0)
Just got back from talking to "Dr. T" about IGRT (see Jetguy); his contention is that the amount of radiation you get each time they make sure of your prostate position is trivial compared to the total radiation you are getting overall (as Jetguy said), since it all basically carcinogenic. He also says that the IGRT has an incontinence rate of about 3%. But I failed to ask him, what sort of incontinence that is; dribble or total loss of control, or what, and I also failed to ask him when it began to appear (if it does) i.e., at some point during the process or afterwards.

Dr. T says he does not know anything about proton beam therapy and it may be better; he does not know.

I was looking at the MRI scan report and the biopsy shows the cancer on the right side and the MRI says the major mass is on the left side; I asked Dr. T about that and he said "well they made a mistake, MRI scans are not much good anyway". If that is the case why do they do them and how can they use them to tell whether it has spread out of the prostate into the capsule or not, which I thought was one of the objectives of the MRI scan?

I also understood him to say the *impotence* rate is around 50%! Unless I was too stunned to hear clearly. He had a very bad case of the sniffles and was hard to hear because of that which he attributed to going for a walk at noon and being exposed to too much pollen blowing around to which he is allergic. Hope I don't have the flu next week . . . I read somewhere recently that one should take a pocket recorder to the doctor's office so you know for sure what they said afterward, and I am beginning to think my braid is deteriorating to the point where I need that!

Called Loma Linda again, and they are using x-ray positioning in addition to the pod to hold you in place for proton beam therapy, so it appears that they are on top of the prostate movement problem also.

krt

Post Edited (krt) : 3/9/2007 4:14:47 PM (GMT-7)

Posted 3/9/2007 11:36 PM (GMT 0)

Hi, krt, I had treatment number 33 of 43 today. 

You will find that any IGRT, or IMRT will do a simulation.  Don't know about proton, but think so.

Loma Linda uses the balloon.

Ain't no free lunch.

Regards,

Bill

Posted 3/10/2007 12:21 AM (GMT 0)
"You will find that any IGRT, or IMRT will do a simulation."
Yes, I believe proton does too. But I am not talking about a one time thing; I am talking about x-raying you every time for positioning; not just the initial simulation. Are we on the same page?

I am glad you are doing well. You are well down toward the end! Good Luck,

krt
Posted 3/10/2007 12:26 AM (GMT 0)

Hey krt, I just re-read my previous post and it sounds kind of cold, or unfriendly and I intend neither.  I understand where you are at this time (I have been there), so I hope I haven't upset you.  Hang in there and learn as much as you can.

To the best of my knowledge, IGRT compared to surgery, is better for urinary incontinence and worse for impotence.  Others may have a different opinion.

Regards,

Bill

Posted 3/10/2007 5:53 AM (GMT 0)
Hi KRT

i am in the process of receiving the proton treatments. I forgot to post in my thread that I too am getting x-ray for positioning. I believe they did it every day for the first week and then only about once a week thereafter. They do not use the rectal balloon where I am being treated as they don't believe it is necessary (i.e., the balloon pushing against the rectal wall may only make matters worse during the radiation treatments). I trust and respect their decision. Part of the positioning each day is placing a sonogram scope on my abdomen which brings the position of my bladder and prostate up on a computer screen for directing the proton beam to the correct area. The radiation goes through my left and right side below the hips (alternating between the left and right side each day). Also, tattoo markers were placed on my left and right side as well as my abdomen for the positioning prior to starting treatments.

I never heard of incontinence with any form of radiation whether it be IMRT (radiation) or proton. From my knowledge, most of the urinary side effects, at least with proton, occur during treatment and dissipate after treatment.

With radiation, impotence does not usually occur immediately--it can vary from months to years after treatment. It is my understanding that viagra and other similar drugs help most men who were treated with radiation to overcome impotence. However, much depends on how potent a man was before treatment.

I can hardly believe what you were told about the MRI scan (i.e., that your doctor said they are not very reliable). I have read that they cannot be relied upon 100% to detect the stage of cancer, but to say that they are not very reliable I believe is way off the mark. The MRI scan is considered an important tool in determing one's stage of PC. It makes no sense to me that your biopsy showed cancer on the right side and the MRI showed a big mass on the left side. I think you need to get your doctor to give you a better explanation. This disparity would disturb me greatly without an appropriate explanation. I would consider getting another doctor if he can't give you a better explanation!

Good luck to you!

Dave

P.S. There is nothing to be ashamed about in taking a tape recorder with you for important doctor consultations. It is often advised in some of the leading books on PC cancer. I recorded both the meeting with my medical oncologist and with my radiation oncologist. I have to confess that I did not find it necessary to replay them, but it gave me comfort that the tapes were available to me if needed.
Posted 3/10/2007 4:48 PM (GMT 0)
Jetguy: no problem and no offense taken. I appreciate all the info I can get!

Pcdave: "I think you need to get your doctor to give you a better explanation. This disparity would disturb me greatly without an appropriate explanation. I would consider getting another doctor if he can't give you a better explanation!"

I talked to both the IMRT oncologist about this and after that I called the urologist yesterday afternoon when I got home, and they both said "they probably just made a mistake in dictating the report . . ." gives one no end of confidence in the accuracy and care that was put into reading the MRI as to whether it has really not spread into the capsule as the report claims.

When I talked to M.D. Anderson on the phone, they said they would not consider me until they got the actual biopsy slides and the MRI and Bone scan film (not sure what form the MRI data is stored in) and looked at it themselves. At the time I thought that was a little extreme, but based on the sloppy work described above, I guess not. However, Anderson says they will not take anyone with a Gleason score higher than 7 for proton beam . . . period. Guess they must not rate one's chances for the future all that good if it is higher, which I thought was less than encouraging. Of course mine is supposedly 7, but nonetheless . . .

krt
Posted 3/10/2007 7:18 PM (GMT 0)
krt

i don't think that the criteria that MD Anderson uses in selecting patients for proton therapy is necessarily different than that used by other proton therapy centers; however, Loma Linda may take patients with a Gleason beyond 7. I know that where I am being treated with proton, they would not have accepted me if I had been in a more advanced stage of PC. I would be happy that MD Anderson wants to carefully review and confirm your diagnosis before considering you for a patient. In fact, they will most likely also insist on doing their own DRE and not accepting that of another doctor. This was done in my case and it indicated to me that they were doing the necessary due diligence before starting my treatments.

Once you get beyond Gleason 7, you are entering that gray stage of advanced PC. In many cases, it can be difficult to wipe out the cancer with either surgery or radiation, especially if any of the cancer has gone beyond the prostate capsule. However, I have read of cases where both surgery and radiation have been performed with a Gleason exceeding 7, depending on the specific circumstances.

My body scan and MRI are contained on a DVD and I assume yours will be the same.

i know that mistakes can be made in life--everyone is human. however, when mistakes are made in the medical world the results can be devastating to the patient. the MRI report should have been double checked by someone. your doctor should have picked up this error immediately after reading both the biopsy and MRI report. the conflict between the two reports should have raised a red flag immediately for investigation and resolution. in fact, this should have been resolved before the reports were ever presented to you (i.e., this error should never have come to your attention). the manner in which your doctor presented this to you was unprofessional. after being made aware of a glaring error like this, i would not want to deal with that doctor again. some of the best PC doctors consider that the MRI report is a vital part of PC diagnosis and would not dismiss this report as somewhat worthless, as your doctor did. if you are very upset by this, you have a right to be!

Dave
Posted 3/10/2007 10:39 PM (GMT 0)
I have a question that someone may be able to answer for me.  My PSA has been all over the place.  In November 06, it came back at 38.3.  A month later it was 24 and in January after 30 days of Cipro it was 15.  At the time of my initial visit to Loma Linda, the Doctor indicated that it would be best for me to start on Hormone Therapy (started February 15th, 07) and after two months, return to Loma Linda for Proton and Photon treatment.  One question that I don't have a good answer for is what effect the additional Photon treatments will have as related to side effects.  My Gleason is 3+4=7 and my staging (confirmed at Loma Linda is T1C).  The Biopsy indicated one area in 6, 30% cancerous. We will leave for POD and CT scan appointment on April 2nd.  Three to four weeks from then to begin treatment.  I am currently on Lupron (3 month shot).   One additional piece of information.  The biopsy indicated "Focal and acute inflammation."  This is a great web site and I very much appreciate all of the information provided here.  Thanks to you all, regards  Fred


Post Edited (fredlp) : 3/10/2007 4:05:23 PM (GMT-7)

Posted 3/10/2007 11:19 PM (GMT 0)
Hey Fred, I know a guy who had a Gleason of 30. He did the hormone stuff and went to Loma Linda for proton and photon about five years ago. Today he is just fine.

Bill

P.S. krt, I get the positioning x-rays every day.
Posted 3/11/2007 4:07 PM (GMT 0)
KRT--Sorry to be late in getting back to you. In my case three small gold "seeds" were placed in my prostate by the urologist in a procedure similar to the biopsy. Before every IMRT treatment two X-rays are taken and my position adjusted since the prostate may move several millimeters according to rectal volume.

My choice of IMRT over Proton was guided by convenience--10 miles to a university affiliated hospital with IMRT vs. many 100's. Three different MD's advised against surgery because of other medical problems.

Good luck to you.
Posted 3/11/2007 5:30 PM (GMT 0)
Thanks for the info.

Something that just occurred to me this morning (and I cannot figure out why it came so late), since with radiation, you still have your prostate, the people I know that have been "successfully" treated continue to have PSA's (logical), also have DRE's.

Now since your prostate is still there to be "fingered" what is to prevent another new cancer from developing there down the road just as the original one did; i.e., what makes things any better than they were before the first cancer in terms of developing it again?

Thank you,

krt
Posted 3/11/2007 8:36 PM (GMT 0)
krt--It is not impossible to have a new cancer arise from the residual cells after IMRT but that is unlikely since most PC cells are destroyed and mostly only fibrous tissue (think structural elements like house beams) remains. It is more likely to have a recurrence of the original cancer. In any event it would be difficult (but not impossible) to make the distinction

That is the beauty of surgery. Done exactly with total removal of all cancer (if possible) there is no gland, no PSA (beyond trace), and no worry. That is why surgery may be best with localized disease of low grade (Gleason less than 7).
Posted 3/11/2007 9:42 PM (GMT 0)
KRT--My prior e-mail was somewhat abrupt. I don't want to imply that surgery as a treatment for PC is best, but rather that it is final with the potential of a 100% cure. That is why surgery does best with localized disease of low grade (Gleason less than 7) But the choice of therapy in PC is very complicated and many factors must be considered.

Patient who have IMRT/Proton (myself included) must live with possible recurrence since some cancer cells might remain. But because of poor operative technique, or disease extending beyond the gland, surgeons may not "get it all", and disease recurs. That is why the experience of the physician (radiation oncologist or surgeon) is very important. Beware of MD's with financial conflicts.

Periodically I may report my PSA but the low point may not happen for many months.

Age 63
DRE +, PSA (initial) 4.2
Biopsy 4/12 Gleason 7, 4/12 Gleason 6
Stage T2b
IMRT 42 treatments, total dose 7560 mGy
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