“I am a dosimeter” (the tissue effects of PBRT)


The text and the image below have been kindly submitted by HAK (a patient and a respected clinician) as a reference source regarding the distinctions between the effects of proton beam radiation therapy (PBRT) and other types of external beam radiotherapy, particularly intensity-modulated radiation therapy (IMRT) in the treatment of localized prostate cancer.

My prostate cancer was treated with proton beam radiation therapy (PBRT).  About 18 months later, I began to have rectal bleeding, which persisted. 

After another 2 years, I had it treated with argon laser photocoagulation, and a photograph was taken first, through a colonoscope. 

90802proctitisf

My radiation proctitis, consisting of  what is called angiodysplasia, can be seen  to be localized to the anterior wall (in the south to southwest of the photo) and not to be generalized around the circumference of the rectum,.  This is what one might expect with PBRT.   Such lesions might not be so well localized when they occur after photon irradiation, e.g. IMRT, as is also illustrated in the fourth and fifth graphs of Figure 5 in a rather technical paper by Trofimov et al.

The point is that with PBRT (as traditionally administered), one expects a sharp drop off of radiation between the anterior wall of the rectum (the wall closest to the prostate) and the posterior wall (the wall of the rectum furthest from the prostate). Therefore, my rectum has served as an in vivo dosimeter, recording the regional variation of radiation.

I am submitting this, not as an argument regarding PBRT, but as a data point in the elucidation of its properties.  It would be of interest to see many such photographs from examinations done after IMRT and PBRT.

18 Responses

  1. My husband had proton beam treatment ending in July 08.

    Almost 6 months after his treatment ended, he had an episode of bleeding (after eating a lot of nuts and some of my rough diet bars). He had a colonoscopy about a month later.

    The doctor thought, because he had had radiation, that he would have a lot of damage, so he did the procedure in the hospital. He expected to have to cauterize the blood vessels in the affected area.

    To his surprise he said he found only a few faint blood vessels, not enough to cause the bleeding. (I wish I had a picture but the gastroentologist didn’t give me one.) He thought it would be ok to eat nuts as he didn’t see any real damage. He said the bleeding was caused from hemorrhoids. He has had some spotting since and eats very few nuts.

    He has no other side effects from the treatment and doesn’t even think of himself as a cancer patient. His urologist is also very pleased with his progress and says that what little cancer he had was taken care of by the treatment. We think he really doesn’t understand the treatment very well and I doubt he recommends it to other patients.

  2. Where was this patient treated and when? What was the total dosage in Gy? What other treatment did the patient have?

    What proof can you offer that the picture presented is actually a patient of proton beam radiation therapy?

    If the “patient and respected physician” is willing to provide this information (and I cannot imagine why he would not) then why not also provide his name?

    There is a LOT of mis-information out there, and I find that I have to have proof for some of the things shown,

    My own colonoscopy after nine months post proton treatment at Loma Linda University Medical Center in California shows MUCH less radiation effects,

    Webmaster, please provide the method for sending my photo. I have a jpeg and it will not post here.

    I do not mind you posting my name. I can provide the official physician report on this if necessary.

    Fuller Jones

  3. Fuller:

    If you want to start a discussion about this specific issue, it would be more appropriate on the Social Network site, where you can post your own photograph and insert a link to this original.

    The patient in question is fully capable of deciding whether he wants to give his name. The current information was posted with his full permission, but it is NOT my right to make decisions about whether he is willing to disclose his name for him.

    If you DO start such a discussion, I can also post a link from this post to that discussion for people to follow.

  4. I find it interesting that there are no members of one of the six (soon to be seven) center of excellence hospitals that offer proton beam radiation therapy on the Advisory Board of this prostate cancer site.

    Most proton centers treat more than half of their patients for prostate cancer. Loma Linda has treated more than 6,000 patients with proton therapy for prostate cancer.

    I could suggest that you contact one of them to broaden your expertise in the proton therapy area.

    These centers are:
    Loma Linda University Medical Center CA
    Massachusetts General Hospital Boston MA
    MPRI Bloomington IN (Univ. of Indiana)
    M. D. Anderson Proton Center Houston TX
    UFPTI Shands Jacksonville FL
    Oklahoma City Proton Center (Univ of OK)
    Roberts Proton Center Philadelphia PA

    Fuller Jones

  5. It’s me, and I have so identified myself in posts to the PPML and PP/EBRT forums that link to this site. Based on Fuller’s answer and some personal replies that I have received, I think that I may have been misunderstood. I’m not saying, “Oh, what a terrible thing the protons did to me” (although I didn’t love it). I’m saying that when this happens after proton therapy (and it certainly does, and not just to me), it probably has a spatial distribution that illustrates the way the radiation distributes, and I am one example.

    It would be very interesting to see Fuller’s photo to see if the same was the case for him — i.e. whether the mild effects were confined to the anterior wall. Again, radiation proctitis can occur after IMRT also, and, in that case, might show a more uniform distribution

    By the way, the rectal balloon that I had was likely part of the reason that the posterior wall was protected.

    I want to ask people to read what I said carefully before jumping to conclusions.

    Another way of expressing my point is that you can make all the isocontour plots and dose-volume histograms you want to show the radiation distribution. There’s nothing like the actual human being and his organs to show what the radiation did and WHERE. I think that this can be the basis for a research project. Meanwhile, if other photos get posted, it would be very interesting.

    I was treated at Loma Linda with 79.2 cobalt Gray equivalents.

    Herbert A. Klein, M.D., Ph.D.

  6. Dear Fuller:

    An advisory board is an advisory board, not an equal opportunity commission. Just because every possible opinion on the known methods of treating prostate cancer isn’t represented on the advisory board does not mean that we don’t seek out and receive other opinions.

    We also do not have specialists on this advisory board who are uniquely focused on the use of cryotherapy, brachytherapy, CyberKnife therapy, diet, active surveillance, immunotherapeutics, meditation, herbalism, robotic surgery, HIFU, and a whole bunch of other specific treatment methods.

    The advisory board consists of people who we believe will give us sound and disinterested guidance on the evolution of the scientific and clinical evidence related to the prevention, diagnosis, and management of prostate cancer, not just one or other specific form of therapy.

  7. Herb,

    Guess I was wrong in that response. We are all different, and our bodies have different levels of tolerance to radiation. There also may be a pre-existing condition that aggravates the response to radiation of any type. I apologize for my improper response. But I have read some horror stories about the ACP.

    Fuller

  8. Fuller,
    Apology accepted. But what is the ACP?
    Herb

  9. ACP is “Fat and Stupid Fingers Can’t Type” for ALC Argon Laser Coagulation. Sorry ’bout that.

  10. Regarding the photographs of angiodysplasia … My angiodysplasia was just NOT as severe as that of Dr. Kline. As I said to him, we are all different, especially in physiology, and so results vary. The point is that Dr. Kline’s photo is NOT the norm following proton radiation for prostate cancer.

    Most people that pursue proton therapy for prostate cancer do NOT have severe bleeding problems, and most definitely do NOT require argon laser coagulation to address them if the bleeding does occur.

    I myself had one episode with very minor bleeding during a bowel movement about 6 months post-proton radiation. Per most of the patients reporting to Bob Marckini’s BOB organization (over 4,000 now), this is the norm, not the exception. The exception would be those resembling the case reported by Dr. Kline.

    My own photo, which can be seen if the reader clicks here, was taken during colonoscopy in December 2007, 9 months after proton radiation. The descriptions shown are those of the attending physician.

    Thanks,

    Fuller.

  11. Fuller,
    Of interest, as you told me, your angiodysplasia was, like mine, localized to the anterior wall. That is the point I was trying to make, and I wonder if analogous photos from IMRT patients would show a more generalized pattern. So you are case number 2 in the series, and definitely the winner of the beauty contest (:-).
    Herb

  12. I had 38 proton treatments at MD Anderson in Houston in November 2008. It was my first treatment for very early stage prostate cancer. I had no side effects until 6 months later.

    I experienced severe rectal bleeding for the next 4 months and considerable discomfort. My doctor at MDA suggested that I wait another 6 months and the effects should go away or I could undergo argon plasma coagulation (APC). I chose the APC over his choice and knowing that the side effects (rectal discomfort) might be worse for a while).The signs of radiation proctitis were considerable and the doctor said I would need a second APC.

    I just thought I hurt before … but the bleeding did stop. As a result of the severe pain and continued swelling, I received 50 hyperbaric oxygen treatments. These treatments finally worked 4 months later. … My doctor said that this healing could have been natural as his 6 month theory had passed. … BS.

    Now that I am healed and have no other problems except a higher PSA than we would like 2 years post treatment (5.4 before treatment and 3.2 on my 2-year anniversary [10-01-10]), I would still choose protons. It is my opinion that I was one of the unfortunate ones that had this bad side effect.

    I guess the risk of radiation proctitis is greater than advertised and the treatment for that is maybe worse than healing on it’s own?

    Duane Durham

  13. I too had 38 proton treatments (at M. D. Anderson) ending in January 2009. In May 2010, I developed a case of rectal bleeding (radiation proctitus) that lasted until I had APC treatment at Johns Hopkins in Maryland this month. The bleeding ceased after APC treatment. I was told by my doctor at M. D. Anderson that radiation proctitus occurs in approx 10% of the proton patients. My current PSA is low at 0.3 ng/ml and if I had to make the choice again, I would still choose proton therapy.

  14. Having posted that picture of my radiation proctitis back in August 2009, I wish to note, for your interest, that a contrasting image appears in a recent issue of the New England Journal of Medicine, evidently from a patient who received photon radiation (details not given), in which the changes are more extensive around the circumference. That case likely was not treated by the most modern method of photon radiation.

    My purpose in posting these images, I wish to emphasize again, was not as an argument for the superiority of one method over another, but rather for the utility of such pictures in demonstrating the way the dose distributes.

    It has also appeared to me that radiation proctitis is not rare after PBT. How it compares with the best available photon therapy in this respect, I don’t know. My APC was an unmitigated success.

    I am interested in new developments in pencil beam PBT and hope that they will decrease such side effects.

    Herb

  15. Dr Klein:

    It took me a while but it looks as though I have located a genuine expert who knows exactly what I have been talking about (i.e., the condition of my colon).

    I can tell you there are strong similarities beween your pictures and mine with some (minor?) differences, but I do not possess the technical knowhow to send you mine. I assume I have what you call angiodysplasia.

    I have been problem-free 28 months post-treatment. Can I reasonably expect to remain problem free? What are the long-term implications of this condition. Are proctitis and angiodysplasia related? Similar? Any additional information you can provide would be very much appreciated. Thank you so much for your response thus far.

    Don O.

  16. Don,

    The following are my opinions on this subject:

    I would consider angiodysplasia to be the word for the tissue changes that are associated with radiation proctitis. Since the procedure that cured my bleeding, I have not worried about my angiodysplasia (which is likely worse than yours). My bleeding didn’t start until many months after the treatment, though. I imagine that a great many men who have had photon or proton treatment for prostate cancer have angiodysplasia of one degree or another and one pattern or another, with or without problems from it. I haven’t seen a publication documenting this, however. I think it would be quite interesting. I heard opinions that my bleeding would and that it wouldn’t go away spontaneously, the latter from the gastroenterologist who fixed it, after many months of nuisance. Dr. Rossi of Loma Linda advised against biopsying such areas because of risks (perforation, I would think). I can’t guarantee that you will never bleed, but also my guess is that that area will never be truly normal.

    Here is a link to a report of bleeding 10 years after photon therapy (most likely by an obsolete method):

    Radiation for prostate cancer likely creates a small increase in the risk of cancer in tissues that it doesn’t kill, including but not limited to the adjacent bowel. The overall increase is probably lower with proton than with photon therapy. That consideration goes in the plus column for choosing protons. Incidentally, I take about 5000 IU of vitamin D3 daily, enough to maintain a 25-hydroxyvitamin D level of about 55 ng/ml, for a number of reasons, one of them being evidence that it decreases the risk of colon cancer in general.

    In short, I think your gastroenterologist is right on target, including scheduling you for follow-up colonoscopy; and my final word of advice, for what it’s worth, is: Don’t worry.

    Herb

  17. I am reading about a lot of rectal problems after proton beam radiation treatment (PBRT). Do you have the same kind of problem after CyberKnife treatment?

  18. James:

    All forms of radiation therapy come with some degree of risk for rectal problems. However, you need to appreciate that the data you are reading about come from men treated many years ago. It would be generally true to say that the side effects of all forms of radiation therapy as used today are significantly lower than they used to be.

    No one is in any position to tell you with accuracy whether there is a noticeable difference between the risk for rectal complications between PBRT and CyberKnife therapy as they are used today, but if there is I would be surprised if it was very much if both techniques were carried out by skilled personnel.

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