It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Prostate Message Board

  • EBRT Experience - Input Requested

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 07-24-2009, 09:31 PM   #1
    deoise
    Newbie
    (male)
     
    deoise's Avatar
     
    Join Date: Jul 2009
    Location: Lafayette, LA, USA
    Posts: 2
    deoise HB User
    EBRT Experience - Input Requested

    If someone has had EBRT (IMRT, IGRT, or any type other than Proton), can you share:

    1) how long ago,
    2) your experience with effectiveness in making you cancer free,
    3) short-term side-effects, and
    4) long term side effects.

    Thanks.

     
    Sponsors Lightbulb
       
    Old 07-26-2009, 07:51 PM   #2
    gregge
    Junior Member
    (male)
     
    Join Date: Oct 2008
    Location: Miaoli, Taiwan
    Posts: 37
    gregge HB User
    Re: EBRT Experience - Input Requested

    Hi Deoise,

    I was diagnosed with prostate cancer in November of 2007 (PSA of 66.04, Gleason 7, stage T3b with invasion of seminal vessicles and lymph nodes.) I started hormonal therapy immediately, but also underwent radiation therapy (IGRT) for eight weeks from March-May of 2008. (80 Gys)

    Effectiveness: So far, it seems to be doing the job. I wasn't as responsive to my first year of hormonal therapy as the doctor would have liked, yet my PSA has continued to drop - even though I've been off hormonal therapy for seven months now. (PSA presently at .26.) The doctor thinks this continued drop is due to the success of the radiation therapy.

    Short-Term Effects: Honestly, not as bad as I had imagined. The first few weeks, pretty much nothing at all. It was during the last few weeks that I experienced some pretty severe diahrrea (which medicine controlled very well) and fatigue.

    Long-Term Effects: It's a little hard for me to sort out the radiation side-effects from the hormonal side-effects. That said, I've expereinced some rectal bleeding (once), mucus in my stool (every few months), and blood in my urine (twice.) As I understand it, this is pretty much expected during the second year after treatment. (Which is where I am right now.) There has also tended to be a bit of fatigue that accompanies these things.

    Well, hope this helps. If you have any more questions, please don't hesitate to post them on this board. The guys here are fantastic in giving helpful answers.

    Gregg

     
    Old 07-28-2009, 06:04 PM   #3
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Fountain Valley, CA, USA
    Posts: 3,007
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: EBRT Experience - Input Requested

    Hi Dennis,

    Greg did a great job of responding to your questions, and I hope you get more replies that will enable you to see the range not only in options and outcomes, but also in circumstances. That last area is the one that is really critical.

    It's hard to even notice differences in cases during the early month or two after diagnosis, even if you are making an effort to learn, let alone to appreciate what those differences mean. But if you are truly looking to become an empowered patient, that's what you must do.

    Did you notice that Greg is facing a challenging case? He and I (who rejected radiation before it had a chance to reject me) can only envy your very low-risk case characteristics. There should come a time when you begin to believe that just about any option you choose is going to have an outstanding chance of success in your particular case, provided the treatment is competently performed. That's your question #2.

    In addition to getting some direct feedback from us patients, which is always good because it is heavily flavored with real personal experience, you can try books like "A Primer on Prostate Cancer - The Empowered Patient's Guide," which I believe you wrote that you have. Such books, written for patients, help you digest and navigate the large amount of medical research that has been published.

    However, you may be like me and want to look at the actual sources yourself. You can do that by going to www.pubmed.gov, a free source we can use on this board because it is Government sponsored (paid for by our tax dollars), and searching.


    Quote:
    Originally Posted by deoise View Post
    If someone has had EBRT (IMRT, IGRT, or any type other than Proton), can you share:

    1) how long ago,
    2) your experience with effectiveness in making you cancer free,
    3) short-term side-effects, and
    4) long term side effects.
    ...
    For example, if you search for (without quotation marks): " prostate cancer AND IMRT ", you will get 554 hits (as of this evening). That's probably a couple more than you would like to look through, so you can try limiting it more, such as, with " prostate cancer AND IMRT AND low-risk ", which narrows the list way down to just 15 hits. I just looked over that list, and some of the studies are right in line with your questions.

    Here's hit #2, as of this evening, just to show you how it works. (It will stay #2 until more publications are added that meet the search criteria.)

    Biochemical control and toxicity after intensity-modulated radiation therapy for prostate cancer. Liauw SL, Weichselbaum RR, Rash C, Correa D, Al-Hallaq HA, Pelizzari CA, Jani AB. Technol Cancer Res Treat. 2009 Jun;8(3):201-6.

    As you might expect, these studies can be a little hard for us patients to understand, sometimes even impossible, but I think you will be surprised with how much you can get out of reading the brief descriptions (abstracts) that you can access simply by clicking on the blue hypertext authors lists.

    In hit #2, biochemical control means, in simple terms: success. It actually means the biochemical evidence that cancer has not recurred; almost always PSA evidence is involved, but there are other kinds of evidence too. "Toxicity", as you can probably guess, is the medical research equivalent of side effects and complications. Hit #2 describes experience with IMRT at the University of Chicago, reported in 2009, for 130 patients. Even though I searched for low-risk patients, this study had a combination of risk levels: 28% low-risk, 53% intermediate risk, and 19% high risk. The average follow-up was 53 months, so you are seeing well over four years of outcome after treatment; that's pretty good, and enough to project longer term outcomes.

    Now for the bottom line(s): for low-risk patients like you, 97% were free of recurrence at the five year point. Here's what they said about side effects, with my comments in blue:
    "... Therapy was well tolerated with no Grade 4 toxicity and limited grade 3 GI or GU toxicity. Side effects are graded from 0 to 4, with, in my terms, 1 being mild, 2 being moderate - somewhat burdensome but quite tolerable without medical intervention, 3 burdensome enough to call for medical help, and 4 being significant injury or a significant medical problem. The Primer addresses RT side effects in several charts, such as on pages 116, B16, and B17. Therefore, the report of the study is saying that there were no severe (Grade 4) problems and only limited grade 3 proglems for the GI (gastro-intestinal) or GU (genital-urinary) systems. In radiation side effect outcomes, the key areas are early (acute) effects and late effects (your questions 3 and 4) in the GI, GU and rectal areas, and the next sentences address this breakout, also giving us the exact information used in the previous general statement. Acute Grade 3+ GI and GU toxicity rates were 0% and 2%, and maximal late Grade 3+ GI and GU toxicity rates were 5% and 6%, respectively. Late rectal toxicity was associated with higher volumes of RT to the rectum. By last follow-up late Grade 3+ toxicity was 2% for both GI and GU systems. To me, those are highly encouraging numbers, especially for somebody like you, as those numbers apply to all the patients, including intermediate and higher risk patients, and those patients are almost certainly the ones who account for the small incidence of 3+ toxicity.

    Here is the conclusion:
    "In conclusion, patients treated with IMRT for prostate cancer have excellent rates of biochemical control and low rates of severe toxicity of treatment." Yup.

    Sometimes www.pubmed.gov gives us free links to the entire research paper, which lets us see the exact details, often including breakouts of results for each risk group, and almost always including detailed and informative graphs.

    While this study represenents results at just one institution, you can look at similar results from other institutions and get a feeling for trends. As a once quite ignorant but now savvy patient, my impression is that the results in this study are pretty typical for low-risk patients treated with today's technology.

    Is active surveillance still on your list of options? That's the approach where you put the cancer on probation with careful monitoring, and if it misbehaves, you whack it with curative therapy. We now have research from at least a half-dozen major programs (including leadership from some renowned surgeons at internationally famous surgery centers) showing that about two thirds of patients are able to remain in these programs long-term, hopefully unitl the ends of their lives, while about one third end the probation with highly successful curative therapy. The key is for patient's to fit the profile of those who do well, and in my layman's eyes, you fit that profile.

    Take care,

    Jim

     
    Old 07-29-2009, 05:31 PM   #4
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Fountain Valley, CA, USA
    Posts: 3,007
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: EBRT Experience - Input Requested

    Hi again Dennis,

    There are a couple more things about your case that I thought you would like to know.

    Regarding your questions:


    Quote:
    Originally Posted by deoise View Post
    If someone has had EBRT (IMRT, IGRT, or any type other than Proton), can you share:

    ...
    2) your experience with effectiveness in making you cancer free,
    3) short-term side-effects, and
    4) long term side effects.
    ...
    One factor that has quite an influence on at least a couple of therapies - radiation and cryo surgery, is the size of the prostate. At the moment, yours is very large, at 90 gm (or cc). Brachytherapy (seeds) requires a smaller prostate so that the seed insertion needles can get to the entire prostate through the opening provided by the pubic arch. (I think cryo surgery may also face a prostate size limitation, but I'm not sure about that; the Primer briefly mentions gland volume as a possible adverse issue for cryosurgery on p. 129.) The prostate can be shrunk, to an extent, by hormonal blockade, and there is at least one doctor (Dattoli) who has developed techniques for treating somewhat larger prostates than can normally be handled with seeds. But perhaps that size limitation is a reason you are focusing on external radiation.

    Another issue with seeds and large prostates is a greater likelihood of side effects. The Primer discusses this on page 99: "Additionally, the prostate gland volume is an important issue to consider in preventing radiation-induced side-effects. Patients with prostate gland volumes exceeding 35-40 cubic centimeters (cc) may experience more radiation injury to the rectum and to the bladder due to radiation scatter because of the arger area that needs to be radiated. In addition, more seeds are used for larger gland volumes and this too may increase the risk of radiation side effects as well as increasing the cost of the procedure."

    (On the other hand, minimal tumors in the prostate - what you appear to have - have an advantage in that there is an abundant supply of oxygen to the cancer cells, and radiation uses that oxygen to create free radicals and kill the cells. Dr. Charles "Snuffy" Myers discusses this in his Prostate Forum newsletter, Vol. 10, #6, copyright March 2008, page 7.)

    Due to the potential problems posed by the large size of your prostate, it appears to me that sound practice would be to reduce the size of the prostate before radiation, with a course of hormonal therapy. The Primer discusses that on page F4, noting that "Within three to six months after starting ADT [hormonal therapy], the gland volume can be reduced dramatically with volumes of 100 cc brought down to 30 to 40 cc ...." The flip side is that it appears that radiation for you without hormonal therapy would be an unsound approach, boosting the risk of side effects due to radiation scatter, especially to the bladder and rectum. (But keep in mind that I'm a layman with no enrolled medical education.)

    Here are a couple of encouraging facts about your case. First, your PSA is remarkably low in view of the size of your prostate. I realize you are concerned about the rise, but the rule of thumb established by research is that healthy prostate tissue produces about 0.066 units of PSA per gram or cc. Therefore, 90 grams X 0.066 = 5.94 units of PSA, and you are well below that figure. That suggests that a minimal amount of extra PSA is being contributed by cancer, and that is fully consistent with the biopsy finding of only 5% of two cores that had cancer out of 22 total cores. Also, your PSA density number is very low. PSA density is calculated by dividing the PSA number, here 4.5, by the gland size, in this case 90; 4.5/90 = 0.05. That is outstanding. One Johns Hopkins paper (in 2006) used <0.1 versus > or = 1.0 as the cut point for lower versus higher risk. Once again with this added evidence using the rule-of-thumb and density, your case looks highly appropriate for putting the cancer on probation under an active surveillance program. Just thoughts - your decision of course.

    Take care,

    Jim



     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    any experience with Mometasone Furoate darthlady Fibromyalgia 0 04-20-2010 10:06 AM
    Here are my ultrasound and lab results.....any input? AlexaIn2006 Thyroid Disorders 4 03-13-2009 02:01 PM
    I'm very scared right now...please help with any input LucyPearl Cancer: Breast 5 04-24-2008 08:30 AM
    Arthroscopy-Questions and Input Requested sparkadoodle TMJ Disorder -TemporoMandibular Joint 2 12-04-2007 08:29 PM
    Uncertain about possible acute panic attack and anxiety -- Any input?(long) kerry4 Anxiety 4 10-13-2007 10:37 PM
    BAD Day Care experience!!! girlnextdoor Parenting Issues 7 08-27-2004 01:50 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 02:11 AM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!