Proton Therapy

Hello,

I am 52 years old, Gleeson 6, psa before biopsy was 4.07 total, T1C stage.

A couple of days ago I visited the Proton Therapy center at NorthWestern in Chicago.

Has anyone had there treatments done there and can you share your experiences.

Also I was wondering what kind of side effects did you get from your treatment, short and long term.

I can travel to any Proton center in the country so I just trying to determine the methods that are being used at each faciltiy and which was is the safest for the patient for short term and long term side effects.

I.E Loma Linda uses the balloon, more treatments at a lower dosage, they make a special molded to position in place.

NorthWestern uses a hydro gel spacer instead of the balloon, they insert gold seeds into the prostate to determine where to apply the radiation and they use a higher dosage of radiation and less treatments.

I have been talking to the intake nurses at these centers and I am not really getting a clear answers on which method is least likely to expose the patient to fewer side effects. My guess is the method used by Loma Linda is the one that is the safest for the patient. Unforturnatlely Loma Linda is a stickler with my BCBS but I have been approved here in Illinois where I reside.

15 Replies

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  • . May I suggest that you (immediately) get a second opinion on your pathology . Which means, send your biopsy slides (all of them...not just the ones that were positive to another pathologist for a second opinion. According to a recent talk by well know pathologist Dr Epstein at Johns Hopkins ...aprox 15-20% of all prostate cancer pathology reports can be written up differently on second opinion. The pathology report guides your treatment choice, so it's critical to get as close to truth about your cancer as possible. More information and guidance on how to get a second opinion here: malecare.org/second-opinion...

  • Thanks Darryl,

    I read Proton Bobs book about 2 week ago and he said to get a second opinion.

    Slides are already on the way to John Hopkins.

  • With your age and current stats, you may also want to consider active surveillance vs seeking any form of active treatment in the near term. Discuss with your urologist after getting a second opinion on your pathology as suggested by Darryl.

  • Thanks will do.

  • Steve,

    When the U.S. Preventive Services Task Force (USPSTF) recommended against PSA–based screening for prostate cancer, they were trying to protect men like you from over-detection & over-treatment.

    Active surveillance should be the norm for a Gleason 3+3.

    But some 3+3s do progress, so (personally) I would look into the 4Kscore test for reassurance.

    4kscore.com

    -Patrick

  • Thanks Patrick, I will check it out.

  • Hi Steve 3312,

    I am glad to hear you are looking at Proton Therapy. You are very young and have a long life ahead of you. I was 72 when I was diagnosed with the exact PSA numbers and Gleason score you have. I was fortunate to find a support group called UsToo. It is a international group, USTOO.org, based out of Chicago so I am sure you should be able to find one close by.

    What I like the most about UsToo is that you get first hand information from the Men who have gone through the various treatments for Prostate cancer. No opinions from doctors who make money from their specialty, but the hard real facts about the results of treatments unadulterated, and to the point, real life experiences.

    I was fortunate to have many men who had Proton Therapy that I could talk to about my prostate cancer. They all had the Proton therapy treatments and all had successful results. I went to MPRI center in Bloomington, Indiana for my 45 treatments. At that time their were only five proton beam centers in the US. I lived in Iowa at that time so it was the closest. My wife and I would drive home each weekend and we stayed with my son who lives in Indianapolis. Housing is available at most centers at a reasonable cost.

    During my treatments I stripped wallpaper and painted several rooms for my son. I never had any physical problems relating to my treatments. After my last treatment, I drove home, five hours and said to my wife, " I can't believe that I feel so good after 45 Radiation treatments. The nine weeks flew by and it was a painless treatment.

    Now I am Eighty years old and I am in good health. No side effects whatsoever. My wife and I enjoy an intimate and loving lifestyle. No diapers, no burnt bladders or rectum, no problems whatsoever. You are on the right track! I know their is a Proton Center in Warrenville, Illinois. Unfortunately, MPRI in Bloomington closed because the cyclotron was 40+ years old and needed a complete overhaul and Indiana University decided it would be to costly to build a new facility. Their are Proton Beam Therapy center in Iowa City at the University of Iowa and now the Mayo clinic in Rochester Minnesota has just opened a center their. Please contact me personally if you have any questions. At the time I my treatments BCBS would not pay for it Medicare did. Most center will help you in this area.

    Good luck to You with your decision. Jim

  • Thanks Jim. I am still in the decision making process. Everything I have read about Proton therapy is an excellent choice for someone with my stats. I had a consult at the Warrensville facility and that went well, I am not excited about the putting the spacer between my rectum and prostate and the 4 gold tracking seeds in my

    prostate ... another invasive procedure with small risk of infection. I like the way Loma Linda still does it, no seeds and they use a ballon which is removed right after treatment.

  • Hi Steve,

    Thanks for replying. I was surprised how well the seed implantation went. I expected the same pain as when I had my biopsy. I don't remember any pain. The only pain I had was the biopsy, Ouch! As far as the balloon, After I got over the embarrassment, it was just part of the treatment.

    No question, Loma Linda does it right. Good luck and GOD bless.

    Jim

  • Thanks Jim. I am seriously considering them at this point. Northwestern was good and I am planning Mayo sometime next week, but my mind keeps going back to the experience and amount of cases they have done. I am probally over analzying this but after all my Job title is Programmer Analysts. God bless to you and have a good night.

  • Prostrate cancer survivors describe their experiences of treatment at yananow.org

    Long term proton beam therapy problems may include minor problems with urination or erectile dysfunction. However, compared to surgery, these are small issues. High energy proton beam treatment can require only 28 applications, compared for 44 applications for normal energy levels. Studies are underway to evaluate which is best.

    Short term issues could include blood in urine or in feces, or incontinence, or dribling. All other systems come in to play. If you have kidney issues, you could have a kidney stone, so keep drinking lots of water. Best to continue to exercise to protect the heart.

  • Thanks Booklover7 for the information.

  • There's also the massively helpful Malecare prostate cancer peer to peer support network FYI Malecare is the nonprofit that runs this online community. Malecare.org

  • Whenever I search for information comparing the different treatment modalities I find intense partisanship. Surgery vs. radiation, IMRT vs. brachytherapy, IMRT vs. proton beam therapy (PBT), cryotherapy vs everything else, HIFU vs everything else, and so on. Each has very strong partisans and all sorts of commercial advertising.

    At various points I've thought that some of these issues were complete and settled, for example that cryotherapy and HIFU were both inferior to the other modalities, but even there I'm not sure it's true. There are more recent practitioners claiming much improved cryo and HIFU techniques that are superior to the practices of the past.

    Sometimes the arguments are plausible. For example, the physics of radiation appear to support the claim that PBT delivers less radiation to surrounding, non-cancerous tissue than IMRT for any given quantity of radiation delivered to the radiation target, i.e., the prostate. However whether that really leads to less side effects is a different question that really requires empirical evidence in addition to theory.

    However I don't see the argument for PBT over brachytherapy - which is cheaper and (for low dose brachy) can be applied in a single treatment. With brachy, there should be hardly any radiation damage to tissue outside the prostate. The same would also be true for cryotherapy and HIFU.

    So I always advise people to choose the best doctor they can find rather than the best treatment modality. That might be wrong. How can I tell? But one thing I'm sure of is that an incompetent, careless, or uncaring doctor can do serious damage and have his treatment fail using any one of the modalities.

    The way I would apply this to Steve's specific question is as follows. First, it's likely to me that the doctors at Loma Linda and Northwestern University are both in the excellent category. However, if Steve builds a particularly good relationship with one of the doctors, that might be a good reason to go with his treatment, whichever it is.

    Alan

  • Now I am even more nervous, anxious and uncertain. I need to fully learn to give this problem over to my God, trust him and continue to thank him for the 52 years he has given me.

    Okay this is what I know.

    Biopsy report came back positive for PC (bad news)

    Gleeson 6, PSA before biopsy was 4.3, T1C stage, CT scan of pelvic shows no evidence of cancer, Lymph Nodes look good. (good news for being diagnosed with PC)

    The last routine test the doctor ordered was a bone scan. My urologist said he was 99% that all of these test CT, Bone Scan would come back normal.

    CT of pelvic area came back normal

    Bone scan showed a small suspicious area on the 4th rib cage. (I am a non smoker). I was exposed to second hand smoke when I was a kid.

    They ordered multiple xrays of rib and chest. Results came back inconclusive, report said it could be cancer because of history of PC or it could be an injury to the rib, meaning I could of bumped that area or injured. Anyways fellas I am off to Mayo to see what they have to see, they will probally order more test and light me up like a Christmas tree.

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