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Prostate cancer - Proton Therapy

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barney34567
barney34567

Has anyone recent experience with proton therapy for high grade PCa? I am interested in the cost and the side effects experienced eg impotence and incontinence. Also how long does the benefit last before further treatment is required?

1 like, 17 replies

17 Replies

  • ES28567
    ES28567 barney34567

    Posted

    Call Loma Linda and tell them you are interested in becoming a patient. They will send you information including a great book and also names with emails to contact men who have undergone the proton treatment both recently and many years ago. Also, call the proton Center in Florida. I don't remember their name but they will also send you a list of men you may contact to survey their results. (I don't know if they use proton therapy on high-grade cancer). Also, with any form of radiation, incontinence and ED usually do not show up right away after treatment. It is more likely to happen 5 to 10 years later. My understanding is once the side effects start to appear, they cannot be reversed. One other side effect is possible rectal bleeding but from the men I have talked with, those who experience this say it is minor. From what I have read, and the men I have talked with, if you choose radiation treatment, it seems that proton therapy has the least severity of the side effects.
    • barney34567
      barney34567 ES28567

      Posted

      Thanks for your feedback. I will chase up Loma Linda. I have been in touch with Florida and they are very expensive. Do you know how many years the benefit of proton lasts before more treatment is needed?

      As an aside, as I see it, both radiation of any type and surgery leade to ED and impotence but radiation delays their onset.

    • ES28567
      ES28567 barney34567

      Posted

      Proton therapy is expensive no matter where you go. You are correct, ED is delayed but with radiation treatment still eminent. That's why I am looking at HIFU.
    • barney34567
      barney34567 ES28567

      Posted

      I see. May I ask what is your Gleason and why it seems are not keen on surgery?
    • barney34567
      barney34567 ES28567

      Posted

      I read that in the US HIFU was approved by the FDA only in Decemebr 2015. Until then the FDA was skeptical. Where are you considering undertaking it?
    • ES28567
      ES28567 barney34567

      Posted

      Dr. Suarez now does the procedure in Miami and Dr. Scionti does it in Sarasota. I believe they are the most qualified to perform HIFU in the US. Dr. Suarez has been performing HIFU for the last 12+ years at some of the nearby island hospitals (I think Cancun but not sure) until it was finally approved in the US. Dr. Suarez stated in an email that he has trained all the doctors in North America who perform the HIFU procedure. I don't know for sure, but it is my understanding that Dr. Scionti was instrumental in getting HIFU, FDA approval.

      There is also research going on to use HIFU for other treatments such as brain cancer.

      If you look these doctors up, they both have good websites with video of how the procedure works and testimonials from men who have had the treatment and what the procedure was like.

      So, the downside is...it's still relatively new (no long-term,15yr. Results yet). It is focal so there is a chance some cancer could be missed and a repeat procedure needed. It is not available on large prostates (although there are methods to reduce the prostate so HIFU can be performed. And last, most insurance in the US still will not cover the cost even though it is FDA approved.

      To answer your earlier question, my Gleason score is 6. One side is cancer and the other is pre-cancerous. The doctor and I are discussing if we should do both sides at once or just the cancer. Doing both areas at once has a higher chance of impacting quality of life while not doing both sides leaves a 25% chance that the pre cancerous area becomes cancerous. It's a tough call. The good news is HIFU can be repeated (so I can always have the other side done later) and HIFU does not disqualify you for other procedures should someone elect to pursue radiation or prostatectomy in the future.

      There is no cutting, no radiation, does not disqualify other procedures, it can be repeated, and the recovery is quick (in most cases you can get up and go have lunch or dinner).

      So those are the reasons why I'm electing to have the HIFU procedure.

    • barney34567
      barney34567 ES28567

      Posted

      Thank you for your detailed response. Do you know if there long term studies of proton therapy? As you know I am looking into Proton therapy for my high grade condition. Most therapies offer five year studies which really doesn't mean much.
    • ES28567
      ES28567 barney34567

      Posted

      As far as I know, proton radiation (for prostate cancer) has been done less than 15 years so no long term studies have been available. But Loma Linda has patients that were treated well over 10 years and some are getting close to 15 years. When you get info from them, you should also receive a list of patients that have agreed to talk to men who are considering proton therapy. Call them. See if they are cancer free, and be sure to ask if the radiation treatment caused incontinence, ED, or rectal issues. Some of the men I have talked with (but only after 5 years) have had no or only slight issues. Those over 5 years had mixed answers of no issues to mild issues with rectal bleeding ins or ED. To be fair, the men I talked to could not say if the ED was due to the radiation or old age. Loma Linda will send you a book written by a man who takes you through his journey from just prior to being diagnosed, through his research, his experience of the treatment and just a wealth of information. Call them, get it and read it.
    • Roger2Dodger
      Roger2Dodger ES28567

      Posted

      What does it cost to have this procedure done. Since most insurance does not cover the cost? Sounds great! No cutting no radiation. Go to Dinner afterwards, sounds to good to be true. Not trying to be cynical, just amazed.

    • barney34567
      barney34567 ES28567

      Posted

      I wil chase them up. I wrote to them a couple of days ago after you first suggested LL.
    • ES28567
      ES28567 Roger2Dodger

      Posted

      Rodger,

      The quote I received for proton radiation was in the $62,000 range. I don't remember how much they required upfront and then they make automatic withdraws from your checking account. HIFU is $25,000

      Proton is radiation therapy. It is just a different type that in theory does not do as much damage to surrounding tissue. This is because they use "protons" instead of "photons". Protons penetrated the body so it is still external radiation but the radiation stops traveling when it gets to its destination. So, the radiation does not continue to travel through the body and therefore does not damaged additional tissues on the other side of the target. Personally, I think if a person is going to have external radiation, it is the way to go. But don't be fooled. It is still radiation and still damages healthy tissue and does cause side effects. Also, the entire process is treatment 5 days/week for 4 to 6 weeks straight so it's not just one quick treatment. If you don't happen to live near one of these centers, you must disrupt your life and move to their location for a good month or so. (However, I think a month out of your daily routine is more than a fair trade off to save your life, but it's not just a one day procedure and then on with your life). Also, like ALL radiation treatments, once the prostate has been cooked, there are very very few options left if the cancer comes back. You can still have a prostatectomy but it is messy, and takes a specialist far beyond the average urologist. One thing about the HIFU procedure Is it can be performed (either before or after radiation treatment). This is NOT radiation and instead uses ultrasound. It is "focal" so there are some advantages and disadvantages. It is also limited as to the size of prostate it can be performed on. However, as I stated, it can be performed after radiation therapy (which is rare) and HIFU does not disqualify someone from any other procedure they need should the cancer come back. Also, unlike many of the other procedures, HUFU is repeatable. Of all the procedures available, I think Proton and HIFU are the best options.

      Unfortunately, insurance companies are SLOW to embrace new and better procedures until the evidence is so great they can no longer deny it. They don't think about the best interest of the patient (who also happens to be their CUSTOMER)...they only think about money. Both these procedures are FDA approved, have been performed close to 15 years now with proven results just as good as a prostatectomy with BETTER quality of life. Yet insurance only cares about saving a buck. I hate to say it but with all the media pressure on the importance of "women's health" if this was a procedure for women, it would have been covered by insurance AT LEAST 2 years ago!

      Come on insurance...get you head out of your prostate!

      Ok...now ask me how I really feel. Lol

  • nathan25612
    nathan25612 barney34567

    Posted

    I am 77 years of age and in April of 2011 (5 years ago) I was treated at the Procure Cancer Center in Oklahoma City, Ok. with proton therapy for prostate cancer. During the treatment time I experienced no pain or discomfort and worked every day. After 5 years, I have had no side effects as well as no regrets. I am also acquainted with many fellow advocates who have been treated with the same results. Proton therapy has proven to be very successful with hundreds of men who are also experiencing no side effects. Of course, the earlier prostate cancer can be deteted through regular yearly checkups, the less likely one will experience complications or additional types of therapy. Early diagnosis and treatment with protons often never requires any future treatment.  As far as the cost is concerned, my medicare insurance and supplemental insurance paid for my treatment completey. The best way to know the cost for your treatment is to contact your insurance company and work with them through your provider who you have selected for treatment. I have never regreted, for one secone, my experience with proton therapy!
    • barney34567
      barney34567 nathan25612

      Posted

      Thanks for your answer. As an Australian if I go for proton therapy I must pay cash as Australian Insurance only covers treatments provided in Australia. And it isn't offered in Australia. 

      I have two questions: why did you chose procure in Oklahoma City and not a larger facility?

      And, assuming you have  proton therapy and in 5 years your PSA rose ( let's assume you are 50 or 60) does one repeat the therapy? Does one do something else? If so what?

      Assume a high grade cancer.

    • nathan25612
      nathan25612 barney34567

      Posted

      I chose to have my proton therapy here in Oklahoma City, Ok. because I only live about 8 miles from the treatment center. Also, you can google Procure Prostate Center, Oklahoma City, Ok. and see that it is a very large center with about 72 people on staff. As far as one's cancer being in remission and returning, you would have to check with your doctor to see what type of treatment you would need for reoccurance. Alot depends on your particular situation and your individual needs.

    • barney34567
      barney34567 nathan25612

      Posted

      Thanks for the reply.

      You are right that I should check with the physician as to the PCa returning. My assumption is that its return depends on how successful the initial treatment is and I am now trying to compare the success rates across all the various therapies. I mean if one solution keeps it away for 5 years and another say for 8 years then that is important data for me to include in my analysis. Taking into account the side effects of course.

      can you say what was your Gleason score?

      when you say no side effects are you saying that sexual function, bowel and urinary do not suffer at all? Or suffered only a little which was tolerable.

    • nathan25612
      nathan25612 barney34567

      Posted

      My Gleason score was 7. I've had no change in sexual function, bowel or urinary function. I take Tamsulosin for urine flow but was taking it before I did the theapy. Keep in mind I'm 77 and not as able to 'perform' like I did when I was much younger; however, my sexual desires have not diminished. 

    • barney34567
      barney34567 nathan25612

      Posted

      Thanks for the detailed reply. My concern is the effectiveness of proton therapy on a Gleason 9.

      good to hear about bladder and bowel functions being unaffected  by PT. this I think is the strength of PT over conventional RT

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