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  • dad has been diagnosed, i have questions!

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    Old 11-30-2006, 01:14 AM   #1
    moth
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    dad has been diagnosed, i have questions!

    Hi , moth here

    dad has very recently been diagnosed with p.c and I don't know much about whats going on. I have just moved from Sydney to the country to help out with family business while he gets radiation treatment soon... He is currently taking hormone tablets and is a bit grumpy etc... we are in very isolated town without much professional advice on hand and I'd really love some advice from others on how I can help my Dad keep his spirits up, motivate him to be healthy and what sort of activities and things i can do that will help him both physically and mentally - very in the dark about things.

    would love any suggestions

     
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    Old 12-26-2006, 09:37 AM   #2
    floridarobert
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    Re: dad has been diagnosed, i have questions!

    What your doctor does not tell you.

    In December 2005 I was diagnosed with prostate cancer. The urologist game me a pamphlet which spelled out the choices for treatment. After reading the pamphlet I started to read via the Internet and found more treatment option than the pamphlet recommended.

    In the U.S. the treatments are typically 1. watchful waiting; 2. radiation (several kinds) and 3. surgery to remove the prostate.

    1. Watchful waiting capitalizes on the usual slow growing nature of prostate cancer. If one is over age 70 or 75 one might die of something else before prostate cancer kills. The operative word is “might” as the available information is statistcaly based. If a high percentage of people with prostate cancer will experience slow growth of the cancer, that does not rule out the small percentage that might have cancer that is spreading to other parts of the body. It is not easy to distinguish slow growing from fast growing cancer. In addition men are living longer these days; waiting is risky.


    2. Radiation either by beam or by wire of one source or another tend to kill the cancer but also carry some unwanted side effects: impotence and incontinence (fecal and/or urinary).

    3. Radical prostatectomy carries similar side effects as radiation.

    After reading about the above options I was not happy with any. I kept reading and found hormonal treatment, freezing, and ultrasound. Hormonal treatment and freezing (cryo surgery) which both carry significant levels of unwanted side effects. High intensity focused ultrasound(HIFU) appeared most promising.

    HIFU

    Hifu has been used in Europe and Asia more than a decade to treat benignly enlarged prostate. More than a half dozen years ago this method has been used for treating prostate cancer. This is the least invasive treatment for prostate cancer that carries the possibility of a cure. There is no incision and side effects appear to be less than other methods. Since this is experimental one is engaging in a degree of risk since large numbers of patients over many years have not yet been studied.

    From my amateurish reading of literature on the internet, it appeared to me that HIFU offered similar survival rates to someone in my situation (T1C; psa 4.6; Gleason score of 6) with less likelihood of such side effects as impotence, incontinence, and fistula. Perhaps radical prostatectomy has a slightly better cure rate.


    Among HIFU machines, I chose Sonablate over Ablatherm largely because Sonablate gives the physician a live image.

    I emailed a number of different practitioners and researchers who use Sonablate in Italy, England, Germany, U.S.A. and Japan. Most responded quickly and were willing to answer my questions.

    I asked each physician about price and how much experience they had. The American physicians were the most expensive($20,000 for treatment in Dominican Republic or Mexico), followed by the English, Japanese and finally two Italians. Dr. Durso in Torino, Italy was willing to do the procedure for about $7800. With my love for Italy and a good price, I nearly chose him. I then learned there was an “upgrade” to the machine; when I asked him about the upgrade, he did not respond. I finally chose Dr. Uchida who not only has the most up to date equipment, but he has more experience than any other person working with Sonablate. For $10,000 I could employ the services of one of the most respected researchers and practitioners in the field.

    We arranged for the procedure and I flew to Tokyo on my spring break. I took my wife and daughter so we could have a little tour of Tokyo, a welcome distraction. Dr. Uchida met me in the lobby of his hospital, Tokai University Hachioji Hospital. Hachioji is a suburb of the sprawling city of Tokyo. I felt as though I was taking the subway to Queens from Manhattan.

    Dr. Uchida gave me a room in which my wife and daughter could spend the night. He spend two hours working on me with the Sonablate from approximately 5- 7 p.m. I felt very little except the insertion of the catheter through the abdominal wall into by bladder. That felt like someone was trying to jam a screwdriver through my belly. The next day I was ready to leave the hospital and continue my tour of nearby parks, museums, and temples. Unfortunately the tube of the catheter prevented me from closing my pants! I was walking around Tokyo with my pants unbuttoned and my shirt tails out covering my front.

    The catheter was the most uncomfortable part of this experience, though I never doubted that it was a worthwhile trade off. I complained to Dr. Uchida who gave me a more flexible tube. It was still irritating but tolerable. Over the next 3 weeks, increasingly more urine was coming out of my penis than the plastic tube.

    I returned to Florida after about 10 days in Tokyo and sought a way to remove the catheter. I had made an appointment with the local urologist who had called for a biopsy. When I showed up for my appointment to remove the catheter, he refused to see me since I had gone to another doctor. However annoying that was I called a number of other doctors and found two urologists willing to work with me.

    I had my psa tested every 3 months, and it went from 4.6 biopsy, to 5.2 at time of treatment to 1.2 two months after. Two more tests a few months later yielded 1.3. I had a biopsy 12 months after the first and 9 months after the HIFU, and all 12 samples were benign. Such a biopsy does not guarantee that I am cancer free, but I am in pretty good shape to face the future. Erections have been weaker than prior to the treatment, but I can attain and maintain an erection. There is no ejaculate, but I can climax. Climaxes are slightly weaker than before. I tried the three drugs for erectile dysfunction: Cialis, Levitra, and Viagra each for daily dosage for several weeks. Levitra worked best for me. I have no other side effects.

    I would be happy to talk to anyone interested in HIFU. I am not an expert but I have acquired valuable experience.

     
    Old 01-04-2007, 04:57 PM   #3
    emil20
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    Re: dad has been diagnosed, i have questions!

    Wow great info. My grandfather just finished radiation. We were showing him some articles and info on the web and he was like my doctor never told me any of this. I will be sure to have him read over your info. He goes back in 3 weeks for his pet scan so we are hoping its clean!! Thanks
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    Old 01-04-2007, 04:57 PM   #4
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    Re: dad has been diagnosed, i have questions!

    Wow great info. My grandfather just finished radiation. We were showing him some articles and info on the web and he was like my doctor never told me any of this. I will be sure to have him read over your info. He goes back in 3 weeks for his pet scan so we are hoping its clean!! Thanks

    oops sorry for double post got some weird error!
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    Last edited by emil20; 01-04-2007 at 04:59 PM.

     
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