Has any one tried or researched HIFU or CyberKnife for treating Prostate Cancer?

cagey
cagey Member Posts: 2
edited March 2014 in Prostate Cancer #1
Hi,

I have recently been diagnosed with Prostate Cancer. I have no symptoms or discomfort whatsoever and my high PSA was detected in a routine annual check. I am 58 and by God's grace quite healthy. Have been a sportsman (squash player) at the national level in India. It appears it is confined within the prostate. The gleason score given by one lab was 4 while from the other lab was 3 + 3 = 6. My PSA when the investigations started was 12.93. Strangely, after being diagnosed with Prostate Cancer and in the midst of consulting various oncologists and urologists, I on my own took another PSA test. The PSA showed significant reduction down to 8.43. This is without any kind of medication. I cut out white sugar, milk. Had soya milk instead. Had lot of green tea. Had 30 ml of Aloe Vera mixed with 30 ml of pomesteen powder (a liquid blend of pomegranate fruit juice, pear juice, mangosteen juice, raspberry, blackberry and blueberry juices and grape seed extract. I do no know how the PSA has shown a downward trend.

I have been wondering as to what would be the best option in my case considering my age and health. I do believe given that all men with early detection of prostate cancer are without symptoms, the impact that treatment may have on quality of life is an important consideration

I have spent the last month researching different options. Funnily, there is a complete divide even amongst doctors - most urologists recommend surgery, most oncologists recommend radiation. The radiation proponents say that radiation technology has improved considerably and also cite the example of Rudy Gulliani (the ex New York Mayor) and Gen. David Petraeus, the present US Commander of Overseas Operations,as having opted for radiation.

However, with my own little research, I have come to know of the increasing popularity of HIFU (High Intensity Focussed Ultrasound) in Europe for organ contained Prostate Cancer. No bloodshed and minimal side effects. In India it has been available only for a year. I have managed to speak with about 8 such patients who have had HIFU done. All of them are very happy. No trauma, no incontinence. Since hormonal injection (that shrinks the tumour almost instantly) is also given for a while (that will cause ED temporarily till it is administered. And the nerves are spared. I believe this is a good option for organ contained prostate cancer. But doctors do not agree saying that enough data is not available. I counter that no negative data is also available on it. The trouble is doctors only peddle what they practise.

Similarly, there is CyberKnife, a form of very focussed and accurate radiation. In this your radiation is over in 3 to 5 days instead of the 6 to 7 weeks in the normal radiation and with less side effects.

It is a tough decision. I am in search of an unbiassed, considered opinion as this decision is most critical. HIFU seems most 'patient friendly', next comes CyberKnife, but will any one knowledgeable please strengthen my belief as there would be more data available in US and / or Europe?

Thanks.
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Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    HIFU is considered an experimental treatment
    in the USA and it does not have long-term safety or effectiveness research,,,,,,Its done in other countries, the cost is 25-30K and generally is not medically covered.

    A question for you how many cores were taken in your biopsy, how many were positive and what was the involvement of each. It may be possible that you are a candidate for active surveillance.

    Ira
  • gkoper
    gkoper Member Posts: 173
    HIFU
    You may qualify for a clinical trial here in the US. Go on their website to see. These trials are being done in Florida. Goodluck.

    George
  • HIFUgal
    HIFUgal Member Posts: 58
    Hi,My husband had HIFU a
    Hi,
    My husband had HIFU a year ago and we've sent in 9 friends to date, all of us are very happy with the outcome, no discomfort, no problems at all, one guy needed Cialis to help out for a while. But, zero incontinence even for a day. The secret seems to be in getting the most experienced doctor, as there's a learning curve, like anything, practice matters. glad to hear you've found others that are happy. I know that International HIFU has an office in Mumbai and somewhere else. I don't know of anyone who also had hormone treatment. It would only be used if the gland is over 40cc, or they give a TURP--to reduce the size. Or, if they are using the Ablatherm then a gland over 25cc would need to be reduced. We had the Sonablate, and I recommend it, a TURP or hormones sounds awful.


    I've found, on the web, 3 guys who had HIFU 2 or more years out and are still fine, I also know 6 guys from the UK who had it 7 years ago and they are still low and stable PSA, no problems. And, i even know a guy who had HIFU with a PSA of 19. His PSA is now 0.1

    We live in Aspen, Colorado, my husband & his friends are like you ~ unwilling to give up sports, they are mountain climbers & skiiers, they had HIFU by Dr. Scionti, in Mexcio. Dr. Scionti is the doctor who teaches HIFU around the world, he's been doing it for 5 or 6 years. He uses both machines but prefers the Sonablate which, I think, is the machine you use in India.

    There's a doctor in Florida who has a Facebook page who says that someday surgery and radiation will be replaced by HIFU.

    I've been told that Cyber Knife won't work for prostate cancer.

    Much luck. I am happy to answer any questions. We are very happy with the decision to go HIFU, we researched it for quite a while.
  • pawpaw3
    pawpaw3 Member Posts: 1
    HIFUgal said:

    Hi,My husband had HIFU a
    Hi,
    My husband had HIFU a year ago and we've sent in 9 friends to date, all of us are very happy with the outcome, no discomfort, no problems at all, one guy needed Cialis to help out for a while. But, zero incontinence even for a day. The secret seems to be in getting the most experienced doctor, as there's a learning curve, like anything, practice matters. glad to hear you've found others that are happy. I know that International HIFU has an office in Mumbai and somewhere else. I don't know of anyone who also had hormone treatment. It would only be used if the gland is over 40cc, or they give a TURP--to reduce the size. Or, if they are using the Ablatherm then a gland over 25cc would need to be reduced. We had the Sonablate, and I recommend it, a TURP or hormones sounds awful.


    I've found, on the web, 3 guys who had HIFU 2 or more years out and are still fine, I also know 6 guys from the UK who had it 7 years ago and they are still low and stable PSA, no problems. And, i even know a guy who had HIFU with a PSA of 19. His PSA is now 0.1

    We live in Aspen, Colorado, my husband & his friends are like you ~ unwilling to give up sports, they are mountain climbers & skiiers, they had HIFU by Dr. Scionti, in Mexcio. Dr. Scionti is the doctor who teaches HIFU around the world, he's been doing it for 5 or 6 years. He uses both machines but prefers the Sonablate which, I think, is the machine you use in India.

    There's a doctor in Florida who has a Facebook page who says that someday surgery and radiation will be replaced by HIFU.

    I've been told that Cyber Knife won't work for prostate cancer.

    Much luck. I am happy to answer any questions. We are very happy with the decision to go HIFU, we researched it for quite a while.

    HIFU
    I am extremely interested in any more information that HIFUgal can send. I would very much like to talk to her. I have talked to Dr. Scionti and would appreciate you sharing any knowledge that you have acquired in this area. It looks as though you have done your research. Thanks
  • LBlanks
    LBlanks Member Posts: 44
    Still Under Study...
    From what I've read, HIFU is still under study and is at least two years away from "standard practice".

    I have a friend that underwent this procedure on an experimental basis and is doing well. Actually, it was done at no cost to him and he ever got a check from the research team doing the procedure.
  • kimodo
    kimodo Member Posts: 1
    HIFUgal said:

    Hi,My husband had HIFU a
    Hi,
    My husband had HIFU a year ago and we've sent in 9 friends to date, all of us are very happy with the outcome, no discomfort, no problems at all, one guy needed Cialis to help out for a while. But, zero incontinence even for a day. The secret seems to be in getting the most experienced doctor, as there's a learning curve, like anything, practice matters. glad to hear you've found others that are happy. I know that International HIFU has an office in Mumbai and somewhere else. I don't know of anyone who also had hormone treatment. It would only be used if the gland is over 40cc, or they give a TURP--to reduce the size. Or, if they are using the Ablatherm then a gland over 25cc would need to be reduced. We had the Sonablate, and I recommend it, a TURP or hormones sounds awful.


    I've found, on the web, 3 guys who had HIFU 2 or more years out and are still fine, I also know 6 guys from the UK who had it 7 years ago and they are still low and stable PSA, no problems. And, i even know a guy who had HIFU with a PSA of 19. His PSA is now 0.1

    We live in Aspen, Colorado, my husband & his friends are like you ~ unwilling to give up sports, they are mountain climbers & skiiers, they had HIFU by Dr. Scionti, in Mexcio. Dr. Scionti is the doctor who teaches HIFU around the world, he's been doing it for 5 or 6 years. He uses both machines but prefers the Sonablate which, I think, is the machine you use in India.

    There's a doctor in Florida who has a Facebook page who says that someday surgery and radiation will be replaced by HIFU.

    I've been told that Cyber Knife won't work for prostate cancer.

    Much luck. I am happy to answer any questions. We are very happy with the decision to go HIFU, we researched it for quite a while.

    CyberKnife for prostate cancer
    I am researching prostate cancer treatments following failed prostate surgery for my mom's boyfriend and was surprised to read your post saying that the CyberKnife won't work for prostate cancer. Having worked with the creator of the CyberKnife and subsequently the physicians using the CyberKnife (CK), I can tell you that the CK is being used for prostate cancer and the results have been extremely good. To my knowledge, it is not being used for patients with a Gleason score over 7 but the patients who have been treated have experienced very little in the way of complications that come with other treatments like ED, incontinence, etc. For anyone contemplating treatment of early prostate cancer, I think you would find it worthwhile to explore the option of treatment with the CyberKnife. On the patient support website, there is a patient forum where you can post questions about your particular condition and one or more physicians will respond. Depending upon your particular condition, the CK may not be the best option for you but the physicians will tell you if another modality is better. I should mention that the doctors who monitor the forum aren't paid to do so and do this in their free time. You can also read previous posts and physician responses that may give you a lot of information that could be pertinent to your particular situation.

    http://www.cyberknife.com/Forum.aspx?g=topics&f=2586

    A previous CK forum is still available for review (but you can't post questions there anymore) which might also provide answers to some of your questions at:

    http://www.cyberknifesupport.org/forum/default.aspx?f=10

    You can also check PubMed for CK publications on prostate cancer to get more technical background and patient results. I don't work with the CK folks any more but I am still a huge supporter of the CK and all it can do for not only prostate cancer but many other types of cancers.

    God bless all of you in your journey with cancer. My thoughts and prayers are with you.
  • hopeful12
    hopeful12 Member Posts: 1
    HIFU for prostate cancer
    Does anyone know where in Florida the clinical trials for HIFU is being done. Early in October I had found a link to this info. but have misplaced the contact. My PSA is rising and I need to have some sort of plan. From 4.7 to 6.3 with Gleason of score of 7. Only 52 tomorrow and I am very active. Thanks.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    hopeful12 said:

    HIFU for prostate cancer
    Does anyone know where in Florida the clinical trials for HIFU is being done. Early in October I had found a link to this info. but have misplaced the contact. My PSA is rising and I need to have some sort of plan. From 4.7 to 6.3 with Gleason of score of 7. Only 52 tomorrow and I am very active. Thanks.

    hopeful
    Here is a link to get in touch with International HIFU group.

    http://www.internationalhifu.com/do-i-qualify-for-hifu-whatishifu-40.html

    When I questioned them they said the only trials being done in the US were on Brachytheraphy failures with re-occurring cancer. Otherwise you had to go to Cancun, Bahammas or Toronto to get it done.

    Randy in Indy
  • 2x4don
    2x4don Member Posts: 1
    my experience re: recent Davicci prostatectomy and research
    I was diagnosed with early stage of prostate cancer on 9-1-09 on one side of my prostate, after trailing my psa, which had elevated from 2 about ten years ago, to 35 and having taken 5 biopsies over the years, having skipped having a biopsy on 08, as Dr. said I must
    just have a psa "leak" and they would have found cancer with all the biopsies.

    I met with a couple of other doctors whos did open prostatectomys, but the most enfluential advice I received was, a friend of the family who is a radiologist had chosen to have the davicci operation at the advice of his urologist friend, to be done at the Vanderbilt hospital in Nashville, Not a very good experience in comparison to my Davicci operation at the bathesda North hospital in Cinn. Ohio. I chose Dr Delworth in the area, because my son sells Laprascopic equipment and the supervisor in Cincinatti said Delworth was quite noted, having done about 750 davicci operations and he was only 80 miles from me, rather than 250 to Vanderbilt.

    My Dr friend had considerable bleeding, etrocious diarhea and wasn't allowed to stay but one day, in a mash like atmosphere, having to stay in a motel a day or two in case there might be problems, wife had to sleep in a chair. In contrast, I was allowed to stay four days, due to my not passing gas or otherwise and they allowed my wife to sleep in the bed next to me, I was very happy with the care and accomodations.

    I had no bleeding in my urine and the incisions have been so comfortable I kiddingly accused Dr Delworth of not removing the prostate.

    I have had a small hemorriod and rectal soreness, but the stomach soreness went down fast over a week or two, but I was pretty mobile and walked at will. I'm six weeks post op and felling good except for:

    My incontinese is of concern, but it seems to be improving a little daily, but I'm a bit frustrated, expecially as it gets worse the later in the day. I do pretty good lieing or sitting, but I leak worse when i stand. I get a bit irritated in the urethra in the penis when it seems to inhibit the penis utrethra too long, maybe an hour or so?

    I havn't had an erection, but one ejaculation, emitting only "dust and smoke", but I havn't bought the vacuum pump yet, I tend to not be allowed to play with toys I may hurt myself with, but I think It may my permitted in about 6 to 8 weeks. I may be too preoccupied with piss to think beyond that?

    I was fortunate to have a rediologist at Central Babtist Hospital in Lexinton, Ky, near my home spend two hours discussing the laser knife and other radiation treatments, and the end conclusion was that for my level of cancer about 7 whatever its called, I would be better off if removed surgically and if i might need radiation additionally, it could be done. But, if you do radiation first, you can't operate very well after radiation.

    I suppose I could write a week on this ordeal, but I'll "zip it" for now, but would be glad to answer any questions.

    ps.
    I am 67 years old and in perfect health except i'm a type two diabetic with an a1c of 6.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    2x4don said:

    my experience re: recent Davicci prostatectomy and research
    I was diagnosed with early stage of prostate cancer on 9-1-09 on one side of my prostate, after trailing my psa, which had elevated from 2 about ten years ago, to 35 and having taken 5 biopsies over the years, having skipped having a biopsy on 08, as Dr. said I must
    just have a psa "leak" and they would have found cancer with all the biopsies.

    I met with a couple of other doctors whos did open prostatectomys, but the most enfluential advice I received was, a friend of the family who is a radiologist had chosen to have the davicci operation at the advice of his urologist friend, to be done at the Vanderbilt hospital in Nashville, Not a very good experience in comparison to my Davicci operation at the bathesda North hospital in Cinn. Ohio. I chose Dr Delworth in the area, because my son sells Laprascopic equipment and the supervisor in Cincinatti said Delworth was quite noted, having done about 750 davicci operations and he was only 80 miles from me, rather than 250 to Vanderbilt.

    My Dr friend had considerable bleeding, etrocious diarhea and wasn't allowed to stay but one day, in a mash like atmosphere, having to stay in a motel a day or two in case there might be problems, wife had to sleep in a chair. In contrast, I was allowed to stay four days, due to my not passing gas or otherwise and they allowed my wife to sleep in the bed next to me, I was very happy with the care and accomodations.

    I had no bleeding in my urine and the incisions have been so comfortable I kiddingly accused Dr Delworth of not removing the prostate.

    I have had a small hemorriod and rectal soreness, but the stomach soreness went down fast over a week or two, but I was pretty mobile and walked at will. I'm six weeks post op and felling good except for:

    My incontinese is of concern, but it seems to be improving a little daily, but I'm a bit frustrated, expecially as it gets worse the later in the day. I do pretty good lieing or sitting, but I leak worse when i stand. I get a bit irritated in the urethra in the penis when it seems to inhibit the penis utrethra too long, maybe an hour or so?

    I havn't had an erection, but one ejaculation, emitting only "dust and smoke", but I havn't bought the vacuum pump yet, I tend to not be allowed to play with toys I may hurt myself with, but I think It may my permitted in about 6 to 8 weeks. I may be too preoccupied with piss to think beyond that?

    I was fortunate to have a rediologist at Central Babtist Hospital in Lexinton, Ky, near my home spend two hours discussing the laser knife and other radiation treatments, and the end conclusion was that for my level of cancer about 7 whatever its called, I would be better off if removed surgically and if i might need radiation additionally, it could be done. But, if you do radiation first, you can't operate very well after radiation.

    I suppose I could write a week on this ordeal, but I'll "zip it" for now, but would be glad to answer any questions.

    ps.
    I am 67 years old and in perfect health except i'm a type two diabetic with an a1c of 6.

    Don
    Please ask your doc about your ED because my doc says it's critical to get blood to the tissue or it will atrophy and then when the nerves do decide to wake up and send blood it might be too late to ever get it working again if you've waited and not had regular daily attempts to get blood to the penis. I got the pump...not as fun as I anticipated but it's providing the help it's supposed to. Viagra daily is working...taking 1/4 pill of 100mg and then on 7th day a full 100 mg pill - I am 24 days post Da Vinci and have had a full erection - once on the 7th day 100 mg pill day and one other time with just a 1/4 pill. My results may be skewed by my age only 52 and the fact the surgeon found two extra pudendal arteries and saved them. Hope I helped

    Randy in Indy
  • HIFUgal
    HIFUgal Member Posts: 58

    Don
    Please ask your doc about your ED because my doc says it's critical to get blood to the tissue or it will atrophy and then when the nerves do decide to wake up and send blood it might be too late to ever get it working again if you've waited and not had regular daily attempts to get blood to the penis. I got the pump...not as fun as I anticipated but it's providing the help it's supposed to. Viagra daily is working...taking 1/4 pill of 100mg and then on 7th day a full 100 mg pill - I am 24 days post Da Vinci and have had a full erection - once on the 7th day 100 mg pill day and one other time with just a 1/4 pill. My results may be skewed by my age only 52 and the fact the surgeon found two extra pudendal arteries and saved them. Hope I helped

    Randy in Indy

    I am down in Mexico right
    I am down in Mexico right now on vacation, in Puerto Vallarta where my husband had HIFU. I have learned that there are several doctors who treat men with prostate cancer here with HIFU, Mexican doctors. I met Dr. Garcia who learned from my husband's doctor, Dr. Scionti, Dr. Garcia is a wonderful man, you won't know you are "out of the country", and he only charges $12,000. Find him at HIFU + MX
    HIFU is all over Mexico now, just like every country on earth ~ except the good ole USA (they call us The United Slaves of America).
  • Mitch128
    Mitch128 Member Posts: 20
    HIFUgal said:

    I am down in Mexico right
    I am down in Mexico right now on vacation, in Puerto Vallarta where my husband had HIFU. I have learned that there are several doctors who treat men with prostate cancer here with HIFU, Mexican doctors. I met Dr. Garcia who learned from my husband's doctor, Dr. Scionti, Dr. Garcia is a wonderful man, you won't know you are "out of the country", and he only charges $12,000. Find him at HIFU + MX
    HIFU is all over Mexico now, just like every country on earth ~ except the good ole USA (they call us The United Slaves of America).

    HIFU Treatment Patient Eligibility?
    A recent Endorectal Coil MRI shows "Extra Right Side Capsule Extension" with "Borderline Involvement of the right seminal vessel". Pathological PCa stage T2bM0.

    HIFU research seems to be vague in the area of patient eligibility - I gather, but it's unclear, that treatment is aimed at lower PSA/Gleason readings (mine are 19.5/4+4=8) with PCa strictly confined to the prostate capsule.

    Any clarification sincerely appreciated.

    Thanks! Mitch
  • bdhilton
    bdhilton Member Posts: 803 Member
    I looked into HIFU
    I looked into HIFU.. I was not eligible for a trial in the USA. They were looking for T1 a, b, and c only and no palpable nodules. Based on my research (not to say I am 100% correct) the testing in the USA is being “cherry picked”… What they choice to do outside of the USA I have no clue. Bottom-line is do what you believe is the best for you not what someone is marketing…best of luck
  • HIFUgal
    HIFUgal Member Posts: 58
    bdhilton said:

    I looked into HIFU
    I looked into HIFU.. I was not eligible for a trial in the USA. They were looking for T1 a, b, and c only and no palpable nodules. Based on my research (not to say I am 100% correct) the testing in the USA is being “cherry picked”… What they choice to do outside of the USA I have no clue. Bottom-line is do what you believe is the best for you not what someone is marketing…best of luck

    Have I been accused of
    Have I been accused of "marketing"? Low blow, as I am just a wife of a guy who underwent HIFU, he had no pain, no problems, and I try to spend my free time letting people know that there is another option for PCa. All I want to do is help stop the misery caused by other treatments. HIFU is the future, but our for money system is not happy about this new treatment as it will severly reduce the profit and money in cancer. The rest of the world enjoys more freedom than we do.

    My husband wasn't eligible for the clinical trials, and I am glad of that, because the clinical trials doctos don't have the experience that our doctor had, 6 years of HIFU treatments.

    Here's a report on Sky News (a news channel the rest of the world gets, but not us):



    I didn't understand your FYI, what clinical trial were you looking at? I understand the Japanese have put out their results and 86% of HIFU patients were cured at 5 years, I keep the thought that that data is 10 years old, so they were just learning, I'm betting the data now is closer to what International HIFU sees, 94% cured. I'm guessing the 6% had cancer outside the gland area and it wasn't spotted.
  • Mitch128
    Mitch128 Member Posts: 20
    HIFUgal said:

    Have I been accused of
    Have I been accused of "marketing"? Low blow, as I am just a wife of a guy who underwent HIFU, he had no pain, no problems, and I try to spend my free time letting people know that there is another option for PCa. All I want to do is help stop the misery caused by other treatments. HIFU is the future, but our for money system is not happy about this new treatment as it will severly reduce the profit and money in cancer. The rest of the world enjoys more freedom than we do.

    My husband wasn't eligible for the clinical trials, and I am glad of that, because the clinical trials doctos don't have the experience that our doctor had, 6 years of HIFU treatments.

    Here's a report on Sky News (a news channel the rest of the world gets, but not us):



    I didn't understand your FYI, what clinical trial were you looking at? I understand the Japanese have put out their results and 86% of HIFU patients were cured at 5 years, I keep the thought that that data is 10 years old, so they were just learning, I'm betting the data now is closer to what International HIFU sees, 94% cured. I'm guessing the 6% had cancer outside the gland area and it wasn't spotted.

    Accused of ... Absolutely, Positively NOT
    HIFUgal,

    Whoops! I've read and reread my post and can't see how I left a negative impression - certainly no "low blow" intended. On the contrary, both my wife and I agree your posts have been most helpful, even critical to our particular situation. In any case, I offer my sincerest apologies. Please DO keep posting!

    I'm sold on HIFU (and yes, you've been instrumental), in or out of the country, IF my latest bone scan shows no metastasis. Won't know the drill until next Friday, February 5th, when I speak to my Oncologist at the Greenville, South Carolina Cancer Center.

    As to my comment on Clinical Trials, it encompasses what I've been able to learn via Google searches about ALL trials, NOT HIFU specifically. As you have pointed out, this information is likely outdated.

    Hope this puts us square.

    Mitch
  • bdhilton
    bdhilton Member Posts: 803 Member
    HIFUgal said:

    Have I been accused of
    Have I been accused of "marketing"? Low blow, as I am just a wife of a guy who underwent HIFU, he had no pain, no problems, and I try to spend my free time letting people know that there is another option for PCa. All I want to do is help stop the misery caused by other treatments. HIFU is the future, but our for money system is not happy about this new treatment as it will severly reduce the profit and money in cancer. The rest of the world enjoys more freedom than we do.

    My husband wasn't eligible for the clinical trials, and I am glad of that, because the clinical trials doctos don't have the experience that our doctor had, 6 years of HIFU treatments.

    Here's a report on Sky News (a news channel the rest of the world gets, but not us):



    I didn't understand your FYI, what clinical trial were you looking at? I understand the Japanese have put out their results and 86% of HIFU patients were cured at 5 years, I keep the thought that that data is 10 years old, so they were just learning, I'm betting the data now is closer to what International HIFU sees, 94% cured. I'm guessing the 6% had cancer outside the gland area and it wasn't spotted.

    HIFU Gal
    The "marketing" statement is a general one. What works for one may not work for others… I am very happy that you are pleased with your husband's process and I (and I am sure everyone else here) hope for the best for him and you should let all know how the process goes for all here that are seeking support before during and after their selection process and actual treatment…

    I have no issue with restating what I found out in regards to “trials” in the USA for HIFU and from my perspective they are “cherry picking”…The trial I personally inquired to required that you were a T1a, T1b or T1C with no palpable nodules (this is an automatic assignment of T2+)…I do not know or have I talked to anyone that has PC with a T1 staging at least not here…not to say I would have had this process done or not…I have explored all options for me and as I say above “What works for one may not work for others” and at the end of the day it is what you believe is best for you…

    Again the best to you and your husband
  • HIFUgal
    HIFUgal Member Posts: 58
    bdhilton said:

    HIFU Gal
    The "marketing" statement is a general one. What works for one may not work for others… I am very happy that you are pleased with your husband's process and I (and I am sure everyone else here) hope for the best for him and you should let all know how the process goes for all here that are seeking support before during and after their selection process and actual treatment…

    I have no issue with restating what I found out in regards to “trials” in the USA for HIFU and from my perspective they are “cherry picking”…The trial I personally inquired to required that you were a T1a, T1b or T1C with no palpable nodules (this is an automatic assignment of T2+)…I do not know or have I talked to anyone that has PC with a T1 staging at least not here…not to say I would have had this process done or not…I have explored all options for me and as I say above “What works for one may not work for others” and at the end of the day it is what you believe is best for you…

    Again the best to you and your husband

    bdhilton,
    I just wouldn't

    bdhilton,
    I just wouldn't discourage anyone from seeking advice from the HIFU doctor, as to whether or not HIFU will work for them. He won't treat anyone whom he doesn't think it will work for, Dr. Scionti has a 6 year spotless record he doesn't want to ruin and the FDA is following him around with tweasers.

    Here's a story that International HIFU sent out in their monthly newsletter (by the way, it was not Dr. Scionti who treated him):

    'During late June 2008, I had a PSA test locally in Palm Beach, Fl. As the PSA was high, I was referred to a local urologist who did a DRE and said that I should have radiation before even scheduling a biopsy.

    During early July 2008, I researched HIFU extensively online, mainly using the Google search engine. I already knew that I had BPH so it was great timing to discover that a doctor in my area had both GreenLight and HIFU experience. I read everything I could find regarding both procedures and decided to contact this doctor, who answered most of my questions over the phone and via email.

    I eventually met with this particular doctor in Orlando and he performed my biopsy on July 21, 2008. I learned within 22 hours that I had high-risk PC and BPH. My PSA was 18, Gleason score was 9 and all 12 of my cores were cancerous. He immediately prescribed oral Casodex for prostate cancer.

    I had lost 20 pounds and was down to 140 pounds and was very concerned that radiation treatment would be especially hard on me as I have gastritis. I asked hundreds of questions, particularly regarding my concern if HIFU would be successful considering my high Gleason score. I was informed that they had treated previous high-risk patients who had high Gleason scores with the Sonablate 500. I decided in August to undergo the GreenLight laser procedure to reduce the size of my enlarged prostate and scheduled it for September 3. The GreenLight procedure was at 1:30 p.m. and I was in my motel at 5:00 p.m.

    After discussing other options with local surgeons, oncologists and radiologists and undergoing nuclear pet-scans and MRIs, which showed no metastasis, I decided that I wanted to have the HIFU treatment in Cancun, Mexico. On September 14, just 11 days following the GreenLight procedure, I had my HIFU procedure in Cancun. I went into the OR at 6:30 a.m.; the total procedure time was approximately four hours and 10 minutes. I returned home to the U.S. 36 hours later; one of the patients returned home the day after his procedure.

    I already had written instructions on how to train my bladder over the next few weeks, and was also assisted by multiple phone calls whenever I needed information.
    I have been completely pain-free throughout both of these procedures (GreenLight and HIFU) with no side effects whatsoever and would highly recommend this treatment to anyone who chooses a minimally invasive treatment versus the recovery time and what seems to me to be the obvious suffering and pain involved in comparison to post-prostatectomy and/or radiation therapy. I have been on hormone therapy for more than 12 months. My PSA has remained at 0.1 (as of this writing on October 8, 2009).

    I fully acknowledge and realize that there will be proponents and critics during the next months and years regarding the effectiveness of HIFU versus more invasive procedures, including surgery and radiation therapy. Knowing my overall health situation from the get-go gave me a determined conviction that I made the right decision for me.'


    I've written him privately and he says his PSA is now 0.08, he has been off all hormones for a couple months.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    HIFUgal said:

    bdhilton,
    I just wouldn't

    bdhilton,
    I just wouldn't discourage anyone from seeking advice from the HIFU doctor, as to whether or not HIFU will work for them. He won't treat anyone whom he doesn't think it will work for, Dr. Scionti has a 6 year spotless record he doesn't want to ruin and the FDA is following him around with tweasers.

    Here's a story that International HIFU sent out in their monthly newsletter (by the way, it was not Dr. Scionti who treated him):

    'During late June 2008, I had a PSA test locally in Palm Beach, Fl. As the PSA was high, I was referred to a local urologist who did a DRE and said that I should have radiation before even scheduling a biopsy.

    During early July 2008, I researched HIFU extensively online, mainly using the Google search engine. I already knew that I had BPH so it was great timing to discover that a doctor in my area had both GreenLight and HIFU experience. I read everything I could find regarding both procedures and decided to contact this doctor, who answered most of my questions over the phone and via email.

    I eventually met with this particular doctor in Orlando and he performed my biopsy on July 21, 2008. I learned within 22 hours that I had high-risk PC and BPH. My PSA was 18, Gleason score was 9 and all 12 of my cores were cancerous. He immediately prescribed oral Casodex for prostate cancer.

    I had lost 20 pounds and was down to 140 pounds and was very concerned that radiation treatment would be especially hard on me as I have gastritis. I asked hundreds of questions, particularly regarding my concern if HIFU would be successful considering my high Gleason score. I was informed that they had treated previous high-risk patients who had high Gleason scores with the Sonablate 500. I decided in August to undergo the GreenLight laser procedure to reduce the size of my enlarged prostate and scheduled it for September 3. The GreenLight procedure was at 1:30 p.m. and I was in my motel at 5:00 p.m.

    After discussing other options with local surgeons, oncologists and radiologists and undergoing nuclear pet-scans and MRIs, which showed no metastasis, I decided that I wanted to have the HIFU treatment in Cancun, Mexico. On September 14, just 11 days following the GreenLight procedure, I had my HIFU procedure in Cancun. I went into the OR at 6:30 a.m.; the total procedure time was approximately four hours and 10 minutes. I returned home to the U.S. 36 hours later; one of the patients returned home the day after his procedure.

    I already had written instructions on how to train my bladder over the next few weeks, and was also assisted by multiple phone calls whenever I needed information.
    I have been completely pain-free throughout both of these procedures (GreenLight and HIFU) with no side effects whatsoever and would highly recommend this treatment to anyone who chooses a minimally invasive treatment versus the recovery time and what seems to me to be the obvious suffering and pain involved in comparison to post-prostatectomy and/or radiation therapy. I have been on hormone therapy for more than 12 months. My PSA has remained at 0.1 (as of this writing on October 8, 2009).

    I fully acknowledge and realize that there will be proponents and critics during the next months and years regarding the effectiveness of HIFU versus more invasive procedures, including surgery and radiation therapy. Knowing my overall health situation from the get-go gave me a determined conviction that I made the right decision for me.'


    I've written him privately and he says his PSA is now 0.08, he has been off all hormones for a couple months.

    I'm not trying to be a Smart A but......
    Why has the United States not approved this treatment yet? Please answer that one question. If Europe has been doing this for 19 years...and the person who developed the machine is a U.S. citizen and the headquarters are located in the U.S. doesn't it strike you as odd that the U.S. has not approved HIFU as a recognized and approved treatment of PCa after another country has done it for 19 years? There has to be a reason...and I'm just curious.

    Randy in Indy
  • HIFUgal
    HIFUgal Member Posts: 58

    I'm not trying to be a Smart A but......
    Why has the United States not approved this treatment yet? Please answer that one question. If Europe has been doing this for 19 years...and the person who developed the machine is a U.S. citizen and the headquarters are located in the U.S. doesn't it strike you as odd that the U.S. has not approved HIFU as a recognized and approved treatment of PCa after another country has done it for 19 years? There has to be a reason...and I'm just curious.

    Randy in Indy

    The person who invented
    Randy in Indy,
    The person who invented HIFU, in 1941, was a surgeon who said, "no man should have to suffer this" after he had surgery himself for PCa. He then invented the machine, he died and so did the technology.

    The United States laughed at the DaVinci robot machine for roughly 10 years before they even went over to France and looked into it.

    HIFU should be approved later this year, but I fear most men will still have to leave the country for treatment as it will be restricted in usage far more than it needs to be.

    Yes, there has to be a reason.... The FDA is governed by radiologists and surgeons.


    Mitch,
    I am thrilled to have helped you, please keep us updated!
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    HIFUgal said:

    The person who invented
    Randy in Indy,
    The person who invented HIFU, in 1941, was a surgeon who said, "no man should have to suffer this" after he had surgery himself for PCa. He then invented the machine, he died and so did the technology.

    The United States laughed at the DaVinci robot machine for roughly 10 years before they even went over to France and looked into it.

    HIFU should be approved later this year, but I fear most men will still have to leave the country for treatment as it will be restricted in usage far more than it needs to be.

    Yes, there has to be a reason.... The FDA is governed by radiologists and surgeons.


    Mitch,
    I am thrilled to have helped you, please keep us updated!

    Interesting....however
    Your comment about all surgeons saying surgery is the answer is simply not true or visa versa...about Oncologists...I went to a very well know Oncoligist trained at General Mass radiation - Dr. Dugan and he emphatically told me to get it removed by surgery. I always asked each doctor I interviewed..."now you have what I have....excactly....what would you personally do and who would you have do it?"

    HIFU may become the gold standard...but I don't really buy the comment that the FDA is run by surgeons and radiologists. I personally like the HIFU principle...but in my case since I had two places that had extraprostatic extension which did not show up until the post op pathology report most likely would have meant If I had choosen HIFU I would have been dealing with PSA readings of more than .2 down the road and needed further treatment. BTW the context on your comment about PSA's from a .1 to .4 seemed a good thing...how can that be when people are recomended radiation once the PSA gets to .2 and above.....I am not trying to be mean here but facts are facts. I am elated with my choice for Robotic - my cancer is technically gone...we shall see if there is any detectable PSA on my first test...then if a second test comes and goes with a >0.1 I will feel pretty certain I am cancer free for life.

    Each persons choice is totally his own and should be the one that he can and will live with.

    Randy in Indy