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

cagey
Posts: 2
Joined: Oct 2009

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.

hopeful and opt...
Posts: 1332
Joined: Apr 2009

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's picture
gkoper
Posts: 174
Joined: Apr 2009

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
Posts: 58
Joined: Sep 2009

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
Posts: 1
Joined: Dec 2009

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

the.wife
Posts: 20
Joined: Oct 2009

Dear Cagey,

How much did HIFU cost in India? How did it go? How are you?

I have a friend who went to India and had both his hips replaced, he raves about the level of care he received and the facilities he was treated in and the state of the art equipment you have over there.

I figure we could see the Taj Mahal and really make a wonderful adventure out of this curse called cancer.!

Thank you for any input, hope you are still reading here.

PawPaw3,
I see others appreciated HIFUgal here, hope you are doing well too!

kimodo
Posts: 1
Joined: Dec 2009

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.

LBlanks's picture
LBlanks
Posts: 44
Joined: Oct 2009

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.

Ralphie62
Posts: 47
Joined: Feb 2010

I'm newly diagnosed and exploring treatments....could you tell me where your friend participated in this experiment?? cost will be an issue for me.....also, I'm considering davinci...I would like to correspond with people from Georgia for surgeons and outcomes.

hopeful12
Posts: 1
Joined: Jan 2010

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's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

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
Posts: 1
Joined: Jan 2010

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's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

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
Posts: 58
Joined: Sep 2009

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
Posts: 20
Joined: Oct 2009

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

Mitch128
Posts: 20
Joined: Oct 2009

HIFUgal reported "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." This sounds much more reasonable than the $25,000 or so associated with Dr. Scionti for the same procedure.

Can anyone comment on this disparity (Garcia versus Scionti only?) and/or any other pertinent info such as the cost of hotels, food, transportation hassles, personal saftey, length of stay, time it takes to get a passport, incidentals, etc.

I've not been in touch with any HIFU organization at the moment - should know Friday, yes or no, if PCa has progressed to bones. If the answer is No, then I'll start moving forward without delay.

Thanks,

Mitch

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Hi Don, Just wanted to chime in, my hubbie was just diagnosed, we are from the Louisville Kentucky area.
I had 2 recent surgeries at Bethesda North myself. Excellent staff and care. My last was 4 weeks ago and I am recovering nicely (partial bowel obstruction from adhesions).
How long did it take you to get in to see your particular surgeon? We are getting 2 other opinions but the fact you had surgery at Bethesda North intrigued me, having been there so recently myself.

bdhilton
Posts: 759
Joined: Jan 2010

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
Posts: 58
Joined: Sep 2009

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):

http://www.youtube.com/watch?v=1zxH7P9WjIw

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
Posts: 20
Joined: Oct 2009

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
Posts: 759
Joined: Jan 2010

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
Posts: 58
Joined: Sep 2009

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's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

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
Posts: 58
Joined: Sep 2009

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's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

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

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Hello, I have a question for you.
Do you have a background in the medical field?
Because some of the comments you make border on giving medical advice.
I'm a registered nurse, and I am very careful about even sounding like I am giving medical advice, which is illegal.
I think you should be more careful telling people they 'qualify', or other opinions on their situation. That is best left to the medical professionals.
I don't mean to offend you, because you do sound like you are trying to be helpful, but giving your opinion on a medical situation when you are not a trained professional may in fact, do more harm than good.

bdhilton
Posts: 759
Joined: Jan 2010

You think so :-)?

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

The truth usually has a way of finding it's way to the surface, it's just a matter of time.

HIFUgal
Posts: 58
Joined: Sep 2009

"bumped" means it was brought to the top of the pile, for your reading.

No, no medical training at all. I got info on HIFU from a friend. It was a total God send for us, and so I want to pass along what I've learned. I read about it all the time, and so I have learned alot, and there are people who have had HIFU that I stay in touch with and they tell me what they learned.

Giving advice on a forum is not illegal, as there is a disclaimer at the bottom of this page, everyone knows we are just trying to help based on our experience, if I was a MD I'd certainly say so.

When I say someone is qualified - it's totally based on thier stats. BTW, I say all the time to call International HIFU and ask if you qualify, there is a doctor on Facebook who says someday surgery and radiation will be in the Smithsonian. I wish HIFU was covered by insurance here. It would be the cheapest cure, especially in the long run....based on my husband and our friends who have also had it.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Where are all those patients who have had HIFU....why have they not been here first..posted and then come back to comment on the experience. Why is Hifu gal the only one....why? Something to ponder.

Randy in Indy - just a guy that had a nodgle - cancer in 3 samples of 8....even some grade 5 in the post op path....yet now...60 days following robotic...95% continent and usuable erections....Im real...I'm posting here...I can tell you what I am not doing...I am not posting on a breast cancer board about what will work for women that have breast cancer because of the personal experience that I have had with that with several people in my life....hmmmm HIFU gal...how long are you going to post here...and what is your ultimate goal on this forum. Oh and where is your husband...is he real...will he ever join the fun and post? Enquiring minds want to know.....well ok...just me. LOL

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Interesting Question you raise randy....When I researched all my options for treatment I did researh hifu. I did not want to start asking questions later saying why did I not research such and such treatment. I received and read literature on Hifu, Spoke to a technician and a Doctor that did the Hifu treatments I believe in the Bahama's. I'm not against it but just felt that I wasn't getting the answers I needed or that it would work for me. As we all find out when fighting this battle there are SO MANY VARIABLES in each persons case. Along with that I could not justify paying 20,000 - 30,000 out of Pocket for the hifu treatments. I know they state some insurance companies cover it but the bottom line is It's not recognized in the USA and insurance being the way it is they paying anything they can.

Larry

HIFUgal
Posts: 58
Joined: Sep 2009

Where are the men who had HIFU? guess they don't enjoy a fight. My husband has no interest in forums, he reads books in his spare at home time, hardly even answers his friends emails, he has said that forums are notorious for rude behavior. Our friends still work, ski instructors, store owners, they tell all the people they meet about HIFU, but aren't interested in spending their time on forums. Every one of them has sent in someone....and all are happy. HIFU shouldn't be confined to a rich man's option.

When I first posted my husband's experience my post was erased and I was banned, at 5 different forums. That was well over a year ago, they didn't allow the topic, they wanted to keep this information from you. My husband was treated in 2008 but I couldn't write here until Sept. of 2009.

Yes, where are they? Men are different, they aren't care givers, or, like my husband - they do it in a different way. Besides, it seems that people with good stories don't come here, people come here to find answers to their problems, after HIFU life is normal.

If my husband read the posts you guys send my way he'd throw the computer out the window.

What is my goal? To make sure everyone (rich and poor) know about HIFU so that the FDA cannot drag its feet anymore, that they are honest and give HIFU approval ~ after all ~ no treatment is FDA approved for prostate cancer....my goal is to stop the misery.

HIFUgal
Posts: 58
Joined: Sep 2009

I found a group of people who had HIFU:

http://www.cancercompass.com/message-board/message/all,39623,0.htm?mid=287015#287015

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

HIFUgal, I live in Canada where HIFU has been approved for years, but it is still not covered by our provincial medicare systems and costs about $25,000. I seriously considered HIFU and was certainly able to afford the fee when I was diagnosed with PC. However, I opted for laparoscopy surgery and I am happy with the results. The jury is still out on the long-term effectiveness of HIFU.

You say you've been banned from this site. Consider this: Unfortunately some of these sites have been infiltrated with people promoting their own agenda (those who work for, or actually own a HIFU clinic). You come across as one of these people because you seem to bring up HIFU in just about every discussion, including those not even closely related to the HIFU topic. We could be discussing the anatomy of a ping pong ball during mating season and there you are again, pushing HIFU.

So, what is your real goal on this site? Who are you really? And if you are not a spammer, tell your husband to find his balls and get on this site and speak for himself... he supposedly went through the HIFU treament, not you.

HIFUgal
Posts: 58
Joined: Sep 2009

I don't work for anyone.

I wasn't banned from here, I didn't find this site until later. What are long term results with surgery? or radiation? So far HIFU stacks up better, according to results from Dr. Uchilda in Japan and Dr. Emberton in the UK.

The AMA tells insurance companies what to cover, same in Canada, there's no money in HIFU if it's approved.

Besides what I've already said, I want HIFU approved so that we can move on to killing breast cancer with HIFU, as they are doing in Europe and Asia. I want everyone to know about HIFU. then they can chose.

Jun 16, 2009 6:27 pm US/Eastern HealthWatch: Prostate Cancer Reporting
Dr. Max Gomez NEW YORK (CBS) ― British doctors are testing a new treatment that uses the power of sound to kill prostate cancer.

They're finding high-intensity focused ultrasound, or hifu, destroys cancer cells without serious side effects.

That was important to prostate cancer patient Graham Cole. "It's a very sensitive part of the anatomy, and hifu will deal with what needs to be done and only what needs to be done."

Traditional treatments like surgery and radiation can damage healthy cells in and around the prostate leading to impotence and incontinence.

"The radical treatments that we have come with a significant amount of collateral damage," said Dr. Richard Hindley of the North Hampshire Hospital in England.

Hifu uses a probe to focus ultrasound at the prostate.

High frequency sound waves reaching 212 degrees burn cancer cells. The urinary tube that runs through the prostate and nearby nerves needed for sexual function are not damaged.

British doctors have only tested this type of hifu on 18 men.

So far it's been much more effective than traditional treatments.

Now doctors in the U.S. are planning their own studies.

"In my opinion it's the future," said Dr. Thomas Polascik of Duke University Medical Center.

Researchers said accuracy was just the type of advance they need in treating prostate cancer.

Polascik said the goal would be to find and destroy cancer cells in the prostate without damaging the rest of the prostate.

Cole's procedure took two hours and he was able to go home the very next day. His doctors are satisfied his cancer is gone.

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

Sorry HIFUgal, I understood that you were banned from this particular site when you mentioned in your last post, "When I first posted my husband's experience my post was erased and I was banned, at 5 different forums". I guess they still haven't caught onto you on this particular site... (yet), especially since your latest reply appears to be an endless stream of "promo" for HIFU once again.

We already have HIFU in Canada and the AMA (or CMA) does not tell any insurance company what to cover in any of our provinces. In addition, we have "universal" medical coverage in Canada, something that your own country is pondering today (but that's a whole other topic to be debated by Americans). So, get the facts right before you write anything again about HIFU in Canada.

You say Cole's procedure took... (yada-yada-yada)... and his doctors are satisfied his cancer is gone. So are my doctors regarding my cancer without serious side effects... and I didn't have HIFU. Instead, I had the proven prostatectomy with nerve sparing.

Very important: I'm not for or against HIFU, I am just more convinced now that you are not who you say you are and that you do indeed have an ongoing conflict of interest here.

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Hifu gal, you continue to come up with 'facts' that are hard to substantiate, look at luckyman2's post correcting you about what you wrote regarding Canada and HIFU: erroneous information. You come across as a salesperson, pure and simple. I read in one of your posts that you are in Puerto Vallarta quite often. Why is that? I think you work for HIFU. Or you are on some kind of retainer for bringing in patients.
I have gone to pubmed (lists medical articles from all over the world) trying to find hard statistics about HIFU, with specific data regarding Gleason scores, staging of patients, treatment details, and they are few and far between. This is the primary reason that the FDA is awaiting clinical trial results in this country before approving HIFU. More controlled studies are needed. Did you read my post about the FDA? Probably not. Read the thread,it will enlighten you.
Since you are NOT a medical professional, you probably are not aware of how clinical research is conducted in this country.
I keep thinking of all the people years ago who jumped on the Laetrile bandwagon, went to Mexico and later died because they'd refused conventional treatment for cancer. There is usually a reason why drugs and treatments go thru clinical trials. Even then, some things are missed (thalidomide, Avandia). BUT there has to be some sort of process to PROTECT the public and make sure that standards of care are established and met. Think about antibiotics. Did you know that years ago the belief was that antibiotics were the cure-all for everything? Now look at the mess with bacteria that have become drug resistant due to the over-prescription of antibiotics. We have created 'super-bugs'.
We are getting ready to go see a leading prostate cancer doctor in a few weeks. I'm interested to see what his take on HIFU is.
And contrary to your belief, and I directly quote from your posting "HIFU shouldn't be confined to a rich man's option.", unfortunately, hon, right now it IS. All the carrying on and your constant posting in totally unrelated threads trying to sell it, interrupting other people's conversations about unrelated concerns, all this jockeying by you will NOT speed up the clinical trials and the approval in the US. HIFU will likely be approved eventually, and may indeed eventually become the 'gold standard', but right now, it ISN'T. And not many people have that chunk of change to plunk down as you and your 'friends' so easily did. Someone sure is making a lot of money off HIFU right now. Maybe even you. Maybe approval is just around the corner, and the HIFU clinics are in a crunch to make as much money as they can before the window of opportunity closes. It makes sense that in these difficult economic times, patient numbers are likely down and thus people are going to the internet, to forums like this, to actively sell and recruit patients. And if you aren't working for HIFU, you sure do come across like you are.
I received the book written by a urologist called "The Big Scare: The Business of Prostate Cancer". it is quite the interesting read. My husband's urologist is going to read it. And by the way, hubbie's original urologist has gone to Cancun and observed Dr. Suarez and feels HIFU is very promising. However, he agrees with my husband and I that we are interested in the actual tissue results, know if the capsule was compromised, get the final pathology for better decision making. Do you know exactly WHERE your husband's prostate cancer was? My husband feels more comfortable knowing if he is going to need followup radiation or not.
Here is what Anthony Horan, MD wrote in the book I mentioned above. He worked in the VA system for years, where he was paid a salary and thus did not any financial interest in promoting certain therapies. His credentials are impressive. "High intensity focused ultrasound, really a form of heat, has been championed in Germany and looks reasonable, so long as the adjacent nerves and external sphincter are conserved. I do not favor it because the line between cells dead and alive is jagged and indistinct compared to the frostbite line (of cryotherapy)." Just thought I'd throw that in. This guy contends that prostate cancer is overtreated in certain populations. There is much more to the book than I can write here. But did you know that they have had excellent results simply injecting the prostate with ETHANOL? Very cheap procedure. Who knows, there is research ongoing with that, and it may even replace HIFU. OK I'm done.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

The last I knew, the FDA wouldn't accept any studies or trials that weren't done in the US. Apparently, the rest of the world is too stupid to do things like that, in their view. It doesn't matter if a treatment has been in widespread use in Europe for a decade, or if it is backed by a ream of studies proving it safe and effective.

The FDA's motives are frequently suspect, and conflict of interest is common. They seem to be able to rapidly approve dangerous treatments if there is enough money behind them, while stalling promising treatments for no good reason, like the Provenge prostate cancer vaccine that they shot down at the last possible step last spring. Where is the public health interest in keeping a product off the market that could literally be saving thousands of lives per year (including mine, possibly), especially when there is no effective treatment for metastatic PCa available?

Docetaxel chemo is "standard of care" not because it cures metastatic PCa (it doesn't), but because in a single phase III trial it showed a small increase in median survival over the previous standard of care treatment. Provenge did the same, but was canned for silly, nit-picky reasons. Meanwhile, PCa patients are dying every day because of the myopic policies and bureaucratic foot-dragging of the FDA. So I certainly don't trust them to operate in MY best interests.

Just because HIFU (or any other treatment) is not FDA approved does not mean that it is not safe and effective. Do your own research and draw your own conclusions.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Yeah...my misery...on day 60 today I just went Sking all day in MN with my son while he was snowbaoarding...6 hours of sking...Oh In MISERY...not one pain...not one leak not one issue due to my Robotic surgery...went down Black dimonds...I'm sure not as good as Erisian..who looks very much like an extreme skier in his pic....but I can hold my own...and son just 12 this month first time on a snowboard was hiting the blue slopes at the end of the day and touched the terain park.....HIFU GAL...you have too many against you here...and have been exposed for a spammer...better just face it.

Randy_in_Indy

PS Bd...you will do fine on Bald Nome...your going in four months ...I fell once the entire day and not even close to feeling any issue...didn't leak throughout the day...Life is Great!

bdhilton
Posts: 759
Joined: Jan 2010

Randy...Hope I can share the same misery with my recovery…like I said awhile ago you are for sure a “poster child” for any procedure with PC…Keep up the great healing and see you on the other side of my surgery…Again, thanks for the laugh...

Btw…It is Half Dome and I forgot to mention this some ago about your brother’s goal of doing the fourteens (these are climbing the peaks in the Continental US that are over 14,000’ in elevation and 14 of them out west) …. I have done many of them already (some several times) but planning to do them all again …

Again see you all on the otherside of surgery!

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

He has done about 30 climbs on fourteeniers...said he has done several twice so probably 25 different 14teeners and said there is 50 or more. He indicated that he would not do the top ten to twelve because it would probably end in death - too technically and some are far away - lives in Parker CO. You'll be fine, your in the best hands you be in.

I will anticipate and await your posts...post surgery.

Randy in Indy

bdhilton
Posts: 759
Joined: Jan 2010

Sorry I meant California as “out west”. Lots of people head to Colorado (about 54) to bag 14eers but you do not often hear about the ones in the Sierra Nevada (about 12-15 depends who you are arguing with and I say 14). Any hoot… your brother is right many are dangerous but then again 14k the air starts to get a little thin and if you take trail or climb it is all a challenge and rewarding…. A challenge I hope to meet for a few years after my post PC surgery and waning mid years…

I am not bringing my computer so I hope to post something back here in about a week…

My best to all in their journey

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Erisian, I am not naive enough to fully trust the FDA - believe me - but honestly, the sparse data I've found on HIFU is just not very thorough or very convincing. There DO need to be more studies, at least to fully convince me and many others. The data is just not there nor is it complete.

bdhilton
Posts: 759
Joined: Jan 2010

But the International HIFU folks that bring us most of the fact of this treatment (from my research) are run by the same folks that manufacture one of the most used piece of equipment for this procedure (Sonablate® 500 )…Humm…Just a thought… :-)

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

yep, BD. I noticed that too. Wishing you all the best...

HIFUgal
Posts: 58
Joined: Sep 2009

No, International HIFU isn't the company that sells the ultrasound machine, it is placing them at clinics though, maybe they are distributors. Misonix is the machine maker, it was invented in 1941.

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

HIFUgal, you stated, "... they just keep quiet, you and bd are the bullies in the room". They simply don't share your view and they have certainly not tried to "bully" anyone into walking away from HIFU as a viable treatment option.

It has become very obvious that you are indeed pushing HIFU for your own personal financial gain. The manner and frequency in which you promote HIFU clearly demonstrates that you are in a conflict of interest. You also keep changing the story and about your husband's status right after HIFU. Isn't it convenient that he never speaks for himself?

In addition you:
1. twist the facts regarding the FDA, surgeons and radiologists
2. ignore everyone's input regarding HIFU
3. are evasive when someone questions you about your intentions.

You also mentioned, "If HIFU were to hire someone surely they could do better than me". One does not have to be "hired" to be in a conlflict of interest... (just a legal point here).

Again, very important: I am neither for nor against HIFU, but you are doing everyone a great disservice through your ranting and misleading statements about the FDA, surgeons and radiologists and about HIFU.

I also believe that if you continue to recklessly disregard everyone's input (including that of the other people who are doing something truly worthwhile about HIFU), you will land up in an emergency room... because they will have to surgically remove someone's foot from your butt.

hopeful and opt...
Posts: 1332
Joined: Apr 2009

One correction,

"I also believe that if you continue to recklessly disregard everyone's input (including that of the other people who are doing something truly worthwhile about HIFU), you will land up in an emergency room... because they will have to surgically remove someone's foot from your butt."

HIFU gal will not need surgical removal ............HIFU will do a better job.

dakotarunner's picture
dakotarunner
Posts: 96
Joined: Feb 2004

Seems like there has been enough said regarding HIFUgal's comments. Let's all call a truce on this.
HIFUgal, you have made numerous posts regarding your thoughts on HIFU. It would seem that you have put your all your information out at least once, if not many more times. People accessing this site can read and reason for themselves, and do not need a never ending dialog on the same thing. If thye have further questions, they can ask you.
To those who do not agree with HIFUgal. I see clearly see your point. My name got brought into one of her posts and I posted a note to her to basiclally keep me out of her comments. We all have our feelings on PC, and how to best handle it in our own particular situation. Although I wear a size 13, I do not think it is in anyones best interest to keep slamming a poster.
I strongly feel that we have bigger fish to fry on this site - so lets call a truce to this, meaning both sides call it good enough and drop it here and now.
If I have offended anyone, well maybe I meant to. Like I said, we have more important things to do.

Dakotarunner
PC Class of '04
POPCc

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Well put, and here's to a truce.

dakotarunner's picture
dakotarunner
Posts: 96
Joined: Feb 2004

Thanks mrs - your comment was appreciated.

Best to you and mrhisname.

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