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I went HIFU and it worked

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Posted 9/25/2009 1:38 AM (GMT 0)

Iggy:

I must have been snoozing during the "tyrannical attitude of this forum" that you have noticed as well as the "censorship".  Oh well, I guess it's in the eye of the beholder.  Even though I don't always agree with posters I have not found the attitudes you describe...maybe I'm not sensitive enough...

In any case, sorry for your diagnosis and good luck on your treatment.

Tudpock

Posted 9/25/2009 2:47 AM (GMT 0)
If we look at the title of the thread and think about past experiences with this subject and some of the deleting and editing done, then maybe this will ring a bell. Looked at from a different perspective, I am sure there are several former and present members who may feel that way, to some degree... Iggy, I'm sorry you feel that way, but this forum is large and diversified and full of different types, so we can't all agree all the time. Moderators must police and moderate to keep things from running off track.
Posted 1/4/2010 7:20 PM (GMT 0)
hello again,

I wanted to report back in that I had my PSA scored again and it has decreased, it is 0.2 now.  I don't know why HIFU scores are higher than post surgical, maybe one of you can shed some light on this.

This HIFU treatment works and I hope that you men start to inform all of your readers that there is a new treatment possibility, and it has at least one very satisfied customer!

HIFU is really no different than surgery in the fact that it's a delicate time consuming operation, us patients don't realize that, the doctors deserve respect. 

Posted 1/4/2010 8:00 PM (GMT 0)
The Belgium Health Care System has just finished a study on HIFU and said there was not enough evidence to move it outside clinical trials. The British Health Care system came to the same conclusion
http://www.ncbi.nlm.nih.gov/pubmed/19220245
The Japanese just releasted their long awaited long term study on HIFU and it was not impresssive.
Some patients have had excellent response to HIFU; but the few controlled studies of the procedure have shown it to have serious complications for some patients and cancer control not as good as conventional treatments.
The jury is still out and the procedure may get better over time, but it is not the golden cure that some proponents say it is.
JohnT
Posted 1/4/2010 9:13 PM (GMT 0)
My treatment was back last summer, July, so it has worked for me, and for my friend who had the HIFU treatment a year prior to me.   We sure think it is well worth the time of being cancer free, with no after effects to deal with.

It sure doesn't look like any other treatment is as beat up as this one is, there will always be someone who has troubles, and I am quite sure that surgeons aren't very happy about this, they will want to beat it down, no money in it.

I'm betting this will be the future, when we get the greed out of the system.

 

Posted 1/4/2010 11:44 PM (GMT 0)
To cheries:

Total newbie here, on the distaff side, but I have been researching different treatments. Your last question was about PSA levels after HiFu. While not giving an explanation, the Stuttgart definition is gaining acceptance as the "standard" for PSA levels after first-line treatment with HiFu. If you google Stuttgart definition hifu psa, you will find links to many articles. A lot are in the "for pay" medical journals, but the Prostate Cancer Infolink site referred to on this board has a pretty straightforward explanation, published May 21, 2009.prostatecancerinfolink.net/2009/05/21/defining-post-hifu-biochemical-treatment-failure/

Best wishes and regards, AS

Post Edited (Aprilsunny) : 1/4/2010 4:53:14 PM (GMT-7)

Posted 1/5/2010 12:03 AM (GMT 0)
My original urologist is a specialist in the open procedure. He told me that he had done 4 hifu treatments but that he travelled to Mexico to do it because it wasn't fda approved yet in the states. Told me that he could offer it to me for bout 25k with the caveat that he wouldn't recommend it due to my gleason, how young I was, and the uncertainty of the procedure itself.
Posted 1/5/2010 3:45 AM (GMT 0)
Cheries

Here is the problem with HIFU, it's only valid with certain low Gleason scores and a non-agressive strain of Prostate Cancer. If you are late in being diagnosed, most all HIFU surgeons won't use it. Because they know the failure rate is high.

I don't ever see it as being a main stream choice such as the open verus DaVinci surgery is now, the malpractice issue will always keep it as one of the lesser used options.

 

Posted 1/5/2010 6:14 PM (GMT 0)

hb2006,

When discussing failure for HIFU, are you deducting those HIFU's that didn't catch all of the cancer in the initial treatment? In other words, what is the success rate of HIFU's that are not followed with a positive biopsy? The reason why I ask that is because from what I have read, those who have negative biopsies following HIFU seem to be doing quite well. Of course, there are a lot of positive biopsies following initial HIFU treatment, which may negatively skew the statistics. However, that doesn't mean that further advancements will not improve the outcome. In the meantime, those who immediately fail HIFU, can get a second HIFU or radiation as salvage.  That really isn't much different from all of the other treatments.

Safe to say that more HIFU's need to be performed and outcomes followed. However, to me it does look like it may be a promising, albeit not perfect, alternative.

Posted 1/5/2010 9:31 PM (GMT 0)

All I'm saying is that if your Gleason is under a 5 or 6, your biopsy per cent is low and you have no incidence of any other medical conditions, HIFU is a good alternative. But I think it is hyped too much on the surface and guys get their hopes up too quickly.

In my case; my Gleason was high, my per cent  was 100% on the one side of my prostate and I have had Colitis for 20 some years. No HIFU doctor would have touched me. The da vinci surgeons wouldn't do it either.

Posted 1/5/2010 10:46 PM (GMT 0)
If your Gleason is 5 or 6 why get treated at all? If only 2% of Gleason 6 patients ever die of PC, and these are readily identified early; any treatment, including doing nothing, results in the exact same survival rate. If HIFU is suspect for high grade PC and just as effective as AS in low risk PC I just don't see the need for it.
JT
Posted 1/6/2010 12:00 PM (GMT 0)
John T,

Agree, with a qualifyer.....An individual with a GS 6 and a small amount of PCa who is old may never need any treatment. A younger individual may want to do watchful waiting and delay the possibility of treatment. I think anyone in their 40's or 50's will likely see progression at some point and its at that point that treatment would be advisable. If I could have done watchful waiting, I would have because once you have treatment, the watcful waiting continues to infinity anyway.

Posted 1/6/2010 4:14 PM (GMT 0)

I don't know as much about prostate cancer as many of you so I won't touch the subject.

But I do know that all this talk about spammers and scammers and hype are not people in the HIFU industry, they are patients like myself who are happy with their treatment and want to share their experience and help others.  For accurate info on whether or not you qualify one would need to telephone international HIFU and ask the professionals.  The only hype that I read are people telling others that they don't qualify, when in fact, they don't know who really does qualify, as the facts on HIFU are not out yet.

There is one fella who was treated with a Gleason of 9 over two years ago and he has a PSA of 0.1 today, he wrote up a story and put it at the International HIFU site.

I'm betting that there are men like me who would only be treated with HIFU, no matter the odds, I'll take an unknown years out with quality of life certain, rather than a 50/50 with the other treatments.

Posted 1/6/2010 4:54 PM (GMT 0)
cheries,

I have read many times that HIFU works well IF all of the cancer is killed. What I have also read is a that there is a fairly sizeable amount of positive biopsies following HIFU. That being said, the less cancer to treat, the better chance HIFU will work. That is why men with significant amount of PCa/high GS are not yet recommended for this treatment. And while those who failed HIFU can get "re-HIFUed," at $25,000 per shot, that is a lot of moola.

I don't disbelieve that a man with a GS-9 had success with HIFU but with what has been observed, he is likely an exception. I'm not saying that HIFU will not get better as improvements are made, all I'm saying is I wouldn't choose HIFU right now unless my cancer is relatively small. Just a note, cryoablation wasn't very good early on but with successive generations, its ability to leave a patient cancer free by killing substantially all of the prostate gland has improved immensely. 20%-25% positive biopsies following cryo in the 90-'s is now down to the 10%-12% area and that includes a lot of men with very large and very aggressive cancers.

Posted 1/6/2010 5:03 PM (GMT 0)
Cheries, that's why it has always been about choices and the freedom for each man to make his own decision. What many of us didn't realize on day one, was just how critical and important one's primary treatment choice is in reality.

My dr and I openly discussed HIFU as an option way back when, of course, since it isnt FDA approved for use in the US, it was ruled off the table. Also, in his research, he wasn't convinced there were enough after the fact stats out there to make a safe and intelligent decision about HIFU.

If one chooses that path, they have to take the full responsibility of risk on their own shoulders. A person will be outside the legal system of the US if something goes wrong. And if the procedure or its aftermath go south, who would one find to fix the problem? Those are the kinds of things I thought about.

And how does one pay for it? It's still an expensive procedure. My own research shows some promising results and fewer side effects on the surface (though I been around long enough to know there are always extremes in the numbers), but had noticed a few cases, where when something did go wrong with HIFU, it could go terribly wrong.

While the thought of side effects like incontinence and ED are serious subjects to ponder, eradicating the PC in the most efficient manner for a particular person's unique body should still be the #1 reason any primary treatment is done.

As far as side effects go with both surgical and radiation approaches, it is a bit of a gamble. But, on the other hand, there are lots of solutions and possibilities to dealing with both short and long term incontinence, and a large variety of products and procedures to help on the ED front.

In the end, its still a personal choice, and no treatment comes without a price, a risk, a chance of side effects. To me personally, it has always been about the cancer. I am a 4x cancer survivor at age 57, and I will end by saying, Prostate Cancer is an evil bastxxx, and shows no mercy.

Think long and hard, choose wisely.

David in SC
Posted 1/7/2010 4:54 PM (GMT 0)

It's $10,000. to be retreated with HIFU, not $25,000.

I pick cherries to have food and wine on the table, why not spend it on a better life?  I figure it's my son's money and he was all gung-ho for me to spend it on myself.

Yes, Purgatory, after all you have been through, it is ultimately the first decision that you make on how to go after this son of a gun that determines your entire future, if you chose HIFU you don't close any doors, you can still be radiated or have surgery, it's just that after you have met the HIFU team you'd never make those choices.

I've never heard of any fellas who had a positive biopsy after hifu treatment, by the way how do they biopsy something that isn't there?

Posted 1/7/2010 5:29 PM (GMT 0)
Not so sure what a person can expect if deciding to have surgery after any ablation therapy. Most surgeons would decline to do surgery after ablation by cryotherapy, radiation or HIFU because the risks of complications are extremely unpredictable. If someone is considering HIFU because they feel they have surgery as a fall back they should ask a surgeon about the fall back option BEFORE preceding with any ablation therapy. Same with radiation. It is very wise to get those things planned before starting any therapy. Many forget to do the follow up to the question "What if plan A fails?".

I have spoken to several surgeons that have spoken in our live groups and they absolutely will not perform surgery on less than virgin tissue. Exceptions are some hernias, and TURP's.

Cost of HIFU is still out of pocket expense. Because I have advanced prostate cancer and it was definitely a bad option for me. Plus when I started out it wasn't an option getting any attention. I will mention that all the negative things boasted by HIFU centers about surgery and radiation, I have done both and my plumbing works well and side effects of these therapies is nil. I guess the lesson here is choose your medics wisely...

Tony
Posted 1/7/2010 7:00 PM (GMT 0)
Hello all. When I was researching treatments I looked into HIFU and was impressed with the results from recent generation machines. I suspect that the ten year numbers with the newer machines will be more impressive than current ten year numbers (or thereabouts) which come from first generation equipment and less experienced operators.

hb2006 above predicts it will always be one of the lesser used options. I don't predict, but I'd not be at all surprised, if in 10 years HIFU was as common and as well regarded as da Vinci is today.

As for HIFU and then surgery, I spoke to a well regarded, experienced, John Hopkins oncology trained, da Vinci surgeon, who told me he had removed a prostate after HIFU and he'd done it with the da Vinci. And this was a prostate that had been hit with HIFU twice. It wasn't pretty, but the surgery was successful.

One thing I will predict is that the cost of a HIFU treatment will fall to a fraction of what surgery costs. The big expense, best I can tell, with HIFU now is the profit line. In business bonanza margins don't survive long term. With much lower cost whichever health care insurance is paying, be it a private company in the U.S. or the government here in Canada, will be backing and pushing health care facilities and doctors to offer HIFU. Further, with even more sophisticated machines, I predict HIFU results will be close enough to surgical ones that those that pay the bills will become huge HIFU fans. And, I'll also predict that as the computers used to scan the prostate and determine the treatment pattern become more sophisticated hospitals will be using practitioners to do what will be viewed as a procedure further lowering costs. These practitioners will run the HIFU machines and they'll be doing the sedation as well.

Obviously I can't forsee the future but I do think it evident that cost is going to be a big driver of health care options. Today every hospital, every doctor, every end payer, makes trade offs between perfect and acceptable. As patients, consumers, we want perfect, but we get what others deem acceptable. I can't see the cost/acceptable equation changing.

It will be interesting watching not just HIFU but all of the treatment options for PCa evolve over the next few years.

Sheldon AKA Sleepless
Posted 1/7/2010 10:08 PM (GMT 0)

Cheries

You can still have a greater than 0.00 PSA via the blood tests, so even though HIFU removed all your prostate it's possible that some of the cancer cells escaped before your HIFU treatment. And they went to other areas of your body and remained hidden as they started growing.

And a urologist could do a biopsy on the bladder and come back with positive cores. I don't see that far fetched at all.

My dad had a RRP in the late 1980's; everything was removed including nerve endings. His PSA started rising within 5 years so he had Radiation Treatments for months. That took it back to zero for many years. Then recently, his PSA started rising again and now he is on hormone treatments.

All this means is that those Prostate Cancer cells love to circulate in your body if they get out prior to the first treatment and will aggressively grow over time. My dad is still alive but has quarterly PSA tests and he is 88 years old.

Posted 1/8/2010 4:18 PM (GMT 0)
hb,

Oh they biopsy whatever they stick? the bladder? your dad had a hard road, sounds like he's traveled it well.

I can understand how cancer cells could escape in the process of surgery, with all the cutting, but for cancer cells to escape during HIFU, no that I don't picture can happen, as nothing is cut, it's cooked.

Time will tell. But I think I got real lucky here.

I was told that my PSA of 0.2 is excellent. I feel good as new, in fact I find that when I go to the toilet I pee more than ever, which tells me that I'm holding it longer than I ever thought I could, without even knowing it.
Posted 1/8/2010 8:43 PM (GMT 0)

No, the cancer cells escape the prostate prior to your treatment, regardless of whether it's HIFU, RRP, Radiation, Chemo, Hormones or whatever. That's why there is all the focus on PSA testing after treatment. The cancer cells can get into your nerve endings that surround the prostate, from there into your bloodstream and go anywhere in your body. This could have happened years before you were diagnosed. Surgery has nothing to do with it. If the prostate cancer cells are in your lungs,  your brain,or other areas; HIFU would miss them just like everything else.

On another question, your son realizes that he is now "High Risk" right? There is such a genetic history with PCA that he should probably start the PSA blood tests in his 40's and get the dreaded DRE's in his 50's.

Not sure if you have ever visited the Phoenix5 web site. It chronicles the history of a guy who had the cancer escape his prostate and went all over his body. By the time it was discovered, it was too late. He passed away from it a number of years ago. His wife keeps the site up as a memorial/chronicle. Kind of a Frank Zappa story.

Posted 1/9/2010 1:02 PM (GMT 0)
Friends,  (This is a quick one for you James!  |||;->)

In the Prostrate Cancer treatment choice decision tree, it seems that HIFU will eventually become an alternative choice to (non-proton beam) radiation treatments.

A physician at M.D. Anderson (Houston) told me that while the research is promising, (epecially in Germany & Japan) that many HIFU researchers/practitioners (e.g., specifically in Mexico) in their eagerness to increase their patient count (and statistical significance) have crossed an ethical line in their recruitment of patients.

This point is not about data skewed by cherry-picking the healthiest patients.

Informed choice in a procedure requires full disclosure of "money for referrals."

My thought and prayer for all:

"Nothing But Nets":  A Cheap, easy, no-side effects cure for all cancer, now.

ICTHUS!

CCedar

Posted 1/9/2010 4:45 PM (GMT 0)
Cedar,
I don't believe doctor's crossed an ethical line, what I saw and met while in Mexico were men who chose to go HIFU and they knew the facts, that it was new, they were more than willing to throw the dice, they felt that all of us throw the dice, no matter the choice.
I do not believe the doctors were trying to increase income, but anxious to prove HIFU can work on extreme cases, and we really don't know if the fella with the Gleason 9 was unusual, now do we? I feel these people with aggressive cancer that are willing to enlist in HIFU early on our our heroes, maybe it can kill all the cancer, let's wait for the data.

But be weary of the pro and the con hype!
I'll be back with my next PSA.


By the way men, I didn't get up to go last night, I slept all the way through.

yes, my son realizes he is "high risk", as both my brother and I have had "it", and I do feel it's all in the genes, don't all of you? my dad died early on from another cancer, ain't pretty.
Posted 1/9/2010 4:57 PM (GMT 0)
One would think its all about the genes, but doesn't always work that way. Cancer is virtually unknown in my family, either on my father or mother's side, yet, I have dealt with serious cancer now 4 times in my life. My doctors say that someone has to be the first in a family line.
I think the constant exposure to very toxic materials when I was at ages 18-22 had a lot to do with what I have been dealing with as an older adult. My original medical oncologist strongly feels that is the case.

By reading the papers, celebrities and wealthy people often fly outside the US to have unaprroved tests and treatments done for all kinds of maladies. I still think the jury is out on HIFU, sounds good on paper for some cases. But I have a high regard to our medical systems here in the US, and a big believer in the safety net provided by the FDA. I expect to get flamed for that one.

Perhaps when/if HIFU is approved here in the US, and when insurance companies back its use, and there is more mainstream data to study from its patients, it could in theory, be another tool in the fight against PC. We all agree, that one tool doesn't fit all. Even with HIFU, you need to fit a certain criteria range.

As far as a Gleason 9 person risking HIFU as being a hero? I will be polite and leave it as, that's a very subjective call.

David in SC
Posted 1/9/2010 5:03 PM (GMT 0)
It's terrible that prostate cancer is so prevalent in your family. I am sorry to hear that.

I for one am very sorry for the harsh welcome when you arrived. While I know you are happy with your treatment modality, and a good representative of patients that chose HIFU, your arrival was timed with another series from an individual that were overly advertising in a way not permitted at HW. Especially for new members. However the decision to take a strong stance was because that individual was being nasty about common treatment choices the majority at HW had undertaken. They were also using inaccurate data at that to promote HIFU. Again, my apologies.

My hope and prayers are for you to have a very long and healthy life. Soon enough HIFU will be legal in the US for use as a treatment outside of clinical trial. I digress to the guidelines from the NCCN that list those who best qualify for HIFU, Cryo, surgery, and radiation, in low risk cases, that no treatment is the recommendation. Here is the link describing this new standard:

prostatecancerinfolink.net/2010/01/07/nccn-updates-prostate-cancer-management-guidance/

I understand however that for many men, doing nothing is not a good decision for them. It causes worry and lowers quality of life for those that live in anxiety over this disease. Perhaps this will prove to be the class of patient that is best suited for HIFU.

I do not disagree with Cedar on questioning the ethics of doctors who practice in the US and lure patients out of the country for treatment with unapproved procedures. These doctors could just as easily stayed in the US and helped with the trial period by participating in the trial as opposed to receiving large sums of cash payments. This is not to question the use of HUFU, but rather, questions the use of the procedure for profit ahead of the community need for validation of the use of HIFU.

I extend a very late welcome to you at HW.

Tony
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