Have u guys heard about HIFU ?

If you go up and type HIFU into the search box, you will see that HIFU is discussed here.
Members Ben, HIFU, Matthew J, JerryB-UK, Gooog, murph, Trog, probably others I've overlooked had HIFU.

Hi Donna,

I looked into HIFU rather carefully (at least for me) and when my Gleason was 3 + 3 I planned to go to Toronto and have HIFU done by Bill Orovan at his clinic there. The web site is www.hifu.ca Orovan is head of surgery at McMaster University in Hamilton Ontario, one of Canada's leading medical schools, and was trained at M.D. Anderson. I knew two doctors, one who was with him at Anderson, and one who had worked in the O.R. with him here in Canada, and both spoke highly of him. If you decide to call ask to speak to Janice. Janice is a nurse, seemed very knowledgeable, was generous with her time on the phone, I never felt pressured at all, and she is also Bill's wife.

The cost was about $20,000 U.S. and it is an outpatient porcedure. The hotel they book you into is a couple of blocks away from the clinic. You walk over in the morning, and walk back that afternoon. The next day you fly home.

Best I could tell from talking to various doctors and from reading on the internet the short term stats for HIFU were as good as the short term stats for surgery. Long term stats are not available for HIFU. It hasn't been around long enough.

One thing I liked about HIFU was that a treatment didn't rule out any other future treatment, including a second HIFU or a da Vinci prostatectomy. I spoke to a surgeon who had removed a prostate via da Vinci after two HIFU treatments had failed to keep the PSA down.

All is not roses, however. It never is, is it? The treatment, as you'll learn, is not approved by the FDA in the U.S. but is approved in Canada by our equivalent of the FDA. There are possible complications with HIFU, just as there are with any treatment. I'd not want to minimize them at all, but best I could tell issues were likely a little less than with surgery. Comparison is difficult because experience of the doctor is a critical issue, although probably less so with HIFU as it is very computer dependent for generating the proposed treatment plan which is approved by the doctor. I spoke with one doctor, who doesn't do HIFU, but had sat in on several HIFU sessions to learn about it and he said that unlike surgery where the surgeon is working all the time, with HIFU the doctor can be sitting, having coffee, chatting away, while the computer and the HIFU probe do their work.

My HIFU plans were short circuited by a reread of my biopsy slides which said my Gleason was 3 + 4. No reason to think the second read was any more accurate than the first, and the 3 + 4 was everybit as acceptable a Gleason to have treated by HIFU as the 3 + 3 was, but one downside --- at least for me --- is that with HIFU there is no prostate to do pathology on afterwards. A HIFU advocate would say, so? What difference does it make. Once your prostate is out it isn't pathology that matters, it's your PSA. But, I knew if there was a possibility I was a Gleason 7, that I might have some "4" cells, I wouldn't be happy without the pathology afterwards. So, off I went to dance with da Vinci.

I made absolutely the right decision, for me. And I was lucky. My surgery went well, my recovery was not a problem, I'm doing well with a zero PSA after six months, but if I had a second prostate to give to medical science, knowing everything I know about HIFU and surgery now, I might be more inclined to opt for the HIFU. The reason is that now that I have the pathology, and have been reading this group for a much longer period of time, I better understand that my "excellent" pathology is all very nice, but it is what it is, and the only thing that matters is my PSA. The pathology may be a fine leading edge indicator of what may, or may not, happen with my PSA but that's all it is --- an indicator.

But, it's easy to think if I knew then what I know now I might have made a different decision. Fact is a radical prostatectomy is the gold standard for PCa if the PCa is organ contained and the long term stats are available for surgery, and they're not for HIFU and I'm a conservative kind of guy who likes to cover his bets, so in a real life situation I might still opt for surgery.

I tell you all this to acknowledge treatment decisions are not easy ones. I found the worst part of having PCa so far was making the treatment decision. Once that was made I felt a huge weight lifted. I still feel good about my decision and don't regret it for a moment but if I had to do it over again, knowing then what I know now, I'm not sure what I'd do.

Good luck for whatever course of action you decide on. I hope you'll keep posting and let us know where you're at and how things are going.

Sheldon AKA Sleepless

thanks for all the interest, I've been all over the internet, and I've heard quite a bit so far.  I read your story, Sleepless, several times, thank you for the time you took to write it.  I've been watching his PSA increase for several years, and started  reading here a long time ago, as his brother just had prostate cancer.

But, dogyluver,

Hifu isn't freezing, it's cooking the tissue. 

We're going to see a doctor who is recruiting men for the trials next week!  My husband is 64, so the trials aren't men less than 50 like you said, here are the eligibility requirements:

 

Ages Eligible for Study: 40 Years to 75 Years
Inclusion Criteria:
1. Gleason score ≤6;   2. T1c or T2a carcinoma of the prostate;

  3.  serum prostate specific antigen(PSA) ≤10 ng/ml;

  4.  prostate volume <40 cc;

 

I am very excited about the trial!  I've been faxed pages and pages of info from the hospital.  I feel I am dragging my husband along, he refers to himself as the victim.  But, he won't even talk about any other treatment.

I've read the post from dogyluver and as you can see her perception of HIFU reality and mine are quite different. Each PCa person needs to make their own conclusions based on their research. She has hers, I have mine. Each is valid for us, it isn't necessarily for others.

However, there is a factual (at least I believe it to be factual) error in dogyluver's post regrding freezing. HIFU doesn't freeze, it is a heat process, and treats a pinpoint area at a time and the pattern is run (as I understand it) so that heat doesn't build up in an area. Further, the reason, according to the HIFU people, that they have such success with little nerve damage is that the ultrasound picture gives such an accurate view of the nerves. True, or not, I don't know, but from what they can tell with ultrasound about heart valves on a small fetus I don't reject it as impossible.

In general, I think patients need to remember that the credo of doctors is: First do no harm. It is not: First, cure the patient. I think we tend sometimes to forget how conservative most doctors, and the medical system, is. That doesn't mean that we should be swallowing every supplement pushed in TV ads, or rush off for injections of rat urine in some off shore clinic, but it does mean we, as patients, need to keep open minds and seek cures where and when we can. Further, I think we in Canada and North America are a bit smug about thinking we have the best hold on science, and the best in medical care. The story of ulcer cures and stomach cancer prevention being discovered in Australia (for which the two doctors recieved the Nobel prize) years before gastroenterologists in North America --- still performing totally unnecessary surgeries for years --- would listen is salutory. The famous Australian research was 1984. Best I can tell it was 1997 before North American government agencies and doctors had the Ah Ha moment.

I'm not suggesting the Europeans using HIFU have it right, and we have it wrong, only that just because it wasn't invented here, and our doctors know little, or nothing, of a treatment (or worse, think they do when they don't) isn't sufficient reason for a patient not to do their own research. If your reseach convinces you, as it did for dogyluver that HIFU isn't for you, great. If, like myself, you find it to be based on some pretty good science, then that's fine too. All I encourage is each person to listen with an open mind to the good and not so good of any treatment, the experience of others, and make your own assessment.

Sheldon AKA Sleepless

Sheldon AKA Sleepless

Hi donnathewife

I had HIFU in the UK at the end of October and my first PSA result, received a couple of days ago, was 0.4. Bearing in mind that I had focal treatment (i.e. I have prostate tissue still remaining), this result is encouraging, although there is obviously still a long way to go.

If you are interested you can read about my experience with HIFU - and that of others - at http://www.yananow.net/Experiences.html#hifu

I certainly would not wish to portray HIFU as necessarily being superior to any other form of treatment for prostate cancer. Everyone has to make a personal decision on the type of treatment they feel may be best for them. However, I am slightly concerned that Dogyluver seems happy to comment rather negatively about HIFU, both in this thread, and in another one recently at HealingWell, based on an apparent lack of knowledge about the procedure.

Her research appears to have been rather limited, as she is plainly confusing cryotherapy with HIFU. Cryotherapy freezes tissue; HIFU heats tissue. Secondly, although HIFU is still the new kid on the block compared with some other treatments, it does not fall into the category of 'so new' and 'not much is known'. It's been around for 10 years or more although it's fair to say that it only started to become more widely used perhaps six years or so ago. There have probably been in excess of 20,000 procedures carried out around the world, and a significant amount of experience and data have been accumulated. However, Dogyluver makes some good points in general about choosing to have treatment with doctors who have gained considerable expertise in whichever type of treatment you select.

Cheers,

Jeremy

The best answer I can give is there is still a prostate gland-in some form- left after HIFU, which will still have residual amounts of PSA in it, whereas, usually the surgery removes all that, plus surrounding areas that contain the same psa.

We were disqualified for the clinical trials  last week, m hubby's gland size was over the limit by only 2cc.  The doctor spent a good amount of time telling us about hifu, the trials and the results he has seen to date, which he said were very good.  He recommended we wait a year and come back, as the cancer shouldn't grow much, and he was diagnosed early.

 

I couldn't stand the thought of waiting, I want to get it out of him.  Nothing like being cut off at the knees.  Then we told our families about our ordeal and they said they would pitch in to help pay for it, we are so blessed to have them.  I sent in Bob's paperwork and we were just approved for hifu in Mexico, we are so happy!  I've cancelled our cell phones, home internet, I'm going to cut his hair and my own, from now on, YES!  there are ways to save money!

 

I figure that we either pay now or pay later, I'd rather pay now.

 

Wish us luck!

My prostate size was reduced from 52cc to 28cc by 3 months of hormone treatment, when I was thinking of having brachytherapy.  BUT, I think it is likely that the conditions of eligibility for the clinical trials may preclude a person who has been on hormone treatment within 6 months prior to the trial. That was certainly the case in my situation, where I could have gone into a HIFU trial here in the UK if I hadn't been on hormone treatment. It's frustrating but I can understand that relatively recent hormone treatment could possibly skew the trial results.

Anyway Donna, great to hear that you and Bob have decided to go for HIFU in Mexico.

Jeremy

donna, sorry things sorta came discombulated for you two. However, thanks for the good info. We seldom have access to info dealing with the procedure that isn't tinged by spamming for the same. You sources are helpful in making us aware of the details of a future treatment options.

Donna

I'm glad that you are finding a solution but I would like to point out that many men have either Da Vinci or open surgery and other PC treatments who will recover completely without any after effects. I have male friends/co-workers  that had either surgery treatment, they went through short ED and Incontinence periods (weeks not months) and now are 100% back to normal.

The web sites tend to have either men with issues they are trying to have resolved or others that like to share info and help. When you compare the thousands of Prostate Cancer surgeries performed each month to the number of people on the web sites, there are fewer than 5% that post. My surgeon alone did 10 a week, his group performed a 100 a week both Da Vinci and open. There are five Urology groups where I live who were all extremely busy. Which is one reason why I never see HIFU becoming as mainstream as the other treatments.

Good luck 

Donna,

Given your husband's stats, a low gleason and low psa, just about any local treatment will work well with the same cure rate. The cure rate for all local treatments with these stats is about 95% and the overall death rate is about 2%-3%.

Did you look at any of the other local treatment options? HIFU is about $25,000 and you have to travel. Surgery is about $25,000 to $50,000. External radiation is about $40,000 and Brachytherapy is about $10-$15,000. All will work well in his situation, so I don't know why you are fixated on HIFU, especially if you don't have the money.

The side affects from Brachy are similar to HIFU except the short term side affects are much less, no catheter, no hospital stay. In any event any treatment you choose will work well and the doctor performing the procedure will have a greater affect than the treatment you choose.

JohnT

Donna, JohnT is right: With Bob's stats just about any 'cure' will work as well as another and doctors will be falling all over themselves to work on him --- he'll make their stats look good!

However, when I say "Bob's stats" I am referring to the pathology report you posted. Pathology is a bit art, and a bit science. I understand there are clear cut calls, but some that are borderline. My first pathology read said 3 + 3. At the urging of a John Hopkins trained urologist, oncologist, da Vinci surgeon, I had my slides reread. Both pathologists were considered to be at the top of the game. The second one said 3 + 4. Doesn't mean he was any more right than the first, but the possiblity I might have "4" cells changed my thinking on treatment.

First thing you need to do is get Bob's slides reread. If the second read agrees with the first Bob's got lots of great options. If the second read suggests some of his cells might be "4" then he's still got lots of great options, but more need to make a choice and get going.

Before you worry too much about HIFU, or seeds, or da Vinci, you really need to have confidence that you know what you're dealing with. It is not unusual for a Gleason score to be reported differently after surgery ---- usually higher ---- and so, with respect, I urge you to get a second read.

Once that's in you can make decisions with more information and more certainty.

By the way, when my "final" pathology was done, looking at the whole prostate, as you can see below that pathologist, a third pathologist, agreed I was a 3 + 4 = Gleason 7.

I know it's easy for me to say, and not easy for you to do, but you've got time here, lots of time if he's really 3 + 3, so don't feel a need to rush to a decision --- but I do encourage you to move now on getting a second read on those slides, and by someone who reads lots of prostate tissue and has a reputation for making good calls.

Sheldon AKA Sleepless