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HIFU clinical trials

HillBillyNana's picture
HillBillyNana
Posts: 106
Joined: Jun 2009

I have been reading about HIFU because a friend of ours is going to go to Canada and have that treatment. We had not heard of it before my husband had RP for the prostate cancer. It was completely contained in the prostate and it seems to me he would have been a good candidate for it. I have also been reading about the clinical trials going on in the USA. The treatment is not new, but just not approved by the FDA here. I just wonder if anyone on this discussion board had had the HIFU treatment. I will let you know how it turns out for our friend. The cost is a huge factor for many/most men with PC. And the distance from followup is another. But I think my husband would have seriously considered it if it had been offered as an option.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Hi, Nana.

A fairly new poster on this thread, buzzz, recently had HIFU and might be able to provide you with some insight.

buzzz
Posts: 26
Joined: Aug 2010

Yes, I had HIFU a year ago, I went to Nassau for treatment, International HIFU, based in North Carolina, books us to go out of the country for the treatment. It was $25,000. plus travel, best money I ever spent.

It was almost three hours of sleep time while I was being treated and then they returned me to my hotel. Treatment is given via a probe up the rectum, I didn't feel anything afterwards. He'll need a catheter for a couple weeks, which wasn't too much of a bother (now looking back at it).

My PSA has been undetectable, I experienced no pain and no after effects, life simply went back to as it was. The best news is that there is a new improved Sonablate which has a color doppler ultrasound in it, so treatment in the last year and a half has mostly results with undetectable PSAs. Prior to that the PSAs were in the lower numbers as they left a drop of tissue that was benign. I don't know everything, just was the best experience I've had in the medical world.

I didn't need any follow up visits. Only had to have the catheter pulled which my general doctor did.

All HIFU patients will tell you to check how many procedures the doctor has done, as it takes much patience and much experience to do it right, when HIFU was started there were stories of rectal burning, but not today, there is a temperature control and the doctor is monitoring every second. Get referrals & call them.

HillBillyNana's picture
HillBillyNana
Posts: 106
Joined: Jun 2009

He will be glad to hear such a positive outcome. Had you had any other treatment before the HIFU?

buzzz
Posts: 26
Joined: Aug 2010

No, no other treatment at all, and nothing else since.

Because I used International HIFU I was given a list of the men in my area who also had HIFU and we've had a lot of fun on the phone talking about it, I met one guy. No one else had any other treatment either, and we are all very happy we found HIFU. We all do our best to try to spread the word. Can't wait for approvals so that everyone can have it. I have no idea where doctors draw the line on who can or can't get it, what your score must be. Will you let us know it goes for him?

HillBillyNana's picture
HillBillyNana
Posts: 106
Joined: Jun 2009

He is going to Canada in November. Not sure of the date but I will be sure to let you know here on the discussion.

twowheelsonly
Posts: 22
Joined: Sep 2010

Hello..

I did research this as well, HIFU is a wonderful process where they use high frequency ultrasound and basically cook the cancer cells by raising the temperature of the cells to 60 degrees celcius.. This procedure is not new, it is approved & used in Europe for many years and is the preferred method of treating PC that has not matastized, It is done in 1 day with no side effects.. This treatment has been used and is effective in treating PC so you need to consider why it has not been adopted here in the US, when you consider the medical system here is based on a profit system where as in Europe healthcare is based a non profit system so treatments that work for PC do not fit the US business model & therefore will probably not be approved because of the profit model in the US..

Interestingly, the manufacturer of the HIFU equipment & Sonoblat technology was developed in the US.. It's my belief that the AMA and Pharma are not interested in the success of this technology as it would seriously lower the income they generate in treating PC and that would not be good for big pharmasuticals, oncolists and suppliers of radiation equipment.. like CyberKnife. If you consider that the HIFU treatment as a break through in treating PC which indications are it is.. then your Medical Doctor could provide the in house treatment and you would be able to go home the same day treated.. the only thing would be to watch the PSA level to see if it was lower and holding (watchful waiting).. If this was adapted the current HIFU cost of $20 to $25K would be reduced to say $2 to $3K and that is considerably less than just the drug treatments PC patients have to pay big Pharma..

I know this may upset some people on this forum who have decided on their course of treatment but if this other technology was not discussed, then people would have less choices, and since PC is very personal and deadly no one is right or wrong here.. unfortunately not everyone can affors to pay $25,000 for this treatment, I assume the reason the cost is so high is due to the fact that we are dealing with a profit driven idiology and so that is the price one must pay... lets face it, we all got this PC and are trying to get better so we can continue to enjoy our lives with our family and friends.. we can only afford what we can afford.. if we have no medical or financial resources we are doomed.. again am only expressing my opinion I do not profess to be an expert in anything..

Stewart

buzzz
Posts: 26
Joined: Aug 2010

Stewart,

You nailed it. Although I think the reason it costs so much off shore is because we are funding the clinical trials here in the U.S.

They just built a huge cancer wing on my local hospital, they wouldn't want to turn it into a homeless shelter now would they? I read that cancer brings in 210 billion $ a year, is that right? That's pretty hard to fight.

Basically HIFU is the same as cyber knife, only it's ultrasound instead of radiation, and I just saw an ad on TV saying that cyber knife can treat brain cancer, prostate cancer and other cancers, so I imagine that HIFU can too.

If enough of us know about it and make enough noise maybe it will be approved someday. There are good doctors who I hope press for approvals, I hope there's enough good and it wins. I feel badly that I got it and others cannot.

twowheelsonly
Posts: 22
Joined: Sep 2010

Hi Buzzz

There is one distinct difference between these 2 technologies, CyberKnife uses radiation which is gamma rays to kill cancer cells, radiation contaminates any other surrounding cells that it comes into contact with.. HIFU is totally different because it does not use any radiation and only uses Ultra High Frequenscy laser which the Dr. uses to cook the cells effected which kills the bad cells, it's focused laser beam raises the temperature to 60 degrees celcius which kills the cells, there is no radiation.. don't get me wrong I think CK is a much better technology than the previous methods of radiation therapy which was beamed at the Prostate and other tissues which it also killed.. of course I am no expert but I know when I had my CT Scan everyone left the room because I was being Xrayed which shows that radiation is dangerous to life...

Stewart

hopeful and opt...
Posts: 1293
Joined: Apr 2009

I wonder, how does the technology work when the HIFU is done, that is what is the process, and how is the accuracy of the HIFU controlled? Does HIFU ever hit areas outside of the prostate...if so how ofter does this happen? What are the possible side effects or complications of HIFU?

If one lives in the USA, and has the procedure done outside the USA, what does the person do for follow up if there are side effects or complications?

Thanks,

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Actually, I think there are some significant differences between CK and HIFU aside from the obvious one of using high frequency sound waves versus radiation. As I understand it, HIFU uses a number of different high frequency signals that are directed by the doctor using a real time MRI scan and an ultrasound probe which transmits multiple signals through a probe in the rectum. When the signals converge on a focus area, the temperature rapidly rises to kill the cells in the area immediately, sort of like focusing the sun’s rays with a magnifying glass. As far as I know the HIFU procedure has nothing to do with laser technology as that is a completely different use of the light spectrum while HIFU uses sound waves. CK, like all radiation, interferes with the DNA of a cell and the molecular level causing it to die when it tries to divide, a process known as apoptosis. Radiation can take several months to kill cancer cells while HIFU does it at once. CK is also programmed to deliver a fairly high biological equivalent dose to the entire prostate while, as I understand it, HIFU is directed where the doctor wants it and may not address the entire prostate gland.

One positive from HIFU is that it can be used more than once to treat prostate cancer. Side effects that I have read about include a urinary stricture rate of more than 25% that sometimes requires additional surgery to correct although some of the newer machines may do a better job that the older models in avoiding this effect. Some studies from Japan, which interestingly has published a lot of papers on this procedure, show a fairly high rate of ED issues but the studies all involved rather small cohorts. I have not read any of the preliminary results of some of the HIFU clinical trials which are ongoing in the United States.

I have read that HIFU is sometimes used for soft tissue tumors in other parts of the body such as liver, pancreas, bone, and soft tissue cancers. I do not believe it is used in brain cancer at the present time. HIFU can also be used as salvage treatment if radiation fails.

Both CK and HIFU lead to a residual PSA after treatment since the prostate remains.
===================
Dx in March 2010 at age 50. PSA 4.3. 1 of 12 cores positive with 15% involvement. Stage T1c. DRE normal. No physical symptoms or family history.

Treatment: SBRT via CyberKnife in June 2010. 3 month PSA = 1.3. No side effects.

buzzz
Posts: 26
Joined: Aug 2010

hopeful and optomistic asked: Does HIFU ever hit areas outside of the prostate...if so how ofter does this happen?
Ultrasound is non-ionizing (as opposed to ionizing in radiation. Tissue in the entry and exit path of the HIFU beam is not injured. The beam hits solid tissue (tumors)and cooks it to 80-100 celcius, but the beam goes right through watery tissue without harm.

and: What are the possible side effects or complications of HIFU?
I haven't heard about the 25% that kongo reports of stricture.

and: If one lives in the USA, and has the procedure done outside the USA, what does the person do for follow up if there are side effects or complications?
International HIFU gives you a list of your local supportative doctors. But really, any doctor would do, plus your HIFU doctor stays in touch with you.

Mostly I just wanted to say that the clinical trials are finished, except there are ongoing clinical trials for those who radiation failed.

I have an undetectable PSA so there's no residual in me.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Are you continuing to see a urologist for regular PSA testing? When you wrote earlier that no more follow up was required, I initially assumed you were referring to the HIFU treatment. It's great that your PSA is undetectable but since there is some prostate tissue left I presume you're on a monitoring schedule to check for recurrence. In the study shown below, about a third of the men who had follow-on biopsies showed residual cancer.

An interesting study of HIFU published last year in the British Journal of Cancer can be found at:

http://www.nature.com/bjc/journal/v101/n1/pdf/6605116a.pdf

It goes into a lot of the statistics. The conclusions it drew at the end were:

"HIFU in the treatment of prostate cancer can result in acceptable
short-term levels of cancer control. Moreover, it can be used with a
high degree of certainty that the man will remain continent
afterwards and two-thirds might expect to have erections sufficient
for penetration 1 year following treatment. Importantly for some,
this can be achieved in a one-off treatment in an ambulatory
setting with the majority discharged home the same day after a few
hours. Nonetheless, our data remains immature and the determinants
of outcome are not yet known."

Like many emerging treatments, including CK, there is a paucity of long term data but that doesn't mean it isn't effective. One of the difficulties with HIFU, I believe, is that there is little to compare it to. With CK you can compare its early data profiles to other forms of radiation treatment such as IMRT or HDR brachy. HIFU continues to evolve and the data from the British paper is about three years old even though the paper was published just last year.

BTW, the urinary stricture issue in this study is 30%...but basically it resulted in a narrowing in the urethera which had to be opened up with a local "reaming out" so to say under local sedation.

In any event, it seems to be working well for you, buzz, and I'm rooting for your continued cancer free testing without side effects.

Best

buzzz
Posts: 26
Joined: Aug 2010

Of course, every 3 month PSA test for two years, then every six months, then yearly.

hmmmm, are you cherry picking your studies????? (smiles) yes, that study is 3 years old, and the technology has improved and so have the techniques. I have no fear. And I don't have a narrow urethra, I pee fast now, all systems go.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Honest, I tried to use the most recent study I could find. Really. Glad it's all systems go.

twowheelsonly
Posts: 22
Joined: Sep 2010

Good morning..

I have been reading this post and I am so greatful for all the sharing and learning I have found so far.. with everyone sharing what we know its good for the group as a whole.. I know if everyone could wave a magic wand and heal us all we would all be doing it.. in a way we are with the knowledge we have and share so Thank You all for everything you do for all of us..

Stewart

griff 1
Posts: 114
Joined: Jun 2010

my personal doctor had this procedure in jan and he is doing fine, the only thing he has to do is psa tests. he wanted me to do it but i guess he makes a little more than me i had robotic and i am happy i choose that path. maybe if i could have afforded it i might have went that way. goodluck to all griff

hopeful and opt...
Posts: 1293
Joined: Apr 2009

.... for the answers,.........it's appreciated.
Some more questions

Has there been long term studies to measure the effectiveness of the procedure...ie...what is the percent of reoccurances.

Say if one can do a partial procedure, what is the chance of reoccurance....that is if there is unidentified cancer in the part o the prostate not being treated.

Does one become impotent after treatment?

What is the effectiveness of treatment at various stages of cancer?

buzzz
Posts: 26
Joined: Aug 2010

hopeful & opt...

I think that all of your questions can be answered by quoting what griff 1 said, "my personal doctor had this procedure in jan and he is doing fine, the only thing he has to do is psa tests. he wanted me to do it "

Regarding impotence, I have heard of men having to take Viagra or Cialis after HIFU, I think that it really depends on age, as the younger you are the less chance of impotence.

I would have been someone who could have only had half the gland treated but I chose to treat the entire thing. Partial HIFU wasn't mentioned as an option for me, but I know that only half of my gland was cancerous, I figure that the doctor didn't mention partial because he doesn't think it a great idea either.

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