Two Sonablate HIFU Experiences: A Good One and a Bad One

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Two Sonablate HIFU Experiences: A Good One and a Bad One

by akt1000 on Thu Dec 15, 2011 04:01 AM

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Just want to share my HIFU experiences in the hope that this information will be useful to others.

 

My first HIFU experience was very good, although it turned out to be only a qualified success. As I described in one of my earlier posts in March 2012 under the heading “Excellent Experience with Sonablate HIFU for Prostate Cancer inJapan”, my first HIFU treatment for prostate cancer waswith Dr. Uchida inJapan(had the treatment onMarch 12, 2011)

 

The treatment was able to reduce myPSAfrom 6.5 in November 2010 to 1.7 and 1.93 values in May and June 2011 with essentially no side effects. There were no urinary, bowel, erection or any other issues. The bladder capacity and urinary stream had become better than they had been in years.

 

Thus, the treatment was beneficial in every way with no bad side effect, but I felt that it had fallen short of getting thePSAdown to 0.1-0.2 range, which has been associated with the best long term results. Thus, I felt that perhaps a second HIFU treatment would be desirable to bring thePSAdown to the 0.1-0.2 range to ensure good long term results.

 

Dr. Uchida was reluctant to do a second HIFU treatment unless myPSAbecame much worse with time. So, I contacted Dr. Suarez and another urologist associated with International HIFU for their opinion. They agreed that thePSAshould have been down to the 0.1-0.2 range after the first HIFU treatment and since that had not happened, a second HIFU treatment through them would do the job. Considering my very good experience with the first HIFU treatment, my decision to have a second HIFU treatment seemed to be an easy one.

 

Unfortunately, it did not turn out to be that way. To make a long story short, I had the second HIFU treatment with Dr. Suarez inCancunin September 2011 and the results have been dismal. ThePSAhas hardly budged from 1.7 – 1.93 range in May – June to 1.3 in late November, but the side effects have been terrible. Have had major urinary and erection issues. I have had to wear a catheter most of the 3 months since the HIFU treatment because of a very weak urinary stream or a complete urinary blockage. A cystoscopy shows bladder contracture causing the urinary blockage. My local urologist is going to try to fix the blockage problem by a TUIP surgical procedure next week.

 

Dr. Suarez is supposed to be a very experienced HIFU surgeon. So, I have no idea why his treatment turned out to be so bad for me. Was he tired at the HIFU treatment time or just not careful enough?

 

One thing he should have been able to predict ahead of time is that the second HIFU treatment would probably not help bring down myPSAmuch. As I learnt too late for myself from the following web site, when there is significant amount of calcified tissue in the prostate, that calcified tissue or calcification is going to prevent proper HIFU treatment in that area:

 

http://panamhifu.com/why_hifu_fails.asp#reasons

  

The prostate ultrasound test report from my local urologist had clearly mentioned about the calcifications in my prostate, but it seems that Dr. Suarez had missed reading that information. He noticed the calcifications only when he was doing the HIFU treatment.

 

In summary, the basic message is that even though HIFU is a good treatment for prostate cancer, one should know its limitations (such as inability to deal with calcifications) and make sure that those limitations don’t apply to himself or to one of their loved ones. Unfortunately, the HIFU surgeons don’t seem to be proactive in letting the patients know of the HIFU limitations ahead of time.

RE: Two Sonablate HIFU Experiences: A Good One and a Bad One

by ohnoo on Thu Dec 15, 2011 05:11 PM

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Really sorry to hear of your situation.  But, I am glad you posted this story as we all need to be aware that the second treatment could be dangerous.  There's very little tissue left to treat, so it is close to areas that the doctor didn't want to touch for some reason, in your case calcium/calcification.

I remember a doctor telling me "if a doctor ever tells you it's 'minor' surgery run like hell, there's no such thing".

I wonder if you had a MRI, Dr. Scionti won't do a second treatment without a MRI so he can see the cancer's location.  Any calcifications are seen with the HIFU machine as well as a MRI, calcifications cause the beam to reflect and that's most likely how the damage was caused.

I'm surprised they did a HIFU with calcifications present in the  first place.  I've heard of giving a TURP to take out the calcium prior to the HIFU.

Do you wonder if your high PSA after HIFU was caused because of the calcification?  I do.

 

RE: Two Sonablate HIFU Experiences: A Good One and a Bad One

by ohnoo on Thu Dec 15, 2011 11:09 PM

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It's really awful to hear that Suarez treated you with so little data.  It seems to me that he should have waited and watched the PSA for longer, as a stable PSA at those levels is not indicative of cancer.

I hope your PSA stays where it is now.  Good luck with the upcoming turp and the PSA staying stable.

RE: Two Sonablate HIFU Experiences: A Good One and a Bad One

by akt1000 on Fri Dec 16, 2011 03:50 AM

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Thank you, Ohnoo, for both of your nice notes.

The fact that Dr. Suarez did not watch the PSA for a longer period before the second HIFU treatment does not bother me in itself. If the second treatment had reduced the PSA down to 0.1 as he told me that he could do, it would have been wonderful. However, he should have paid attention to calcifications mentioned in my prostate ultrasound report ahead of time and not wait until the actual HIFU treatment to notice them. Even then, if he could not do much to reduce the PSA level to a low value, he should have been a little more careful so that I would not have ended up with major urinary and erection issues without getting much benefit.

Of course, all the HIFU promotional material does not say any thing about calcifications' impact on the success rate of the treatment either. That was one of my reasons for this posting about my experience on this site, so that people are more aware of this important factor.

Incidentally, I am actually having TUIP (and not TURP) for my bladder contracture and associated urinary problems. TUIP should be much easier on the body than TURP and will hopefully do the job.

RE: Two Sonablate HIFU Experiences: A Good One and a Bad One

by ThatBiopsyHurt on Sun Jan 08, 2012 09:49 PM

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akt1000 -

I am considering HIFU in Japan with Dr. Uchida.  So my question is why did he perform the first HIFU if there were calcifications in your prostate that would have prevented effective treatment?

RE: Two Sonablate HIFU Experiences: A Good One and a Bad One

by akt1000 on Mon Jan 09, 2012 02:13 AM

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On Jan 08, 2012 9:49 PM ThatBiopsyHurt wrote:

akt1000 -

I am considering HIFU in Japan with Dr. Uchida.  So my question is why did he perform the first HIFU if there were calcifications in your prostate that would have prevented effective treatment?

I am not completely sure about why Dr. Uchida performed the first HIFU on me in presence of calcifications in my prostate.

My guess is that although the prostate ultrasound done the day before the HIFU treatment showed some calcifications, they were judged to be less than 1 cm in length. Thus, they were considered to be too small for them to opt for TURP (which Dr. Uchida recommends to remove calcifications of more than 1 cm) prior to HIFU treatment. But in retrospect, it seems that the calcifications (or other factors) resulted in  the HIFU treatment to destroy only 80 (instead of almost 100) percent of my prostate gland tissue. At least that treatment did not cause any side effects even for a short period, for which I was every happy.

As a side note, the timing for my HIFU treatment was not good. The massive March 2011 Japan earthquake happened the day before my treatment, which resulted in Dr. Uchida having lot of problems getting to the hospital because of the road closures.

By the time of the second HIFU treatment, the calcifications were judged to be more than 1 cm in length at the start of the HIFU treatment by Dr. Suarez, but no attempt was made to remove the calcifications before HIFU.

In any case, as I mentioned before, it seems that you have to watch out for prostate calcifications yourself ahead of time and have appropriate treatment discussion with the HIFU doctor about the corresponding impact on the HIFU effectiveness and its side effects.

RE: Two Sonablate HIFU Experiences: A Good One and a Bad One

by ThatBiopsyHurt on Mon Jan 09, 2012 07:37 AM

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Thanks for the info.  I'm still waffling between HIFU and RALP so all the information I can get is valuable.

RE: Two Sonablate HIFU Experiences: A Good One and a Bad One

by akt1000 on Sat Feb 04, 2012 03:41 AM

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Thought that I should update the information with my latest results from the second HIFU treatment done by Dr. Suarez in early September 2011.

 

My PSA  from the test done couple of days back is 0.5, which is better than the value of 1.3 from the test in late November 2011, but it is still a little disappointing because the PSA  value is still much higher than the 0.1 - 0.2 range which was expected and considered desirable before the second HIFU treatment. (The value in November may have been superficially higher due to factors such as my using catheter at the time, a recent cystoscopy, and a minor urinary infection).

 

Regarding the side effects, the bladder neck contracture problem seems to have been fixed by the TUIP surgery in December 2011, but the incontinence and the erectile dysfunction problems are as bad as ever. The drugs (Vesicare for incontinence and Cialis for ED) don't help at all. Am still doing Kegel exercises in the hope that those will help reduce incontinence.

 

Getting back to my earlier message to people considering HIFU for prostate cancer, please make sure that there is no significant amount of calcified tissue in your prostate. When there is significant amount of calcified tissue or calcification, it is going to prevent proper HIFU treatment in the shadow of that area.The HIFU surgeons know about this, but don’t seem to emphasize this until after the treatment, when the results are found to be not as good as they should be.

 

Also, If done right, there should not be significant side effects due to the HIFU treatment, as was the case of my first treatment. So, in selecting the HIFU surgeon, you may want to check not only the experience of the  surgeon, but also find out the special precautions and techniques he uses to minimize the side effects.

 

 

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