Inquiring about HIFU and/or Beth Isra... - Prostate Cancer N...

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Inquiring about HIFU and/or Beth Israel in Boston

allshallbewell profile image
20 Replies

I am wondering if there might be members of the group who have undergone HIFU (High Intensity Focused Ultrasound) who might be able to share from their experience.

I am also wondering if anyone has experience with the multi-disciplinary Urology/Oncology team at Beth Israel Medical Center in Boston.

Thank you.

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allshallbewell profile image
allshallbewell
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20 Replies
Tall_Allen profile image
Tall_Allen

I have heard the experience of several. Please read this first:

prostatecancer.news/2021/03...

allshallbewell profile image
allshallbewell in reply toTall_Allen

Thank you. The reference to “whole gland” does not seem to apply to me as the procedure that has been proposed would just target one small area. Thank you for sharing this.

Tall_Allen profile image
Tall_Allen in reply toallshallbewell

But you can see that if whole gland fails so miserably, what hope is there for focal ablation?

Also, many unanswered questions:

prostatecancer.news/2016/12...

(see the section on focal HIFU)

In the US, the FDA never approved HIFU as a treatment for prostate cancer. They only approved it to remove prostate tissue (like a TURP).

allshallbewell profile image
allshallbewell in reply toTall_Allen

How has it done when the target is a small area? Perhaps it is better suited for that.

Tall_Allen profile image
Tall_Allen in reply toallshallbewell

What is your goal? If it is to cure you of prostate cancer, it probably will not do that, as you can see. But why else get the treatment?

Tall_Allen profile image
Tall_Allen

Are you asking me? (Probably not, since I haven't labeled you as having a problem. I only labeled HIFU as having unresolved issues.) I think you have to decide what your goal is in pursuing such treatment, and whether HIFU accomplishes your goal.

allshallbewell profile image
allshallbewell in reply toTall_Allen

No, I appreciate you. That was directed toward someone else who has deleted their comment or had it removed.

I am looking to minimize the chance of dying from this in the next 10-15 years. I also prefer less invasive procedures at this point though am open to revisiting this at some point. I definitely get why some choose radiation or prostate removal. I just don’t prefer to start there. Thank you.

Tall_Allen profile image
Tall_Allen in reply toallshallbewell

Your profile says you are 65 years old and in good health- you can do nothing and have an excellent chance of surviving 15 years. This nomogram allows you to calculate the odds of that:

webcore.mskcc.org/survey/su...

Most patients I've met with localized PCa want something more than surviving 15 years. They want a cure so that they don't have to worry about painful metastases and an agonizing death in their future. They also want to minimize the side effects of treatment in pursuit of a cure. You did not include any risk data (biopsy results, PSA, stage) in your profile.

allshallbewell profile image
allshallbewell in reply toTall_Allen

Thanks. Last two PSA tests: 4.2 followed by 3.6. One spot assessed Gleason 7 (3 plus 4). Very good health otherwise. Thanks!

Tall_Allen profile image
Tall_Allen in reply toallshallbewell

How much pattern 4? If you don't know, or even if you have one opinion, you may want to get a second opinion from Jonathan Epstein at Johns Hopkins:

pathology.jhu.edu/patient-c...

The reason I ask, is that if your pattern 4 is minimal, active surveillance may still be a good option for you.

allshallbewell profile image
allshallbewell in reply toTall_Allen

Thanks. Not sure. Also waiting on genetic testing. There is family history.

Currumpaw profile image
Currumpaw

It is important to find a doctor that is experienced and doesn't say something such as. "I'll ablate the high grade Gleason and we will monitor the lesser grades with active surveillance. That is possible, but how many more biopsy cores were cancerous? Maybe okay if it is one or even two cores--if one is comfortable that choice. Sort of like playing Russian roulette with more than one chamber loaded?

Many of the failures may have resulted from the TRUS biopsies. Today the real time, trans perineal biopsies using a mp 3.0T MRI are far superior to what was used in the past and the TRUS is, unfortunately, still the choice of some docs today. The mp 3.0T MRI has such better imaging and the trans perineal can access areas of the prostate that the TRUS can't.

You should also consider FLA, "Focused Laser Ablation". I message with someone that has conferred with Dr. Karamanian in Texas. I have read what his patients have posted about him--all positive.

Dr. Busch of Atlanta is known for being a whiz at imaging and has offered HIFU as a treatment for several years now.

These two doctors will not accept you as a candidate for ablation if they feel it isn't in your best interest.

Dr, Befar Ehdaie who is very much respected by someone on this site has recently become enthusiastic about ablation and especially HIFU for a man with prostate cancer --if that man is the right candidate for the HIFU!

A link to an article where Dr. Ehdaie speaks of his enthusiasm for HIFU ablation is below. Copy everything between the lines. Memorial Sloan Kettering wouldn't associate itself with a bogus treatment method.

_________________________________________________________________________________________

High-Intensity Focused Ultrasound (HIFU) Can …

mskcc.org/news/high-intensi......

__________________________________________________________________________________________

Currumpaw

allshallbewell profile image
allshallbewell in reply toCurrumpaw

Thank you. I appreciate your perspective.

Piano777 profile image
Piano777

If you are looking at focal ablation you need to consider NanoKnife IRE focal ablation. It uses high voltage electrical pulses to put nano holes in prostate cells in a very highly defined area. Cells die a natural death and are cleared away by the bodies normal processes.

HiFU and cryotherapy's main drawback are damage to surrounding tissues. I liken it to trying to boil/freeze the center of pot of water (prostate tissue) while leaving the surrounding water (nerves/bladder/rectum) at room temperature. IRE can do this.

The technology has been around for 10+ years and the placement of the needles is very similar to doing a biopsy so surgeons don't have a difficult time learning to use it.

I had it done 9 months ago and it is an out-patient process with very rare side effects. I've had none.

There is a clinical trial going on now clinicaltrials.gov/ct2/show... to get approval to add prostate cancer to it's treatment capabilities.

This is an excellent article that summarizes info on NanoKnife IRE. ncbi.nlm.nih.gov/pmc/articl...

Feel free to ask me more about it.

John

allshallbewell profile image
allshallbewell in reply toPiano777

Thank you, John.

Piano777 profile image
Piano777

If you are looking at focal ablation you need to consider NanoKnife IRE focal ablation. It uses high voltage electrical pulses to put nano holes in prostate cells in a very highly defined area. Cells die a natural death and are cleared away by the bodies normal processes.

HiFU and cryotherapy's main drawback are damage to surrounding tissues. I liken it to trying to boil/freeze the center of pot of water (prostate tissue) while leaving the surrounding water (nerves/bladder/rectum) at room temperature. IRE can do this.

The technology has been around for 10+ years and the placement of the needles is very similar to doing a biopsy so surgeons don't have a difficult time learning to use it.

I had it done 9 months ago and it is an out-patient process with very rare side effects. I've had none.

There is a clinical trial going on now clinicaltrials.gov/ct2/show... to get approval to add prostate cancer to it's treatment capabilities.

This is an excellent article that summarizes info on NanoKnife IRE. ncbi.nlm.nih.gov/pmc/articl...

Feel free to ask me more about it.

John

Bigmls7890 profile image
Bigmls7890

Get a consult Dr Eric Walser ,UTMB, Houston, TX.

JJD25 profile image
JJD25

Hello,

I had HIFU done in 2020, at age 65, by Dr. Samuel Peretsman in Charlotte, NC, where I live. He is very experienced with focal HIFU, having done them for more than 15 years. He did them off-shore before they were legal in the USA. He retired this year. However, he also was very experienced with DaVinci prostatectomy. He did not pressure me in either direction...I came to him to ask if I could be a candidate for HIFU. He told me that 10 years ago I would not have been a candidate. In his practice, cancer recurrence with HIFU was the same as for prostatectomy or radiation....about 20%.

My prostate was 52 cc, and I had PSA 34 with a MRI identified single tumor on one side of the apex, with 2 cores in the MRI area of interest at Gleason 7 (3+4) as re-evaluated by Epstein at Johns Hopkins on second opinion. No cribriform.

I had a TURP first to remove calcifications which can interfere with ultrasound, and to reduce the size of my prostate. This was done 3 months before the HIFU.

After HIFU, my PSA was 0.01. Currently it is 0.2 and has been stable for a year. Before he retired, he said PSA usually increases from nadir, then levels off.

A significant downside of HIFU is the possibility of urethral stricture... (see the link below). I have it, and will be talking with a reconstructive urologist to see if I may be a candidate for urethroplasty down the road. I have had 5 dilations, including one done in the hospital to enlarge the stricture to 32mm (very large vs office dilations). After the large dilation, peeing has not been difficult. I can pee about 4 inches away from my body...not great, but not terrible. I don't need to force it out. My last dilation 6 months ago probably wasn't needed, as I could still pass a 14 French dilator, but my doc wanted to check how I was doing. Ongoing, if I am not able to have a urethroplasty, I may need dilation more than once per year. I knew there was a risk of stricture, but did not know how it might affect me, or how large the risk was. If I did, I may have chosen prostatectomy over HIFU, but it's hard to say. There is a risk of stricture with both radiation and prostatectomy, but it seems to be much less than with HIFU. I was in the same place as you, not wanting anything as radical as prostatectomy, as I thought the risk of incontinence was too high. I wasn't worried about ED. I am not incontinent and do not have ED.

After the HIFU treatment, and removal of the catheter, I was incontinent for about a month. I was told this was normal and I could expect to be continent again. I am. I never had a UTI until I had the TURP. I also never had epididimytis until the TURP. But I also never had a catheter before. Both can occur with any treatment.

With radiation therapy, PSA does not go to zero or maybe not even near it, so it seemed that I would always be uncertain if it worked. I know it worked for Tall_Allen. But there is a chance for recurrence with both prostatectomy and radiation, and the side effects can be greater than with HIFU. HIFU can also be a salvage technique for failed radiation therapy.

The risk of stricture likely depends on the size of the tumor and its location. My tumor was in the narrow area of the apex, very close to the urethra, but again even so, the stricture isn't interfering with my life right now.

Stricture link:

sciencedirect.com/science/a...

Here is a note to Tall_Allen: If you look up the clinical data submissions for approval for HIFU by the FDA, you will see that they were done to treat prostate cancer. UCLA submitted data using HIFU to treat prostate cancer that recurred after failed radiation therapy. Saying the FDA only approved HIFU to ablate prostate tissue is semantics.

The Mayo Clinic in Florida is also now doing TULSA for prostate cancer.

uclahealth.org/medical-serv...

my.clevelandclinic.org/heal...

mayoclinic.org/medical-prof...

allshallbewell profile image
allshallbewell in reply toJJD25

Thanks very much for taking time to share this from your experience.

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