HIFU a real alternative to surgery or radiation?

[marinoperna]

is anyone familiar with the Scionti prostate center in Sarasota Florida.

Comments solicited please!

[Hidden]

Why sudden surge of requests for HIFU treatments on a site for advance prostate cancer?

Seems particularly inappropriate IMHO

[AlanMeyer Moderator in reply to Hidden]

To expand a bit on XPO1's comment, unless things have changed since I last looked at it, HIFU is only used for localized, not advanced (i.e. metastatic) prostate cancer.

Alan

[marinoperna in reply to AlanMeyer]

Confined to the prostate per MRI

latest biopsy is 15% 4+4 and 10% 3+4. Waiting for confirmation from Dr. Epstein.

Had hopped to bide some time for new procedures is all. don't like surgery nor radiation but have to do something soon so i'm told

[AlanMeyer Moderator in reply to marinoperna]

One of the difficulties in getting information on prostate cancer treatments is that the documents explaining the treatment, the results, and the side effects are written by people who make their livings selling those treatments. The great majority of articles published about prostate surgery are written by surgeons. Ditto for radiation, which is further divided into doctors offering proton beam vs. brachytherapy, vs external beam therapy, and various branches within those alternatives. And of course this is also the case for articles on HIFU, cryotherapy, and other less common treatments.

To some extent this is unavoidable. Do you want a surgeon explaining all the ins and outs of radiation? Do you want any doctor explaining HIFU who has not, him or herself, performed a HIFU procedure? But when reading what they write you have to take into account that 1) the doctors' livelihoods are based on the treatment and 2) most of the doctors are true believers in what they're selling. Both of those can, potentially, bias their writing and advertising.

I seem to recall seeing an article that said the results of HIFU treatment fell short of those for surgery and radiation but, if a second HIFU treatment was performed, the results came up to about the same level as surgery or radiation. However, after about 10 minutes of searching for that, or other clinical trial info, I gave up.

Personally, I think that the outcomes and side effects of treatment are strongly influenced by the skill and commitment to patients of the doctor. Highly skilled and committed doctors produce better results and, if things go wrong, more help for the patient. If you do decide on HIFU (or any other treatment) look carefully at the doctor who is proposing it. Does he listen to your questions and answer them? Does he answer questions about success rates and side effects or gloss over them saying that you don't have to worry about them? Does he make ridiculous claims like, "Only 5% of my patients have sexual side effects", or "98% of my patients are cured with one treatment."?

Cancer is a complicated disease and the treatments are also complicated. There are almost always significant side effects from all the treatments, though some men do experience much worse side effects than others. Whatever treatment you choose, be prepared to deal with at least some unwelcome side effects.

I'm not an expert but I do believe that a Gleason 4+4 cancer requires treatment. I advise you to pick the best doctor, the one you find most trustworthy, and listen to his advice.

Best of luck.

Alan

[Sisira in reply to AlanMeyer]

Golden advice Alan !

[Londear1992 in reply to marinoperna]

Alan Meyer has given you great advice. Like you, my husband had two small tumors (both TC1’s) with one graded 4+3 and one graded at 4+4. We searched and searched for an experienced HIFU doctor and ended up going to Germany to one of the pioneers of this technique (he has performed this treatment for more than 25 years and the procedure was only around $7,000.) That was two years ago. So far so good, but if his PSA starts to rise and shows a need for more treatment, my husband would not hesitate to go back for additional treatment. Good luck with your choice decision, it is not easy!

[marinoperna in reply to Londear1992]

Thank you for your reply. I'd like to learn more. As Allen has said, where do you find creditable information!

How did you decide on HIFU being right for you? Why one as far as Germany?

Willing to travel again if needed ,is a good sign that the side effects must have been tolerable?

How long did you have to stay in Germany?

Ever look into the Scionti center?

I'm so nervous hearing all of the bad side of surgery (the sometimes very long term catheter & incontinence along with the healing issues) and radiation (affects to long term DNA changes with possible reforming of other cancers, the toxicity and effects of ADT then the difficulty of other treatments) for someone wanting to stay healthy beyond 10-15 years!

[Londear1992 in reply to marinoperna]

Hi, I think you will find the answers to your questions if you look at our profile page. There are two or three really detailed posts about how we found Dr Thuroff, what was involved and much more. If you click on our profile picture it should take you right to our page. We even made a four minute video about the experience. Let us know if you have any other questions. Yes, we had heard of Dr Scionti and had read good things, but we had some airmiles and price was a big factor for us but experience was the biggest factor. Much good luck with your search. It is not easy!

[viperg in reply to marinoperna]

There are other HIFU centers now . They do it here in Rochester,NY . I will be having this done shortly and supposedly it is a covered treatment now as of 1/1/21 but verify with provider . rochesterregional.org/servi...

[SCSpouse in reply to Hidden]

Umm I'm new here but this is the Prostate Cancer Network page NOT the Advanced Prostate Cancer page isn't it? So this is the page for those newly diagnosed and seeking advice about options isn't it?

[Tall_Allen]

I'm familiar with him. I even interviewed him for a podcast.

[marinoperna in reply to Tall_Allen]

Worth pursuing at all Tall_Allen?

[Tall_Allen in reply to marinoperna]

Since you ignored my response before, why do you keep asking?

[marinoperna in reply to Tall_Allen]

Allen,

Haven't ignored any of your replies. i asked if it was worth pursuing Scionti (you generally have an idea on who is good in their field) prior to your latest reply.

I am always grateful to hear from anyone with experience.

This decision has become one hell of one to made and i'm told to make one soon

[Tall_Allen in reply to marinoperna]

My opinion about HIFU hasn't changed from previous posts, Scionti or not.

[davidgmorse]

Dr Scionti is very highly regarded. He has been largely responsible for HIFU being accepted here in the US. He also is a very analytical and professional doctor who will tell you everything about HIFU and more importantly will assess your individual symptoms and whether HIFU is the best answer for your needs. He did that very thing with me - I was ready to embrace HIFU. He gave me very good advice due to my symptoms and I ended up doing radiation. I highly recommend seeing him.

[JJD25]

Hello,

I am 65 and was diagnosed with prostate cancer in Jan 2020. I had HIFU done Aug 2020 in Charlotte, NC by Dr. Samuel Peretsman. He is very experienced with DaVinci, and continues to do DaVinci , so he knows who is a good candidate for HIFU. He has done HIFU for more than 10 years. He does not do TULSA-PRO. Dr. Scionti is experienced with all methods used for prostate cancer, including DaVinci and radiation, and does HIFU and TULSA-PRO. Dr. Scionti and Dr. Peretsman know each other well and respect each others experience and abilities.

As HIFU and TULSA-PRO are Dr. Scionti's focus, he makes the time to talk with prospective patients on the phone. He won't take you as a patient for these procedures if he doesn't think you are a good candidate. I spoke him by phone at length.

Before my procedure, my PSA was 34. I just had my 6 month follow-up after HIFU, PSA = 0.03.

I had a MRI guided transperineal biopsy (I discovered the issues with transrectal biopsy so chose transperineal). A Johns Hopkins second opinion of the biopsy slides said it was Gleason 3+4 (not 4+3 as read by the local pathologist), 30% 4, no cribriform morphology, in the 2 cores in the area of interest, with 4 other survey cores showing nothing. Cancer was 13mm x 13m, in the Apex, The Charlotte local pathologist said it was Gleason 4+3 with no other details, so I had the second opinion of the slides done before deciding on any procedure. My prostate was 51cc, and had calcium deposits near my urethra that could block ultrasound somewhat. I chose to have a TURP done 2 months ahead of the HIFU to remove the deposits and reduce the volume of my prostate to make HIFU or TULSA-PRO a viable choice. No cancer was found in the biopsy of TURP samples.

I had planned to have Dr. Scionti do TULSA-PRO, but Covid got in the way. I live in Charlotte, NC and discovered on my own that Dr. Peretsman in Charlotte could do it, since I would not be traveling to Florida or anywhere else if at all possible.

My advice is to explore all options and pick the one you are most comfortable with. Also, get a second opinion regardless of which urologist you see. The first urologist I saw referred me directly to a radiologist before I even knew DaVinci, HIFU, or any other procedure existed.

Both Dr. Peretsman and Dr. Scionti have seen the results of HIFU vs other methods over time. All of the studies I have seen, and discussions with both Dr. Peretsman and Dr. Scionti, show these methods are about as effective as any other procedure if you are a candidate, but offer the chance for fewer negative side effects.

Here's a recent article with a little more about the practical expectations of HIFU from Dr. Peretsman.

urologytimes.com/view/hifu-...

Here's a couple of discussions comparing different methods.

urologyweb.com/topics/prost...

youtube.com/watch?v=WXyl2iI...(Not working as expected?)

Best wishes with whatever method you select.

PS - I did not consider Dr. Busch near Atlanta for TULSA-PRO. He is very experienced at reading a MRI, but has no experience with HIFU and little experience with TULSA-PRO.

[marinoperna]

Thank you for taking the time to explain. not that far from the Scionti center so will call them and see what they have to say

Really Appreciate your time. Thank You

[viperg]

Will be following this. Scheduled to have HIFU done on 3/25 . 7 gleason score with 1 out of 12 positive cores on biopsy . PSA 7.3 . This just seemed to be a less harsh treatment instead of cutting the whole thing out and all the side effects that go with that . As of 1/1/21 supposedly it is covered by health plans as the FDA released CPT codes as covered valid treatment option .