Post-HIFU cancer: Last year, a biopsy... - Prostate Cancer N...

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Post-HIFU cancer

Smallfall
Smallfall

Last year, a biopsy showed I had a Gleason sum of 3+4 in 6 of 9 samples on the left side of the prostate, the right side was clear. I decided to have HIFU in No. California. A 3T MRI supported that there was PIRADS 5 on the left side only. I had the HIFU done in July, 2018. The HIFU report states that any "green" lesions were treated and re-treated. My 3 month and 6 month PSAs were 2.7, but my 9 month PSA jumped to 4.4. In june of this year I had a free and total PSA of 5.7 and .59 for a % of 10.4 for a better than 50 % chance of cancer. I had a complete bone scan, and a abdomen and pelvis CT, which were both clear. Another MRI was "equivocal" for cancer on the left side and clear on the right side. A comparison of the pre and post HIFU MRIs wasn't able to provide additional information but reported that the current MRI is PIRADS 3. I consulted the HIFU operator and was given minimal info, referring me to the radiologists. The urologist referred me for another PSA and said if it goes up we should schedule a biopsy; there are no symptoms of prostatitis. I received the PSA results yesterday and it dropped to 5.4 from 5.7. I'm asking if this group thinks it is prudent to wait a bit and see if the PSA drops before scheduling another biopsy. Additinally, I'm looking for thoughts on whether the original HIFU operatror, a urologist, has any responsibility to provide another HIFU treatment without cost if there is still cancer in the area he ablated. Thank you, John

28 Replies
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LOL@ "without cost." Not only do they charge for the first treatment, they charge for every subsequent treatment. And there often are subsequent treatments. HIFU is a cash cow for providers.

I agree with the biopsy. However, both MRI and biopsies on ablated tissue are hard for the radiologist and pathologist, respectively, to read accurately. Be sure to get a second opinion from Epstein and let him know it was on HIFU-ablated tissue.

If there is remaining cancer, consider salvage radiation instead of a redo. The cancerous tissue may be protected, and there is no assurance that a single re-do will get it all. There is little data to base a decision on. HIFU is experimental and not FDA approved for prostate cancer for good reason. FWIW, here are the things your doctor probably did not discuss with you:

pcnrv.blogspot.com/2016/12/...

I suggest you call Don Fuller in San Diego. He has been treating RT failures with whole gland reduced-dose SBRT, and he may agree to take you on. Worth a call.

Smallfall
Smallfall in reply to Tall_Allen

Thank you, I definitely wouldn't pay for HIFU again. I'm sorry, I don't know who Epstein is, I'm north of Sacramento. I am considering Loma Linda Proton Beam, but I will, certainly, find out more about SBRT and Don Fuller.

Tall_Allen
Tall_Allen in reply to Smallfall

I haven't heard about protons used as salvage, and Loma Linda's proton is the last place I'd use. Epstein wrote the book on prostate biopsy analysis. Here's how to send the biopsy cores to him. He charges $275:

pathology.jhu.edu/departmen...

Smallfall
Smallfall in reply to Tall_Allen

Thanks again for all of the information. I spend 8 months a year in Mazatlan, Mx, and I'm very happy with their healthcare overall, but advanced PC treatment is lacking; which is why I'm less informed than I should be about what is available here. After looking at the SBRT info, and Don Fuller, specifically, I'm very interested. I appreciate the links you've given me and the info about Drs. Fuller and Epstein. I'll definitely take advantage of this info. John

WSOPeddie
WSOPeddie in reply to Tall_Allen

That's some serious shade you are throwing at HIFU. I've seen plenty of horror stories to go with radiation treatments and we all know the quality of life risks of a radical prostatectomy.

Tall_Allen
Tall_Allen in reply to WSOPeddie

I guess one man's "serious shade" is another man's "balanced perspective." Sadly, in the US, many focal ablation specialists come across like used car salesmen. It's important to understand why HIFU was never FDA-approved for PC, and why they stopped it in Canada. I believe that patients deserve to understand the full range of risks for all treatments. That is as true of radical surgery and radiation as it is of ablation. There are even (very small) risks with Active Surveillance.

WSOPeddie
WSOPeddie in reply to Tall_Allen

Does this sound like HIFU is not approved for prostate cancer?

Or are you still splitting hairs over approval-for-ablation not being approval-for-prostate-cancer?

Tall_Allen
Tall_Allen in reply to WSOPeddie

It's hardly "splitting hairs," it's an entirely different thing. After the FDA turned down approval of Ablatherm's HIFU for prostate cancer in July 30, 2014:

"A US Food and Drug Administration (FDA) advisory panel voted yesterday not to recommend approval of a high-focus ultrasound technology to treat low-risk prostate cancer with less erectile dysfunction...members of the Gastroenterology and Urology Panel of the FDA's Medical Devices Advisory Committee voiced a range of concerns about lack of data available from the technology sponsor's research results that were presented as part of its US premarket approval (PMA) application...In the end, a majority of panel members voted no to the question regarding a reasonable assurance that the treatment is safe. Panel members voted unanimously against reasonable assurance that it is effective."

medscape.com/viewarticle/82...

In October 2014, the other major manufacturer, SonaCare's Sonablate HIFU was also turned down: "the same panel voted against approval of the Sonablate 450, for the treatment of patients with recurrent prostate cancer. "

Sonablate lawyered up. They reasoned that if they did not have the data to support approval of HIFU for prostate cancer, they could at least get approval of HIFU for the ablation of prostate tissue, in other words, an expensive TURP. They reasoned that it would at least be legal to use their machines in the US. They were right. A year later, by skating through that loophole, they were able to get FDA approval to allow their machines to operate legally in the US.

The approval that was granted is "for prostate tissue ablation, which means it can be used to treat prostate cancer, although the approval is not specifically for that," he explained."

medscape.com/viewarticle/85...

This is why Medicare (that article you posted is incorrect) and insurance will not cover it as a treatment for prostate cancer. Medicare will only cover the facility portion of the bill. Sadly, unscrupulous doctors dupe cancer patients into shelling out over $20,000 per treatment plus the extra treatments that are often necessary.

I believe that such technologies should be proven in clinical trials, and some doctors, to their credit, are doing so. Others are not so scrupulous.

WSOPeddie
WSOPeddie in reply to Tall_Allen

How about citing the more recent FDA judgement regarding HIFU, in 2015:

prostatecancer911.com/fda-a...

Tall_Allen
Tall_Allen in reply to WSOPeddie

I guess you didn't read what I wrote. I'll repeat it here:

Sonablate lawyered up. They reasoned that if they did not have the data to support approval of HIFU for prostate cancer, they could at least get approval of HIFU for the ablation of prostate tissue, in other words, an expensive TURP. They reasoned that it would at least be legal to use their machines in the US. They were right. A year later, by skating through that loophole, they were able to get FDA approval to allow their machines to operate legally in the US.

The approval that was granted is "for prostate tissue ablation, which means it can be used to treat prostate cancer, although the approval is not specifically for that," he explained."

It pains me that so many men have been duped by the manufacturers and unscrupulous doctors.

WSOPeddie
WSOPeddie in reply to Tall_Allen

Ablation vs treatment. A distinction without a difference. What magical data would satisfy the FDA anyway? How was the barbaric cryotherapy / ablation ever approved? Is that why the FDA is scared of HIFU or is it more related to politics -- urologists don't want a new therapy that renders their training and experience less relevant or valuable.

Tall_Allen
Tall_Allen in reply to WSOPeddie

Ablation of tissue is entirely different from treatment of cancer. Surgery removes both tissue and cancer. Radiation treats cancer but is sparing of tissue. Whole gland ablation of tissue has been found to spare cancer (which can be impervious), and to cause worse side effects than either.

Jeff85705
Jeff85705 in reply to WSOPeddie

HIFU for prostate ca is considered experimental and not approved, so no "shade" thrown.

WSOPeddie
WSOPeddie in reply to Jeff85705

20,000 patients treated in Europe, Asia, the US might disagree. No more experimental than cryosurgery or external beam radiation. A lot more focused and precise. FDA likes to wait on 10 years worth of results before they will issue their blessing. My HIFU surgeon gave a negative opinion on focal ablation and did full gland. Apples and oranges when discussing HIFU that wasn't full gland?

Jeff85705
Jeff85705 in reply to WSOPeddie

Sometimes FDA delays are beneficial, thus no thalidomide babies in the US.

WSOPeddie
WSOPeddie in reply to Jeff85705

Just to be a bit snarky, the FDA just approved thalidomide for treating some conditions:

mayoclinic.org/diseases-con...

Jeff85705
Jeff85705 in reply to WSOPeddie

I'm sure not for pregnant or would-be pregnant women! Just to be snarky.

Tall_Allen
Tall_Allen in reply to WSOPeddie

What about the problem of cancer recurring in the ablation zone, and the increased risk of urinary, rectile and sexual dysfunction with whole gland ablation?

Try_One
Try_One in reply to Tall_Allen

Thanks for the discussion and links concerning HIFU. I am on AS for almost 3 years and attended a PCa Patients Conference at UCSF where the doctors talked about HIFU like used car salesmen. Or, more like new car salesmen.

This discussion has brought much needed information.

Tall_Allen
Tall_Allen in reply to Try_One

Your mentioning AS brings up another much-needed discussion about this - which candidates are appropriate? I was once on a podcast with Mark Emberton, one of the lead investigators of this sort of thing in the UK. He believes that focal ablation should only be offerred to men who are not good candidates for AS. Others do not agree. This article discusses the issue:

pcnrv.blogspot.com/2017/01/...

Hey Smallfall, am interested to know what side effects you experienced from HIFU. I have a similar diagnosis to you (3+4, all on one side) and it is something I'm considering. I'm under the care of a hospital in London where it has been a treatment option for around 20 years.

Smallfall
Smallfall in reply to Outsiders

Very few side effects; spontaneous nocturnal erections the second night after HIFU, catheter out in 7 days, some passing of blood for several days, no incontinence. It was great until PSA started going up.

TFBUNDY
TFBUNDY in reply to Outsiders

Hi. Did you go with HIFU? Had mine in UK a little over a year ago. PSA 1.2 after partial focal ablation. Apart from urine retention and slow flow, happy with the outcome. So far... Waiting for biopsy and cystoscopy as 12 month review. Cheers

Outsiders
Outsiders in reply to TFBUNDY

No, I'm still on active surveillance - anticipate that I will need treatment sooner or later. Am due an MRI in 3-4 months and perhaps another biopsy depending on the outcome of that. When decision time comes I will likely weigh up brachy vs HIFU. Avoiding surgery if at all possible.

Hey Smallfall,

There was a time when urologists that ablated prostate cancers with HIFU would do a redo if necessary within a certain time of maybe 5 years for half price.

Any biopsy other than one which is an in bore mp 3.0T MRI, real time should be avoided. This is the most accurate and up to date prostate biopsy. The number of cores taken are very much reduced.

You need to get as good a biopsy as possible to be able to make that important decision as to what is next for you.

Don't forget that it is better to take some time to research and evaluate options before making that decision.

Currumpaw

Did you have 'focal' (left side only) ablation? I had full gland HIFU ablation 3 years ago. If focal good chance some cancerous or precancerous cells missed. My PSA has crept up to 0.5. Maybe some yet undetected lymph node involvement? PSA not high enough to get an axumin scan.

Smallfall
Smallfall in reply to WSOPeddie

Yes, I only had the left side ablated; all of the recent scans show no cancer on the right side, only the ablated left side is "equivocal" for cancer.

WSOPeddie
WSOPeddie in reply to Smallfall

Well there you go. You got the kindler, gentler HIFU which apparently was not sufficient.

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