All of these ablation options instead of RP or RT ?

[Fozzworth]

Hello everyone,

As I continue researching treatment options for my contained Gleason 4+3 prostate cancer, preserving maximum sexual function and continence is a top priority for me. I've come across several non-surgical and non-radiation therapies that utilize ablation techniques, including:

High-Intensity Focused Ultrasound (HIFU)

NanoKnife Irreversible Electroporation (IRE) System

Focal Laser Ablation

These ablation therapies seem to offer a balance between effective cancer control and the preservation of prostate tissue and function. This is particularly important to me because I want to maintain my quality of life as much as possible.

I've noticed that these treatments are offered by renowned physicians at top medical institutions, which gives me confidence in their credibility. However, when I discussed these options with my urologist, he recommended a radical prostatectomy (RP) as the first line of treatment. If not surgery, he suggested radiation therapy (RT). He was quite dismissive of the ablation options.

I'm reaching out to the community to seek advice and hear about personal experiences, especially considering the importance I place on preserving function and continence. Specifically:

Effectiveness of ablation treatments like HIFU, NanoKnife IRE, and focal laser ablation for contained Gleason 4+3 prostate cancer.

Long-term outcomes and side effects compared to traditional treatments like RP and RT.

How age might influence treatment decisions: Would the choice between ablation therapies and traditional treatments differ if one is 25, 50, or 75 years old?

Strategies for discussing alternative treatments with a urologist who may be skeptical of newer therapies.

Any insights, personal experiences, or resources would be greatly appreciated as I navigate this important decision.

Thank you!

[Tall_Allen]

Unfortunately, none of them work well:

prostatecancer.news/2016/12...

Even when the whole gland is treated, the cancer is left behind:

prostatecancer.news/2021/03...

All of those urologists who offer it are offering it on a clinical trial (I hope). The FDA has not approved any of them as a treatment for prostate cancer, only for the removal of prostate tissue (like a TURP). Those urologists who are making unsupported claims are duping patients, and should be sued IMO.

[fast_eddie in reply to Tall_Allen]

There you go again. Outright condemning a treatment option in black and white terms that you've had no experience with. I had full gland HIFU ablation surgery just over 8 years ago. I did have TURP surgery 10 years prior which made me a poor candidate for RP surgery but a good candidate for HIFU; TURP is almost a prerequisite for HIFU. I was steered towards radiation treatment but had read too many scary accounts of problems with that option on this forum and elsewhere. After suffering for years with BPH the radiation protocol of lifting the bladder away from the prostate by drinking at least a quart of water pre treatment was also a problem at that time. My bladder could accommodate less than half that volume so that was also a factor in my decision to go with HIFU. I also preferred one surgery to 35 radiation treatments. Post HIFU I have suffered no problems with ED or incontinence. My last PSA reading was 1.3. Yeah I know what you are going to say -- I am one lucky data point and the more than 20,000 men who have had HIFU are all stupid. You are not doing a service to the people on this site who are researching their options with your know-it-all pronunciations. You aren't a doctor.

[Tall_Allen in reply to fast_eddie]

There you go again. Denying clinical evidence.

[fast_eddie in reply to Tall_Allen]

I've got the best kind of evidence. Personal evidence. Personal testimony to a successful treatment. Had I seen your jaundiced opinion of this treatment option I likely wouldn't have chosen it. I might be dealing with radiation damage or failure instead. No medical treatment options are guaranteed but they deserve a fair evaluation, which you don't believe in, for whatever reasons.

[Tall_Allen in reply to fast_eddie]

I hope you monitor it.

[fast_eddie in reply to Tall_Allen]

Been doing so for 8 years and will continue to do so.

[Indy2012 in reply to Tall_Allen]

Edited to correct link.

I noticed that your information has not been updated since early 2023. How does this data (urologytimes.com/view/study... ) presented at the American Urological Association (AUA) 2024 annual meeting in May 2024 factor in your analysis?

[Tall_Allen in reply to Indy2012]

The link doesn't work. But if it's the French non-randomized comparison of HIFU to RP. It had only 30 months of F/U, and progression was defined by nadir+2, which is non-standard. Both had similar and very low rates of progression in that time frame, which one would expect, although HIFU had slightly less progression by that definition. Remember that doing nothing has zero side effects, and is also expected to have low rates of progression in 30 months. Why compare it to the therapy with the worst side effects?

[JimmyStart]

Hi Fozworth. I am in Australia and was diagnosed with 3 + 4 in only a very small number of biopsy samples (later confirmed via PSMA and MRI). Due to having severe chronic pelvic pain syndrome (or prostatitis) I was unable to prepare for surgery the usual way (pelvic floor exercises) and as a result was informed that the likelihood of post surgery long-term incontinence was high. I started researching other options and discovered that one of our top urologist/surgeons in Sydney was offering Nanoknife. It was all new to me and I was drawn to the logic of the treatment approach, its 5 year positive outcomes and less severe side-effects. I was told that the small amount of "detectable" cancer made me a good candidate and compared to full surgery, it was very attractive, though the surgeon stressed that it was still in its experimental phase and at that stage they had no long-term data to back its efficacy. To cut a long story short, it didn't work for me and within 2 years, I had a full recurrence - still 3 + 4 but with a greater spread. I know that for some lucky individuals, this focal treatment has been successful but I'm also aware of quite a few men who opted for this and later regretted it. For me at least, this focal treatment was expensive, provided false hope, and complicated salvage options when the cancer returned.

2 years after Nanoknife, and again unable to prepare for (salvage) surgery due to the chronic prostatitis, I opted for SBRT and am so glad I did. Almost zero side-effects compared to Nanoknife and 3 years on, I have PSA sitting under 0.3, no erectile dysfunction, or any issues with continence or bowels. It is very easy to forget that I even went through it.

[Fozzworth in reply to JimmyStart]

did you have incontinence after the ablation and did you lose sexual function at the ablation? It actually is encouraging that you can have radiation after a failed ablation!

[JimmyStart in reply to Fozzworth]

After the ablation, the major and permanent side effect I experienced was and is retrograde ejaculation (dry orgasm). Came as a shock as the surgeon didn't mention this when he listed possible side effects. I had no erectile issues but the experience of orgasm was very different. Almost no sensation at all for many months. It slowly improved but even now it can be a bit hit and miss. I had no issues at all with incontinence, just urgency, blood in the urine for about a month.

[addicted2cycling]

youtube.com/watch?v=kIWAv9o...(Not working as expected?)

Personal note: IMO, you should not proceed with any FOCAL therapy without having a Saturation Transperineal 3Dimension Prostate MAPPING Biopsy. This biopsy locates the actual margins of the legions or tumors making sure they are adequately treated.

A 3D-PMB finds the PCa that a TRUS biopsy misses. I've had 3 mapping biopsies along with IRE for GL6 and GL7 and a Right Half Hemi Cryoablation for GL10.

IMO, your physician of choice should be World Renown with at least 10+ years in procedure experience and 25+ years having PCa treatment experience.

Good luck

[fast_eddie in reply to addicted2cycling]

I agree that any treatment should be full gland. FOCAL ablation is half-assed in my crude opinion.

[Mgtd]

Boy that is some tough experience criteria for a doctor. Wonder how many in the WORLD could meet that and if you could what would the cost be to get to him/her?

Since you had done that level of research do you have a list and country where they are located?

Thanks

[Peteshepherd]

I have had focal. Lase ablation (Fla). And Tulsa. New lesson arose 4 years after Fla. both procedures were relatively non eventful. Catheter for week or so then healing takes about a month. Minimal side effects while healing but all back to pre Fla abilities.

On this and other sites you will get a litany of various opinions some based in facts others in opinion. Ablation is not for everyone and many are not candidates.

I recommend you go to a center of excellence or teaching hospital that offers everything from focal to whole gland. They have positive ideas about each and can direct you based on your desires.

The cost of Fla and Tulsa are out of pocket so that can be a problem. Hearing Tulsa may be getting covered by some in 2025.

[Rikxplace]

hi…I had NanoKnife in March. Was PSA 6.54 (3+5) but all tumors on one side allowed me to be a candidate. Did 7 months of research. Take your time. In addition to this forum, virtual support groups like the one Malecare offers can provide a little more in depth info on the side effects of the most common procedures…details you don’t get from doctors…details from actual personal experience. Potential side effects lead me to the decision I made…continence, sexual function, quality of life. RT Followed up with ADT was not an acceptable option for me. I was leaning toward RP because I was told I did not qualify for Focal treatments with 3+5. I’m in Chicago so some great options for treatment. Get multiple opinions. You learn from each one as you develop a continuing list of questions.

There are no long term results for these newer procedures. That’s the problem and why most doctors don’t recommend or even know much about them. In my opinion, Doctors want to attempt to cure and they will use the methods they are most familiar with…the ones they have the most experience with…and have documented long term results…RP and RT. I have been told that even these methods have a 15%+ chance for recurrence. The fact that there are no guarantees and followup options can be limited with some procedures like RT, my decision was to take a chance on something new with similar short term results. Without long term results there might certainly be more risk. No one knows yet. However, I felt that the technology is progressing quickly and if I could land into the Active Surveillance pool (mantaining QOL) after NanoKnife that would be a good result. For me Active surveillance is a good result and if I have to deal with a reoccurrence later on I will. QOL was the most important. NanoKnife, as described, not proven…claims to be one of the less destructive options which leaves a repeat and all other options left on the table. We’ll see.

Age is a factor in the decision making. I’m a very healthy 78. Absolutely …the only side affect is dry orgasm. It may resolve with time. Erections are good. No continence issues. No other physical issues.

It is needed and would be great if there was one place ..an Urology department…that could knowledgeably inform us about all of the options and which might be suitable. Let us know if you find this.

I got 5 opinions (not just a 2nd opinion). The first 4 …RP or RT. It was only on the 5th while discussing surgery that NanoKife came up. He was part of the Preserve study.

My suggestion: if you want to know more about NanoKnife google the Preserve study. Initial one year safety phase is completed. It was done in about 20 sites around the country. Sites are listed. Some of the best institutes in the country. Find the one nearest you and make an appointment. Ask if they also do any of the other focal (HIFU etc) treatments. Their institute is more likely familiar with newer treatments. Ask them about their results and your qualifications.

Any other questions? I’m happy to try to help…Richard

[Rikxplace]

Forgot to mention…your introduction…status…research so far…and goals are very clearly stated. I have no doubt that you will discover what is right for you. You have a terrific head start on the process.

I think there may not be many helpful strategies in speaking with Urology teams that only offer RP or RT. They just aren’t familiar. Best to find out if the institute in question does any of these procedures first.

Re: contacting any of the NanoKnife study sites. You could try for virtual appointments. Sometimes Urologists won’t do that on the first appointment. I didn’t think to try this at the time, but you might be able to contact one of the Study administrators by phone (their names are listed) for guidance. If you can find out if the same institutes do HIFU etc also that would be really useful. You might check some European forums since some of these procedures have a longer history in Europe.

Lastly, NanoKnife, while approved for use, is still not covered by insurance. Worth asking all sites if that is still true everywhere. About $18-20k. Full anesthesia but done as outpatient. Procedure less than an hour.