Focal Therapy

[CrackerOcala]

Can some of you in the community share about your focal therapy experience? Type? When? Where? Cost? Success? Complications? Or whatever you think someone thinking of this option should know.

[Tall_Allen]

Here's the experience of hundreds of men:

prostatecancer.news/2016/12...

[dentaltwin in reply to Tall_Allen]

This cannot be repeated enough!

[Tall_Allen in reply to dentaltwin]

I'm surprised that with all the failures and overselling there hasn't been a spate of lawsuits. Maybe there has and they are settled out of court.

[Chasbearcat999 in reply to Tall_Allen]

Being that insurance deems them experimental, I wonder if docs have people sign waivers.

[Tall_Allen in reply to Chasbearcat999]

"informed consent" is required by international law. I know patients are not being fully informed.

[dentaltwin in reply to Tall_Allen]

I was surprised to learn that Befar Edhaie is a strong advocate for focal therapy. I don't dismiss that it may find SOME utility in specific cases, but given the statistics, IDK. To me the concept (with the poor cure rates that it has) plays on the fears of patients already stressed more than enough.

(I get the sense that Edhaie is generally highly thought of around here, and he did my brother's RP a couple of months back. He's doing well. Meanwhile, I'm home recovering from a robotic mitral valve repair Cracker-jack team at Columbia Presbyterian. I have no idea if their robot is Da Vinci, but I should ask. Off all pain meds 3 days postop. Not having that sternotomy is major!

[Tall_Allen in reply to dentaltwin]

I give him some credit, he actually called me to discuss it, and we talked for about an hour on Zoom.

He feels the side effects and patient convenience are better than RP, which is his background. I certainly agree with that. But what is the point, if it is not as curative? I suggested a trial randomizing patients to HIFU or IMRT.

He also feels that its primary use might be to extend the time a patient can stay on active surveillance. I pointed out that 50-60% of low risk patients can stay on active surveillance for 20+ years without any adjuvant therapies. A point I make here (Section II):

prostatecancer.news/2022/06...

He only recruits intermediate risk patients, but so far his results are no better than untreated men.

I asked him to investigate why HIFU fails so frequently, even when the whole gland is treated:

prostatecancer.news/2021/03...

He didn't know. I would love to see focal therapy boosters investigate the failures on a molecular basis, but so far, they just keep repeating the therapies that have been proven to not work.

[Peteshepherd]

you asked for experiences. I have had two. Both times single known lesions were ablated. First was 2017 focal laser ablation cost $25k. Second 2022 Tulsa cost $30k. Insurance only reimbursed under $2k each time. 1st was 3-4 about 1 cm, second was 4-3 5MM. No real side effects with either. Took about 6 months to fully heal. Never lost ability to have penetration sex, but had slight softening at times. Had some stress urgency. As most will tell you the catheter time is not fun. Keep well lubed with the lube and antibiotic ointment and snug jock a must.

I am now 67, still have the majority of prostate. Psa 3. Last months MRI w and w/o contrast showed all clear. Am blessed to have the funds and would definitely do again. And recommend to others for lesion ablations. Facts would dictate whether would use for partial or whole gland versus say SBRT.

When researching Tulsa make sure to differentiate between focal, quad, hemi and whole gland ablation outcomes. Ablating closer to nerves and urethra can result in higher side effects. Recurrence rates seem to be comparable to other treatments. But is a concern.

[CrackerOcala in reply to Peteshepherd]

Very helpful. So you being about 60 (at the start of things) it would be very important to maintain erectivity so that route makes perfect sense. I'm 74 this year but still plan on a few more good years. And really want to avoid other radiation side effects. . . Curious to know the length of time you had to deal with a catheter? "about 6 months to fully heal" - are you referring to urethra inflammation/irritation issues tapering off?

[Peteshepherd in reply to CrackerOcala]

Fla catheter was about a week. Tulsa after 7 days out one day then self-catheter for 3 days. had more swelling with Tulsa, not sure if because its trans urethral vs trans rectal for FLSA. Inflammation and healing took 6 months progressively better over that time. Once catheter out did not have much irritation or burning. As ablative tissue passes there can be some irritation. All clear of blood and tissue after 30 days. Had spasms with Tulsa that meds took care of. none after FLA.

I believe the 6-month healing time is consistent regardless of treatment. cutting, burning poking and prodding in prostate causes inflammation/irritation that takes time to heal.

[Seasid in reply to Peteshepherd]

What is your opinion about the Nano knife procedure?

[Hikerguy]

Had FLA in June, 2018 for a single 4+3 lesion at age 70. Dr. Walser at UTMB did a hemiablation taking our the right half of my smallish prostate. Catheter removed after 3 days with no complications. No ED or incontinence only some increase in urgency. Been on active surveillance since with periodic PSA and mpMRI scans which have all been clear to date. Cost me $25K out of pocket although Medicare Advantage finally covered about 40% after a couple of appeals. So I've kicked the can down the road for 6 years with none of the side effects many men get with RP and radiation. In my case and my case only, I'd do it all over again in a heartbeat.

[Hound45]

I chose HIFU. I can only speak of my own experience, not hundreds. After a year on AS following diagnosis of Gleason 6 (3+3) in June of 2020, a followup biopsy in July 2021 showed Gleason 7 (3+4). My urologist ruled out RP due to my age (76) in spite of excellent health -- with the explanation that regardless of health, the risk of incontinence at my age was too high. He recommended IMRT, which included ADT.

I want to live a long life . . . but not at all costs. Quality of life is important to me. After numerous 2nd opinions and hours upon hours, day after day of research, I decided on HIFU even though I was not a great candidate due to a prostate measuring 60 cc in volume.

From what I could determine, Dr. Stephen Scionti in Sarasota had done more procedures than anyone else. He agreed to take my case. To reduce the size of the prostate, I went on 45 days of Casodex and Avodart followed by a trans-urethral button vaporization in November 2021. With the prostate volume reportedly down to 37 cc, the HIFU procedure was performed 2 days later. In August 2022, I had a second HIFU procedure specifically targeting a small tumor using MRI fusion.

I am fortunate that cost was not the deciding factor as the cost of the first HIFU procedure was $11,000 as I recall with Medicare picking up the cost of the facility. The second procedure was $10,000; the button vaporization was $2500.

The catheter was in for 10 days the first time and 7 days the second. Other than some discomfort at night, I had no issues. It did take a lot of courage to take it out myself the first time. 😀

I know I am not "cured," but I have a very good quality of life for now.

I went back on AS with quarterly PSA tests and an annual MRI. After MRIs showing no activity and a PSA that is relatively stable averaging about 1.3, we are going to semi-annual PSA tests and bi-annual MRIs. If the cancer progresses, I'll address radiation and ADT then. In the meantime, I'll enjoy every day.

ED was an issue prior to all this. It is slightly more of an issue, maybe due to aging or maybe due to the HIFU. Otherwise, no side effects.

The negative comments I read on this website about HIFU give me some anxiety; however, based on my experience, I would make the same decision if I had it to do over again.

[Indy2012]

I had HIFU early April 2022 for a small amount of 3+4 on the right side. Doctor at IU Health in Indianapolis performed MRI guided biopsy prior to HIFU hemi ablation and treated some of the left side for BPH symptoms. No issues after the procedure - everything working as or better than before. Post-op biopsy showed benign tissue. Subsequent PSA tests show PSA down significantly, although I saw a rise in January. A MRI showed no new areas of concern, but BPH on the untreated side. Scheduled for another PSA test in July. Doctor attributes the rise in PSA to the BPH, so he's not concerned. I'm not advocating HIFU for everyone, as it depends on your individual situation. Doctor said IU Health (a teaching institution) made a conscious decision to price the procedure at $12k. I had the hospital bill my insurance, which they ended up paying in full, even though they considered it investigational and we're not going to cover it. Doctor said they are seeing more insurance companies paying now. I would encourage anyone considering HIFU to contact Dr. Bahler at IU Health. He did not push the procedure, just laid out the options. It's not a money maker for their practice.

[dochandley]

I was diagnosed with a 4+3 Gleason score. I had 40 external beam radiation treatments and a 6 month hormone therapy injection. After 4 years my PSA has begun to rise (to 1.6). PSMA showed one questionable spot on my prostate. Oncologist advised watch and wait for a few months. If it turns out to be a true recurrence, he said that focal therapy would be my best option, except that it is not currently covered under my insurance. Rather than pay $10,000 to $15,000 for focal therapy in the US, I will go to Thailand, Mexico, or the Philippines for treatment, if necessary.

[Seasid in reply to dochandley]

Did you consider the Nano knife procedure?

[NanoMRI]

I looked into focal methods, and traveled internationally for ones not available in US eight years ago. I reviewed my mpMRI findings with each doc and each or them, independently, felt there was insufficient margin for safe and successful focal treatment and each suggest surgery, which I had, and remain grateful that I did. Hope this helps. All the best!

[CrackerOcala in reply to NanoMRI]

thanks Nano