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3 months post-op Focal HIFU treatment

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Posted 3/6/2018 1:50 AM (GMT 0)
Hello All,
I’m new to this forum. Looks like a great forum. Hopefully I posted this right..

I was diagnosed with PC in July 2017 and had my treatment Nov 2017.
I decided to go with Focal HIFU treatment since everything else looked fine after many hours researching my options and seeing several HIFU specialists.

I’m now 3 months post-op and had my first PSA test. It’s came back at a 3.8 ng/mL.
I’m concerned that this is very high. From what I read everyone has a different baseline but would have expected a lot lower first score.
I just sent in test result to my HIFU doctor to see what he has to say.

Any thoughts/comments would be appreciated.

Continued info:

56 years old
PSA 3.5 (2014)
PSA 5.7 (2017)
2017 MRI/Ultra sound guided biopsy (12 samples)
3+4 in 90% of 9mm sample
3+3 in 90% of 5mm sample
2 others with 3+3 in very small volume.
All in right side of prostate


Thx!

PS: I will write something shortly on my whole experience (good and bad) finding a doctor….
Posted 3/6/2018 4:49 AM (GMT 0)
Focal HIFU is a very experimental procedure. There isn't nearly enough long term data that it should be done outside of a clinical trial. To understand the issues, including the one you mentioned, please read:

/pcnrv.blogspot.com/2016/12/focal-ablation-unresolved-issues.html

I wonder how many of these unresolved issues were discussed with you by any of the doctors you met with.

I'll reprint the two paragraphs that are most relevant to you here:

Allen said...
Tracking progression after therapy

After radical prostatectomy, we hope that PSA will become undetectable permanently. If it rises afterwards, we suspect recurrence. After radical radiation therapy, PSA reaches a nadir, usually less than 0.5 ng/ml. If it rises 2 or more points above that, we suspect recurrence. However, with focal ablation, there is no reasonably expected PSA nadir, and there is no rise in PSA we can label as a biochemical recurrence. The PSA changes will be different for every patient. Because only the index tumor has been ablated, we don’t expect PSA from small foci of cancer outside of the ablation zone to vanish, nor PSA from BPH or prostatitis. Because PSA cannot be used to monitor remission, we have to use imaging and periodic biopsies. Such imaging and biopsies requires experienced radiologists and pathologists because ablated tissue is qualitatively different from unablated tissue.

Re-do rates

As we’ve seen, some recurrences occur within the ablation zone, but most recurrences occur outside of the treated area. In the above-cited report on HIFU, 28% of patients had a recurrence. This is typical for focal ablation. An advantage often cited for focal ablation is that patients who have a recurrence can be retreated with a second round of focal ablation therapy. In the Ahmed/Emberton HIFU study, 20% of all patients were treated multiple times (others chose radical salvage therapy (7%) or permanent hormone therapy (1%)).

“Re-do’s” incur extra costs and may increase morbidity of treatment. There’s no guarantee that they will be effective. As we’ve seen, recurrences are common even when the whole gland is ablated.

Posted 3/6/2018 7:16 PM (GMT 0)
Hi Tall Allen,

Thanks for response.
Yes I did read the sited articles and is aware of the different way of looking at the PSA after focal HIFU treatment. Basically establishing a new base line PSA.
My treatment was done by a well known doc with extensive experience (~2000) in focal hifu. There are not that many with good hifu experience in the US and even fewer that does focal treatment.

My treatment was somewhere between a "hemi" and "focal" as I wanted any G3+3 and G3+4 areas ablated with a good margin.
The MRI was with contrast and 3T machine at USC. I was told by hifu doc. images and biopsy quality was excellent. (But of course still limited in identifying very small tumors.)

Bottom line is I would have thought my 3 month post-op PSA would have been lower.
Not 0.5, but certainlylower than 3.8.

As a note: PC patients who considers hifu option should be aware of doctors who claim to have done even 50-100 hifu procedures.
They will say "our team" has done 50-100. That number could include just being on the OR report and not actually doing the procedure him/her self. Could have been as part of the initial training etc. etc.
One doc, when pressed on how many he has PERSONALLY done got super defensive and annoyed.
His answer: "everyone lies"...! Needless to say he did not make the cut.
SO JUST BE AWARE

Some financial progress news is that I heard that Medicare is now partially reimbursing hifu procedures costs. However as in my case most regular medical insurance companies still consider it experimental. Hopefully soon as they typically go by medicare as a gold standard for whats covered.

Thanks,
-JM
Posted 3/6/2018 7:57 PM (GMT 0)
Medicare may reimburse the facility cost if done in a hospital or surgery center. They don't reimburse physician fees, anesthesia, etc. I'm glad to hear you were informed about the risks going in.

The European Association of Urology just came out with a position calling it investigational, which joins the AUA position. I don't think insurers will cover it anytime soon:

www.europeanurology.com/article/S0302-2838(18)30005-8/fulltext
Posted 3/6/2018 10:40 PM (GMT 0)
Great read. Thank you.
Yes more historic F-HIFU data would be great, just like any newer treatments or drugs, it's a catch 22.

The fact that it's an expensive out of pocket treatment makes it worse to collect data as many people can't afford it. (but that's another topic...)
One person (firefighter insurance) apparently got it all covered by insurers (in mid 2017) according to my USC source.
However don't know all the details.
Posted 3/6/2018 11:20 PM (GMT 0)
The biggest, longest running studies are from the Ahmed/Emberton group in the UK. They've published 5 year studies, but it will be at least another 5-10 years before anyone can draw conclusions. There's also controversy as to what it ought to be compared to -- is it just a way to extend one's time on active surveillance, or, should it be regarded as a curative therapy?

/pcnrv.blogspot.com/2017/01/what-should-focal-therapy-be-compared.html
Posted 3/10/2018 2:13 AM (GMT 0)
Maki,

Welcome to the forum. I am the same age and had similar biopsy, MRI and PSA results. G(3+4) and a G6. I also had focal Hifu. I went to Dr. Ahmed in London.

What results did your doctor tell you to expect and what was the doctor’s response to the PSA result? I was of the understanding that I should wait until the 6 month PSA check before we jump to conclusions on the effect of the treatment.

Its difficult to switch between treating it as cancer that needs to be cured and a chronic disease that needs to be treated and managed.
Posted 3/10/2018 4:34 PM (GMT 0)
Hi Bdubs,

I was just told (Dr. Scionti in FL) that my PSA of 3.8 after focal HIFU is okay. PSA is unpredictable because of the focal treatment and does not mean much according to doc. It just seemed high to me it was a bit high, hence my concern.
Scionti feels that 3 month post treatment PSA check is okay. The idea is to establish a new baseline and look for changes. 6 months post treatment I'm doing another PSA as well as MRI. The MRI will be important.
Everything about the focal HIFU treatment went very well. Very minimal blood from rectum (small spot for 3-4 days) Very minimal blood in urine. After 5-6 days undetectable with naked eye. Catheter for 7 days was worst part as it was pretty uncomfortable but all in all not a big deal. I could have probably taken it out after 4-5 days. No leakage or urinating problems at all. Perhaps a very slight negative change in erection but probably mostly in my mind.

Agree, it's a bit in between AS and curing. I figured I can have a more radical procedure later if needed. Perhaps imaging technology will get even better and better ways to ID cancer cells in the next few years with even better treatments.

Keep in touch and post your progress.

Best wishes!

Hopefully we will hear from other HIFU patients about their experience.
Posted 3/10/2018 5:57 PM (GMT 0)
That’s great.

I had similar minimal side effects. No blood from rectum but catheter for 5 days and that was the worst part. At one point I woke up with an erection in the early morning and holy crap that hurt and was confusing, I wasn’t sure what was going on! I thought the cath was malfunctioning or was blocked. Lol

Like you I am on that path in between AS and cure. And like you I plan to monitor improvements in imaging and treatment that I may need again in the future.

One piece of experience, my doctor encouraged me to actively keep ejaculating and not to have sex with my partner until it all cleared up. I had blood and material in my semen for for several weeks. Even after it cleared up and I began sex again with my partner I didn’t feel confident. I felt very emotional about it. My surgeon and GP gently assured it that it was psychological and emotional and I just needed to relax. I got a prescription for Cialis. It worked but also gave me heartburn. I used it for a month or so until I didn’t feel I needed the training wheels and all is back to pre procedure now.

Contact me directly anytime.

Brian
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