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1 year on - no PSA but tumor has "progressed"

Zudukk profile image
17 Replies

Hi all

I am writing on behalf of my dad, who is not as tech literate as I am.

He was diagnosed with adenocarcinoma of the prostate (suspicious nodule in the left peripheral zone) back in June 2023 following an initial MRI, biopsy and PSA test (results from those tests are below).

He was advised to actively surveil with a strong recommendation for HIFU as the next course of action, if the symptoms worsen, or the problem has spread.

A year on, he's just had a second MRI scan (although we don't have the printed results yet), which according to the radiology nurse, shows no signs of spreading, but does appear "more visible" and she used the word "progressed".

He hasn't yet had a second PSA test, nor has he had a second biopsy. Note that while he may choose not to have the second biopsy (let's see what the forum thinks), he is going for his second PSA test (early next week) .

I'll include a snapshot of the data interpreted as important below:

10/06/2023

PSA - 3.6

Gleason 3+4

Technique - 1.5mpMRI

Prostate volume - 3 (CC) x 2.6 AP x 3.5 (TR) cm

Volume - 15 cc

PSA density - 0.24 ng/ml/cc

Location - Left peripheral zone, at apex

NOTE - we don't yet have the written results of the second MRI yet. I presume that would be very useful to contextualise the last year's results... I'll chase again.

In any case, the hospital are STRONGLY urging him to go for HIFU now, and have even advised he not bother with the second PSA or biopsy.

Do you think the medical team has enough to go on to suggest HIFU treatment at this stage?

He is a 56 year old male, who hasn't presented any symptoms (that are directly attributable to prostate cancer, from our limited research). He is generally well, considering he smokes and drinks fairly regularly but not overly.

Any advise is really appreciated.

Thank you so much.

Z

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Zudukk
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17 Replies
Tall_Allen profile image
Tall_Allen

1) An MRI is not enough to decide if it has progressed, he needs a biopsy. Only grade progression is an indication for treatment.

2) HIFU doesn't work! Even when the whole gland is cooked, it still comes back:

prostatecancer.news/2021/03...

prostatecancer.news/2016/12...

In my experience, HIFU doctors are like used car salesmen, and they are desperately trying to sell your father a lemon. I suggest he find a new doctor.

Zudukk profile image
Zudukk in reply toTall_Allen

Thanks for ynr input and sage advice.

I can't find many more recent studies or even opinion leaning one way or another.

Two follow-up questions I have:

1) If (another) biopsy suggests the issue is progressing, what would be the recommended treatment plan?

2) My dad seems to have bought what the salesmen are selling and is pretty convinced that HIFU is an agreeable course of action. So, I jmy question is, aside from the obvious side effects, what are the downsides to trying HIFU (apart from it not succeeding)? My research suggests that it wouldn't block (in the majority of cases) subsequent and more invasive treatments - what are your concerns with trying HIFU?

Many thanks

Z

Tall_Allen profile image
Tall_Allen in reply toZudukk

Those links are kept current, so there is no more recent data.

1) He should talk to an array of specialists before deciding.

2) Salvage treatment always has worse side effects that primary treatments. HIFU is not covered by insurance, so the cost is also a downside.

I'm sorry your father was hoodwinked. He is not alone - it is a big scandal.

9020B profile image
9020B in reply toTall_Allen

"Only grade progression is an indication for treatment." He is 3+4. Are you saying no treatment needed unless it becomes 4+3 or greater?

Tall_Allen profile image
Tall_Allen in reply to9020B

No. He may have too much pattern 4 for AS to be safe. Only a biopsy can tell him that.

Zudukk profile image
Zudukk in reply toTall_Allen

But, based on the first and only biopsy, would you have expected treatment at this stage?

Tall_Allen profile image
Tall_Allen in reply toZudukk

I haven't seen his biopsy results, so I can't comment.

Zudukk profile image
Zudukk in reply toTall_Allen

Hospital called to instruct another biopsy IS needed! Will be scheduled in the next two weeks, at which point I will report back

9020B profile image
9020B in reply toTall_Allen

How much pattern 4 do you consider safe for AS? While I am asking, how much 3+3 do you consider safe for AS?

EJC61 profile image
EJC61 in reply to9020B

For 3+3, I've been told the guideline is no core over 50% . In my discussions, doesn't seem any 4 is safe for AS but that seems debateable among the medical community.

Tall_Allen profile image
Tall_Allen in reply to9020B

It's a judgment call. You have to look at the total cancer volume as well as the percent pattern 4.

Justfor_ profile image
Justfor_

Your 2023 mpMRI seems to have been done using a 1.5 Tesla machine. If the current one is from a 3 Tesla machine some "progression" can be attributed to the enhanced imaging capability of the latter.

NanoMRI profile image
NanoMRI

I see in other posts you're under NHS. I lived in Surrey and had staff so I am familiar with NHS. I have received 2nd opinions from the Royal Marsden for the past nine years. The experience you are describing seem contradictory to what I experience there and the experiences of my former staff. (Note I have been back in US for number of years).

Do you have recommendations in writing from a multidisciplinary team? And do you have second opinions on the mpMRI findings? (I find it odd and questionable practice that a nurse has commented on MRI findings.)

My tumor was also near the apex and so was recommended surgery over focal treatments.

I am fascinated by the seeming hateful bashings that occur in HU. Nine years ago I consulted with Professor Dr Mark Emberton at University College London. You might want to reach out to him for a 2nd opinion, especially on HIFU. Also, I found him to be very skilled with imaging findings. This link may be of interest. Hope this helps. All the best!

grandroundsinurology.com/ca...

WilsonPickett profile image
WilsonPickett

Find a radiation oncologist who is well practiced in MRI guided SBRT. In my experience, and living in New York City, which has the best options around, that treatment seems to be the gold standard, and often covered by insurance.

lpol83712 profile image
lpol83712

Study shows HIFU noninferior to prostatectomy for localized prostate cancer

May 6, 2024

By Russ Conroy

lpol83712 profile image
lpol83712

I sent a reference from urology literature currently that promotes. HIFU. I personally am a skeptic as I had only focal Gleason 7 on first 24 biopsies (they were reviewed pathology at NCCI center) and I went to Mayo for clinical trial of focal therapy. Before my treatment 8 months after first biopsy my repeat in MRI magnet biopsy showed an area of Gleason 8!

He definitely needs repeat biopsy as that is a part of active surveillance and to date no clear proof focal therapy beats AS. There are true believers in focal therapy and there are those making money on it. Approach it slowly and preferably at major center in a clinical trial

Zudukk profile image
Zudukk

FYI - he's an NHS patient in London (UK), and doesn't have the means to seek many second opinions, although I'm sure he can ask to be switched to a different hospital, or even specialist.

So far, based on the diagnostics to date (1x biopsy, 1x PSA test, 1x blood test and 2x MRI scans) they've strongly suggest he opt for treatment. The options of which are:

1 (strongly recommended) - HIFU

2 (less strongly recommended) - radiation therapy

We still don't have the results of the second MRI scan, but by all accounts, they don't mean much anyway.

Interesting reply that suggested he was previously scanned with a different machine to that of the second scan. Hence the prominence (or higher resolution - to put it into my interpretation).

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