63 yo, live in Europe, diagnosed w/ PCA in Aug 26 and hard to decide

Posted by lojewski @lojewski, 3 days ago

Hi all, I´m 63 yo, recently retired, live in Europe and was diagnosed in mid August. My father was diagnosed with prostate cancer at age 57, that is why I checked my PSA annually since 2010. This April it came back with slightly over 4.0 for the first time, so I decided to get an mpMRT which showed a Pirads 4 single lesion in the posterior, right peripheral zone of the prostate. A subsequent fusion biopsy resulted in a Gleason 3+4 (7a) diagnosis (favourable intermediate) with 8 out 12 samples taken from the lesion positive, however with only 5% of gleason 4 in all positive samples. No perineural invasion, -no lymphovasular invasion, tumor extension in samples 7-27%, one sample 50%. Another 12 systemic samples taken from the prostate were all negative.

I have used the past 2 months to look into all treatment options and their respective pro and cons and need to come to a decision. My last PSA value taken this week was 3.95, so it seems to be quite stable...

a. Active Surveillance: my urologists says that I could bacically do it, but I should expect that I will need definitive treatment sooner or later. Because of my family history (father prostate cancer, sister breast cancer), I am unsure whether it may be too risky and I should do it. In my country it is difficult (very expensive, to be paid out of pocket) to get genomic tests such as decipher or germline tests (for e.g. BRCA 1/2). I am anxious not to miss the "window of opportunity" for treatment, e.g. radiotherapy without the need of ADT

b. Focal Therapy: HIFU would be possible, but due to the location of the lesion there is a risk that the right nerve bundle gets thermally affected with ED a consequence. Cost would be borne by my health insurance in full within the framework of a clinical trial.
I will have a consultation re IRE next week. This might allow to spare the right nerve bundle, but as IRE is considered as "experimental" here, it could only be done in a private hospital at cost of around 20-25 K EUR. All Urologists and also Radiooncologists have advised against focal therapy, especially against IRE because of lacking long term outcome data and relatively high recurrence rates. Same as for active surveillance I wonder, if my family history is an argument agains focal therapies.

c. Radical Prostatektomie: due to the potential side effects profile and although it is most urologists´primary recommendation, this is my least preferred option

d. Modern radiotherapy /SBRT with MR Linac (Elekta)
This could be done at a university hospital in 5 sessions. Cost would be fully borne by my insurance. ADT would not be necessary. Side effects are in my view more "tolerable" than those of RALP

So those were my options.
My local urologist would in principle support active surveillance (although there are caveats) , is against focal therapies, accepts my aversion to RALP and would support a decision for SBRT/MR Linac.

Would very much appreciate your thoughts. Thank you!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for Jeff Marchi @jeffmarc

@lojewski
You have too many positive cores with 3+4 to consider active surveillance. I know people with 3+3 that waited to be treated and ended up 4+5. Once cancer starts, it doesn’t usually become milder. It becomes more aggressive unless it’s treated..

You had a lot of of cores with cancer. You don’t show us your T score. Were you a T2b? That would mean it’s on both sides of your prostate so focal therapy doesn’t make a lot of sense. SBRT radiation does.

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@jeffmarc

A single lesion was found (through mpMRT and subsequent targeted biopsy) in only the right side of the prostate. All 8 positive cores (out of 12 sampled) came out of this single lesion. So I guess the T score is T1c or T2a...

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Profile picture for brianjarvis @brianjarvis

Thoughts (about each of your comments)…….

Even without access to genomic tests (such as decipher) or germline tests (for e.g. BRCA 1/2), they say that when a 1st-degree relative has prostate cancer, it increases the odds by 50%. (Plus other family solid tumor cancers probably increases the odds a little as well.)

Consider having your “Free PSA” tested along with your next “Total PSA.” PSA exists in two forms - attached to certain blood proteins and also unattached (i.e., “free”). % Free PSA is the ratio of unattached PSA to Total PSA in the blood. A higher % (above 25%) suggests more benign conditions, while a lower percentage (under 15%) indicates less benign conditions.

If you decide not to get treatment at this very moment, see what other (possibly inexpensive) biomarker tests they MIGHT offer: FoundationOne®Liquid CDx; Guardant360; Caris Assure; Prolaris; OncotypeDx; 4KScore; EpiSwitch PSE; Phi Prostate Health Index; SelectMDx; PCa3 (PC Antigen 3); MyProstateScore (MPS), ExoDx. Each provides information that might help in your decision.

Since you have a “4” in your Gleason score (albeit a small percentage), there is increased chance of metastasis (compared to a Gleason 6). Will they approve a PSMA PET scan? That information might impact your treatment management decision.
=================

a. I’m a supporter of active surveillance — when it’s appropriate. I was on active surveillance for 9 years (2012-2021), using that time to dig deep into learning about prostate cancer, and ultimately deciding on a treatment regimen just in case I ever needed to make that decision…..which eventually I did.

b. Can’t answer that one. I was not a candidate for focal therapy, having more than one lesion. Actually, though the risk of spread is certainly higher with not being treated (compared to surgery or radiation), recent data show that it’s not that much higher (see this study out of the UK: https://www.nejm.org/doi/full/10.1056/NEJMoa2214122). Plus, not jumping too quickly into treatment, and using the time to gather more information while still closely monitoring, buys you time to take advantage of medical advances before making that final decision.

c. With the success rates of localized prostate cancer treatments - no matter surgery or radiation - being statically equivalent, it all comes down to side-effects and quality-of-life (or as that paper concludes, “… the choice of therapy involves weighing trade-offs between benefits and harms associated with treatments for localized prostate cancer.”). The possible/likely side-effects of surgery didn’t fit my quality-of-life prifile.

d. MRI Linac is a good option. (Is that the technology that provides continuous, real-time live imaging of the prostate during treatment, and can even pause the beam if the prostate position shifts?) (If they administer the radiation well - and don’t overshoot the prostate, hitting otherwise healthy tissues and organs - the risk of side-effects is very low. What radiation doesn’t hit, it won’t affect. (I had 28 sessions of proton radiation, and had only 1 day of adverse side-effects, and none since; that was 5-1/2 years ago. My most recent PSA was 0.366.)

You mention that “ADT would not be necessary.” ADT typically isn’t recommended for a low-grade 7(3+4) without other significant risk factors (which you don’t appear to have). However, there is an ArteraAI Prostate Cancer test that looks at the biopsied tissue characteristics to determine if ADT would be beneficial (or not). Is that test available/affordable to you?

> If you choose radiation, will you be using a rectal spacer (SpaceOAR, Barrigel, or BioProtect)?

Choose well.

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@brianjarvis

- yes, it is the MRI guided photon radiation where they track a "live picture" of the prostate and a pre-radiaton placement of gold markers in the prostate is not necessary
- PSMA Pet Scans are available, but considered not to be required for "favourable intermediate" cases with initially very low risk of metastases
- I read about the use of Artera AI in the US, but it is not available in the EU yet (just got the CE approval mark in April ´26 though)
- both ROs I have consulted (Cyberknife + MR Linac) have told me that they don´t use rectal spacers because of their higly precise radiation protocols

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Profile picture for jim18 @jim18

@lojewski It comes down to how you value quality of life vs. trying to get the best treatment now available for eliminating the cancer. With AS you just monitor, IRE is the middle ground where you get rid of current cancer and monitor it for recurrence. IRE recurrence is much worse with 4+3 than 3+4. Search for IRE posts. Some posters have had success with IRE for many years. Since you will still have a functioning prostate, a recurrence can be an entirely new lesion that developed.
Since SBRT radiates the entire prostate it has a much lower rate of recurrence. If the radiation was limited to the area of the lesion it might be close to the side effects of IRE; however, I have never heard of a RO do partial treatment of the prostate like they do with lungs, brain, etc. just focusing on ablating the lesion with SBRT.

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@jim18 You wrote, "I have never heard of a RO do partial treatment of the prostate like they do with lungs, brain, etc. just focusing on ablating the lesion with SBRT." I too asked about that approach and was told that SBRT is given to the entire prostate and not focused solely on the tumor or lesion(s).

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Profile picture for N227 @n227rv

@jim18 You wrote, "I have never heard of a RO do partial treatment of the prostate like they do with lungs, brain, etc. just focusing on ablating the lesion with SBRT." I too asked about that approach and was told that SBRT is given to the entire prostate and not focused solely on the tumor or lesion(s).

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@n227rv The prostate is both small and non-essential for life. Lungs and brain, not so much...

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Profile picture for lojewski @lojewski

@jeffmarc

A single lesion was found (through mpMRT and subsequent targeted biopsy) in only the right side of the prostate. All 8 positive cores (out of 12 sampled) came out of this single lesion. So I guess the T score is T1c or T2a...

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@lojewski
That’s either T1 or T2 a. The thing is, Many of the people in this forum, that have had their biopsy done, have found that the cancer was in area not seen on the MRI. If they didn’t really get a broad range of cores From both sides of the prostate, It is possible that they missed a lot. A biopsy only gets about 1% of the prostate. If they didn’t examine the other side you don’t know what could have been found, Unless you have a prostatectomy.

If it truly is on only one side, then it might be possible to do focal therapy.

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Hi @lojewski ,

I am also living in Europe (Germany) and got diagnosed ast year in August. I have since underwent RARP, Linac radiation and currently still in treatment with ADT for the next year or so.
If you have time this Wednesday, at 8PM (German Time), we are having an online live support video chat, courtesy of Ancan.org. We met online once a month and we have gents from different countries in Europe and we share our story and progress in the treatment, as well as various treatment options. It is free and there is no registration required.
How to join: https://ancan.org/barniskis.

I have another thread on Mayo Connect under Europe based members (https://connect.mayoclinic.org/discussion/europe-based-members).
In this blog you can also see some of our previous recordings. It is a new group that we just started in February, this year.

I look forward to see you in there this Wednesday. If you have questions feel free to reach out to me via a private message, in this chat, or in the Europe Based Members thread.

P.S.: I have mentioned you in the Europe Based Members so you can get a link directly to that thread.

Stay strong and be positive.
Dinu

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I received Proton therapy! is radiation treatment: proton beams are aimed at the prostate to damage cancer cells, and it generally treats the prostate rather than just one small tumor spot.
In 2019 I had no side effects in remission

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Profile picture for Jeff Marchi @jeffmarc

@lojewski
That’s either T1 or T2 a. The thing is, Many of the people in this forum, that have had their biopsy done, have found that the cancer was in area not seen on the MRI. If they didn’t really get a broad range of cores From both sides of the prostate, It is possible that they missed a lot. A biopsy only gets about 1% of the prostate. If they didn’t examine the other side you don’t know what could have been found, Unless you have a prostatectomy.

If it truly is on only one side, then it might be possible to do focal therapy.

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@jeffmarc Missed: "Another 12 systemic samples taken from the prostate were all negative." So 12 standard TRUS + 12 targeted. So 16 with benign and 8 cancer all from targeted lesion.

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Profile picture for jim18 @jim18

@jeffmarc Missed: "Another 12 systemic samples taken from the prostate were all negative." So 12 standard TRUS + 12 targeted. So 16 with benign and 8 cancer all from targeted lesion.

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@jim18
Sounds like too many positive cores on one side to do focal therapy. You never know what they’ll do When they look closely at the medical record. Is focal even available over there.

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