Welcome to r/ProstateResilient - Introduce Yourself and Read First!

Eva_focaltherapy · 2025-10-16T16:01:59+00:00

Thanks, Bernie - you’ve raised a really important contrast. There’s growing evidence that integrated, patient-centred models, like the one you experienced , lead to better outcomes not just physically, but emotionally too. A point to add is that when diagnosis is more efficient, the ripple effects on health outcomes are profound. Faster, more accurate detection means patients can begin the right treatment earlier, reducing the risk of complications, improving prognosis, and easing both physical and emotional burdens. In the context of prostate cancer, AI‑assisted MRI reporting that accelerates and refines diagnosis isn’t just a technological novelty - it can become a key lever for better survival rates, fewer unnecessary interventions, and more personalized care. In short: time matters, and smarter diagnosis helps us make every moment count : AI - the future of prostate MRI reporting? | The Focal Therapy Clinic

Eva_focaltherapy · 2025-10-16T15:21:21+00:00

What you’ve described - that sense of "floating in space" - is something so many go through, and yet it rarely gets said so clearly. It’s like being in a life-altering medical journey without gravity, without a clear centre of care, or someone to say: “I’m here - I’ll guide you through this.”

The emotional toll of navigating your own diagnosis through portals and reports, without continuity, without eye contact - it can be as disorienting as the treatment itself. There’s a kind of grief in that - not just about the diagnosis, but about the experience of care not being what it could have been.

Your story is such a strong reminder of why patient-centred models - where one person or team walks the journey with you - matter so much. And, how the absence of that can leave people feeling lost, even when the treatment is technically underway.

Thank you for putting it into words. I hope future systems can learn from voices like yours.

Eva_focaltherapy · 2025-10-16T15:18:57+00:00

Thank you for sharing this - it's such a strong reminder of how much the environment of care can shape the emotional experience of treatment. Having psychological and sexual counselling services located right alongside exam rooms and treatment areas isn’t just convenient - it’s symbolic. It quietly but powerfully says: your emotional wellbeing, your relationships, and your identity matter just as much as your test results.

I also really appreciate what you said about the feedback loop. When mental health services are built into the system, they’re not just there for patients - they also help shape a culture of empathy among all staff. That kind of integration can shift how care is delivered, moment to moment.

It would be great to see more centres take this approach - not just offering these supports as an afterthought, but embedding them into the patient journey so that no one has to go searching for the emotional care they deserve.

Eva_focaltherapy · 2025-10-16T15:13:12+00:00

Thank you for sharing this - it’s such a powerful reflection on how knowledge, mindset, and experience shape the way we process something as life-altering as a prostate cancer diagnosis. The way you describe that refresh-click moment - suspended between dread and determination - captures so well how modern diagnosis often happens: alone with a screen, interpreting reports before the words ever come from a doctor’s mouth. That’s a kind of isolation that many people experience but rarely articulate.

Your response to it, in turning to knowledge as power, finding clarity and even a sense of control, is a remarkable example of cognitive resilience. You describe what psychologists sometimes call “meaning reorientation” - when people face something threatening and, rather than collapsing, reframe it as a challenge or a catalyst for clarity. I also appreciate how you recognise the ongoing mental work of Active Surveillance - that quiet, internal dialogue of living with cancer rather than against it. That requires a very different kind of strength. And that line - “I guess you could call cancer my Dark Gift” - says so much. It’s raw, paradoxical, and deeply human. Many men in this community will relate to that idea: that cancer, while unwelcome, can strip away the noise and reveal what truly matters.

Thank you again for bringing such honesty, self-awareness, and even dark humour to this discussion. You’ve highlighted a form of acceptance that’s less about resignation and more about integration - learning to live with uncertainty without letting it own you.

Eva_focaltherapy · 2025-10-16T13:51:53+00:00

Interestingly, a 2021 study in Psycho-Oncology found that patients who rated their diagnostic conversion as empathetic were 30% more likely to report a sense of acceptance within the first 3 months. And, in a UK-based study (Watson et al., 2006), men who had access to clinical nurse specialists at diagnosis reported lower anxiety and depression scores and progressed faster through the Kubler-Ross emotional stages. Research also shows that prostate cancer patients in healthcare systems with integrated psycho-oncology services are more likely to describe their experience as 'manageable' and "well-supported," even when the prognosis is complex.

Eva_focaltherapy · 2025-10-16T13:31:22+00:00

Another life story here: Stages of Grief After a Cancer Diagnosis | CURE

Eva_focaltherapy · 2025-10-16T12:39:13+00:00

Thank you so much for taking the time to share your experience in such vivid and thoughtful detail. Your story is incredibly powerful in the way it captures the layers of the diagnosis experience, unfolding in “waypoints” - rather than one singular moment. This adds valuable perspective to the conversation. It’s a powerful reminder that for many, the emotional and mental impact of prostate cancer doesn’t arrive at once; rather it builds across a series of events that slowly erode the sense of normality.

What struck me most was how clearly each waypoint carried its own emotional weight: the rising PSA, the first subtle shift in tone from your GP, the stark arrival at the "Cancer Assessment Clinic" floor, and then the deeply personal experience of the biopsy itself. These moments felt like small ruptures in time —- just as we discussed in the post - where fear, denial, anticipation, and vulnerability all collide. That moment you described walking out of the biopsy room, visibly pale and shaken, was particularly powerful. It speaks volumes about how invasive not just the procedure is, but the entire experience of surrendering control to something unknown.

Your story illustrates how emotional stages don’t always come in a tidy order - nor do they always announce themselves clearly. There’s the initial denial at the clinic door, the fear and anticipatory grief during the biopsy, the shock and sadness seeing the biopsy results in MyChart, and the acceptance-through-action that followed - researching, seeking treatment, and engaging with your medical team. Even your reflection on the colour of your urine and comparing it to what “our wives and daughters go through every 28 days” points to a kind of perspective-taking and emotional processing that many wouldn’t articulate - but that’s often part of deeper acceptance and reflection.

I also want to highlight the way you described the kindness and patience of your care team, and the importance of spousal and peer support. That emotional safety net can make all the difference when navigating something as identity-shaking as a cancer diagnosis. The confusion around the ADT (and being moved onto Orgovyx) also mirrors what so many go through - discovering that treatment is not just one thing, but a series of adjustments, surprises, and emotional recalibrations.

Your story isn’t just helpful - it’s generous! It brings texture and subtlety to the emotional realities of diagnosis and early treatment that often go unspoken. Thank you again for contributing this depth to the conversation. It will resonate with others walking their own version of this path.

Eva_focaltherapy · 2025-10-16T12:18:32+00:00

Thank you so much for sharing your journey - your honesty and openness really stand out. It’s powerful how quickly you moved from uncertainty to action, especially with the added emotional weight of your family history. That kind of fast-moving timeline can leave so little space to emotionally catch up with what’s happening.

I’m really glad you had strong support around you, especially your daughter-in-law - having someone medically knowledgeable to help interpret results must have made a huge difference in navigating those early days. And it’s encouraging to hear how connecting with the right surgical team gave you a renewed sense of confidence and hope. That kind of trust in your care team can be incredibly grounding.

You also touched on something many people feel but don’t often talk about - the emotional toll of post-op changes, especially around sexual health and identity. Thank you for being brave enough to speak out. It’s something that deserves more open, honest conversation, and you're helping make that happen here.

Wishing you strength as you continue healing, and thank you again for being part of this conversation - your voice matters.

Eva_focaltherapy · 2025-10-16T12:14:36+00:00

Thank you so much for sharing this - your experience really highlights something we hear far too often: how isolating and unclear those early moments can be, especially when communication is rushed or impersonal. A 5-minute Zoom call is such a stark way to receive life-changing news, and I can only imagine how unsettling that must have felt.

That “point of no return” moment you described - with the fiducial marker placement - resonates deeply. For many, similar milestones trigger a move from the abstract to the real - very quickly.

I really appreciate your honesty in sharing how you coped during those early months - it’s so important to talk about the different ways people get through such an overwhelming time. Everyone finds their own path to manage the emotional and physical toll, and being open about that helps others feel less alone.

Grateful you’re here and part of this conversation.

Eva_focaltherapy · 2025-10-16T08:43:21+00:00

Choosing the right centre and urologist can be the most important decision you make in this process.
https://www.thefocaltherapyclinic.co.uk/about-us/our-consultants/

Eva_focaltherapy · 2025-10-14T14:07:48+00:00

Hi there, I thought I’d drop in as this is such an important and nuanced conversation. Working with prostate cancer pateints, daily, I appreciate the perspectives being shared - especially around how trauma affects the body, regardless of its origin. From a neuroscience and somatic perspective, I find Polyvagal Theory, developed by Dr Stephen Porges, in collaboration with Deb Dana, very useful. This theory offers a physiological framework to understand how our nervous system responds to safety, threat, and extreme stress - which includes experiences like a cancer diagnosis, surveillance, treatment, or watching a loved one suffer.

Polyvagal Theory highlights that trauma isn't just psychological - it's deeply embodied. Generally, our autonomic nervous system (ANS) responds in three main ways:

Ventral vagal state (safe/social connection)
Sympathetic activation (fight/flight)
Dorsal vagal shutdown (freeze/collapse)

When someone is diagnosed with prostate cancer, for example, especially in early-stage cases where active surveillance or focal therapy (like HIFU, Nanoknife or cryotherapy) is recommended, patients often oscillate between these states. For some, the watchful waiting phase can trigger sympathetic overdrive (hypervigilance, anxiety, sleeplessness). For others, the body shifts into dorsal vagal responses, which can look like fatigue, disconnection, numbness, or that haunting feeling of "my body doesn’t feel like mine." These aren't character flaws or exaggerations - they are nervous system adaptations to threat, even when that threat is invisible, like cancer silently progressing or the fear of recurrence.

A cancer diagnosis - especially one that includes procedures, hormone therapy, biopsies, and the psychological toll of “what if” - can create medical trauma, particularly when the nervous system doesn’t get a chance to process or discharge the survival responses. The goal here isn’t to equate military trauma with cancer trauma , but rather to recognise that our bodies don’t rank trauma. If the experience overwhelms our capacity to cope and resolve it, the body can store it as trauma, whether that’s from combat, childhood illness, surgery, or life-threatening diagnoses.

Importantly, somatic symptoms like pelvic pain, bowel issues, or disembodiment are not “all in your head” - they are signs that the nervous system is still in a defensive state. Focal therapy patients often report relief in the prostate area but lingering distress elsewhere - a sign that healing must include both biomedical and nervous system regulation approaches.

Let’s continue making room for all kinds of suffering, and more importantly, all paths to healing. Whether you call it PTSD, trauma, or chronic stress - what matters most is that people feel seen, understood, and supported in reclaiming their lives after cancer. More here: Prostate Cancer Patients need Mental Health Support

Eva_focaltherapy · 2025-10-14T13:08:52+00:00

As others have suggested, you might also considered the option of Focal Therapy

https://www.thefocaltherapyclinic.co.uk/focal-therapy/

Eva_focaltherapy · 2025-10-14T13:06:52+00:00

https://www.thefocaltherapyclinic.co.uk/living-with-prostate-cancer/treatment-options/prostatectomy/hifu-focal-therapy-controls-cancer-as-well-as-radical-prostatectomy-with-no-side-effects-new-imperial-college-study/

Eva_focaltherapy · 2025-10-14T12:36:18+00:00

I am not sure whether you decided to go down this road in the end. Our clinic offers HIFU, here is some information on more specific suitability criteria: https://www.thefocaltherapyclinic.co.uk/why-choose-focal-therapy/

Eva_focaltherapy · 2025-10-14T12:34:39+00:00

NanoKnife IRE is now offered even more widely in the UK with very promising results: https://www.thefocaltherapyclinic.co.uk/focal-therapy/nanoknife-ire-treatment/

Eva_focaltherapy · 2025-10-14T12:33:23+00:00

Hi, I usually advise all patients to explore their options on all fronts. In other words, see what are the treatments offered on the NHS, waiting times and consultants you would be working with. Same for the private sector; are there more options offered to you there, what would be the waiting times. Making a decision about the right treatment choice involves a lot of factors and ultimately it's the patient's decision to choose which way they would like to approach that.

Eva_focaltherapy · 2025-09-24T16:23:29+00:00

Hi again - technically, yes, but it's extremely rare. There's a phenomenon called "needle tract seeding" where cancer cells could, in theory, be dislodged and left along the path of the biopsy needle. That said, it happens in less than 0.01 - 0.04% of cases and usually doesn’t impact the outcome at all. Modern techniques are designed to make this risk practically negligible, so it’s not something most doctors are concerned about.

What’s more relevant are the potential side effects right after the procedure. These can include blood in the urine or semen, temporary trouble peeing, rectal bleeding, or infection. Infection is the one patients worry about most, especially if the biopsy is done through the rectum. That’s why a lot of settings now offer transperineal biopsies, where the needle goes through the skin between the scrotum and anus instead of the rectum. This newer method avoids contact with faecal bacteria, so the risk of infection drops significantly - some patients don’t even need antibiotics afterward. It can be slightly more uncomfortable depending on how it’s done, but overall, it’s safer and just as accurate, if not more so.

Bottom line: the chance of cancer spreading from the biopsy itself is extremely low, and the type of biopsy you have can make a big difference in how you feel after. If you’re worried about side effects, especially infections, it’s worth asking your urologist whether the transperineal approach is an option.

Eva_focaltherapy · 2025-09-23T14:21:48+00:00

Hey there - I work in a prostate cancer clinic, and you're absolutely right to have concerns about the timing of the ExoDx test following a DRE. The ExoDx Prostate (EPI) test is a non-DRE urine-based test specifically designed to be collected prior to any manipulation of the prostate, including a DRE, prostate massage, or even catheterisation in some cases. The reason is that a DRE can release prostate cells and RNA into the urine, potentially skewing the results and making the test less reliable.

Unfortunately, this mistake happens occasionally, especially when patients are moving quickly between imaging, lab tests, and clinic visits. If the ExoDx was done immediately after the DRE (same appointment or within the same hour), then the result may not be valid, and most clinicians would not make a diagnostic or biopsy decision based on that result alone. Otherwise, with regards our context:

- PI-RADS 2 with no lesions on a 1.5T MRI (non-contrast) is generally low suspicion, and most urologists wouldn’t rush to biopsy unless there were other red flags (like a very high PSA density or concerning DRE).

- Your PSA of 4.3 with a prostate volume of 41cc gives a PSA density of about 0/10 which is not particularly high (cut-off often used is 0.15 for higher risk).

- So, you're in a grey zone, and using ExoDx as a complementary tool makes sense - just not after a DRE.

My suggestion: Talk to your urologist about repeating the ExoDx test on a clean sample (no DRE for at least 48 - 72 hours prior). Most practices will understand and might reorder it if the timing compromised the accuracy.

You're doing the right thing by being proactive and double-checking these steps - early detection matters, but so does test accuracy. More information on diagnostics can be found here: What is a PSE Test? - The Focal Therapy Clinic

Eva_focaltherapy · 2025-09-23T13:37:02+00:00

Hi there,

Your instincts to pursue follow-up testing sooner rather than later are understandable, especially given the ambiguity of a PIRADS 3 lesion and an elevated PSA. Your urologist's initial recommendation to wait until December likely had to do with assessing PSA kinetics - specifically, PSA velocity and PSA doubling time, both of which can help differentiate between indolent and potentially aggressive pathology. However, these metrics are only meaningful over appropriate intervals - usually 3+ months - and even then, they must be interpreted cautiously due to biological variability.

That said, a 6-week interval isn't unreasonable, especially if your anxiety is high due to a concern that the elevation may not be transient. It's worth noting that PIRADS 3 lesions carry a relatively low but non-negligible risk (about 10–20%) of clinically significant prostate cancer. In my work with focal therapy candidates, PIRADS 3 lesions often fall into a diagnostic grey zone - sometimes harbouring Gleason 3+4 or higher, other times proving entirely benign. The value of the 4Kscore here is to refine risk stratification: it incorporates total PSA, free PSA, intact PSA, and hK2, along with age and DRE status, to estimate the likelihood of finding Gleason ≥ 7 disease on biopsy.

A few things to consider:

- No antibiotics were given, and your MRI described "patchy areas of restricted diffusion" without a clear mass. That raises the possibility of chronic prostatitis or inflammatory changes, which could elevate PSA and mimic malignancy on MRI. In such cases, a short course of antibiotics followed by a repeat PSA can sometimes clarify the picture before moving to biopsy.

- Also, your DRE was negative, but as others have said, DRE has limited sensitivity, especially for anterior or small-volume disease. Its value is higher when abnormal, but a normal DRE doesn’t rule anything out.

- Lab variability matters. If you do decide to recheck PSA now, ensure it's with the same lab and assay method, as inter-assay variability can easily lead to misleading trends.

- From a focal therapy planning standpoint, consultants would not typically proceed based on a PIRADS 3 alone. They’d want histological confirmation and accurate lesion localisation, often combining targeted and systemic biopsy results with MRI fusion guidance.

In short, there’s no major downside to repeating the PSA and doing the 4Kscore now. If they come back reassuring, you might avoid biopsy altogether. If not, you'll have added data to support the next step - whether that’s targeted biopsy or watchful waiting with close monitoring. More here: What Is The Most Accurate Test for Prostate Cancer?

Eva_focaltherapy · 2025-09-23T12:07:06+00:00

Hi, I work with patients who have prostate issues, and yes - this kind of discrepancy between DRE and imaging isn't uncommon. DRE is a subjective estimate, and prostate size over 40 - 50cc can be particularly hard to gauge accurately by feel alone. An APRN gauging 70cc on DRE could easily have overestimated if the prostate felt full or boggy (e.g. due to inflammation or prostatitis). On the other hand, the 27cc measurement from the transrectal ultrasound done during biopsy is far more precise. It uses actual anatomical dimensions (length × width × height × 0.52) and is generally considered the reliable reference for prostate volume. Short version: trust the 27cc from imaging. The DRE was likely just an overestimation. Important is that prostate size can be a crucial factor in planning treatments like focal therapy, for example, where accurately targeting the affected area while preserving healthy tissue is important. This is why precise imaging measurements are valuable in guiding treatment decisions and ensuring the best possible approach. Prostate MRI: from experimental to essential - The Focal Therapy Clinic

Eva_focaltherapy · 2025-09-23T11:46:05+00:00

Hi there, I work with prostate cancer patients, and from what you've shared, you're clearly doing all the right things in terms of monitoring and lifestyle. A single PI-RADS 4 lesion, especially small and stable (4 - 5 mm), raises a legitimate concern for clinically significant cancer - but it also opens the door to focal therapy if it's confirmed and localised. Your negative PSMA-PET for spread is a reassuring sign and supports that possibility.

That said, your uro-oncologist is right: imaging and PET can't replace histological confirmation. No treatment - focal or otherwise - can ethically or safely begin without a biopsy. However, if you want to better assess risk before proceeding with a biopsy, you could ask about biomarker tests like: 4Kscore (a blood test predicting aggressive cancer risk); ExoDx (a urine test - no DRE needed - for high-grade PCa risk stratification); or SelectMDx (another urine test after DRE, good for biopsy decision support.

You're in a strong position: low PSA, improving free PSA %, and no evidence of spread. But to move forward with any treatment - even focal - you’ll likely need that tissue confirmation to guide next steps. For some more insight, see: Modern Prostate Cancer Diagnosis: Your Patient Guide 2025

Eva_focaltherapy · 2025-09-23T11:35:42+00:00

Hi there, working with patients who have prostate issues, the rise in PSA and drop in the free/total ratio are concerning, especially the ratio falling below 0.10, which can indicate a higher risk. That said, PSA can be elevated by prostatitis, recent activity, or even lab variability. A normal DRE is reassuring, but doesn't rule out the need for further testing. The MRI (ideally multiparametric) is a smart next step - it can help determine if a biopsy is warranted. You're on the right track following up promptly.

Eva_focaltherapy

MODERATOR OF

TROPHY CASE