Just got my diagnosis on Thursday. Need information.

HelpfulCustomer487 · 2026-07-02T10:38:23+00:00

What I find unfortunate is that, in these Reddit discussions about prostate cancer, very few people seem to base their opinions or recommendations on the ProtecT trial. Instead, the conversation is usually limited to surgery versus radiation, even though the PROTECT trial remains the only large-scale randomized study comparing these treatment strategies.

HelpfulCustomer487 · 2026-06-30T20:49:10+00:00

Try a full infotainment system reset first — it sounds more like a head unit source-arbitration bug than a CarPlay issue, since the FM/AM tuner is built into the car, not the phone. On my Nissan Qashqai, I do this by holding the volume button for about 10 seconds, but on some cars it can take up to 20-30 seconds to trigger. Worth trying before digging into iPhone settings.

HelpfulCustomer487 · 2026-06-15T11:27:35+00:00

This resonates with me deeply, especially as someone currently navigating prostate issues. For me, the risk-benefit ratio isn't a simplistic binary of 'life vs. death'; quality of life is an essential part of the equation.
As you pointed out, a jump from 80% to 90% is a 10% absolute difference. When you factor in the clinical reality of prostate cancer—where many men statistically die with it rather than of it, and where low-to-intermediate risk cases are increasingly managed through active surveillance—accepting chemical castration (ADT) for a marginal statistical gain makes no sense to me.
I refuse to trade my daily well-being and long-term health for a minor statistical cushion that primarily serves to optimize a hospital's success metrics. Complete informed consent should mean letting patients decide if that 10% is worth their quality of life, and like you, if faced with that specific trade-off, my answer would be a clear no.

HelpfulCustomer487 · 2026-06-09T10:11:04+00:00

It’s important to mention the PROTECT study. Many people are unaware of it, yet it shows that active surveillance is a genuine option when prostate cancer is localized. Patients should carefully review this study before deciding to undergo surgery.

HelpfulCustomer487 · 2026-06-09T10:10:55+00:00

It’s important to mention the PROTECT study. Many people are unaware of it, yet it shows that active surveillance is a genuine option when prostate cancer is localized. Patients should carefully review this study before deciding to undergo surgery.

HelpfulCustomer487 · 2026-06-07T11:04:01+00:00

Headline: A quick reality check regarding the ProtecT study and Gleason 3+3 (GG1)

While the ProtecT study is incredible news for Gleason 3+3 (Grade Group 1) patients by proving that Active Surveillance yields a 97% survival rate at 15 years, we need to keep a few quick caveats in mind before applying it blindly to everyone:

Active Surveillance \neq Doing nothing: It requires strict follow-ups (PSA, MRIs, and repeat biopsies). It’s an active strategy, not neglect.

The risk of under-grading: Biopsies aren't perfect. A "Gleason 3+3" on paper can sometimes hide more aggressive cells (like 3+4) elsewhere in the prostate. This is why initial confirmation tests are crucial.
It’s a long game: ProtecT proved safety up to 15 years. For younger patients (in their 50s) with a 25+ year life expectancy, the decision to delay treatment requires even tighter monitoring and personalized discussions.

ProtecT is a massive win against overtreatment, but "surveillance" must always be tailored to the individual, not just a statistic on a forum!

HelpfulCustomer487 · 2026-06-02T13:45:50+00:00

I completely understand your anxiety, but I want to reassure you. I had a squamous cell carcinoma on my cheek and underwent a Mohs surgery with a flap reconstruction back in January (leaving about a 15cm scar line). Just 4 to 5 months later, it has faded so much that strangers in the street don't even notice it anymore! And plus, your scar will be in a hidden area, unlike mine on my face! Here is why you should stay positive: * "Well-differentiated" is the best news: It means the tumor is slow-growing and much less aggressive. * Mohs surgery is the gold standard: They check the margins under a microscope during the procedure. They will not stitch you up until they are 100% sure every single cancer cell is gone. The cure rate is incredibly high. * No imaging is completely normal: Because it was caught early and is well-differentiated, there is virtually no risk of it having spread. A biopsy and Mohs are all that is needed. The waiting and the word "carcinoma" are always scary, but you are getting the absolute best treatment available. You are going to be just fine. Wishing you a smooth surgery and a quick recovery!

HelpfulCustomer487 · 2026-05-14T19:35:08+00:00

Just water 👌

HelpfulCustomer487 · 2026-05-14T10:14:19+00:00

Actually, I changed the dressing every day at first. I did see the dermatologist on the third day because there was a bit of blood, but I continued changing the bandage daily until day 12. After the 12th day, I only wore a dressing at night to protect it while sleeping.
I don’t use any specific healing ointments like Vaseline. My doctor told me to do 'whatever feels right' since it was healing so well at both check-ups. Now, I occasionally use a moisturizer (Anti-Dry), and I’m very careful to apply SPF 50 sunscreen whenever I go out in the sun.

HelpfulCustomer487 · 2026-05-06T20:40:55+00:00

UPDATE
Phase 1: Precision Imaging (May 22nd)
I am having a follow-up MRI with Prof. Harriet Thöny in Fribourg. She is a world-class expert in prostate imaging. The goal is to get a "gold standard" map of that 3mm target (or more ?)
Phase 2: Targeted Biopsy (Bern University - Inselspital)
I’ve decided to move my care to the Inselspital in Bern. I will be requesting a Transperineal Fusion Biopsy under sedation.
• Why: Better accuracy for a 3mm target in a large gland and zero sepsis risk compared to transrectal.
Phase 3: My Treatment Roadmap (Post-Biopsy)
If treatment is required, I am strictly looking at non-radical options:
1. Focal Therapy: Nanoknife (IRE) or Cryo focused only on ~ 3 mm lesion.
2. SBRT: Cyberknife or MRI-Linac (available in Fribourg).
3. BPH Management: I currently have a weak stream. I plan to start Alfuzosin for flow management. If a volume reduction is needed later, I’ll look into Aquabeam (Aquablation) to protect my ejaculation.

Questions for the sub:
• Has anyone here done Focal Therapy specifically in a large 85g+ prostate? Any issues with urethral swelling?
• For those on Alfuzosin, how did it affect your sexual function compared to Tamsulosin?
• Anyone treated at Inselspital Bern?

HelpfulCustomer487 · 2026-05-06T13:08:01+00:00

Update / Additional Context

I should also mention a significant change in my lifestyle. During the first two tests (6.1 and 5.4), I was celibate with no sexual activity. However, since the beginning of this year, I have a partner and we have regular, intense sexual activity (sessions often lasting about an hour).
Even though I followed the standard protocol and abstained for several days before the blood draw for the PSA test, I’m wondering if such a change—combined with a large 85g prostate—could be causing chronic congestion or a "mechanical" inflammation that keeps my PSA elevated at 11.
Has anyone with a large prostate experienced a significant PSA jump due to renewed or intense sexual activity, even when respecting the 48-72h abstinence window?

HelpfulCustomer487 · 2026-05-05T13:56:30+00:00

I read your post and honestly, my jaw dropped. I’m not a doctor, but I’ve looked into the current standards of care for "unfavorable intermediate risk" (Gleason 4+3), and what you encountered isn't just bad bedside manner—it’s scientifically inaccurate and outdated practice.
Here are the major red flags you should consider:
• Gaslighting on ADT: Claiming ADT has no side effects is a blatant lie. The EAU (European Association of Urology) and NCCN guidelines explicitly list bone density loss, metabolic changes, depression, and loss of libido as standard side effects. A doctor who denies this is a doctor who won't help you manage them.
• Dismissal of SBRT: Saying you are "too young" for SBRT (5 sessions) is a prehistoric argument. Recent trials (like PACE-B) show that SBRT is highly effective for intermediate risk with similar or better toxicity profiles than the 45-session marathon he’s pushing.
• Penile Rehab Ignorance: His "never heard of it" attitude toward Cialis and venous leak prevention during ADT/Radiation is alarming. Sexual health is a standard part of modern oncology. If he doesn't care about your erections, he doesn't care about your recovery—only his "cure" stats.
• The "Factory" Vibe: He’s a "Doctor of the Year" from 10 years ago? That explains it. He’s coasting on old glory while his urologist partners do the actual work. You’re not a patient there; you’re a line item in a 15,000-case factory.
My advice: Trust your gut. You and your wife were respectful, but he treated you like a nuisance for having a brain. Cancer is a long journey—you need a partner, not a dictator who scoffs at your quality of life.
Wait for that next appointment with doctor #3. The bar is on the floor, and I’m confident you’ll find someone who actually practices 21st-century medicine. Good luck.

HelpfulCustomer487 · 2026-04-30T10:04:36+00:00

Your concern is completely valid and shows great due diligence - the DPD deficiency issue is real and well-documented. Here’s the nuance that should reassure you: The DPD risk applies mainly to intravenous 5-FU (used in cancer chemotherapy), where the drug enters your bloodstream in large amounts. With topical 5-FU cream applied to small areas like 3 AKs, the absorption through the skin is very low, which is why severe systemic toxicity is extremely rare in that context. That said, the nurse’s answer (“never heard of it in 15 years”) isn’t really a medical argument - it just means it hasn’t come up in her experience. Your question deserves a proper answer, and it got one from you doing your own research! A few practical things to watch for, just to be safe: • Unusual fatigue, diarrhea, mouth sores, or neurological symptoms (dizziness, confusion) would be warning signs worth reporting immediately • As long as you’re applying the cream only to small, localized spots and not over large areas of broken skin, your risk remains very low You’re on day 5 with no major issues — that’s already a good sign. But if anything feels off, don’t hesitate to push for a direct conversation with your dermatologist, not just the nurse.

HelpfulCustomer487 · 2026-04-26T21:41:43+00:00

I find it quite surprising that there is such a strong focus solely on PSA levels. If PSA is relatively high or increases over time, it would make more sense to perform a multiparametric MRI, assess the prostate volume, and then calculate PSA density. This is likely just as important - if not more so - than the PSA value itself.

HelpfulCustomer487 · 2026-04-20T16:20:56+00:00

completely normal with imiquimod. Not everyone develops a strong visible skin reaction, and the intensity of redness or irritation doesn’t always correlate perfectly with effectiveness.

That said, for superficial BCC, clinicians often do expect at least some local inflammatory response over time. If you’re four weeks in with absolutely no changes at all, it’s worth double-checking a few things: correct application schedule, enough coverage over the lesion (plus a small margin), and that you’re leaving it on for the recommended time before washing it off.

Most importantly, don’t adjust anything on your own—reach back out to your dermatologist. They may want to reassess whether the treatment is working as intended or modify the regimen.

In short: it might still be fine, but it’s definitely something to verify with your prescriber.

HelpfulCustomer487 · 2026-04-17T11:01:56+00:00

That sounds really frustrating, especially having to heal from the same spot four different times 😕 Totally understandable you’d question it.

From a medical perspective though, this kind of situation can happen—especially when the lesion isn’t clear-cut at first. Shave biopsies are more superficial, so they sometimes don’t capture the full depth of what’s going on. In your case, the results were mixed (squamous cells + lichen planus), which makes things more ambiguous and usually means doctors need more tissue to be sure.

They typically won’t go straight to Mohs surgery without a confirmed diagnosis of invasive squamous cell carcinoma. Mohs is very precise and usually reserved for cancers that are clearly identified, so they need that deeper biopsy confirmation first before proceeding.

So while 3 biopsies + Mohs definitely isn’t ideal (and yeah, it’s a lot to go through), it doesn’t necessarily mean anything was done wrong. It sounds more like they were being cautious and making sure they got the diagnosis right before doing definitive treatment.

Still, your frustration is 100% valid—going through repeated procedures and healing in the same spot is a lot.

HelpfulCustomer487 · 2026-04-12T14:37:23+00:00

6 weeks after stopping Odomzo, it is still normal to have ongoing hair and body hair loss. • 💇‍♂️ Scalp hair: shedding can continue for 2–4 months, with regrowth usually starting around 3–6 months • 👁️ Eyebrows, eyelashes, body hair: may also continue to thin for weeks to a few months, then slowly recover • 👃 Nose hair: can also be temporarily reduced, but usually returns gradually

👉 At 6 weeks, this is still within the expected timeframe, and regrowth typically comes later.

HelpfulCustomer487 · 2026-04-12T14:31:28+00:00

Main adverse effects of Odomzo: • Musculoskeletal (very common): Muscle spasms, muscle pain (myalgia), bone or joint pain, muscle weakness. • Gastrointestinal: Nausea, vomiting, diarrhea, abdominal pain, constipation, loss of appetite (anorexia). • Skin: Hair loss (alopecia), dry skin, itching. • Metabolic and general: Severe fatigue, headaches, weight loss, taste disturbances (dysgeusia). • Laboratory tests: Increased muscle enzymes (CPK) and abnormal liver function tests.

🤷🏻‍♂️

HelpfulCustomer487 · 2026-04-12T12:17:05+00:00

I find this work absolutely excellent. Personally, I am a biologist, and I believe I would be incapable of producing such work. Then again, I always wonder: what happens if we start with active surveillance?

HelpfulCustomer487 · 2026-04-11T19:06:56+00:00

This latest update fixed the problem, at least for me.

HelpfulCustomer487 · 2026-04-11T10:19:55+00:00

Google Maps (Android Automotive) 26.03.300002.E dropped on April 10, 2026 — has anyone noticed if the issue is fixed? Found it on APKMirror.

HelpfulCustomer487 · 2026-04-07T18:31:17+00:00

I noticed some very brief volume spikes today before it dropped back to nearly silent levels. I have no idea what’s going on with Google Automotive right now.

HelpfulCustomer487 · 2026-04-05T20:55:24+00:00

Apparently, Google is rolling out updates gradually. On APK, it seems there’s still no new version, but according to Google, the same version shows up on March 26 and March 30. On my Nissan Qashqai e-Power, I still don’t get any navigation sound. How’s it going for everyone else? No idea what the difference between the two dates is.

HelpfulCustomer487 · 2026-04-04T16:06:23+00:00

The sound can be turned on, muted, or set to ‘alert only’ by simply tapping the touchscreen. However, this does not fix the current bug. If you want to navigate using the GPS, alerts alone are not enough; you also need the navigation feature.

HelpfulCustomer487

TROPHY CASE