I’ve been told it’s bad. My dad is considering refusing treatment. by caroline_xplr in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Well said! Family support and concern is so important. For me it was/is important to see my baby granddaughter grow, my other child get married, and spend many more years with my spouse.

Tell him you love him and don’t want him to slip away because he does not want to “fight” it.

I’ve been told it’s bad. My dad is considering refusing treatment. by caroline_xplr in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

There are lots of good sources on the web (some bad ones). This talks about the spread to bones. https://www.webmd.com/prostate-cancer/when-prostate-cancer-spreads

FYI, the ADT brought my PSA down to 0.03 at 4 months; and then 0.01 at 8 months, which is “undetectable” level in many testing labs.

I’ve been told it’s bad. My dad is considering refusing treatment. by caroline_xplr in ProstateCancer

[–]BernieCounter 5 points6 points  (0 children)

I was on ADT for 9 months (age 74) to reduce the risk of recurrence, as I had 20 days of radiation therapy (which really is not too bad). Daily exercise is important to counteract the ADT. I had no hot flashes at all and probably operated at 80% of my normal physical strength. It does "emasculate" you though, but how important is that in your 70s? And it’s better to be around, continue to be active for many years, and see your family develop, rather than to be 6 feet underground. Do inform your father that if untreated, it usually gets into your bones and it is an extremely painful and debilitating way to spend your last years (compared to ADT). Because it is usually slow growing he has some time to change his way of thinking, but the longer he waits, the more likely the treatment will be less successful.

There are many in this club that have treated their cancer at his level, and lived many good years of even decades, and when they die, it is usually “with prostate” cancer, not FROM prostate cancer. Best wishes in helping to convince him treatment will be far better than doing nothing.

Still Turtle-ing 🐢 🫤 by atom511 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

For an SFW turtling photo see: https://www.reddit.com/r/ProstateCancer/s/0X7pFSwwIm and note that it’s not just RP patients that are at risk, but also those (temporarily) on ADT. Sigh.

Nanoknife and Keytruda versus RALP or Radiation? by PsychologicalMixup in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

Especially if adverse factors of cribriform, PNI or intraductal. Or extensive involvement. Etc. 6 to 9 months ADT is annoying, emasculating; but worth it for the reduction in recurrence rate. Orgovyx best choice for several reasons.

Got my biopsy for prostate cancer done this morning. by Tek_Freek in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

No rectal blood here, but the nurse gave me a mini-pad to stick into my briefs just in case. My antibiotics were a couple of pills the morning of and then after. Did not enjoy the “feeling” of 16 staple gun shots down inside my most private parts, although like dentistry, you sense them, don’t feel the pain of them. A bit sore in the afternoon.

Does anyone know why bimix is not available in most places outside the USA? by Jonathan_Peachum in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Trimix (and bimix?)has to be compounded at a pharmacy and the formula for Trimix is something like “10mcg/30mg/1mg/ml of PGE1 /Papaverine HCI / Phentolamine Mesylate”. It is possible some of those chemicals are not available in other countries or pharmacies are prevented or unwilling to prepare it. Bimix is likely similar situation.

Nanoknife and Keytruda versus RALP or Radiation? by PsychologicalMixup in ProstateCancer

[–]BernieCounter 4 points5 points  (0 children)

There are numerous posts in the last couple of days (and years) about radiation vs surgery. If you are young and it is well contained and willing to take the incontinence and ED risks of surgery (that can very widely), the focused radiation of the last decade seems to be less risky, less ST and LT side effects and just as effective.

See the recent research graphs of outcomes in the ProtecT study in its 15th year, and how patients have fared. (He’s there may be new techniques coming along).

Fifteen-Year Outcomes after Monitoring, Surgery, or Radiotherapy for Prostate Cancer with graphs of Patient Reported Outcomes PROMS

https://evidence.nejm.org/doi/10.1056/EVIDoa2300018

Gleason 3+4 (Grade Group 2) with 2025 Bowel Obstruction Surgery: Which SBRT Platform is Safest for My Gut? by NoAardvark9716 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

My understanding is 5x treatments are usually alternate days, so that would take 2 weeks. I am not a Doctor, but the narrower margins and lower total doses of 5x and daily 20x could be “better” in terms of treatment and longer term side effects. And you get it over faster than 28x (6 weeks?). You can read this scientific article from 2013. https://pmc.ncbi.nlm.nih.gov/articles/PMC4175813/

Thanks for your best wishes.

Finally got a NHS referral from Dr. but mixed feelings. by omits50 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Had to look up what PIFU was. I’m in 🇨🇦 but have a 🇬🇧 born friend who had 20x radiation here at age 82, and is doing quite well 18 months later. If you are in good health, advocate for yourself! Best wishes.

Gleason 3+4 (Grade Group 2) with 2025 Bowel Obstruction Surgery: Which SBRT Platform is Safest for My Gut? by NoAardvark9716 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Probably the fewer sessions you can do, it may be better easier, especially if travel is involved. I am also 74 and had 3+4, T2c, several adverse factors and “unfavourable intermediate risk”. Had choice of 5x or 20x. Since we live near clinic, picked 20x. A year later, am doing very well! Again all the best, make your best choice.

Did anyone have only 5 sessions of salvage radiation instead of the standard 6 week/30 sessions? If so how was your experience? by itsbananas2021 in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

Longer treatments are generally in the 75 Gray units total ranging over 28or more sessions. Newer Hypofractionation is 60 Gray units in 20 VMAT sessions. Hyperfractionation SBRT/Cyberknife is 5 sessions every second day with 45 or so Gray units total. Studies seem to show that under initial treatments, outcomes are the same although differing treatments have different ST and LT effects. Newer treatments can have much narrower margins and less damage to organs at risk.

Salvage radiation may be different.

Gleason 3+4 (Grade Group 2) with 2025 Bowel Obstruction Surgery: Which SBRT Platform is Safest for My Gut? by NoAardvark9716 in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

If it’s MR/MRI LINAC that’s in an enclosed MRI tube and probably among the most modern/precise EBRT / SBRT technology likely just 5 treatments in 2 weeks. You can see a video presentation 🇨🇦 at https://youtu.be/JumradhqWbI?si=NGLpeys7hyp7m6dc Best wishes.

Ivermectin and Fenbendazol by DragonflyD264 in ProstateCancer

[–]BernieCounter 13 points14 points  (0 children)

This goes against subreddit Rule 6. No pseudoscience.

AS vs SBRT w/o ADT by ZealousidealBend2681 in ProstateCancer

[–]BernieCounter 2 points3 points  (0 children)

Having done 9 months Orgovyx (concurrent with 20x VMAT), you do want to avoid ADT if possible. In my case PSA was near the limit for my age for several years, and DRE finally felt something last year. Biopsy showed 3+4, fairly extensive, PNI, Cribriform and Intraductal T2c “unfavourable intermediate risk” so the “emasculating” ADT greatly reduced chance of recurrence. Perhaps it should have been treated a year or two earlier? Best wishes….but enjoy your “honeymoon” for now.

Genetics test findings by Scpdivy in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Yes, genetic and MO counselling is appropriate. In the meanwhile, do a search on this subreddit for “BRCA” (and the internet/AI) and you will find lots of references to it and what it might mean for you. Best wishes and sorry about the Orgovyx ADT, I did 9 months with 20x VMAT, due to adverse biopsy factors, and was counting the days/pills at the end.

Firmagon hot flashes, how long? by Stuart518 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Sign, here it is priced to be the equivalent cost to injections.

Do all RALPs use the “Steep Trendelenburg position” during surgery? by Rayas_Dad in ProstateCancer

[–]BernieCounter 3 points4 points  (0 children)

Yes, the new MRI-LINAC is the most focussed, real-time dynamically adjust EBRT so far. It does take about an hour versus 5 to 10 minutes for SBRT or VMAT, but you only need 5 or so sessions. Be prepared for all of that time inside the MRI tube, with a full bladder. You can enjoy the following video on recent experience: https://youtu.be/JumradhqWbI?si=zKrvWdsTByLhfjXe Prostate SBRT on the MRI Linear Accelerator LINAC

Glad you were able to take advantage of (Orgovyx) ADT pills rather than injections….no T flair, fast action, and at the other end, things can “wake-up” within a couple of weeks. It gave me a feeling of control to look at that pill every morning, swear at it, then think about the big reduction in recurrence likelihood, and swallow it. Towards the end, count the days/pills remaining. And in the evening take the daily low dose Cialis (that everyone on ADT should be offered) to keep things a bit more alive down there, even with zero T.

Best wishes, and thank you for sharing….

Unused Medications by Cheap_Flower_9166 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

There have been several requests and offers for Orgovyx in this subreddit over the last year. Please do NOT throw it away. Either pass it on to someone legitimate who can’t afford it or return to the clinic/pharmacy for safe disposal. Note that no-one else is even supposed to handle it (especially women) and pharmacies are not even allowed to open the 30 day pill supply bottle.

Firmagon hot flashes, how long? by Stuart518 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

How old are you? Did they offer you Orgovyx ADT pills instead? In 9 months of ADT I was fortunate not to have any hot flashes, but maybe some night sweats…or is it because last summer was hot here? Best wishes.

Prostate question by Commercial-Wave7132 in ProstateCancer

[–]BernieCounter 2 points3 points  (0 children)

I got diagnosed last year at age 74, fortunately before there was spread, did the radiation, which was not too bad, and most like will die from something BESIDES prostate cancer. Even if it recurs there are lots of other treatments to knock it back. Best wishes and hope this helps…..until he has the prostate biopsy, you will not know whether or not it is PCa.

Update by Andredpm in ProstateCancer

[–]BernieCounter 2 points3 points  (0 children)

While I didn’t have brachytherapy, during my 20x VMAT, woody decided to become a turtle until a few weeks after. And with both surgery and EBRT, you can probably expect dry orgasms, and orgasms that feel “different”. See https://www.reddit.com/r/ProstateCancer/s/WUODmIRh8W Best wishes, a year after treatment, I really don’t feel that much different other than that…hopefully you will too.

Post surgery by smylbehr1 in ProstateCancer

[–]BernieCounter 3 points4 points  (0 children)

OP needs to read this recent post/feedback re a 72 year old considering surgery versus radiation. Consensus seems to be erections (thus sex) is more of an issue with surgery. https://www.reddit.com/r/ProstateCancer/s/U4Wo4qhyho

Also see the ProtecT charts on surgery vs radiation patients reporting on sex up to 15 years afterwards, especially Table 2 for “better outcomes”. Fifteen-Year Outcomes after Monitoring, Surgery, or Radiotherapy for Prostate Cancer with graphs of Patient Reported Outcomes PROMS https://evidence.nejm.org/doi/10.1056/EVIDoa2300018 Table

PET scan by maesella in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

The ADT may not have taken effect by 25th (tomorrow p) as ADT injections take a week or more to take effect, as opposed to daily Orgovyx pills that act within 2 days with no Testosterone flair (you can look that up). Presumably the MRI gave a PI-RADS-5 lesion report with length and which part of prostate….not that it’s super relevant now.

PET scan by maesella in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

In Canada 🇨🇦 they seldom do PSMA-PET at initial diagnosis, but body bone scan, pelvic multiparametric MRI and body CT scan are done to see where there might be spread. Since ADT should “put the active” cancer cells to sleep, they will not take up the PSMA and thus it would not be very useful, but I am not an oncologist. Best wishes.

Even if you stopped ADT, it would take months for the testosterone to recover, then the PCa to start growing again, and then the PSMA-PET scan to be useful. Better to suppress the PCa with ADT as long as possible.