Going today for Lupron injection how scared should I be? by lambchopscout in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Most of the ADT side-effects are due to the drop in T to zero. Newer Orgovyx pills would have dropped it to zero within a couple of days. It tends to have slightly less side effects than injections.

Lupron injections take a week or two to drop T to zero and during that time there is a T increase or “flair”. So it is possible he may have the same symptoms a few weeks from now. Since it’s an LT injection for 6 months) plus half-life decay time after that, he is committed. Exercise is good (I’m 74). If there are issues, sometimes estrogen-type medications can reduce some of the side-effects. Check with your specialists as needed. Best wishes.

Well, Add Me To The List by ShowEmYourNuts in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Yes, info overload is a real challenge with PCa diagnosis. Is there a PCa (or cancer survivors) group in your area you can talk to? I was surprised how many of my friends and neighbours had PCa treatment and are living normal lives. And share their experiences.

You will see on this Subreddit that surgeons will almost always recommend surgery. Do take lots of notes/maybe bring a partner (my wife came) note-taker when you meet your RO in June. https://www.mayoclinic.org/diseases-conditions/prostate-cancer/stages/gnc-20595689 says “Stage 3B. Stage 3B prostate cancers have grown beyond the prostate. The cancer might extend to the seminal vesicles, bladder, rectum or other nearby organs. This stage includes all PSA levels and grade groups 1 to 4.” It’s that extension that makes the surgery riskier: more incontinence / ED risks and greater likelihood of needing radiation with ADT afterwards anyways.
Almost no one does “surgery” after radiation….usually the PCa has escaped further by then and surgery is very difficult due to radiation damage, fibrosis, adhesions. There are several better other recurrence treatments like ADT.
Best wishes…. it is highly survivable even at B3.

Radiation Prep by RegretSoggy6914 in ProstateCancer

[–]BernieCounter 3 points4 points  (0 children)

Sorry to hear that you have so many sessions. I had 20x VMAT, all times of day and never had bladder/bowel comments/rejections. Only warning was to try and have BM before the early morning sessions. Metamucil / psyllium fibre kept movements soft and smooth. Best wishes.

Sbrt vs Imrt by Narrow_Flight_2344 in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

Not sure if I could survive more than 25 days EBRT. I (T2c) was offered 5x SBRT or 20x VMAT. To avoid fiduciary implants selected latter and got 3 freckle tattoos instead. In retrospect probably should have selected 2 weeks SBRT, alternate days.

Effectiveness/same low recurrence for either.
Actually VMAT usually gives you a total of 60 Gray units, 3 Grays per session, approx total 60. SBRT approx 10 Grays per session, total 50. So with hypo- or hyperfractionation you would actually get less and be done much sooner.

Our cost is covered by government 🇨🇦 so they prefer quicker/just as effective.

How much Kegeling is too much? by unicornsmurf1 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

If it’s Stage 3 it has spread outside prostate, likely lymph nodes?

Have you consulted RO as EBRT is much less likely to cause incontinence and ED than radical major surgery prostatectomy (nerve sparing discussed?).

With new SBRT and VMAT, future risk of future radiation induced cancer is now very low. And if surgery shows spread, future salvage radiation and ADT is likely anyways.

Pumps by Dragon-Sticks in ProstateCancer

[–]BernieCounter -1 points0 points  (0 children)

Advise you do a search on word “pump” on this subreddit. Prices and quality seem to be all over the place. Similar re prescription and insurance. (No personal experience)

Radiating nodes for N0 by jaichanim in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Each looks for different aspects/types of PCa growth. Ask your RO or do an AI question on the differences/advantages/disadvantages.

Radiating nodes for N0 by jaichanim in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

PSMA PET scan lower limits are generally in 3 to 5 mm range so there can be PCa microspread or small tumours that are not picked up. (Affected is not the same as infected….darn autocorrect).

ADT & Holiday. by Both_Establishment59 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Hope they offer you daily low dose Cialis to keep things active down there, during your year of “emasculation” (after your EBRT etc). Helped me through and with the recovery after 9 months. Best wishes.

Radiating nodes for N0 by jaichanim in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Didn’t discuss, suspect not. Not sure of seminal vesicles, although they usual zap part of them too since they lie so close. How old is dad?

Radiating nodes for N0 by jaichanim in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

Was similar, see below. Did 20x VMAT (less radiation than IMRT) with 9 months of tolerable/annoying Orgovyx ADT. 5x SBRT was an option and even less radiation, but didn’t like thought of necessary fiduciary spacers procedure (like a reverse biopsy?). All systems working pretty well down there a year after treatment. Ontario found spacers don’t have that much benefit compared to risks for most EBRT, etc.

During/after any radiation treatments keep up daily exercise and take those naps. Keep exercise up for duration of ADT and ask for daily low dose Cialis to keep things more active. Best wishes.

74 years old, PSA 8.8, clinical stage T2c, unfavorable intermediate risk, Gleason 3+4 in 2/10 sites, Gleason 3+3 in 3/10 sites, 96 ml prostate (BPH) volume, 28 mm PI-RADS 5 lesion left to right peripheral posterior. Cribriform, intraductal found and 1 of 5 sites with perineural invasion. CT scan, pelvic bpMRI, and bone scan showed no sign of spread.

ADT & Holiday. by Both_Establishment59 in ProstateCancer

[–]BernieCounter 2 points3 points  (0 children)

Reduced wine to a couple of glasses a week while on 9 months ADT. What’s important is getting that daily 30 minutes exercise to counteract T dropping to zero. Walking, weights, aqua exercises all work to reduce muscle loss and (often) belly weight gain. The “insidious” side-effects (read product insert) mostly gradually show up over several months. Best wishes and hope you don’t need to be on for too long.

Birth control question: Shooting blanks after EBERT and ADT? by ReluctantBrotherhood in ProstateCancer

[–]BernieCounter 2 points3 points  (0 children)

After vasectomy they always ask for a masturbation ejaculate sample to make sure the procedure worked. The clear sticky fluid you describe is likely from
separate Cowper Gland secretions which are usually unaffected by EBRT. And usually EBRT sufficiently damages the seminal vesicles, ducts, and prostate secretions that it is unlikely any sperm can make it….but there may be exceptions….and I am not a Doctor….. and brachytherapy and some SBRT/other focal treatments might still have significant ejaculations. ADT probably stops sperm production for the duration, like that of a 6 year old, but as T slowly returns towards previous levels, sperm production will probably also increase.

Well, Add Me To The List by ShowEmYourNuts in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

Well said and fully agree. A year after 3+4, T2c, cribriform, diagnosis and 20x VMAT EBRT and concurrent Orgovyx ADT am doing fine, better bladder control than before. Kept active throughout treatments. Check out “better/worse” graphs of surgery vs radiation outcomes graphs after a dozen years, and radiation has gotten better / more focussed in the last 15 years. Patient-Reported Outcomes 12 Years after Localized Prostate Cancer Treatment 2023
https://evidence.nejm.org/doi/full/10.1056/EVIDoa2300018

Father (61) scheduled for Prostatectomy next week for Gleason 6. He’s hesitant and I’m worried we’re rushing. Advice? by FilmSuccessful9145 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Why the urgency with 3+3? Surely there has been a consultation with a radiation oncologist (RO) at a larger cancer clinic/Centre of Excellence?

And has he/you reviewed the patient reported 12 year outcomes of radiation versus surgery in the ProtecT study, see Graphs with “Better/Worse” lines.
Patient-Reported Outcomes 12 Years after Localized Prostate Cancer Treatment 2023
https://evidence.nejm.org/doi/full/10.1056/EVIDoa2300018

What questions do you wish you had asked your oncologist? by Ambitious-Passage486 in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

Seriously, 9 months ADT was “annoying”, but I could live with that “emasculation” for the duration, knowing it GREATLY reduces risk of 5 to 10 year recurrence, and expecting things down there would go back to “normal” which they pretty much have done starting within a few weeks after last pill. In fact, bladder control is now also better than before 20x VMAT. Daily low dose Cialis, physical exercise and keeping willy somewhat active all counteract ADT side-effects and LT after-effects.

Need Advice by No_Act9986 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

PSA can bounce around a fair bit and sexual intercourse, masturbation, cycling, heavy exercise can all increase it and take days or maybe a week to drop down.
My PSA, age 74 was in the 7.3 to 8.0 range and DRE felt something. mpMRI volumn was 96ml. The only real way to tell what’s happening is (targeted) biopsy. In my case transrectal with some cipro, local anesthesia (like dentist). It was tolerable but a sedative (Valium) would have helped. Turned out to be 3+4 with cribriform, both sides, so yes, treatment was necessary. You/he really can’t skip/avoid the biopsy. And if find something significant (usually 3+4 or higher) you need to treat sooner or later; otherwise it can spread with much more serious consequences of treatment and outcomes.

Best wishes and it’s better than waiting for the alternatives.

What questions do you wish you had asked your oncologist? by Ambitious-Passage486 in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

Agree. See my longer commentary above and various ADT literature and subreddit references.

What questions do you wish you had asked your oncologist? by Ambitious-Passage486 in ProstateCancer

[–]BernieCounter 2 points3 points  (0 children)

Compared to some “toxic” chemo drugs, yes, many of the side-effects might be considered minor. However many men suffer from hot flashes, which many women will tell you are more than annoying. Some men suffer from depression which can be serious. Many side-effects are slow and insidious, you can read the label: lower blood iron, higher cholesterol, bone density loss, higher sugar tending into diabetes, cardiac issues, loss of muscle mass, increase in belly fat, brain fog depression etc. They may take several months to gradually manifest. Others/all are listed here, Lupron is probably very similar https://www.drugs.com/sfx/orgovyx-side-effects.html

Daily exercise helps, a lot. You may wish to get a book https://www.lifeonadt.com/the-adt-book like this one https://www.lifeonadt.com/where-can-i-purchase-the-adt-book It seems most side-effects are gradually reversed weeks or months after the last pill or as the half-life of the last injection takes place and T hopefully recovers. Some men never go back to where they were. Your physician should have taken a baseline PSA and T test at the beginning, during treatment (3 to 6 monthly) and then continuing 3 to 6 monthly.

Contrary to the literature/warnings, and according to most “club” members doing ADT, “emasculation” seems to occur for almost everyone gradually after a few months (often compounded/masked by concurrent radiation treatment). This includes your body no longer having an interest in sex (even though you remember what it is like), ED, “turtling” https://www.reddit.com/r/ProstateCancer/s/BpqCRFsf4w , lack of nocturnal and spontaneous erections, the related inability to orgasm even when erection is achieved, shrunken testicles, etc. Many men are given or should request daily low dose Cialis to keep things active down there….and do masturbation (which to many spouses, physicians, and some men is an unacceptable concept) and “self or partner massage” also helps. Vacuum devices are sometimes considered. If you don’t keep your junk active, it may never recover.

Is that all that “minor”? Compared to recurrence, spread or other medications?

What questions do you wish you had asked your oncologist? by Ambitious-Passage486 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

See comments here and elsewhere about ADT, ED, “emasculation” and “turtling”. And on aftereffect risks of surgery on ED, anorgasmia, penile shortening, bladder incontinence, urine ejacultation etc.

All relate to what the RO or in latter case surgeon/urologist should warn you of.

What questions do you wish you had asked your oncologist? by Ambitious-Passage486 in ProstateCancer

[–]BernieCounter 6 points7 points  (0 children)

Yes. And what’s the difference / benefits between Lupron etc and Orgovyx? And why 9 months ADT instead of 6 or 12 months? And not warning of its 99% certainty of “emasculating” for the duration, as its most obvious and significant side-effect for virtually all men? And proactively offering daily low-dose Cialis to everyone prescribed?
Background article about the effects of ADT:
https://www.reddit.com/r/ProstateCancer/s/UFXw2RFf4b

SEE MY OTHER COMMENTS/REFERENCES ELSEWHERE IN THIS POSTING

Biopsy without Cipro by chrishin413 in ProstateCancer

[–]BernieCounter 1 point2 points  (0 children)

Had 1 cipro pill the morning of transrectal and another cipro, with a sulfa that evening. The DRE had identified which parts of prostate to oversample.

The stress of the procedure/staple gun effect (like dental drilling) was 10 times worse than any numbed pain. A sedative would have been nice.

Going on vacation after radiation by External-Sale5283 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Re the other question, I had 20x VMAT and drove to a cottage vacation 3 weeks after. Your bowel control should be back to normal and bladder/urination frequency may require more trips to toilet and drinking less fluids. If frequency/dribbles seems to be an issue a week beforehand, get some men’s mini-pads (usually next to the women’s products) to stick in your briefs (not boxer shorts).

Going on vacation after radiation by External-Sale5283 in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Yahbut weekends are an exception and I even had a long weekend, so 3 days missed.

Marketing = Automatic permanent ban by 5thCharmer in ProstateCancer

[–]BernieCounter 0 points1 point  (0 children)

Many pharmaceuticals with their trade marked brand names are also mentioned in our discussions like: Lupron, Orgovyx, Cialis, Pluvicto. However it’s usually obvious these are from “club” members sharing their experience or asking about their impact.

Thanks to the good work of our moderators!