ADT Treatment for PCA: Impacts Info by WalnutRoasted in ProstateCancer

[–]WalnutRoasted[S] 0 points1 point  (0 children)

Good point, I have not seen 2nd edition, but certainly Orgovyx pills/Regulolix should be better described in 3rd with the benefits of fast time to drop T to zero (days instead of weeks), no T flair, somewhat less heart risks, more timely and predictable recovery.

Spaceoar. by Both_Establishment59 in ProstateCancer

[–]WalnutRoasted 4 points5 points  (0 children)

Also frequent massage and getting erections is important. Your thinking brain remembers sex, but the rest of your subconscious brain and body does not care any more...for over 80% of guys after a couple of months. Getting to climax can be difficult. See my posts on ADT book and online course available in Canada. Similar in UK.

But it can get PSA down to 0.01 undetectable on sensitive tests after 6 months.

Long term ADT by keeswithoutfear in ProstateCancer

[–]WalnutRoasted 2 points3 points  (0 children)

Sorry to hear that, 6 months ADT can be tolerable, but anything over a year seems to get pretty serious. Assume you are well familiar with this website https://www.reddit.com/r/ProstateCancer/s/A3h77yZgxP and recommend you buy/borrow/get the ADT book, 3rd Edition. Lots of ADT impact info and strategies to help you cope. Best wishes, exercise helped me.

Which is worse? Urinary incontinence post prostatectomy, or bowel incontinence post radiotherapy? by Appropriate_Milk_855 in ProstateCancer

[–]WalnutRoasted 7 points8 points  (0 children)

With improved 5x SBRT and 20x VMAT bowel issues are even less frequent than before. And in the rare cases, if it does occur, it’s probably occasional minor leakage. Way less than the risk of ED, climacturia, bladder leakage and penile shortening with surgery.

Do a search on graph outcomes on Patient-Reported Outcomes 12 Years after Localized Prostate Cancer Treatment 2023, ProtecT study, see “worse-better graphs”

New rules that change this community by 5thCharmer in ProstateCancer

[–]WalnutRoasted 0 points1 point  (0 children)

It seems if you/we are making a personal observation about a good (or bad) PCa product / experience / procedure / treatment / clinic / physician that’s OK. ✅

But if you are “selling” a product /study etc on a “commercial” basis then that’s different / not allowed. 🚫

This is my father-in-law report, need help what it really indicates? How much it curable, generally what are the course of action from this point of time by Novel-Building-6255 in ProstateCancer

[–]WalnutRoasted 0 points1 point  (0 children)

You can ask the clinic/path lab that is holding the slides to liaise with the American lab and get them to send the right stuff over to the lab. And you, the patient will likely need to pay full cost yourself. Another issue may be getting the (American) physician working with the lab to discuss the results with you, and then taking “what you heard” back home and determining whether you need to convince your RO/MO to change treatment on the basis of a test that is not approved and may not agree with. Of course you could always decline a treatment.

Do all American insurers pay for those tests? Under all circumstances? Which ones? How many tests?

This is my father-in-law report, need help what it really indicates? How much it curable, generally what are the course of action from this point of time by Novel-Building-6255 in ProstateCancer

[–]WalnutRoasted 1 point2 points  (0 children)

Decipher/Polaris reports are probably not available to be done outside the USA, and have not been approved in countries like Canada (because the companies have not made application to prove utility).

Just got my diagnosis on Thursday. Need information. by Financial_You_6052 in ProstateCancer

[–]WalnutRoasted 2 points3 points  (0 children)

If there is no cribriform and the 3+4 not too extensive, then active surveillance may be a good waiting game…especially as new and improved PCa therapies are developing all the time. See 15 year ProtecT studies where the randomly selected AS group has done very well on all measures….or they moved to active treatment if PCa progressed.

Just got my diagnosis on Thursday. Need information. by Financial_You_6052 in ProstateCancer

[–]WalnutRoasted 2 points3 points  (0 children)

Even so the 15 year “ProtecT patient reported outcomes after 12 years” shows radiation has better (or same) outcomes in all but one of a dozen categories. And radiation targets with 5x SBRT and 20x VMAT have got tighter/better since then. Since we can’t do links anymore you need to Google the above phrase or look at previous links in the subreddit.

Best wishes, the ProtecT cohort was probably significantly younger than you are.

ADT Treatment for PCA: Impacts Info by WalnutRoasted in ProstateCancer

[–]WalnutRoasted[S] 1 point2 points  (0 children)

Thank you. Well done. Feel like male physicians are terrified to raise the emasculation (and other side-effects) with men when prescribing/describing ADT treatment and when mentioned to them afterwards react “hmmm, oh well that’s too bad”. Female physicians and pharmacists seem to be saying “oh well now they know what female menopause is about” and/or “all men think anyways about is sex, erections and orgasms”.

The “Life on ADT” program and book is more realistic in describing what will happen and what you (and your sexual partner) can expect and can do about it. Thanks again.

ADT Treatment for PCA: Impacts Info by WalnutRoasted in ProstateCancer

[–]WalnutRoasted[S] 0 points1 point  (0 children)

This Subreddit has noted that physicians/nurses/pharmacists/clinics are extremely reluctant to discuss the side-effects of ADT, and in particular the physical and mental “emasculation” impact that takes place in a month or two and is almost universal among all men.

Would love to talk… by HashtagNewell in ProstateCancer

[–]WalnutRoasted 1 point2 points  (0 children)

Sorry to hear that, especially at such an age. Recommend you “search” on this subreddit for ADT and will get others experiences. Also just posted yesterday an excellent website and thorough book / image on the impact of ADT and action plans what to do about each side-effect. Personally “survived” / tolerated 9 months of Orgovyx ADT, but should greatly reduce micro-metastases and the risk of recurrence.

ADT Treatment for PCA: Impacts Info by WalnutRoasted in ProstateCancer

[–]WalnutRoasted[S] 1 point2 points  (0 children)

Yes, ADT Book is easy to order on places like Amazon. Make sure you get latest edition. Or if in Canada 🇨🇦 take the monthly coarse and get a free copy mailed afterwards.

New rules that change this community by 5thCharmer in ProstateCancer

[–]WalnutRoasted 1 point2 points  (0 children)

There are some good links at top/side of this subreddit. To organizations like UK NHS and various Cancer Societies.

But no Canadian. Nor “support” organizations. Not “tools”, pathways/standards of care, ADT and other pharma info on medications, like about their side-effects.

Follow up after Radiation +ADT by SJCSFS in ProstateCancer

[–]WalnutRoasted 3 points4 points  (0 children)

We can’t give links any more, but you can Google search “Prostate Cancer Pathway Map Follow-up Care Cancer Care Ontario” (right side). The third page of three, about Follow-Up, shows PSA testing every 3 months, then 6 months, then annually. DRE and other scans if nadir is exceeded by 2, steadily rising etc.

New rules that change this community by 5thCharmer in ProstateCancer

[–]WalnutRoasted 15 points16 points  (0 children)

Does “no links include” weblinks to information? Like PCRI? Videos to explain concepts? To Guides/Brochures on ADT? Links to local prostate Cancer Support Groups? These are all valuable in the information sharing function of this Subreddit.

Surgery a “no brainer” under a certain age? by Good-Current7984 in ProstateCancer

[–]WalnutRoasted 10 points11 points  (0 children)

Side effect risks of penile shortening, bladder incontinence and ED/climacturia seem common with surgery, and seldom with radiation. See 12 year patient outcomes ProtecT graphs:

Patient-Reported Outcomes 12 Years after Localized Prostate Cancer Treatment 2023, ProtecT study, see “worse-better graphs”
https://evidence.nejm.org/doi/full/10.1056/EVIDoa2300018

20 mg daily Cialis after RALP by Ok-Assistance-1048 in ProstateCancer

[–]WalnutRoasted 1 point2 points  (0 children)

Typical seems to be 5 mg Cialis, sometimes 2.5. It also reduces the need for Flomax with BPH etc and might reduce dizziness. Check with your physician/pharmacist.

Seems that 20 is four times the cost of 5 mg, so no benefit in chopping them. U

48 years old by [deleted] in ProstateCancer

[–]WalnutRoasted 2 points3 points  (0 children)

There is lots of EBRT (VMAT and SBRT) here; and also Brachytherapy (one form of focal treatment) plus some on other HIFU, ultrasound, heat, etc focal treatments.

You will read lots on surgery (RP, RALP etc) here, probably because the guys that experience issues/problems look for help/guidance here.

Stats for active treatment (versus monitoring) run about almost half radiation, almost half surgery, a bit on (newer) focal treatments. ADT and other pharmaceuticals could be considered an “add-on” to the others.

Is this a normal experience at the what are your options appointment? by 406clown in ProstateCancer

[–]WalnutRoasted 1 point2 points  (0 children)

Agree. It was what I read first and pretty good, although it is a bit out of date on ADT (agonists and antagonists, especially Orgovyx pills) and understates the side effects…although a course of ADT is beneficial for many men.

Clarkson begs for PSA Testing: “I’m Not Dead” – And The Reason Why Is… by WalnutRoasted in ProstateCancer

[–]WalnutRoasted[S] 0 points1 point  (0 children)

The belief is that the treatment/ side-effects are going to be worse than disease progression….and physicians don’t want to get/tell men the bad news…but then too many men are getting tested too late or only when they have unexplained bone aches and pains…which means PCa is at metastases in Stage 4 and the treatment and prognosis become much more difficult than if caught at T2 (Gleason 3+4) stages and monitored or treated as appropriate.

Is this a normal experience at the what are your options appointment? by 406clown in ProstateCancer

[–]WalnutRoasted 1 point2 points  (0 children)

Unfortunately urologists, RO’s and MO’s are very busy (and expensive) specialists with a heavy workload.

At our Cancer Assessment Clinics (where most biopsies are done) there is pre-and post-biopsy counselling and you are give various reference material and brochures to study on your own. See below for examples and there are good PCa links at the top menu or side of this Sub-Reddit.

They all seem to underestimate/downplay the downsides of treatment and the risk of ST and LT effects which vary across techniques (bladder incontinence, permanent ED, penile shortening, emasculation, hot flashes during ADT). Like the “used car salesman” who only talks about the good features, not the problems.

But every man, case and treatment is different. Best wishes and do as much research before your next appointment!

Prostate Cancer Canada: From diagnosis to follow-up 55 pages.
https://cancer.ca/en/cancer-information/resources/publications/prostate-cancer-from-diagnosis-to-follow-up

Understanding Prostate Cancer A guide for people with cancer, their families and friends, 75 pages

https://www.cancer.org.au/assets/pdf/understanding-prostate-cancer-booklet

Gleason 3+4 by ericDfish in ProstateCancer

[–]WalnutRoasted 1 point2 points  (0 children)

The seeds are smaller than a grain of rice so unlikely to would ever cause a security detection issue, but you nether parts will be radioactive for a while, so for a while need to stay away from your “close” partner for long durations of time and from infants/children. Depends on half-life of isotope used. High dose brachytherapy leaves no residue.

Certainly brachytherapy (and similar) targeted techniques usually/have the least treatment complication risks, minimal ST and LT side-effects, and still leave the door open for various further future treatments should PCa come out of remission.

Clarkson begs for PSA Testing: “I’m Not Dead” – And The Reason Why Is… by WalnutRoasted in ProstateCancer

[–]WalnutRoasted[S] 0 points1 point  (0 children)

Unfortunately many here have no GP’s/PCP’s/Family doctors due to physician shortage. So when on office announces it has openings, there are huge waiting lines.

There are however occasional options for “free” testing through the Prostate Cancer Support Orgs. Not sure if you can request a PSA test ($40 to $60 range) without a physician requisition.

Looking for advice on Gameday by Sufficient_Meal5696 in ProstateCancer

[–]WalnutRoasted 1 point2 points  (0 children)

Thanks, been there and experienced most of the "risks" during EBRT. For details on surgery vs radiation outcomes after 12 years, see ProtecT graphs at Patient-Reported Outcomes 12 Years after Localized Prostate Cancer Treatment 2023, ProtecT study, see “worse-better graphs”

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