Looking for advice

[Scorpio53]

Hi

I have a PSA of 5.5 and a Gleason score of 4+3 and am looking for advice about treatment options. I was dignosed about 5 months ago. Would like to better understand views on surgery versus other treatment optins.

Best

[Tall_Allen]

Read this:

prostatecancer.news/2018/10...

Also, consider this clinical trial:

clinicaltrials.gov/study/NC...

[Scorpio53 in reply to Tall_Allen]

Thank you. I will check into this.

[Magnus1964]

Ask you doctor if you are a candidate for cryosurgery.

My one piece of advice is put of radiation as long as possible. The long term effects are not pleasant.

[Scorpio53 in reply to Magnus1964]

Thank you. I will ask.

[London441 in reply to Magnus1964]

Long term effects of radiation are zero for many men. Surgery fails statistically 30% of the time, which includes all the men with lesser disease than you, therefore necessitating radiation later anyway. ED extremely common with surgery also, if that matters to you.

Know your disease specifically, especially any spread whatsoever beyond the capsule. 4+3 is only one metric.

[Magnus1964 in reply to London441]

When I speak of long term side effects I'm talking about10 years out. Difficulty urinating, TURs, scaring, leaking, etc. Not fun.

[London441 in reply to Magnus1964]

The problem is to say 'avoid radiation as long as possible because the long term effects are not pleasant' presents as a statement of fact rather than your personal experience. If you're going to present it as fact, supply fact- not personal anecdote.

[Justfor_ in reply to London441]

Present rebuttal facts, if you can, so that all countries in the world will revise their work hazard regulations regarding radiation.

[London441 in reply to Justfor_]

Can’t reliably do that. That’s why I said ‘many’ men have zero long term effects. Certainly not all.

This is because the ‘facts’ you seek have completely changed due to major advances in radiation technology in the last 10-15 years or so. Many areas lag behind even that.

For example, a typical report from NIH in 2016 cited a study with a hazard ratio of between 1.5 and 3 for side effects after radiation, and says they remain elevated years later. However, the men studied received radiation in 1997-2012. Long term side effects aren’t known for, well, long term. Since delivery systems are so much better targeted, accurately assessing risk is guesswork for now, but you can be pretty sure it’s a hell of a lot less than in 1997.

Radiation isn’t mother’s milk, and I’m not pretending it is. The question is whether you would trust, as so many men do, that radical prostatectomy will ‘get it all’. It’s not a good bet, and if it doesn’t you need radiation anyway.

[Justfor_ in reply to London441]

"radical prostatectomy will ‘get it all"

Sales argument (surgeons) to silly buyers (patients). Since nobody knows what created cancer in the first place, getting it all or part doesn't warranty it will end there. It's like a basket of fruits where some of them are rotten. Disposing of them will help the rest delay rot, but ultimately they will. There is no "cure" for cancer, only ways to slow it down. Irradiation should be the last line of defense, IMO.

[London441 in reply to Justfor_]

I don’t see radiation as a ‘last line’ of defense, since most men will have already done it when actual last lines are attempted.

I do think it’s the best option for curative intent, especially when combined with ADT and abiraterone. Despite the chances of long term side effects. Once the disease has prevailed, it’s of course a questionable choice.

To each his own. I chose to take my chances with side effects in favor of my best attempt to eradicate.

[Magnus1964 in reply to London441]

I am stating this from experience. I have been suffering those effects for years now. I am stating that younger men should hold off on radiation if possible. The long term effects did not kick in until eight years after the radiation, and they are not pleasant.

[London441 in reply to Magnus1964]

I understand it has been your experience and I’m sorry for what you’ve been through.

However, It still doesn’t mean radiation should be avoided by all ‘younger’ men, whatever that means. I know men who have had no long term affects after 10-20 years. I chose it at 63 after RP anticipating its failure, such was my adverse pathology.

If it works long term, it will surely have been worth it. So far, after 4 years, it has. If not, I’ll still be glad I didn’t leave it untried.

[Magnus1964 in reply to London441]

Everyone's cancer is different and everyone responds differently to treatment. That said my point is if you have been diagnosed at a young age, and there are other options for your particular situation: i. e. No mets, etc, then try to postpone radiation for as long as possible. If it is the best option, so be it. There are situations that present better options, ADT drugs, cryosurgery, etc.

[London441 in reply to Magnus1964]

It's best we agree to disagree. I've been around this disease for a while now, if not as long as you, and over and over again I see missed opportunities in exactly the demographic you mention-younger men-who opt for less invasive procedures only to need further treatment soon after. It's human nature to take the easier path, but it is often not the best.

Your first shot is your best shot, and being younger for me was an incentive to be more aggressive, not less.

Fitness, overall health and strength are also critical metrics in making treatment decisions. As an athlete I admittedly had an advantage there.

When you say ADT drugs are a better option than radiation I wonder what you are thinking. ADT is harder on the body and mind long term than any of the other treatments. I think that is fairly obvious. ADT is very effective, often for years, but it also accelerates aging. Additionally, for those with co morbidities of any kind, obesity, diabetes, high blood pressure, cognitive difficulties and especially CV issues ADT is gas on any and all of these fires.

I wanted a remission without ADT or any other drugs for as long as possible, which is clearly optimal. Modern radiation was an important part of that effort. A positive lymph node is certainly not equivalent to 'no mets'. It's more like finding one cockroach in your kitchen.

If I have a recurrence and have to get back on drugs so be it, but my MO at a center of excellence told me I had a 50% odds of a cure if I took additional treatment (of which radiation was the feature), since my RP showed SVI and a positive node. If I declined he estimated I would be dead in 10 years. His opinion was based on the countless men he'd known and/or treated who avoided radiation after failed RP and had indeed died.

I preferred ADT as synergistic with radiation rather than as treatment outright. I know I was very fortunate to have that as a viable option, having no known spread beyond the pelvis.

I could have refused radiation and rolled the dice with supplements, bicalutamide, or other ADT, AS etc etc. I took his advice. Time will tell, but I don't look past today.

[leach234 in reply to London441]

That’s not been my experience at all. Please provide your information source.

[Hidden in reply to London441]

I have to agree with London441. I didn't have an RP so I can't speak from experience there but have read a crap load of negative stories about it. I had IMRT radiation 4 years ago and so far have not had any negative side effects and have not heard of anyone else complain about side effects.

[Steve507]

You are wise to do your HW before choosing a treatment. At 60, I had an RP and 22 months later Radiotherapy. I was and still am my own best advocate and came to trust myself. I learned all I could to about my disease, meditated and ruminated for months before green lighting treatment.

Prostate disease is very idiosyncratic. My surgery was manageable and Radiotherapy even more so with minimal side effects 2.5 years later. but that was my experience.

Read read and read some more about your disease and your options....

Best

[Justfor_]

Think what suits you best:If you were to buy something VERY expensive would you surrender all your savings or get a bank loan? In the first case you are an RP candidate. You get all side effects upon the transaction. In the second case (RT) you will be paying back the loan (side effects) after the grace period for as long as you live, plus reccuring interest.

[sammie888]

Hi Scorpio, similar PSA to yours in 2018 was then on active surveillance till 2021 when treatment was advised, I never wanted to go down the radiation/brachytherapy route it seems there are many problems way down the line so I went with robotic surgery at the Christie in Manchester England, its a long job and times you think have I gone the right way, well I'm nearly 2 and 1/2 years in now and back to 99% good health, I was dry at 1 year and I'm starting to get life back in mans best friend not the best but good enough to do the job, I'm 71 years old and like yourself exercise regularly and have done most my life I never really stopped and ended up with 2 groin hernias because of the surgery but that,s an easy fix later, PSA is still undetectable so all,s good so far, I hope this helps and all the best to you.

[leach234]

I was a Gleason 8 with PSA of 5.2. Surgery 5 years ago. Now it’s like it never happened! Get yourself an experienced surgeon with lots of robotic surgeries under his/her belt!

[doc1947g]

I am 76 y.o. and was a Gleason (4+3=7) Grade 3.

Went on ADT 6 months (Lupron Depot) and VMAT-RT (3Gy X 20 fx =60Gy).

So far, everything is great 👍. No incontinence.

[Scorpio53 in reply to doc1947g]

Thank you . Will investigate.

[Gardenpests]

The 3+4 favors treatment rather than Active Surveillance. Sharing more diagnosis information may suggest a specific course of treatment. A 2nd opinion on my 2nd biopsy downgraded the Gleason to 3+3.

Comments on surgery? I was on AS for 2.5 years, during which I had an MRI fusion biopsy as well as 2 TRUS biopsies, 42 cores total. The last biopsy revealed quite a bit of 3+4. Both biopsies and MRI missed the extraprostatic extension as well as cancer the other picked up.

Nearly 3 years later, PSA remains undetectable. Aside from some erection shortening, I didn't suffer urinary or sexual side effects. pT3aN0.

In my opinion, for local cancer, having all the tissue available to the pathologist is a major advantage of surgery. Very little escapes this scrutiny. Although my cancer had begun to move beyond the prostate, it did not escape the scalpel's cut. Another advantage, is the option to use radiation later for missed cancer at the prostate bed, where it would be precluded with earlier radiation use. Finally, the PSA will quickly drop to undetectable, that's reassuring. If it doesn't then there is more cancer.

[Steve507]

In the last 15 years, side effects from radiation have become much less severe and frequent. hopkinsmedicine.org/health/...