I’m not overly concerned about levels. I just got my second post op blood test and it was identical, .0124, to the first. I thought that a bit weird but whatever. I’m still using pads but things seem to be marginally better. I’m really lazy about Kegels.
A bit tangential but I still haven’t met my surgeon. Not even on Zoom. . First follow up was a phone call with his APN. Second follow up was a call with another doc who swore that the surgeon actually exists. Next follow up was another call with a different doc. This is at Temple in Philly and it is a teaching hospital and I’m fine with everything. The most recent doc said his father had the operation and his diagnosis/pathology was almost exactly the same as mine and he’s doing great. So, there’s that.
Just joining the club: I do not have much real information at this time, but I had a biopsy Tuesday and just got a call from my Urologist that I have tested positive for Prostate Cancer. I am waiting for the clinic to call me to set up a PSMA scan and once that is done I will sit down with the Urologist to formulate what our plan is going forward.
More detailed info: In February my blood work for my routine physical showed my PSA at 11. My PCP sent me to a Urologist who, after an office exam, sent me for an MRI. I had my biopsy four days ago. My Gleason score is 9 and now she set me up for the PMSA scan. I should get the time and date for that on Monday and my Urologist says the she will meet with me within a couple of days once the results are in.
Welcome, and sorry this has befallen you. I’m sure you’re getting up to speed on a lot of things with this, and hopefully this thread can help in some small way. I’m currently in my seventh year of prostate cancer, and there’s a lot of ups and downs and complexities to absorb. Gleason 9 is not a good look, but hopefully it’s contained and not spread. Please let us know; you’ll be in my thoughts.
Had you been getting annual blood work done? My doc scared the hell out of me and I get my blood tested every April to get my PSA number among other things.
Gentlemen of the Dope, get your screening done every year.
longhair75 - Its safe bet surgery is in your near future. With any luck, pathology will show that its confined to the prostate. My biopsy showed it was in the adipose and post-op pathology showed it in the margins but not lymph nodes. I found this thread to be useful, especially the shared experiences. One thing I saw time and again was that the skill of your surgeon is very important. Shop around. Travel across the country, if necessary. Mine is supposed to be one of the best anywhere. There is also a doc in NYC who is very highly regarded. I don’t recall his name but he has videos on YouTube.
I just passed my one year anniversary of having the surgery. I still have stress incontinence and am using those thin pads. One doc said that after one year, things are pretty well settled in that department. I’ve heard from others that things can improve up until two years. I have myself to blame for not doing pelvic floor exercises. The pads are a bit annoying but tolerable. PSA level remains very low (.0124) but its not 0. The last test the lab did the wrong test - standard PSA vs ultra sensitive but I’m having the correct one done as soon as they mail me a new order.
My father was diagnosed in 2011. He was in his early 70s. Gleason score of 8.
He rather overweight, and had several previous surgeries in the general area from a handful of accidents. His surgery was tricky, even done robotically, because of the amount of fat and scar tissue.
He did end up with nerve damage causing incontinence, and ended up having an artificial sphincter installed.
He’s still alive and kicking today. Other than some inconvenience, the only time it’s been a real issue is when he was hospitalized for something else and we couldn’t convince the nursing staff that they can’t just cath him the way they do most patients.
Best of luck with your situation - there are lots of people in this thread who will be happy to lend their advice, help you understand what things mean, or just be a kind ear.
They were tracking my PSA rising for a while. When it hit 4.0, five years ago, they did an MRI and a diagnostic. They found cancer, but happily it was still early. I scienced the hell out of it, and chose brachytherapy, which is placing radioactive seeds in your prostate. Luckily there was an expert at this procedure nearby. I got it done, outpatient, and now five years later my PSA is 0.1, having dropped steadily since, and I’m in better shape in all respects than I was before. So prostate cancer doesn’t have to be the end of the world.
Good luck, research all your options, and try to stay positive. It is scary, I know.
I don’t have prostate cancer though I do have BPH and we’re watching my PSA carefully. My Dad ended up with full-up prostate cancer, had an -ectomy as was standard in those days, but something else killed him long before the residual PC had a chance to.
I did spend 25 years dealing with late my wife’s breast cancer. And caring for her throughout. So I know a wee bit about dealing with dread disease and putting up with the shit it causes.
Yep, 25 years from diagnosis to death from a disease where that longevity is kinda rare. Most of those years were just fine. Some were kinda difficult. She was still having (circumscribed) fun a month before she died.
@LH75: you have a shitty new hobby for a couple of years. That’s almost, but not quite, a given. All the rest after that is down to your attitude and a certain amount of luck.
Scary shit for sure, and feel free to vent and ask questions and we’ll do our collective best for you. But if you now think the worthwhile part of your life is over, well, you’re a) probably wrong, and b) probably making your challenge worse, not better.
Positive thinking will not cure cancer, not even a little bit. Any idea to the contrary is pure woo. But …
Negative thinking can inhibit enjoying the remaining ride you have on Earth. And materially shorten it. IMO/IME, it’s better to avoid that unforced error. Hard for certain personalities, including my own. But a worthwhile endeavor nonetheless. What else are you going to do with your free time?
Once again, thank you all. I should hear tomorrow about when the PSMA Scan will take place, so as of now the info I have is incomplete. It is tough to figure the way ahead with out all of the facts. I am going to be 71 in a couple of months but I am by no means ready to give up and cash in my chips. I plan to fight.
You already made it through the biopsy, which was the worst part of my experience. Well ok, surgery wasn’t much fun either, but you get a lot more sympathy for that part.
One of the hardest parts of the journey was the lack of a clear-cut treatment plan. There are a lot of options (including doing nothing), each with pros and cons. I wanted someone to tell me “this is the best approach,” but that typically doesn’t happen. Best you can do is gather as much info as you can, make an informed decision, and don’t second-guess yourself.
Obviously, there is only so much research you can do yourself, but you owe it to yourself to be as informed as possible (which includes filtering out various levels of woo).
When I was diagnosed fifteen years ago, the therapies boiled down to surgery (conventional or robotic), radiation and chemo. I ruled out chemo right off the bat — I already had the hair loss, but nausea didn’t appeal to me — and was seriously considering radiation because of the supposedly milder side effects. Then I dug deeper and found that urinary incontinence and ED were nearly as prevalent as they were with surgery, plus the added bonus of potential anal/rectal burning and fecal incontinence. That swung the needle over to surgery (robotic), and while the recovery was unpleasant I don’t regret the choice at all.
Disclaimer: this is only one person’s experience, and fifteen years old at that. Be sure to get all the options available, then you can do an informed evaluation.
As I’ve said before: we’ve gotten through this, and you will too. Especially since you’re determined to fight it (at least half the battle).
It’s all vague probabilities. But for a single individual, probabilities are almost moot. Almost. If you could have cancer 100 times and treat you differently each time, we’d start to get an outline of your personal statistics. But we won’t / can’t do that. You are a fresh experiment with an n of 1 and no control arm. So is each other patient at that clinic and every clinic.
The other experience you’re about to have is alternating extreme urgency for the next test or treatment followed by day, weeks, or months of waiting for evidence of how it worked, or just waiting for the bureaucratic engine to approve the next step. You’re sitting there thinking your house is on fire (because it is), and they’re waiting 3 weeks for insurance approval to make a test that will inform a treatment decision (once the doc is available to evaluate it) for some treatment plan that will start 4 weeks later when they have an appointment available to conduct the planning session, followed by a 3 week delay until treatment start. Which will take 2 months and then 3 months after that we’ll be able to see how it worked. Gaahh!
This is normal, as is the induced stress it causes. Biology, both the healing kind and the evil cancerous kind, proceeds at a very stately pace. (At least as long as you can breath; things get far more urgent if you can’t. ) But otherwise, just get used to the idea that any given treatment won’t be proven conclusively useful or useless until months have passed, not minutes. That was exceedingly difficult for both late wife & I.
There will be administrative hurry-up-and-wait. Figuring out what is inevitable and what is egregious abuse by lazy bureaucrats at your clinic, hospital, and/or insurance company will be hard at first.
Best wishes to all of those who have dealt with / are dealing with this.
My father was diagnosed at about age 72, shortly after he retired. It ultimately took his life at age 75; the doctors had said “oh, you won’t die FROM this, you’ll die WITH it”. Earlier, more aggressive treatment might have had a different outcome (or maybe not).
My oldest brother was diagnosed, 2ish years back (at about age 68). Likely at an earlier stage than Dad, since screening / monitoring has improved. His doctors were inclined to take the same approach but when reminded of the family history, treated it more aggressively (he opted for surgery). I do not know what lingering side effects he has had but he hasn’t shared details and I don’t exactly like to ask! He certainly has ongoing monitoring but as far as we know, it’s considered cured.
Meanwhile my post surgery (6 years!) PSA has climbed to .10 this month. The NP is making noises about referring me to radiation oncology for treatment, something I’m not all that excited about given radiation side effects. They’d previously said .20 was the gating factor for referral. I’m going to watch it for a few more 3 mo tests to see what’s what.
Honestly, I don’t know why .10 is an interesting number. I’ve been as high as .08 and in January was .04. I begin to suspect the test error bars are enormous.
) But otherwise, just get used to the idea that any given treatment won’t be proven conclusively useful or useless until months have passed, not minutes. That was exceedingly difficult for both late wife & I.