I posted back in late 2023 that I was diagnosed with prostate cancer. Unfortunately, while my first biopsy was negative for malignancy (all benign), my follow up this month has been a tad worse with 10 out of 15 needle biopsy's showing Prostatic Adenocarcinoma with 5 being benign. Four of the bad samples were 50% or greater cancer content.So, it looks like I go from monitor to active treatment. My options are surgery to remove the prostate, or radiation treatment with hormone (Testosterone) suppression treatment.
I am currently reading "Dr. Patric Walsh's Guide to Surviving Prostate Cancer".
Anyone else who has gone through this have any advise?
For those of you who are over 40, my advise is:
Watch your PSA. An increase in the baseline number is a strong indicator of either prostate cancer or non-cancerous enlargement of the prostate. There are tests to differentiate.
Watch for tiredness (and shortness of breath when you have not had issues in the past) and lower back pain that is centrally located just above the hips.
I am currently reading "Dr. Patric Walsh's Guide to Surviving Prostate Cancer".
Anyone else who has gone through this have any advise?
For those of you who are over 40, my advise is:
Watch your PSA. An increase in the baseline number is a strong indicator of either prostate cancer or non-cancerous enlargement of the prostate. There are tests to differentiate.
Watch for tiredness (and shortness of breath when you have not had issues in the past) and lower back pain that is centrally located just above the hips.
Test often, test early, TheGimp was right. I wish I had not listened to medical advise to not test. There is a new urine test on the horizon that will fairly accurately determine if more definitive action is warranted. Then we can all P on prostate cancer.
Take care of yourselves gents, more than 90% of men eventually have some stage of PC.
Best to all
Take care of yourselves gents, more than 90% of men eventually have some stage of PC.
Best to all
I had mine removed in 2018, as it was basically a solid tumor. No evidence that there was any spread, but after a couple of years, my PSA started to ramp up. So now I go on hormone therapy every fall to drive my testosterone down to nothing. This past winter has been my third cycle. It works, but the ensuing hot flashes and night sweats are a real PITA. Not to mention the lack of energy and mood swings. You'll also loose muscle mass, strength and endurance as well when on the hormones.
I would keep your prostate and try some of the therapy before having it removed, unless your Urologist says it's potentially life threatening.
jeff
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I fiddled around initially, but after the biopsy and the Urologist telling me straight up "You got cancer", I just had the whole things taken, figuring while it's still contained within that specific organ. Post analysis revealed it was in appx one part of one quadrant, all tests since (about 5 years) comes back "PSA undetectable". So I am very lucky. I also feel I made the right decision - for me.
My Urologist is very good at what he does, knows exactly what he's doing and everything's back to normal within reason. I'd make some remark about an idea I'd have, to which I hear "Want to spend the rest of your life in a diaper?" Which would quickly shut my mouth. So pick a good Urologist is good advice; my former one quit his practice and I found this guy in a panic looking on line. Former military doc in private practice.
The surgery and hospital recovery as I recall were pretty painless, but I have to believe it's a serious matter and could have been a real haymaker for my body to endure. Havent been quite the same since, which I notice in things like my body just doesnt really want to "train up this year" into distances I could easily jog 10 years ago. Unsure if there's any connection and it may be "just getting old"...
I did survive the cvid epi and even a personal bout with the infection; who knows what that last boost did to me, when I passed out twice at my workbench the evening after and maybe 1, 1.5 years later did a course of the paxlovid to get through my finally catching it. So I've enough "life force" still in me to surmount that punch in the face.
Currently I'm fighting a summer cold and it's giving me a real good run for my money; 2 weeks in and I'm not yet on top of it. Chest xray, antibiotic, sit in bed all day, as soon as I expend some energy, sneezing starts up again... I like to attend an open mic on Friday, play my guitar and sing 3 songs, but have missed the last two, including tonight, after attending weekly for all this year so far.
I had it removed almost a year ago. It was discovered about a year before that, and I was being monitored and was advised not to do anything, but after thinking/reading/talking to patients and doctors, I decided I wanted to do something. It was hard to decide between the surgery or radiation, seems like many recommended the treatment they had themselves. But I think I heard more horror stories about problems after surgery though.. If it's an early stage they remove less tissue around the prostate, and the side effects should be milder. For me it turned out to have spread almost to the whole prostate when they got it out, biopsy done earlier showed only 3/12, so it had grown fairly quick even if PSA was not that high (going from abt 4-6 during that period). They told me weight and age is a factor for surgery, I'm just over 50 and skinny, but had I been 70 and over weight, I would have gone for radiation & hormone treatment (as my father). No major issues for me after surgery, but there is always the tension waiting for the result of the latest PSA test.
I was diagnosed in 2019 following a routine check. Given my age, the fact that it hadn't spread, I opted for radical surgery to buy some peace of mind. Unfortunately, the operation was delayed due to the COVID, and a year later when I finally went to the operation room, the restarting conditions were poor: the supporting team was not very competent, and even attaching a catheter was problematic.
As a result, I had many post-op complications, some of which still bug me today.
Yet, I was treated in one of the best institutions of Belgium, with all the latest equipment and top surgeons.
Two years later, my PSA climbed again, despite all the post-op checks on my lymph nodes being OK.
I had to undergo two runs of radiotherapy. They were mostly transparent, no side effect or discomfort.
Now, I seem to be clean, but I still suffer from (relatively mild) consequences of the half-botched operation.
The decisions have to be taken with extreme care, given the adverse possibilities outcomes
As a result, I had many post-op complications, some of which still bug me today.
Yet, I was treated in one of the best institutions of Belgium, with all the latest equipment and top surgeons.
Two years later, my PSA climbed again, despite all the post-op checks on my lymph nodes being OK.
I had to undergo two runs of radiotherapy. They were mostly transparent, no side effect or discomfort.
Now, I seem to be clean, but I still suffer from (relatively mild) consequences of the half-botched operation.
The decisions have to be taken with extreme care, given the adverse possibilities outcomes
I was diagnosed last December at 73 years old, 1 of 10 samples showed a Gleason 3/4 rating. I am currently in the watch my PSA levels for a bit phase. I have been told that radiation treatments are more than 95% effective. I am looking at the Proton Gun radiation at Emery University Hospital, more controllable than the normal radiation, supposed to have less side effects and just as effective. It's always something.
Mine was Gleason 9, the exception to the rule, but my Dad died of it at age 53, so mine was clearly genetic. Not a candidate for watchful waiting with Gleason 9 disease (it only goes to 10), but full disclosure, my wife is the co-author of the book in post #1, and Pat Walsh is a family friend--they were watching my PSA like a hawk for years. Mine was diagnosed early by the PSA velocity--it shot up too quickly, but was never out of the normal range. When they both told me I needed an MRI and a biopsy, I thought at first they were crazy.
My wife also writes a lot of the patient information at the Prostate Cancer Foundation (https://www.pcf.org/patient-resources/). Dr. Walsh does not operate any more, so I had Dr. Mo Allaf do my robotic radical prostatectomy at Johns Hopkins, who is now the Chief of Urology and did the first urologic robotic surgeries at Hopkins.
Your treatment needs to be tailored to the disease, and all of the nonsurgical options are better than ever. For me, surgery was the only option, and I have no regrets 4 1/2 years later with a completely undetectable PSA and a normal life. There is some rehabilitation that has to happen after that surgery to get all of the function back that wouldn't be needed with the other treatments.
My recommendation would be to at least get a second opinion from an urology center of excellence before you do anything if there is any doubt. If you are going to get surgery, get the best surgeon you possibly can. Most community urologists do not do enough of this surgery to be good at it (there are some, but select carefully), and the potential side effects are impotence and urinary incontinence.
I think their book is a great resource, and it is available in most libraries, so you shouldn't need to buy a copy to get the information.
My wife also writes a lot of the patient information at the Prostate Cancer Foundation (https://www.pcf.org/patient-resources/). Dr. Walsh does not operate any more, so I had Dr. Mo Allaf do my robotic radical prostatectomy at Johns Hopkins, who is now the Chief of Urology and did the first urologic robotic surgeries at Hopkins.
Your treatment needs to be tailored to the disease, and all of the nonsurgical options are better than ever. For me, surgery was the only option, and I have no regrets 4 1/2 years later with a completely undetectable PSA and a normal life. There is some rehabilitation that has to happen after that surgery to get all of the function back that wouldn't be needed with the other treatments.
My recommendation would be to at least get a second opinion from an urology center of excellence before you do anything if there is any doubt. If you are going to get surgery, get the best surgeon you possibly can. Most community urologists do not do enough of this surgery to be good at it (there are some, but select carefully), and the potential side effects are impotence and urinary incontinence.
I think their book is a great resource, and it is available in most libraries, so you shouldn't need to buy a copy to get the information.
I got my copy off Amazon for $16 and change. At that price, it is worth having my own copy to mark up as I wish.
Kudos to your wife. Great job on the book.
My Gleason score according to my doctor is 3+4=7, however I see most of my biopsy samples are 4+3=7, so I may be t2b intermediate, GradeGroup2 or possibly GG3. Since samples are from both sides of my prostate, I suspect GG3.
The higher the GG number, the more aggressive/established the cancer is.
I am currently waiting on a PET scan to look for possibility it has spread to my lymph nodes.
Kudos to your wife. Great job on the book.
My Gleason score according to my doctor is 3+4=7, however I see most of my biopsy samples are 4+3=7, so I may be t2b intermediate, GradeGroup2 or possibly GG3. Since samples are from both sides of my prostate, I suspect GG3.
The higher the GG number, the more aggressive/established the cancer is.
I am currently waiting on a PET scan to look for possibility it has spread to my lymph nodes.
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I’m going for a biopsy on July 2nd. My PSA was around 5 or 6, but they did a test that determines how aggressive any prostate cancer would be, and I was in the highest category. I’m 65 and have only a slightly weak stream, so I’m cautiously optimistic. However, I’ll know more after my biopsy. All the urologists in my neck of the woods have very long waiting times to get an appointment, so I’ll see what my biopsy shows and go from there.
I can empathize with the decisions you, and everyone else who gets the news that they have prostate cancer, are having to make.
PSMA PET scans are a game changer. Prior to PSMA PET scans all you had to go by was a biopsy and MRI which were not very accurate. I had a second opinion done at a major university and they downgraded both the biopsy Gleason score and MRI PIRAD from the original grading. Still had cancer just not so severe. Surgery or radiation, go to a major cancer center who do a lot of them. Travel if you must. Both have their own side effects, and no one escapes them completely so be prepared. Many factors need to be considered for each individual.
In 2018 after a number of years watching, my PSA rose to 8.5 and a year later I opted for surgery. The pathology came back as 3+3 with 5% grade 4. Better than the diagnosis, Although I had a small positive margin. It will be 5 years post-surgery here in a few months and if my PSA remains undetectable things look good.
Wishing you the best
PSMA PET scans are a game changer. Prior to PSMA PET scans all you had to go by was a biopsy and MRI which were not very accurate. I had a second opinion done at a major university and they downgraded both the biopsy Gleason score and MRI PIRAD from the original grading. Still had cancer just not so severe. Surgery or radiation, go to a major cancer center who do a lot of them. Travel if you must. Both have their own side effects, and no one escapes them completely so be prepared. Many factors need to be considered for each individual.
In 2018 after a number of years watching, my PSA rose to 8.5 and a year later I opted for surgery. The pathology came back as 3+3 with 5% grade 4. Better than the diagnosis, Although I had a small positive margin. It will be 5 years post-surgery here in a few months and if my PSA remains undetectable things look good.
Wishing you the best
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