Prostate Cancer - What’s You’re Experience

Had bladder cancer and the tumor was removed and a second TURBT confirmed the cancer wasn't in the bladder muscle. So that's on the back burner for now, the Urologist wants the prostate treated first before treating the bladder.

Met with a surgeon today at the Cleveland Clinic Hillcrest hospital and he does robotic prostate removal. The urologist suggested removing it and the surgeon impressed me with his skill. He has been involved with robotic surgery since 2000. Waiting for the surgery schedule department to call, will have surgery mid August. The robotic surgery is supposed to be easier in many ways including recovery.

My decision to have it removed because of the high grade cancer I have. It did not spread as per a PET scan. Don't want radiation and the hormone treatment after, would be on hormones for a year.

Let me know how you treated your prostate cancer and if it worked. Trying to sort through the what's going on with real life experiences. I know my journey through this will be different than everyone else's, Larry

I had an uncle who used the seeds for his prostate cancer. It eventually returned. When I found out I had prostate cancer it was a no brainer for me. Take it out! Robotic was the way I went as well. Recovery wasn't too bad, but I did have leakage for a period of time. Doctor said that was normal. Been about ten years or so since I had my surgery. PSA is still zero so I am happy.

Watched my psa numbers slowly creep up over years until I had a biopsy. Only had a slight amount in one of the 12 samples. Another year and a second biopsy. I had a couple more positives in the 12 samples so my urologist and I decided on radiation. That was 2 years ago and my psa's are still basically zero. The hot flashes were no fun and the urinary issues were bad but I am doing ok now and can sleep all night unless I drink too much decafe after dinner. Dumb part was I was sleeping all night right up to the radiation then my urination got weird. I'm 74. Good luck on your treatment.

I read an article today about Cyberknife???
The op had good result

PSA went up a point in one year which made my Doc concerned. He sent me to a urologist. I had a biopsy and it was in 15percent of the Gland, fairly aggressive as I remember. I talked to several docs including the seed implant Doc. I decided on the radical prostatectomy, robotic surgery. Fairly short recovery with very low PSA's ever since. Some leakage over time and some ED issues as well. A friend who passed away about eight months ago had prostate cancer at about the same time. He did radiation and had lots of issues. That was in 2009.

After many years of being diagnosed with benign prostate hyperplasia (BPH) my PSA suddenly rocketed skywards. A biopsy revealed that my BPH had suddenly changed to a stage four cancer. My urologist advised against surgery due to the extreme size of my prostate and that removal would most certainly result in suffering incontinence for the rest of my life, instead recommended hormone treatment followed by radiation. The idea of wearing a urinary bag for my remaining years was an anathema to me, so last year I followed his advice, underwent the treatment, and my PSA is now below actual measurement at 0.015.
The only down side is a slight increase in man boobs and some shrinkage in the lower regions...

My dad had prostate cancer and radiation treatments. He then developed bladder cancer which eventually got him. At 73, my PSA numbers remain low, but I keep a check on it. Hope it all works out well for you with minimal effects. Results from the various treatments just seem to vary so much across the board.

Thank you for all your replies so far. If you knew someone that had prostate cancer it and the treatment/results share it with us.

THIS FORUM is filled with the "good ole guys" and we are the ones that get the disease. *** It may help someone here make a good decision for a healthy future***.

My surgeon has been using robotics since 2000 and helped in development of the process, I consider him an expert. I admire his reputation and feel confident about the surgery.

My biopsy was 16 chunks of tissue from the prostate as normal. He said 9 of 13 of them showed cancer and the other 4 were not healthy tissue. Only 3 were healthy tissue. Big deciding reason to remove it. My head was spinning when told it wasn't simple cancer and a little radiation was the answer.

It's encouraging so far to see success after robotic radical prostatectomy, actually the successboth ways meaning radiation.

Had quadruple bypass 2 1/2 years ago and didn't want another major surgery, personally it sucks. But an easy recovery and the quality of life for me made now made it bearable. I hope this surgery finds the same results and in early November I will be pheasant hunting for 3 weekends with a big grin, Larry

iby said:

I read an article today about Cyberknife???
The op had good result

Click to expand...

Cyber knife is a gimmicky name for a concentrated and localized gamma beam treatment. It is useful for certain treatments. My wife had it for the inoperable aneurysms in her brain. She died about a year and a half later when one of them burst. Still, it was worth a shot.

I see my euro. MD couple times a year, he lasered much of my prostate away but I take meds which work ok. MY PSA's are 1-2 something but no cancer found yet that God. A friend of mine had prostate cancer years ago (10) caught early and he got the seeds. Saw him several months ago and he is still cancer free. His dog and mine were best buddies and we would walk them together.

Larry, My thoughts are with you. I got my biopsy results yesterday. Thankfully they were negative. I asked some of my friends that had prostate cancer, or knew of people that had it. Just in case I got bad news I would have a little more awareness. I was informed that one of my friends knew of someone that had surgery, and it went very badly. After hearing this I would most likely go with the chemotherapy. Just be aware of all you options befoe you decide what you will do.

Nov. of 2021 biopsy showed Gleason of 6 to 8. Dec. of 2021 CT Scan and Bone Scan negative. I was 75 at the time, long surgeries not a good idea after that age. Recommendation was: Space OAR, 3 gold markers in the prostate, 28 rounds of radiation and 3 shots of Lupron @ 6 months apart. The first 6 mo. shot of Lupron wasn't too bad, hot flashes mainly. The 6 mo. version was not available at my next scheduled shot so I got a 3 mo. version. WOW! very strong heart palpitations, leg cramps, brain fog and instability. I refused the next shot. Jan. 2025 my PSA was .17 and my Uro. said see you in a year!

20 year survivor of Prostate cancer. I was offered seeds or removal. I chose removal. My only long term issue is having to wear pads for leakage due to sneezing or lifting. I did all of the exercises. They didn't seem to take. My surgeon left the catheter in a bit longer than others I speak with and I believe that is the cause. I was only 45 when diagnosed. Caught during a routine physical. Good luck with what ever your choice.

I had my prostate removed with the robotic thing. I woke up in some massive pain and the doctor wouldn't give me anything but 5mg oxycodone. My body laughed at it! An aspirin would have worked just as well. I had my wife bring me some of my real pain pills for my back from the family doctor. That was the only place that showed any cancer so I said take it out. He said that's what he would've suggested. I go to the urologist for my 6 month appt. in July.

I've told my story before, but to contribute to the thread: In the spring of 2016 annual physical showed an increase in PSA from 5 to 11 since prior year. DRE revealed prostate was hard, indicating potential problem. Biopsy revealed Stage IV, Gleason 10. Inoperable as cancer had spread beyond prostate.

Analysis of tissue revealed adenocarcinoma — typical prostate cancer; what most people get — mixed with small cell cancer, which is more common for lung cancer, and highly aggressive. Happens somewhere around 2% of the time with prostate cancer, and is very often, usually at the stage mine was discovered, fatal.

Bone scan revealed cancer had not yet spread to bones.

The initial team of docs told me I was not gonna make it, so prepare for the worst. My wife and I did a lot of research, and sought second opinions. This led to our conclusion that what I needed was to be treated, via chemotherapy, with cisplatin and etoposide. I was in Japan at the time, and these agents were not approved for use on prostate cancer, and were only available for lung cancer.

At Japan's national cancer research hospital, we met a young woman oncologist who, when we explained what we had been told so far, and what we had learned from our own research, responded with, "Yes. I agree that is what you need, and I can get an exception for you from the government for us to treat you with it."

And she did. And here I am. (Also had hormone shots and seven weeks of radiation with an IMRT. About five or six months of treatment. Five years of monitoring CTs with imaging agent followed, along with ongoing regular PSA checks. Last PSA reading 0.08.)

My takeaways: 1) No one cares as much about it as you and your wife do. Do your research. If you don't like what you're hearing, keep looking. 2) Cancer treatment is getting better all the time. Progress is amazing. 3) Miracles do happen.

Keep the faith.

Good luck to you, and to anyone else with a cancer diagnosis.

Tom S. said:

Cyber knife is a gimmicky name for a concentrated and localized gamma beam treatment. It is useful for certain treatments. My wife had it for the inoperable aneurysms in her brain. She died about a year and a half later when one of them burst. Still, it was worth a shot.

Click to expand...

Tom, I am sorry to hear of your wife's experience.

In 2023 my wife, during an optional MRI brain scan, part of our annual physical in Japan, an option we took "just in case, was found to have some sort of 3 cm tumor in her brain. Doctors initially wanted to do a biopsy, but given its location, a biopsy was dangerous. She wrote to a doctor who has performed more than 6000 brain surgeries, asking for help.

Remarkably, he responded, called her up two days later, telling her to come in for various imaging tests. Looking at the results, he said he believed, based on a case he had a dozen years earlier, that it was hemangioma in her left sinus cavity, non cancerous, but dangerous in that as it grew it would impinge on her optic nerve among other problems.

The good news, he said, was that it did not require surgery, but could be treated with a cyber knife, a very precise form of radiation using a robot arm to aim the radiation to exact location and depth. He referred her to a colleague.

They made a sort of custom mask to hold my wife's head immobilized on a table while the cyber knife zapped her for twenty minutes a day for four days running. Totally painless. Follow up MRIs showed that the hemangioma has shrunk dramatically, and continues to do so.

She's fine now.

Our cyber knife experience was wonderful.

I had the surgery 19 years ago in Chicago by one of the leading surgeons in the country. My PSA is now 0.03. My cancer had spread outside the prostate. I get a check monthly from the VA due to my exposure to Agent Orange.

My PSA was 0.33 in my last test two weeks ago. I like .03 better but I'll take it. I go to doctors constantly, I get checked for bladder tumors (there was another thread on that subject) routinely, I get three physicals annually, I go to the dentist four times annually, I go to the pulmonologist once a year, and the gastroenterologist annually, also. I go to the ophthalmologist at least 4 times annually. I get chiropractic adjustments routinely.

WHAT!!??!! DO WHAT????!!!

Are you over fifty?

If you can afford it or your insurance will cover it, these are the things you must do. What is the old adage, "an ounce of prevention is worth a pound of cure?"

Bad things can happen to your body anytime, so getting it looked at by experts on a routine basis is required IMNSHO.

Wow.....I haven't used IMNSHO in a very long time - old Internet jargon when bandwidth was at a premium for "in my not so humble opinion". Makes me laugh.

And the foregoing doesn't mean I'm great at exercise or not overweight so, in light of such things, I go to doctors! You should as well.

ISCS Yoda, I started the thread on bladder cancer, my BCG treatments have been put off till I have a 6 week recovery from the prostate removal. The urethra/bladder connection has to heal.

My surgery is on July 29th, 2 days after returning from vacation on the 27th. Will get the pre surgery testing before we leave.

Remember, if you have blood in your urine contact a Doctor. It could be an early sign of cancer. If the blood goes away, still see a doctor. Larry

OK, I had a RRP about 14 years ago. Cancer in margins, nerves taken. PSA slowly creeping up to 0.3. PET scan found nothing but salvage radiation was recommended so a year ago I got that 5 days a week for I don't remember how long, but it was a bunch. The facility had cyber knife but the Doc said I wasn't a candidate for that as they needed to hit the whole "bed" where the prostate once resided. PSA is now .05. Lower would be nice. My brand new Uro asked if they zapped my associated lymph nodes also. I told him that not that I was aware of. We'll have to discuss that later. For me I think the RRP was the correct choice. Immediate follow-up radiation probably would have been good. I'm still plugging along.

The immediate after effects of the original RP were pretty common. Leaks were significant for several months. Leaks are still possible in physical stress or fatigue situations but not enough to warrant a pad. If I was a working plumber or other physical trade I'd need a pad. Having a sling put in would possibly address that issue. ED and associated symptoms are ongoing and permanent but there are options for treatment that work for us but would be less ideal for a younger single man.

If you want to talk you can PM and we can exchange phone numbers. You have my prayers.

Diagnosed in '20. Aggressive form they said. Was offered choice of surgery removal or radiation. Just happened to know two that had the surgery and two that had radiation, I chose the radiation route. MD Anderson Proton Center. Also had the Lupron.
39 treatments of radiation and Lupron for a total of 18 months. Forget how many shots. The last PSA was .01 and testosterone is back in the normal range.
This was during the China Virus Plandemic and they would not let anyone else in with me so I drove myself down there every treatment day which were during the week. Had to drink two bottles of water on the way because the bladder had to be at certain fullness for the treatments. Sometimes that was a struggle. The radiation did leave some burn on the hips but not bad.
The Lupron was not fun. It will change your mind from ass to grass and did shrink the junk somewhat but everything will return to normal.
The hotflashes were the worst for me. Sometimes four or five an hour. That was kind of crazy.
If you decide to do the proton radiation schedule early. Sometimes the machines have issues later in the day.
I wish you the best with whatever treatment you chose.

My Father in Law got it after he turned 70. Did the radiation treatments. He is 91 going on 92

I had prostate cancer - 7 Gleason score. Was treated with radiation and follow-up seeds. It's been 15 years and no cancer. That's the good news.

The bad news is that leakage and impotence are with me for the rest of my life. I'm 80 and seriously wonder if I would have been better off doing NOTHING. Age is definitely a key variable. A young man with a family to raise is much different than an old guy that doesn't have a lot of time left. I don't believe my cancer would have killed me.

Tom H.

I got the seed implants in January 2016. My PSA slowly went down. After about five years itt became undetectable. My GP does a PSA blood test once a year. No real complaints. I'm almost 77 now. If you had an enlarged prostate before any procedure, it ain't gonna get any better and might get a little worse.

I had been getting digitally checked for prostate cancer for years. I missed a year and needed an prescription refilled, she needed to see me to OK it so I went in to see the doctor that always checked me out. She gave me her handshake and didn't like the way it felt, checked my PSA which was at 25. I was only 53 so those numbers alarmed her, I had no indication I had a problem. She referred me to a highly recommended urologist who also gave me his handshake and gave her credit for her assumption that there was a problem. He recommended that I get a Gleason Score biopsy which came back a 9. According to him I had a virulent form of Prostate cancer that was still probably incased in the gland itself but in a rather short time period could metastasize somewhere else. This was twenty-two years ago, all that was available at the time was cryogenic treatment, radioactive seeding and radical removal. I asked him what his opinion was and he told me that as a surgeon he has removed hundreds if not a thousand and more. He told me that the problem with the other methods is that after they are completed and your PSA continues to rise there is no option for a surgeon to go in and remove the gland as everything in that area has been cooked. He then went on to say that with radical removal if the PSA continues to rise it has metastasized and taken up light housekeeping somewhere else, likely bone or lymph glands and that is when targeted radiation can be used. I had a good friend that had to go to L.A. a couple of times for targeted radiation to get the stray cells, it worked for him. After a couple days of talking things over with my wife and studying alternatives I elected to have it removed. After removal Oncology reported clean margins where the gland was cut out, which is a good sign that everything is still in the gland. As it turned out after about six months I had and have continued to have a 0.0 PSA twenty two years.
A friend of mine just had his prostate done in the latest, greatest method which basically cored out the interior of the gland, leaving him with the ability to get an erection which used to be the major downside of radical prostatectomy. Back when I had mine done my doctor told there were some surgeons that make an effort to avoid destroying the nerves that are commonly severed on removal. He told me that in his opinion anything other than the removal of the gland leaves open the possibility of leaving behind cancerous tissue.
I will say that having been a survivor for twenty two years I have had more than a dozen friends and people I know casually come down with prostate cancer and elect to have seeding or other methods. Few of them are alive today, enough time hasn't passed for my friend that had his cored out, although he said he still had a measurable PSA. I have one friend that is playing the watching and waiting game, he is ten years younger and I get that but for me life is more important than the ability to get an erection. There are downsides, like my inability to 100% control my urine and other issues in that area that limit my ability to travel extensively which is no loss to me because I don't care to travel.

I opted for radiation treatment. IIRC, it was 44 treatments in all, five times a week until it was done. That was about ten years ago. About five years ago, my PSA was in the undetectable range. No issues with ED or leakage.

There is a lot of good information here, if anyone needs some real life info, it's here. A lot better than searching the web and seeing %'s of good procedures or problems after whatever people decide how to treat their cancer.

Good luck to those that are diagnosed with prostate cancer and with your decision on treatment. Seems like either way could be mostly a smooth fix or problematic. I know the next couple years for me will be full of Dr visits for both bladder and prostate cancer. For my bladder I will get the initial 6 weekly treatments and more over the next 2 years. He will also be looking inside the bladder every 3 months, then every 6 months and hopefully yearly after time passes. Larry

Tom S. said:

Cyber knife is a gimmicky name for a concentrated and localized gamma beam treatment. It is useful for certain treatments. My wife had it for the inoperable aneurysms in her brain. She died about a year and a half later when one of them burst. Still, it was worth a shot.

Click to expand...

My FIL had that several years ago. Doctor recommended the gamma beam treatment. Said success rate was 90%.
Something went wrong with the treatment. (gamma beam machine partially missed the target) and a bunch of surrounding tissue was fried, and they didn't quite get all the cancer.
He got worse, and had diarrhea attacks 12 to 15 times a day. Pain got so bad that maximum doses of morphine weren't enough. Passed live tissue often. He was miserable and died a couple of years later.
I would shoot myself before I would suffer like he did.
He was 6' 3" tall and weighed 123 pounds when he died.
Not the typical results at all, but there is some risk.

Hope a few more people will share their stories, Larry