Diagnosed with prostate cancer, where to go now in this moment?
Hello , All new to this I was diagnosed prostate cancer a few months ago after having a PSA test at 20.1 3 yrs before that PSA 4.5 in 2023. what a shock was that never in my family's history was no prostate cancer. I went through an MRI which didn't show much then came outpatient surgery for biopsy that came back 6 spots on my prostate. Gleason score 3+4=7 . Had to get after that an PET test to see if the cancer spread outside my prostate but no it didn't. My Urologist had two options for me Radiation or Surgery and at this time I find myself in a bind. Any advice ?
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3+4 is not a bad Gleason score. They told me mine was a 3+4, After surgery, they said it was actually a 4+3. Many people in this forum have found their PSA to be 4+4 or 4+5 after surgery even though they started with a low number. If you get radiation, you never really know what your Gleason score was.
For a 3+4 you have a relatively high PSA. Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.
Frequently a person with a 3+4 would not have a pet test, But your PSA is probably the reason they did it.
It might make sense for you to get a decipher score. I can give you an idea about how aggressive it actually is and whether a reoccurrence is possible in the next 5 to 10 years.
You don’t mention how old you are and that really is a factor in the surgery versus radiation decision.
Five sessions of SBRT radiation would work quite well with what you’ve been diagnosed with.
Cancer other than prostate cancer can point to a genetic problem. On my mother side, her father died of pancreatic cancer, and both sisters had breast cancer that she had nothing. She did give me BRCA2, however, a genetic problem Which never caused her problems.
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11 ReactionsWelcome to the club. Today I go in for my CT simulation. Followed by 44 sessions of radiation treatment. Funny thing is it's not the cancer that scares me, it's holding my bladder after drinking 30 ounces of water. Good luck. You got this.
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4 Reactions@hammer101 hi, just curious how your decision making would be influenced if nerve sparing prostatectomy were not a possibility or only partially possible? What % was the pattern 4 in your diagnosis?
I want to reply to this because my journey (marathon not a sprint) started in April of this year. I will start SBRT first week of November. It is a shock, it is overwhelming at first. I want to start by saying, this forum is a great place to find information and ask questions. There are a couple of folks on here who are very knowledgeable. I'm not trying to promote anyone but @jeffmarc and @heavyphil provide a lot of valuable information and insight. I also would say that PCRI.ORG is a free place with a lot of information that is easily consumable.
My job is working with data and OMG is there a lot of data on Prostate Cancer. I used AI - specifically ChatGPT and was able to download any test results and ask what does this mean? I was able to ask what options were available, why would that happen, what questions should I ask the surgeon, what questions should I ask the Radiologist. What answers should I expect and what follow up question should I be ready with. I wasn't trying to use ChatGPT as a doctor but as a sounding board, answering any of the questions I might have had and trying to formulate them into a meaningful list of questions for the doctors I was going to communicate with on this journey.
The one thing I've notices since I joined this group in July (that was after my visit to Mayo Clinic in Rochester) is that there are a lot of differences with Prostate Cancer, there are a lot of recommendations, you can be overwhelmed with all of the information. My diagnosis is very similar to the one you posted. I feel blessed in a lot of different ways, the first is the time we live in where there are all of these options (both good and bad having so many).
I guess my rambling here is to say, stay positive, stay informed, be your own advocate, identify what's important to you and make sure that the doctors are part of your "team" and you're not just a patient to them. Might be easier said than done but if it isn't working with your doctor, don't be afraid to get a second opinion or switch.
The city I live in has two fairly large medical groups all with great doctors. However after my MRI I chose to go to a Cancer COE (Mayo), I informed my local urologist and she was very supportive of doing that. My thought on this is someone who sees a 1,000 cases and specializes in it was better than someone who sees a 100 cases and also is supporting many other issues besides this. Not knocking my local person I just wanted to go to a more "specialized" group.
Good luck in your journey and stay positive!
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3 ReactionsWhen I was diagnosed with PC (Gleason 4/3), I put together my life goals to guide my treatment decision. Based on these goals, surgery was an obvious choice for me. Removal of the prostate is the only treatment that removes all known/unknown cancer within the prostate & seminal vesicles. Just as important to me, a radical prostatectomy allows for a complete physical pathology to be performed and margins to be defined. Thus, giving me the best information for treatment going forward. My number one goal was to preserve my life. Number two goal was to have 30+ years of cancer free life to spend with my wife, son, friends, and family. Erectile function was a want, but certainly not a need going forward - I was 55 years old, and for me there was so much to life outside of erectile function. Continence was a very high want, but also not an absolute need. Even though my "wants" were not a defined "need", I was going to do everything possible to minimize the potential side effects of a radical prostatectomy. I did research to find the best possible center of excellent for prostate surgery, then did research to find the best surgeon at that center of excellence. I did not want the department head, the best author, or the best instructor. I wanted the best surgeon that has performed thousands of successful robotic radical prostatectomies. That was Mayo-Rochester and Dr. Igor Frank.
I apologize for the long answer, but wanted to give you the context on my decision making. Based on my life goals going forward, if nerve sparing was unavailable, this would not have changed my decision to go with a radical prostatectomy. Thankfully, if a man does the research to find the best possible center of excellent & doctor available to him, and then acts on that information, he will get the best possible outcome. Obviously, there are other factors - Age, health, weight, physical shape, willingness to do pre & post physical therapy, etc... However, my view was to control those factors that I could.
Have a great day and best of luck going forward.
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8 ReactionsMine wasn't much different although my PSA was 9 but had kept rising over 2 years. My Dad had this, so I knew I had to do something. I decided to go the radiation route 3 years ago when I was 63. The only side effects were loss of energy and peeing quite often (Flomax was prescribed). The peeing part stopped after 2 months and still waiting on the energy. I had 30 rounds that did the job. Ever since then I have PSA checked every 3 or 6 months. The results have come back undetectable which I am so happy to read, and my Urologist tells me this is the best outcome I could want. Best of luck to you on your decision!
Hello I am 75 y.o. Gleason 3+4 I had both surgery and radiation. They each have had some troublesome side effects for me.
Surgey-Erections never returned and leakage causing me to wear pads.
Radiation has caused the biggest problem - Radiation proctitus (bleeding from the colon and bladder. (both finally seem to be under control) I had to be hospitalized several times. I currently am waiting to get a byopsy of my liver as a growth the size of an orange has shown up on imaging. I will soon know if it is cancer and if it began in the liver or came from the prostate cancer(apparently that is very rare) In the back of my mind I also wonder if radiation played a role.
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2 Reactions@brianmcl, how long has it been since you had radiation?
I had 39 radiation treatments in 2024. Drs told me they normally don't see
radiation proctitis that soon after radiation.
*Brian.*
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1 Reaction@brianmcl
I work with a lot of people that have had radiation. Frequently, the proctitis starts within three or four sessions with somebody that’s having less than 30 sessions. It’s usually very minor at that point, But burning and low flow are common problems that Flomax Is prescribed for.
With as many sessions as you had The chance of proctitis is lower because less radiation was used each time. I had about the same number of sessions 12 years ago and never had any Proctitis issues.
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