Recently Diagnosed PC

Hey Oscar, sorry to welcome you to our "club" . Check this forum and other forums, keep asking questions, educate yourself and advocate for yourself.
Check my profile for posts I have contributed.

Stay Strong Brother, you got this.

@oskarpr
Don't want to say welcome but you came to right forum for information. Most of us now have gone through the anxiety of picking what is best for us, getting the treatments, and now recovery.

As I have posted many times it is best to do your own research, then get second opinions from experts in fields. Regardless of which option you chose I would suggest getting a PSAMA, bone scan, and Decipher test. These test will fine tune your diagnosis and help you and your provider the best treatment for you.

I am 76, with heart failure but no restrictions. I did first consultation at Mayo Jacksonville and then second at UFPTI. I also had a bone scan, PSMA, and Decipher test done. All these tests helped me and my provider decide the best treatment for me. I chose 30 rounds of Pencil Beam Proton Radiation. MY PCP and I wanted to have the best chance of keeping damage to tissues and organs.

If you are conteplating RP then these radiation option are not a factor. But please for your sake get second opinions on your diagnosis and treatment options. RP is just what it says Radical Prostrate Surgery and for some good option and for others radiation only, or radiation and hormone treatment. I comes down to what is best for you not what is best for me or others.

Do read about Tulsa Pro, not many places have it but it is an option:
https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/

My experience with surgery 11 months ago at age 74 has been 100% positive. Within 3 months, I had returned to all my normal activities of swimming, running, bike riding, skiing. My bladder worked better than ever...not only did I have no urine loss, but I could hold it longer, and then go quickly and completely with no slow, stop/start business. By 9-10 months, my sex life was back to normal. Each of my 3-month PSAs have been undetectable. I say this all not to brag, but to document that not everyone has the side effects or complications of which we're told pre-op during informed consent. I credit my surgeon, my excellent physical condition (normal BMI and no meds or medical problems) and my adherence to a good diet and recommended post op physical therapy and rehab.

Sorry to hear Oskar about your diagnosis. I am 53 yrs old and had my radical prostatectomy on the 29th of Jan this year, so just about 7 weeks post op at the moment. I only had about 2 weeks between biopsy results and surgery and joined this group in that stub period - you have come to the right place, I have learned much from others whom have walked down a similar path.

You must of course do your own research and determine what is best for you and your family. As for my story, I chose to have the surgery in part due to the suggestion from my Urologist, and second as my Father had the same surgery 19 years before I did. He of course strongly influenced my decision in that he had cancer return around 9 years post op and went through Radiation, and has been with us for 11 years subsequent to radiation and counting. I was keen on the fact that if/when cancer returns post RP surgery that radiation remained an option to again fight off this disease.

As I am sure most would agree, we all have gone through a variety of emotions as we come to grips with our individual situations. I am no different and as I sit here typing this note have been confirmed that there was no cancer found outside of the prostate and expect / hope that future blood work proves this to be true. Unlike the rest of my life, I took the time to slowly recover from the surgery and followed the physicians advice on caring for myself and preparing for the side effects of the surgery. At this time I suffer from periodic stress incontinence, but I am extremely hopeful that this will alleviate in time. Other than that, I feel pretty darn good and have started to get back into eating well and exercising regularly. Where 2 months ago I was very worried, today I am full of hope and optimism for the future.

I wish you good health and happiness in whatever decision you arrive at, and again, please do ask any questions you may have of this group, it is an awesome community! Take care.

@oskarpr,

I would echo what JC 76 said earlier. This is a complicated disease, and those of us with intermediate Gleason scores often have a choice of the smorgasbord of many treatment options. Easy to get overwhelmed.

I was diagnosed in September 2023, then spent about three months researching with my wife. The book “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer” was extremely helpful. We watched lots of the videos on the PCRI website (prostate cancer research institute). Prostate cancer foundation PCF) is another good source.

We also used Mayo Connect a lot. And tried to stay on top of the most recent validated research.

Be sure to get second opinions—of doctors, and of your initial biopsy pathology report. We interviewed one urology oncologist (surgeon) at Mayo Rochester, then a radiation oncologist. We weren’t super happy with either of them. It really helps to mesh your personalities and find someone you can totally trust. And, very importantly, find the best provider who is very experienced in the type of treatment you have chosen.

W then, after watching the PCRI info videos about a radiation therapy called brakytherapy (radioactive pellets inside the prostate to kill the cancer) we thought that sounded the best for me. I had been diagnosed 3+4 = 7 Gleason, staged level two, no extra-capsular extension (i.e., cancer had not broken through the actual prostate to outside areas).

You should say that I was lucky at the very beginning, because it had not actually been the PSA that pointed me toward PCa, I just had an unrelated back ailment and the CT scan happened to see the lesion, followed by an MRI, then biopsy.

We were advised by a mentor at PCR I to be sure to get a second opinion on a biopsy, and to get it from Johns Hopkins. We did that, and Hopkins found “large cribriform morphology,” which the Mayo pathologist had not noted. Then one of our brothers on Mayo Connect said to get a Decipher (genetic) test, which can give other good clues about the aggressiveness of your cancer.

Up until the second opinion from Hopkins, and the Decipher test, (which came back as .8, very aggressive) it had been assumed that my cancer was not aggressive; it was “intermediate favorable.” We had seen a Radiation Oncologist, whom we found on the Mayo Clinic website as being most experienced with Breakytherapy, and had set up the procedure for January. But after getting the Decipher score back just after Christmas, we decided to cancel that procedure and go the radical prostatectomy route.

So we needed to find the best surgeon. A generous and informative brother on Mayo Connect recommended Dr. Igor Frank as an excellent surgeon with a good bedside manner. (I believe he was the first at Mayo to use a robot with that surgery back in 2005.)

We met with Dr. Frank upon that recommendation, and were extremely impressed with him. He’s done thousands of RP’s, plus he is warm and friendly and has a great sense of humor. We were lucky to get in to see him fairly quickly because of a cancellation.

We met with him and his nurse a second time to finalize our decision, then I had surgery in late February. One of the reasons we had chosen surgery was because the entire prostate is taken out and biopsied post surgery, which gives a much better idea, more quickly, of the nature of the cancer. (The biopsies can be kind of hit and miss.)

This was attractive to us because we wanted more certainty more quickly following treatment. Sure enough, after the surgery my biopsy showed 4+3 with a higher percentage of 4, than the original biopsy did.

Three months after surgery, PSA will be retested and is hopefully undetectable (less than .1)—that will indicate the cancer was eliminated. But with radiation, the PSA bounces around for several months or even a year, as I understand it, so it would have been many many months of worrisome waiting to find out if it had been successful.

Another major reason we went with surgery was because if you need salvage treatment for cancer left behind after surgery, you can do radiation. But it’s very difficult to do surgery for salvage if you do radiation initially.

Surgery was successful. Dr. Frank took out the seminal vesicles, where it turns out the cancer had spread, but he found no indication of further spread, so did not remove lymph nodes. (He also found sort of a random nodule outside the bladder, which he took out. (It was benign.) All of his work showed negative margins, meaning that it looked like there was no cancer left outside of where he was cutting.

One sidenote. We live about an hour from mayo Rochester. On the way to surgery, 5 AM on country roads, we totaled our car in a one car accident. We weren’t hurt, luckily, but I was about to call Mayo and cancel the surgery when some Good Samaritans stopped and helped us out of the ravine, and gave us a ride all the way to the correct door at Mayo! (Thank goodness for Minnesota Nice.) 😊

This Monday it will be three weeks since the surgery. The first week or two were hard; my wife and I were dealing with several other issues at the same time, and having the catheter in for a week wasn’t a joyride. But hope, prayers, optimism and good humor— along with the prayers and support of countless family and friends —pulled us through.

I am not a medical professional, so all of this information is just from my personal experience. We are all different, so you must find what is best for you.

Sorry this is so long! Feel free to private message me if you want clarification or more info about my story.

Most important: do your research, and stay positive, hopeful and optimistic. You got this!

Jim G

oskopr: Finished 5 hypo fractional, mridian linac radiation machine treatments in February of 2023. Specifically chose that machine because of real time MRI and 2mm margins instead of 3-5 mm used for most other forms of radiation. Limiting the exposure of healthy tissue was important to me regarding side effects. I did take the Decipher test.

Some urinary restrictions after 3rd treatment but handled with Flomax. I did have Spaceoar inserted with no issues. I was treated in Orlando, Florida and had Proton, the Mridian Photon and prostate removal as choices. Orgasms changed a bit and semen thinned out but other than that, I have had limited side effects.

Oscar,
You need to get other input. Many oncologists/ urologists would recommend surveillance with a Gleason of 7. He is going for the jugular right away with his advice to get a prostatectomy. Cyberknife + ADT may well be the recommendation from the radiation oncologist. This treatment will render useless your seminal vesicles - an obvious downside to this treatment. Also, pray and ask God to lead you through this phase of your disease and the best treatment for you. He is ready and willing to help.
Best to you, sir.

Oscar,

You in the right place to get the full range of experiences and to learn what were the drivers leading to individual treatment decisions. Ultimately only you can decide if and how anything you learn from us applies to your situation.

The first thing I learned with my 3+4=7 Gleason pathology report was that there was no reason for me to rush into ANY treatment decision….that I had time to do my own research. IMO if anyone (doctors included) are rushing you to make a treatment decision…I would consider that a “red flag” and a clear indication that you need a 2nd and even 3rd opinion. This is probably the hardest thing to get clear in one’s head, because we have all been trained to basically freak out when we hear the word cancer.

Towards this end I have attached a study that involved >8500 men with PCa and their 10 year outcomes after making various treatment decisions AND a list of the side effects they were experiencing one year after they had their selected treatment. Of course, the percentages reported will not necessarily define your individual response, but they are helpful when attempting to COMPARE treatment options according to the average response found in a large population of PCa patients.

There has been some excellent advise already written, so I won’t repeat.

My doctor and I decided on active surveillance (AS) after obtaining a 0.22 Decipher score (low risk) and coupling it with the information in my pathology report.

AS simply means I am waiting to see how things progress before make any irreversible treatment decision.

I decided to practice “aggressive” AS and have lost 25 lbs (BMI is now 22.5) by implementing a whole plant food diet and a vigorous running exercise program. My PSA dropped 25% at my 3 month mark after diagnosis, so I’m continuing my AS program.

I am older (67), so you have the age difference to consider.

IMO after you get through the first decision (to give yourself enough time to do your research) the second most important decision is to have a Decipher test of one’s cancer cores to determine the aggressiveness of one’s particular cancer.

The Decipher Prostate Genomic Classifier has just received a Level 1B evidence rating, the highest rating among molecular tests. This test is independent of all other clinical factors and can significantly impact one’s treatment decision for those with 3+4=7 Gleason.
https://www.urologytimes.com/view/decipher-prostate-test-receives-high-evidence-rating-in-nccn-guidelines#

Thank you very very much Jim
for taking the time to provide me with that much information.
I will definitely keep in touch
I just downloaded Dr. Walsh’s book to read right now.
Oscar