I'm following up on my previous post (see yesterday's for more details and I apologize for the repitition) and have some specific questions I'd appreciate insights on. I'm a 53-year-old active male—I play golf and tennis, and I'm a regular at the gym. I recently married my wife on August 10, 2024; she's half my age, and we're hoping to have children.
Last week, I had a 12-core TRUS biopsy:
Left side: All 6 cores were benign.
Right side: 5 cores were Gleason score 3+3, and 1 core was 4+3=7 with 90% involvement at the right base.
My PSA levels are in the 8-9 range, and my DRE was normal. A negative MRI in July gave me a false sense of security, but I'm scheduled for a PSMA PET scan this Wednesday.
Here are my questions:
1. PSMA PET Scan Experiences: For those who had a Gleason score of 4+3=7, can you share your PSMA PET scan results? I'm worried I might light up like a Christmas tree on imaging.
2. Catheter Concerns: How uncomfortable is it to have a catheter in for 10 days post-surgery? I'm quite sensitive to tactile sensations and a bit anxious about potential discomfort.
3. Reliability of Previous MRI: Given that my MRI was negative but missed the area with the 4+3 score, can I trust it regarding extra-prostatic involvement? How reliable is the MRI compared to the upcoming PET scan?
4. Treatment Options: Is radical prostatectomy (RP) the standard care for cases worse than Gleason 3+4? My urologist is recommending a robotic RP consultation after the PET scan, depending on the staging. His expertise includes urologic cancers, kidney disease, incontinence, and BPH treatment, with a focus on minimally invasive and robotic surgeries.
Any insights, experiences, or advice would be greatly appreciated. Thank you!
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Fozzworth
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Dont stress and rush into a treatment. Ask a second opinion. But as you are young they will suggest you surgery. The only not toxic way to get the tumor cells out of your body.
Psma pet scan will tell you if you have other tumor cells out of the prostate. If you have othe tumor cells from the prostate tumor ouside the prostatic capsule you will have to choose another therapy than surgery.
About catheter : there is not a big deal having it after surgery. It s necessary for the healing process because the urethra was cut and fixed. Incontinence will come after the removal of the catheter but as you are young you will find quickly a way and the sensation to manage the incontinence. Go swimming so you wont care about peeing a little in the water. Soft sport (boring and endurance) is better than stop and go sports. It s good that you are active so you know your body.
Having children is no more possible on a natural way, as you will loose you semen. After surgery you will loose it 100% because prostate and vesicles will be removed. After radiation i m not sure how much one looses. Robert de Niro had prostate cancer and did RP (Prostatectomy) he got children after, thats because he freezes some of his own sperma before surgery. So it s always possible but not on the natural way.
Sexaul activity : If you are active you will restart your activity after surgery. It s different but it works. No boner like if you where 20 but with the help of pills you will find the sensations again.
You are quite young for this but better beeing diagnosed early than too late. I was 56, i m 58 now and i m ok with my "new" life, sex life, etc...
Good luck. Advocate yourself. Ask second opinion. Dont stress, it s not good for your health. Find the right particitian (surgery or radio, whatever you will do).
As others have mentioned - go discuss options with a radiation oncologist. Outcomes are better with radiation/ADT for your situation. And frankly, with surgery there are more likely side effects - incontinence, sexual disfunction, than with radiation. And many folks who go with RP end up having radiation down the line anyway.
Do some research - this place has lots of good information. pcri.org/
Get an opinion from a radiation and a medical oncologist.
Any PCa treatment will make you effectively sterile, so bank your sperm while you can. You might also want to consider which state you are living in and whether your access to IVF is protected.
PSMApet: Findings:Parotid Glands SUV1.9,LiverSuv4.8,Aorta Suv1.2,Abdomon/pelvis:Multifocal mild prostatic PET avid foci distribution hetergeniously in apex max SUV 2.3 Mildly avid left ext iliac/anterior pelvic sidewall noDE Suv1.5, left common promininent iliac lymph nodes Suv0.9 IMPRESSION: Mild hetergeneous inferior prostate SUV 2.3 Score 3 Nonspecific min avid nonenlarged left external and common iliac lymphs max Suv 1.5, serveral nodes below aortic blood pool at 0.9. These are indeterminate. Score 3
Echoing other comments here: urologists are surgeons; they cut. Get another opinion from a uro AND a radiation oncologist and a medical oncologist. I chose radiation. From what I understood and learned that was the best option for me. Long term side effects were the result of ADT/low T: wt, man boobs, joint pain. I had a catheter for 24 hrs or so post brachy boost. I hated it. So uncomfortable to me; the feeling of lack of control. But, most will tell you that it's a minor inconvenience and that one gets use to it. So, perhaps, my experience was unique. Be sure to ask questions. I found that my docs would answer questions but offer little info unless questioned. Also, be sure you know the potential impact of treatment on your sexual functioning. Ask about ED meds, penile exercises (e.g., penis pump).
Good luck to you. Btw, TA is a great source of info.
I'll have to dig up my PSMA Pet results, but I'm 4+3 (one core) and 3+4 (3 or 4 cores), 60 years old. My PSMA was clean, Decipher was .55. Based on the great info on this forum as well as PCRI.org, I went the radiation route, SBRT, and a 6-mos course of Orgovyx. Just had the 3rd of 5 radiation treatments yesterday and been on Orgovyx for about 2 mos. Only major side-effect at this point are the hot flashes that wake me up almost every 1.5 hours a night. Just prescribed Flomax which helped significantly with the slight urination issues once the radiation started. I'd definitely suggest getting some other opinions, looks like you would need to bank your sperm regardless of treatment chosen, good luck!
I’m in the same boat but terrified to have surgery cuz everyone I know who’s had it can no longer get erections and/or have no sex drive anymore either. I just turned 50 and separated & back meeting women. I don’t know what I’m going to do but trying other natural things now like fasting and keto to slow maybe stop growth
I would add that PSMA PET scans can have false positives. That was the case with me. Slight pick up in the ribs L2 and L4. If you have sclerosis or other spine/ribs injury a false positive is not uncommon. So don’t panic if you get some pick up (SUV below 3 or 4) in ribs.
So I have nodular sarcoidosis; 7 or 8 lung nodules showed up on a chest X-ray but a bronchosopy with biopsy was negative for malignancy. I guess I will light up like a christmas tree
First sorry to hear the positive 4+3 biopsy. Did you send the tissue out for a second path opinion? How a bout a Decipher or other DNA test.
As others have said, don't rush to treatment plans. Get an opinion from urologists, radiologist, and or an oncologist!!!!!!!!! Discuss focal therapy with the consults.
YouTube videos made by PCRI.org re great! Also University of California San Francisco videos are top notch.
My comments mirror what has been said earlier. The second opinion idea from someone other than a surgeon is S.O.P. The 3+3 core is ok. Does not metastasize or convert to a higher grade Gleason tumor
You'll read about a lot of SOCs (Standards of Care) for treatment, but everyone's situation is unique. I'm 71, diagnosed with Gleason 6 a couple years ago. I did a lot of research about things to consider if it ever advanced. Fast forward to October 2023 and a biopsy showed one 4+4 lesion. PSMA was negative and my PSA was about 7. I opted for radiation: HD brachy (one session), 18 IMRT radiation sessions, and 12+months of Lupron (ADT). I did need a catheter overnight after brachy (more hassle than anything else). A subsequent second opinion from Johns Hopkins changed my diagnosis to 4+3, so I discontinued ADT after 6 months.
Side effects of any treatment are unpleasant but unavoidable. Loss of strength and stamina were my major problems, along with ED and zero libido. My T-level dropped to 7 and PSA was undetectable (it still is). I couldn't watch Hallmark movies and didn't need to shave as often. T is slowly coming back, and although I have a couple of minor urinary and bowel issues, I'd take the same path again if offered a re-do. I really wanted to avoid RP.
I can only imagine what you are going through mentally having this diagnosis at age 53. I was 20 years older when diagnosed with PC. My initial PSA was only 3.9 and my Urologist was wondering why I was seeing him. I told him my PSA had gone from .7 to 3.9 in only 3 yrs. I told him I was concerned with the rise and just wanted to get things checked out. He repeated it two months later and it had risen to 5.1. DRE felt suspicious so he ordered a prostate specific MRI. It came back with a single lesion--PiRads 4. Biopsy yielded 4 lesions all on the left side-apex, base, lateral and medial. All four lesions were Gleason 7--4+3 ranging from 5% to 45%. Regarding your first question: A PSMA PET scan yielded no metastasis. A repeat, a year later, yielded the same results. Like you I thought I might light up like a Christmas tree. Your 2nd question I can't address it as I went with SBRT with ADT for six months. I asked my Urologist if I was his dad what would he recommend. He said his dad had just been diagnosed with the same thing I had and he recommended radiation and hormone therapy. Bear in mind that I am 20 years older than you.From my experience I can tell you that the SBRT was a breeze but the ADT slammed me pretty hard for about 10 months. But I can't complain about the results. I am now 16 months post treatment and my PSA is still 0.04. I have had no complications or side effects from the SBRT. In answer to your 3rd question: The prostate MRI only showed one lesion whereas I had four. I had a phenomenal Urologist. He was beyond great. The MRI did direct him to take extra samples from that one area. Regarding question #4: From all of my research on the subject, peer reviewed medical research papers, and all the advice from this board (Tall_Allen, etc), and from what I have personally experienced I would make the same treatment decision again. For your case you need to saturate yourself with every bit of information you can gather; make an informed decision and then execute it. You can't let someone else decide for you. I was fortunate in the fact that my Urologist was looking out for my best interests and not just selling me his own bill of goods. Good luck.
I had one 8, two 7's, and two 6 cores at age 66. I was steered toward radiation but chose full gland HIFU ablation instead. I had to go out of state and out of pocket. It was not considered SOC then but might be moving in that direction with Mayo Rochester now offering it. Some insurance may cover it. My results were great. No incontinence, no erectile dysfunction and my PSA readings remain low 8 years post surgery. Like with any surgery, find an experienced practitioner; this is relatively new in the US.
The industry has an imaging problem. They actially have the ability to shoot something smaller than what they can see.
So there are educated guesses going on as to what is going on between your legs. This is why after guys get RP, and the docs get the prostate under the microscope and can dice it up, they very often find more stuff.
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
And, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.
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