r/ProstateCancer

Hi all, had the removal surgery at 41 and was told the cancer didn’t spread beyond the gland. The subsequent PSA tests were undetectable until 2024 when it was .09, and last year due to stress from my mothers declining health (I was pretty much her caregiver) I skipped, but I just had a ultra sensitive test done and it came back at .38. Sadly over the last couple years I have had a poor diet and being rather inactive. Just curious what my next step might be. My doctor/surgeon suggested either a scan or seeing me every 6months depending on results (his comments were made prior to the blood test being taken as I got lucky with a next day appointment with him).

After having RALP, I thought this was hilarious.

I have seen many suggestions in other posts about finding a CoE, but I'm not sure how to determine which one is in my area.

My husband has aggressive PC, that may have metastasized. We are still working on all the investigations. I'd like to make sure we are working with a CoE. We are in Hamilton Ontario, any suggestions would be helpful. Also, if someone has the name of a top dr in this field that would be helpful.

Thank you in advance.

We have my father's oncology appointment on Tuesday. We tried to get him into an oncologist at a great center a few hours away but they can't get him in until the end of July and he doesn't want to wait so he wants to go to our local one to get treated. For transparency he is 80 and has a bit of dementia so I am his point person for his healthcare. Since our local hospital and oncologists don't have the experience a larger hospital does and because it's my Dad I've thrown myself into as much research as I can and tried to answer his questions to the best of my ability but I've realized what I need most is experience. If you were to do your treatment over again is there anything you would have done differently? What questions would you have asked or did you ask your oncologist? We have a choice between two oncologists, what should we be looking for in a good one?

Edit for clarity: He has stage 3 cancer on the right side only 4+3, PSA 3.7 and PET shows no spread into lymph or bone

https://www.youtube.com/live/MAGUWDypv4c

This link is excellent. Has lots of experts on the video. You have to get around some of the PCRI advertising stuff, but lots of well known docs talk about things in a relaxed interview setting. The doc doing the interviews is great.

If you think you are having a recurrence or have had one or might in the future (all of us), then it’s worth your time.

Went to urologist with BPH symptoms, 52 year old with PsA 3.33, urinary symptoms but do have enlarged prostate at .40 I believe, sent for MRI to check prostate, 1.2 cm pirad 3 lesion located in the periferial area, minimal diffusion and negative on the contrast, psa density at .08.

Follow up appoint urologist states he biopsies all pirad 3 lesions, negative DRE at appointment; scheduled for transrectal fusion biopsy June 11th.

All my internet research leans toward favorable results but this is ALL I have been thinking about and am very anxious.

Been reading on this site so decided to post, I wish the best to those on here that are going through more than I am.

56 YOM otherwise healthy and run 5 days a week. Boost results are in 4 of 12 cores came back positive for cancer. Right apex came back 3+4=7 intermediate and the other 2 were right mid gland 3+3=6 Gleason.
The only treatment in my area is removal or radiation. The urologist is recommending the Fred Hutch center in Seattle and thinks I’m a candidate for HIFU, there is a place in Spokane which is closer but does less HIFU procedures.
I think I’m in for a battle with insurance about HIFU because it’s not considered standard of care yet, so they might classify it as experimental and not pay. They’ve assigned a case manager, so waiting to talk to them next week. I have to wait 4 weeks to see my urologist to talk treatment options officially but I’ve already called the place in Seattle.
Would love folks thought and experiences around HIFU and if your insurance covered it as well as anything else folks can share.
Radiation and removal scare me, I’ve got a hig stress job and little kids so I can’t be out or limited work wise for long. Not to mention that ED and urinary issues related to both radiation and removal scare the heck out of me.

Been reading Survivng Prostate Cancer boook by Dr Walsh which has been extremely valuable. I had biopsy done which found 2 lesions from 14 samples, one a 3+3 and the other 3+4, the pattern was labeled a cribiform. Urologist recommended surgery, I am 54 years old. Now comes the interesting part of the story, I was referred to next step getting a MRI, well, went last night, Filling out the form they asked if I ever had any shrapnel, BB’s or metal in my body. Well, when I was 10 my best friend shot me with a BB Gun. The BB hit me in my eye. At the time didn’t think the BB went in. Just bounced the corner. Well, they needed to be sure. So, I told them I had a CT Scan of my head done end of last year, they pulled that up and saw a round object behind my eye in the spot I got hit, the radiologist looked it over and determined the BB is there from almost 44 years ago. So, they could not do the MRI.

I am scheduled to meet surgeon today to discuss surgery to remove the Prostate. I am guessing since I cannot do a MRI, they will do a PSMA PET/CT next. Seems the PSMA PET/CT would have been better option than a MRI from what I have looked up. What have others done that have not been able to do a MRI? What about long term imaging options after getting surgery, would it always be a PSMA or other type of imaging avaialble?

I will ask these questions to Dr today. Any other questions I should be asking you think? Here is my biopsy results:

FINAL PATHOLOGIC DIAGNOSIS
A. PROSTATE, RIGHT BASE, NEEDLE BIOPSY:
- BENIGN PROSTATIC TISSUE

B. PROSTATE, MID, NEEDLE BIOPSY:
- PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3 + 4 = 7 (PATTERN 4 =
30% OF TOTAL TUMOR, GRADE GROUP 2), INVOLVING 1 OF 2 CORES (TUMOR
MEASURES 1.5MM IN A 13MM CORE).
- CRIBRIFORM GLANDS PRESENT
(SEE COMMENT).

C. PROSTATE, RIGHT APEX, NEEDLE BIOPSY:
- PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3 + 3 = 6 (GRADE GROUP
1), INVOLVING 1 OF 2 CORES (TUMOR MEASURES 0.5MM IN A 13MM CORE).

D. PROSTATE, LEFT BASE, NEEDLE BIOPSY:
- BENIGN PROSTATIC TISSUE

E. PROSTATE, LEFT MID, NEEDLE BIOPSY:
- BENIGN PROSTATIC TISSUE

F. PROSTATE, LEFT APEX, NEEDLE BIOPSY:
- BENIGN PROSTATIC TISSUE

Comment
Cribriform glands represent a high-risk histologic subtype of
Gleason pattern
4 prostatic adenocarcinoma, and are associated with
increased risk of upstaging and a higher risk of recurrence after
treatment.

48yo, Active, Healthy. My story is as follows: Went to a new provider for my TRT and he ran a full blood panel. PSA came back at 25, then 22.5 the following test. Had a biopsy done 3 weeks ago and had 7 of the 12 samples containing cancer. A few spots of G6 and 7 and 1 spot Gleason 9. PSMA scan last friday and results so far are showing no signs of metastasis. I have a follow up tomorrow morning with my urologist. This all still feels like a bad dream I can't wake up from. So as much as I hate to be a member of this club.........here I am.

12 years post RALP and my PSA is climbing again. It crept up over the past 3 years and went from 0.13to 0.16 in 3 months, so I got a PET scan. Fortunately, they found ;

1.  No focal abnormality of tracer activity within the prostate bed to suggest locally recurrent disease.

2.  No evidence of malignant nodal disease.

3.  No evidence of skeletal or visceral metastasis. Tiny pulmonary nodules are well below the size threshold for reliable evaluation by PET and can be watched on subsequent surveillance imaging in the absence of documented long-term stability

I know I'm not out of the woods here, but that report already made my day.

59 years old patient, after biopsy and IHC, it's found that the gleason score is 6. Which means metastasis is very less likely.

But after doing PSMA PET scan, it was found that a tiny malignant spot found in the iliac bone.

The doc went straight to the diagnosis of a metastatic cancer.

Is it like a valid statement from the doc? Like after contacting another doc, he also was confused on this paradox.

I'm kinda worried rn and my terminologies might not be accurate.

What are your thoughts?

This paper was produced in conjunction with the Mayo Clinic. Dr. Eugene Kwon was talking about it in an interview.

I found it interesting that such a high percentage of people in their study with undetectable PSAs after treatment still show positive PSMA-PET scans, often with metastases.

A couple of questions came to mind when I read it. First, I imagine they are using the Mayo standard of <0.1 PSA to be undetectable. My guess is that a lot of guys that lit up the PSMA PET had PSAs just below 0.1, e.g. 0.09. Second, I’m not sure how they controlled for false positives on the PSMA-PET, especially on rib lesions. I’ve seen a study that showed a very high percentage of single rib lesions on a PSMA-PET are indeed false positives.

In any event, I was a little shocked by this information.

I’m 53 and having surgery in late June. I will return to work after taking a few weeks off. My doctor thinks he can spare my nerves.

My question is: how long will I be incontinent to the point that it affects my workday - how often will I need to change my pad and/or Depends during the day and for how long? Any experience (along with your age and if your nerves were or were not able to be spared) would be really helpful for me to plan. Any experience returning to work & how you dealt with incontinence would also be good to hear. Thanks.

Long story short, I am 63, healthy, run and workout 5-6 times a week, I had a PSA of 4.39 up from 3.9 the year before, so my doc sent me to a urologist. Next PSA 2 months later a 5.3, MRI clear, but ExoDx a 46. So a biopsy was ordered and showed 2 of 12 cores as hits, one a 3+4, the other a 4+3 but the urologist was skeptical of the 4+3 given only 2 hits and the PSA. So we did a PSMA PET scan which showed "intense activity at the posterolateral left prostate lobe near the mid gland". So, 1 side only. Decipher score of .24 (low risk).

The Decipher report also shows that these conditions could warrant AS vs. treatment at least initially. With data also showing a 0.4% risk of metastasis in 5 years and 1% risk of metastasis in 10 years.

That data seems to show AS is not a bad option in the short term but at the same time, there is that 4+3 that is getting a second opinion but if the second opinion comes back 4+3, then what? Does Decipher trump Gleason?

I have not had a f/u with the urologist since the PSMA and Decipher results came in but that happens next week.

I am strongly leaning toward a radiation therapy, likely LDL Brachy, just to make sure we kick this thing in the nuts (no pun intended). But at the same time if the Decipher report is accurate and the doc says I am much more likely to die from something other than prostate cancer in 15-20 years even with AS, I don't know what makes sense any more

I just had my first dry orgasm and it felt good but weird Nothing came out My question is where does it go and what happens to it

I feel like I keep posting with strange questions :-)

I had my prostate removed in Dec 2024. This was followed by PE's and a lymphocele which lasted about 2 months. I also had swelling in my right leg. My doctors all told me that the swelling was not a problem and not to worry about it. Later in the year, tests showed there was still some cancer, so radiation was ordered (6 weeks) and I completed that at the end of Nov last year. Now my leg has gotten even more swollen. It's about 40% bigger than my left leg.

Doctors still don't seem too concerned, but it's causing some aching pain and tingling, which makes me think a nerve is being affected. I walk, drink lots of water, and I've worn compression socks (although they are very uncomfortable and hot in the summer). Has anyone dealt with this? What did you do? This list has been a great help as I try to fully recover. Thanks to you all!

I had a long talk with my HDR nurse at MSK concerning the prep leading up to my procedure next week.

A question concerning ADT as an adjuvant to radiation has been raised on this subreddit.

Some men start ADT concurrent or after definitive radiation treatment. MSK's treatment is radically different. They start ADT months before radiation. For me, it will be 2 months at time of HDR. Why? They believe low testosterone shrinks the prostate for better targeting. It stops the progression of the tumor. But the biggest factor is low testosterone makes the cancerous lesions more sensitive to the radiation.

The nurse said the relationship between PCa, low T, and radiosensitivity is well known.

My father is going in for his second ADT injection today, following the first one he had three months ago. His PSA has dropped from 8 to 3.4 during this time. I think that's a very small drop. I read on the forum that people's PSA levels drop quickly to levels below 0.

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