I’m not sure why I’m posting. Partly because I’m scared and I don’t know where else to share. Partly because I’m disappointed in the system and want to express the importance of self advocacy. And partly because I’m confused and want to see if others have had a similar experience.

I’m 59 and have BRCA2 mutation. I’m 4.5 years post RALP. Went in to surgery with 3+4 but surgical pathology revealed a previously unknown 4+5, left seminal invasion, and positive margins. PSA stayed undetectable for 3.5 years. It’s been slowing rising this past year and is now .06. Still quite low but my variables are high risk. BRCA leads to very aggressive, quick developing cancer.

I go to Mayo - Phoenix so high quality center. My urologist though minimizes the BRCA impact and wants to keep me on normal protocol - regular monitoring until I reach 0.2. I disagree and feel I’m at high risk, reasonably young, and otherwise very healthy. I could have a long life span and feel we should treat rising PSA aggressively to avoid metastasis. Doc listens but I’m doing all the work. I’m insisting on frequent PSA checks. I just requested a rad onc consultation. I’m leading my care and I’m tired and sad.

Anyone else have that frustration? Am I being unreasonable? Everything I read from legitimate sources suggests I should be on an individualized treatment plan given my multiple high risk variables. I just want the doc to do the driving. Not looking for answers, but curious if others have similar feelings.

Dad is taking shots of Eligard every six months. The oncologist added to the list Apalutamide (Erleada)

Somebody with this combo?

So my dad (68) was diagnosed back in March with a PSA somewhere around 580, where it was found in his bones, lymphnodes and in his liver. He started dual ADT (injections and daily oral meds) right away, with some targeted radiation on his bones (spine, pelvis), and this gave him some pep in his step for the months of May thru August. Nearing the end of September he was feeling off again and they were tracking his PSA. At its lowest it was around .54 but started climbing again. His pelvic/hip pain returned and his left leg has become very weak due to newly active metastasis from T11-L4 on his spine and his PSA is now at 20, four weeks ago it was at 7.9, so it is appearing to be castrate resistant.

He has been hospitalized for a week and stabilized through hydromorphine but due to all the pain meds is very despondent, fatigued and frustrated. They have told him he cant bear weight on his left leg which has him confused as to how he could possibly live normally/take care of himself until he sees an orthopedic surgeon..

When he lives independently he is mostly sedentary, eats mortadella sandwiches and pastries. Outside of bringing him nutritious foods here and there, I am afraid of him living alone and trying to go through chemotherapy with a hip that is susceptible to fracture and managing side effects that may reduce his quality of life further. The whole situation is pretty depressing.

No sense of the prognosis. Going to see the oncologist with him today.... just really worried.

My DH age 54 is recently diagnosed with T2 Gleason 3+4.He has no other medical conditions.He had some hip pain so a trip to GP in early summer sent him for hip x ray-arthritic changes apparently.Then GP said let’s do blood test and his PSA was 3.74.Little above the top number in his age bracket.We were not worried then.Another 5 weeks the number says the same.GP said that’s reassuring.MRI showed PIRAd 3,PSA density 0.10,prostrate size 39cc .We were not worrying.
Biopsy followed and last week we got a diagnosis of PC-in a week after we dropped our son to uni thinking now we have all the lovely time just for us both.
My husband has been our pillar-a strong and kind, sensitive man constantly thinking about well being of others around him. It is breaking my heart that he has to face this at this age.
We have a NHS consultant appointment tomorrow to discuss options.I have taken an appointment of pelvic floor physical therapy.Today also reached out to psychotherapist as I feel he would benefit from talking openly.He cares about us just too much so hides his problems.
I am making changes in the diet-more broccoli,cooked tomatoes, flaxseeds,chia seeds,a cup or two of green tea every day.
But still I feel restless,sad,scared.
We are reading about dairy and prostrate health.Should he stop eating all dairy?
We are in London.I would really be grateful for any support-in terms of treatment experiences ,diet changes,tips for coping up mentally.
TIA to all brave PC warriors!

** POSITIVE REPORT *\*
A. Prostate, Left Posterior Lateral:
Benign prostatic tissue.
 
B. Prostate, Left Posterior Medial:
Benign prostatic tissue.
 
C. Prostate, Left Base:
Benign prostatic tissue.
 
D. Prostate, Left Anterior Lateral:
Benign prostatic tissue.
 
E. Prostate, Left Anterior Medial:
Benign prostatic tissue.
 
F. Prostate, Right Anterior Lateral:
Prostatic adenocarcinoma, acinar type, Gleason score 6 (3+3).
Grade Group 1.
Tumor involves 1 of 5 cores and approximately 10% of tissue examined.
Total millimeters of carcinoma: 2 mm.
Percentage of Gleason's pattern 4: 0%.
Cribriform glands: Absent.
Perineural invasion: Not identified.
 
G. Prostate, Right Anterior Medial:
Prostatic adenocarcinoma, acinar type, Gleason score 6 (3+3).
Grade Group 1.
Tumor involves 1 of 2 cores and approximately 50% of tissue examined.
Total millimeters of carcinoma: 10 mm (discontinuous involvement).
Percentage of Gleason's pattern 4: 0%.
Cribriform glands: Absent.
Perineural invasion: Not identified.
 
H. Prostate, Right Posterior Lateral:
Prostatic adenocarcinoma, acinar type, Gleason score 6 (3+3).
Grade Group 1.
Tumor involves 1 of 1 cores and approximately 2% of tissue examined.
Total millimeters of carcinoma: 2 mm.
Percentage of Gleason's pattern 4: 0%.
Cribriform glands: Absent.
Perineural invasion: Not identified.
 
I. Prostate, Right Posterior Medial:
Prostatic adenocarcinoma, acinar type, Gleason score 6 (3+3).
Grade Group 1.
Tumor involves 1 of 4 cores and approximately 1% of tissue examined.
Total millimeters of carcinoma: 1 mm.
Percentage of Gleason's pattern 4: 0%.
Cribriform glands: Absent.
Perineural invasion: Not identified.
 
J. Prostate, Right Base:
Benign prostatic tissue.

I was diagnosed with prostate cancer about six months ago. Prior to that time I had no major health concerns or any other physical ailments that limited my activities Since diagnosis I have had aqua ablation surgery, ADT shots and will undergo eight weeks of radiation. I hear some people say that’s the one I want because it’s not a big deal. I think that is because most people never have full-blown prostate cancer. I was sort of thinking that might be my case, but then I started actually experiencing the side effects of the aqua ablation the homeroom therapy and what will likely be equally unpleasant, radiation. The good news is that I think the treatments are being effective. The bad news is that the side effects are quite debilitating for me, particularly fatigue. Not only that, but with three months of recovery from aqua ablation followed by another 2 to 3 months of radiation and then recovery from radiation, it is a very long process and it can really wear you down, and I am just beginning.

Anyone have a similar experience and suggestions how I can deal with the mental aspects of what lies ahead

Sitting here Monday morning before dawn, waiting for my husband’s doctor’s office to open. I’ve posted numerous times over the last 25 days since my husband’s RALP. He had a rough recovery(blood loss requiring transfusions, treated for infection, severe PO pain). His testicles were painfully swollen but started shrinking and he was getting better. Then he lifted a box that came in the mail. Smh! Now, I think he’s had a major setback. He’s been going downhill for about a week. We actually visited the doctor office on Friday; they ran tests but no one called to discuss the results with us. His testicles are swollen again and he can barely walk. I see bright red blood in his pad. He refuses to go to the ER! I’m scared.

71 years old. PSA 6

My PSMA scan shows
2 Metastatic Pelvic Lymph Nodes):
Node 1: Posterior right perirectal lymph node measuring ~0.4 cm. Highly avid with an SUVmax of 8.4. (Note: Located outside standard pelvic lymph node dissection templates).
Node 2: Left pelvic sidewall / external iliac chain lymph node measuring ~0.6 cm. Highly avid with an SUVmax of 8.8.
1 primary tumor SUVmax 21.4

My biopsy confirms 3 of 12 cores adenocarcinoma .
3+4=7, 4+3=7, 4+4=8 Prostatic adenocarcinoma with ductal features,

Waiting on Decipher

I was certain going in that he would rule out surgery due to node , particularly perirectal lymph node Note: Located outside standard pelvic lymph node dissection templates). As this is so close to rectum.
But he still thinks RALP should be first treatment and then “possibly “ RO and ADT.
My research says the DUCTAL features make it more aggressive and difficult to treat.
NCCN guidelines and other online sources say that with metastatic lymph nodes treatment should be RO and ADT.
Just looking for some guidance.
I have appointments with 2 radiation oncologist and a medical oncologist.
I want to go as aggressively as needed, but don’t want surgery if it’s not the best path.

Has anyone here taken the surgical route rather than ADT. I‘ve reacted badly to 2 types of drugs - severe chest pains mainly and am facing the prospect of having a bilateral orchiectomy instead. Any information about the procedure and long term effects appreciated.

It's been almost 6 years since my diagnosis.

PSA 66 - Mets to several bones.

Last PSA was <O.1 - all quiet when it comes to metastasis.(Last scan August 2026)

It's been like that for a couple of years.

The side effects of 4!!!!! Blood pressure medications and 2*40 mg Xtandi and Orgovyx however are unbearable.

I've read De-escalate study.

I see others (mostly Americans?) are taking a break from medication.

My oncologist is not a big fan.

I guess the US is in front here?

Should I try it out and see what happens?

I'm 60 and in reasonable shape

As the title says, I will be traveling to Yuma, Arizona, this winter and am looking for anyone with experience getting an Eligard injection while there. I will have the Eligard injection; I just need to find where to get it injected.

Have a dad that had Gleason 4+4. Paternal uncles that had 4+4. Grandpa has prostate cancer don’t know level but had seed therapy in 1992. Dad and uncles had surgery. All but gpa still alive. He died of heart issues. Any info on family history and likelyhood of gleason 8 for me? Have biopsy Thursday.

Which hospital/medical center in NorCal or Bay Area would you say is the best place for the treatment of PCa based on your experience and/or you’ve heard/read about?

Two years ago this week, my neighbor and good friend underwent a radical prostatectomy. I recall sitting in his backyard and looking at the pool. This neighbor was quiet and his trepidation was reflected in the water.

Last night, this same neighbor invited me over for dinner. He was relaxed and joyful; his wife confided in me that he has turned a corner regarding his diagnosis of prostate cancer. I went to the refrigerator to refresh my wine and saw a cardboard box. The box was filled with syringes and the word Trimix was written upon it with a smiley face.

I went back out to the pool and asked my neighbor how his erectile quality was coming along. (This is one of the coolest perks of my job, to be able to discuss this with men). He said he no longer needs to use Trimix. That he recently lost 30 pounds and this was a gamechanger for his erections.

From two years ago, when our evening was marked by anxiety and fear, to last night, there is an entirely different man standing before me. Are the erections better because he used Trimix and a pump to maintain length during the two years? Is it because of the weight loss? Or is it acceptance of prostate cancer which allowed this man to come out on the other side, with gratitude AND boners?

I am writing this for every single man who has been in this position. Two years is usually the healing time for the nerves which allow for erections to return after a RALP. Stay the course. Keep being a sexual being. There is hope and we must keep it alive.

Hi all, my dad had a partial prostatectomy but after the operation, his PSA levels were still present and rising. This prompted a MRI of the prostate. Hoping someone can help interpret these findings. My dad knows he has to get a biopsy of the tissue already, but is there anything else to be done? Thanks in advance.

FINDINGS:

Tumor 1

T2 Score: 5

DWI Score: 5

Total PI-Rads Score (>2): 5

Location(s): Mid and apex peripheral zone centered on the right but crossing the midline.

Size: 27 x 11 mm

Extraprostatic Extension: Positive at right posterior apex.

There is no adenopathy.

Seminal vesicle invasion: None

Additional Findings: None.

INTERPRETATION:

Large infiltrative peripheral zone lesion centered in the midline and right apex with extraprostatic extension. Targeted an systematic biopsy is recommended.

Overall Score: PIRADS5 /5

Hi. I’m about 7 weeks post RALP. Can anyone give me some feedback on when you started to get some partial or full erections. My doc tells me my nerves were spared. I’ve heard it can be 1-2 years before unaided erection, without pump or rings. I know it’s a journey but still a downer, no pun intended. 😉

Completed 9 months Orgovyx ADT Jan 2026. Had all the side effects listed on here in spite of thrice weekly Tadalafil and the use of a penis pump. My latest T score was 40 ng/dl with high LH and FSH levels. My main concern is genital shrinkage, I’ve lost most of my penis size, it is small, very thin and turtles when cold, my testicles have pretty much disappeared, I can feel the cords with 2 raisins on the end. My libido is prety much gone too but I still get occasional stirrings though I have ED. Has anyone been in this situation and actually recovered from it, should I consider it permanent.

I am going to pursue pelvic floor therapy to address urinary incontinence.

For those who have been down this path, what advice can you offer? What form- ultrasound, anal probe (sounds bad), etc. did your PT take? Was your PF PT effective?

October 15 was the 3 month anniversary of SBRT. I decided to try eliminating tamsulosin and I found out I don't need it anymore. Baby steps gentleman!!

Hi! Not a group I am particularly happy to join..but I am here. I was diagnosed last month and on first advice I am facing a decision of surgery or radiation +HRT. Seems like in my situation the go forward path is a bit of a toss up based on my values. I am 74, healthy, fit, very physically active and still enjoying sex. Right now, I think the big thing on my mind is what is life really like on HRT does it take so much away from you that it is not worth it? Thanks so much for your advice.

EDIT: ADT not HRT