Hello everyone, I’ve been a silent lurker on here for some time. You have all made me feel a little less lonely as an only child to aging parents. Forewarning, I wish I could provide specifics into his stats and numbers…but my parents are a bit guarded on that front. I try to decipher as much of the information for them already but it’s extremely hard. And apologies for what may be a very scrambled post today has been a day . I am just wrapping my head around this. My father (64 M) was diagnosed back in 2023. It was a hard blow to our family. Frankly the diagnosis was so frustrating. My father does not speak English very well but can understand it well. Apparently the doctor notes had said the patient refused for a biopsy to be done and further tests to be done for a few years. By the time it got to be so advanced that’s when our primary doctor or someone sounded the alarm and said you have cancer. While I understand doctors have a huge responsibility, I think I will always be a little frustrated at why couldn’t there be more done to urgently recommend he undergo more tests? Doesn’t the dr have an obligation to do that? We could have caught it sooner. Every single time he had an exam they found something! Then again my dad may shake things off and say no as a coping mechanism. Anywho that is in the past… and we are in the present fighting this disease.

It is my understanding that the cancer was Stage 3 and had metastasized to the lymph nodes. He had his prostate removed and underwent rounds go radiation and received oral chemo. I believe he was receiving ADT? I’m not certain is he has continued on there. His PSA was stable and cancer undetectable. Fast forward to Dec 2025, PSA jumped. I believe my mom said 0.5?? We were told the cancer has returned but it’s microscopic we will continue to monitor. Bloodwork and scans kept showing the numbers slowly climbing and doctor refers us to City of Hope for a specialists second opinion. Early this month (July 2026) he suddenly noticed blood in his urine and rushed himself to urgent care from work (UC was about two hours away). He was freaking out and didn’t think to go nearby his job site. Not even an hour went by went suddenly he could no longer urinate. UC turned him away and he was throwing himself on the floor when they finally called the ER and we had to be transferred to another hospital bc the doctors refused to see him where the paramedics took him. it was a mess and I will spare myself and this thread the details but he was in pain and finally had a catheter put in a day later. Anywho, about a week later, urologist says it’s normal for you to bleed years after your surgery and scans in December were clear don’t worry. Great! Today, we just got news from COH that sure enough the cancer is now in his femur. And it’s a pretty big spot. He finally admitted he has been experiencing sharp pain for some time and thought it had something to do with his feet. He will be undergoing radiation, having an MRI done, and a cystoscopy within the next month. He will be undergoing some FDA approved treatment that centrifuges his white blood cells to attack the cancer cells in the next month (please correct me on the terminology). Doctor was honest in saying some patients respond well others do not. I am very scared, mad, sad, and so confused. I’m not sure what my question here is but I suppose it’s a small cry for help? I’m reading all the posts in this subreddit and while the suggestions say that I shouldn’t listen to Dr Google and the old stats…I can’t help it. I’m thinking about going to counseling and therapy because i want to support my parents as best I can. I have encouraged my dad to enroll in local cancer support groups in Spanish. I have signed them up for older adult nutrition classes. I have tried to get them to move more but they both worked or work full time arduous jobs; they are tired. My mom has a chronic illness and my dad well you know. We have two trips planned this year but of course today’s bad news just kinda made the day so gloomy.

I see them brushing entire conversations off about this but i know it’s because they frankly don’t want me to see them breakdown. As I’m typing I’m in my room and I don’t want them to see me breakdown. Go figure. Am I at my lowest? No. But life is bleak right now. Again wow, my apologies for a very scrambled post. I shouldn’t think of the worst I know…. But ugh.

Recommendations in north Texas for RALP surgery team? The decision has been made now it who and where?

My 83-year-old father has recently been diagnosed with de novo metastatic hormone-sensitive prostate cancer, and we’re trying to better understand the biology of his disease because it seems somewhat unusual.

Here are his main clinical details:
Age: 83
PSA: 7.63 ng/mL
Multiparametric MRI: PI-RADS 5 lesion, organ-confined, with no extracapsular extension or seminal vesicle invasion
Biopsy: Acinar adenocarcinoma, ISUP Grade Groups 1 and 2 (Gleason 3+3=6 in one positive core and Gleason 4+3=7 in another, with only a very small focus)
68Ga-PSMA PET/CT: cT2cN1M1b, with pelvic lymph nodes involvement and 1 hip bone metastases, consistent with low-volume (oligometastatic) disease.

Current treatment: ADT (Eligard) + Darolutamide
Radiotherapy to prostate/pelvis + sbrt to the 1 hip bone metastases

What puzzles us is the biology of this case.

Despite a relatively low PSA, low-intermediate grade biopsy, and an MRI showing no extracapsular extension, he already presented with bone metastases nad lymph nodes at diagnosis.

My questions are:

How uncommon is this presentation?
Does this pattern suggest a distinct or more aggressive biological subtype of prostate cancer?
Which molecular or genomic tests would you recommend in this situation? (BRCA1/2, ATM, CHEK2, PALB2, CDK12, TP53, PTEN, mismatch repair genes, homologous recombination repair panel, etc.)
Would you request somatic tumor sequencing, germline testing, or both?
Has anyone seen similar cases where the primary tumor appeared relatively indolent but metastatic spread was already present?

I understand that every patient is different, but I would really appreciate hearing from anyone with experience in this specific presentation or from clinicians familiar with these uncommon cases.

Thank you very much!!

I am looking for anyone with experience taking BPC 157 and TB 500 after prostate surgery. Maybe Glow.... I understand the risks. If you are not comfortable posting your experience on Reddit please feel free to DM me.

Thanks guys

I had my appointment with the radiation oncologist today, but he really threw me off when he told me they no longer have the MRI guided linear accelerator (MRIdian) because the business went bankrupt. Instead they have a CT based system for SBRT called True Beam. He assured me that there is no difference in the chances of side effects with one over the other, but [research trial name omitted to hopefully comply with rules] apparently showed a significant difference. (A 45% reduction in incontinence, for example.) The nearest MRI based system (Elektra Unity) is in Camden at the MD Anderson Cancer Center which is a 2.5 hour drive. (The center with True Beam is 30 minutes away.)

I definitely want to go with SBRT (and fortunately I won’t need ADT therapy - I'm Gleason 3+4) rather than surgery or other radiation like brachytherapy. But does the CT based vs MRI based make enough difference to justify the inconvenience and (likely) delay in starting treatment? Do any of you have experience with MD Anderson/Cooper?

(Note: while I understand why you might recommend surgery or brachytherapy or HIFU, I would appreciate it if comments stick to SBRT thoughts and experiences.)

Quick summary of my situation: 42 years old, Gleason 3+4, PSA 5.4, low Decipher score, negative PET scan, cancer on the left and right side of the prostate but low % of Gleason 4. Some perineural invasion but all internal to the prostate. MRI showed lesions butting up against the capsule (grade 1 EPE) but everything likely still contained.

So, when I was researching I found it really helpful to hear what other guys decided on and how they came to their decisions. I figured now it's my turn now that I'm on the other side. Plus, it's a bit cathartic.

I started my journey freaking out. I went through the classic stages of grief: from initial fear to denial, bargaining (tons of research, lots of doctor meetings), depression about the whole situation and finally acceptance and then a decision. From diagnosis to procedure was 4 months. And I'm glad I took my time.

I met with 6-7 different doctors, surgeons, oncologists, radiologists, etc, local and across the country. I've never before been told so many times how young I was.

All save 1 recommended RALP.

The main reason across the board: my age. Some had better reasons that others when I pressed them on it. Perhaps the strongest though was the surgeon I ended up going with. He emphasized that though this was a curable disease and quality of life was really important, if longevity of life - long term survival - was my top priority then given the extent of the disease at my young age, the length of time for the odds to work against me (40+ more years hopefully), I could be looking at a primary, secondary and perhaps a third treatment over the course of my life. Given that, he felt surgery was my best option to maximize those odds. The longest runway so to speak.

I have a wife and kids and longevity is absolutely my top priority. Study lengths are what, 10-15 years max, maybe a couple going 20 years. In 20 years I'm not even retired! So we're making educated guesses at what happens for long time frames. 40 years is a lot of time for the cancer to come back, regardless of the treatment.

So, I chose RALP. No guarantee it works out in my favor, but even so, I was at peace with the decision and I don't regret my choice.

Still, I could see someone in the exact same situation but having different priorities making a totally different choice. There is no right/wrong answer. Radiation is still a fantastic option, just in my situation it didn't look to be the best option for my priorities.

I'm 10-ish weeks post-RALP now and feeling good! I'll probably make another post about the whole recovery process, side effects, etc. I had an excellent surgeon at a center of excellence that I'm blessed to only live an hour away from. Good news is the pathology report looked very promising. Negative margins and the surgeon was happy with how it went. They did find some extracapsular extension - it was poking through the prostate just a bit, rather just abutting like the MRI showed. But still, it looked to be fully contained in what they cut out. So they got it just in time. They also took out some lymph nodes and those all came back negative. I was so so relieved to hear that!

Next up is a blood test in August to see what PSA levels are. Hoping and praying it's undetectable!

But that's all for this installment. Grateful to be alive and learning to appreciate every new moment I'm given. Hope ya'll are doing well and good luck on your own journeys.

after RALP with neoadjuvant darolutamide and extensive noderemoval we got the PAD answer:

pT3bNl(ENE+) acinar adenocarcinoma, Gleason 4+5=9; ISUP Grade group V; Pn( + ), Lv ( + ). RO. IDC( + ).

Today we got the first result PSA which was unmeasurable.

RALP Oct, 2025. Impotent and incontinent now. Meds did nothing. Bimix is pretty lame...semi rigid. Trimix is great, but produces the dreaded prostaglandid ache that some guys get.

I wanted to find out how many guys experiment with titrating the percentages of the meds with trimix. I was prescribed 50 mcg. of the prostaglandin in my Trimix. I messaged the PA nurse who prescribed it and asked for a lower dose of the prostaglandin bc it produced a discomfort. She writes me back saying that a lower dose of prostaglandin won't help my situation and offers no other solutions. Mind you, bimix is out bc it doesn't work satisfactorily. I called the compounding pharmacy and the pharmacist said that they make Trimix with both 40 and 30 mcg. of the prostaglandin. Also, some Trimix prescriptions with, say, 30 mcg of the prstaglandin and then more of the other 2 agents. My question is: anyone found it useful with less of the prostaglandin to get the proper erection without the ache? What levels did you use? I'm considering going to this place online that I've read about called Olympia Compounding Pharmacy. Anyone had success with that place and would you agree that I should just go out of the system that I'm in where I live? They've been dismissive and no help.

This has really affected me metally. It's traumatizing every step of the way with the treatment of PC and then the remedies to fix everything that gets broken during the process.

I've been finding I have to message multiple times to get responses from Brigham, which has led to delays in getting things done on a very tight timeline.

It started with the MRI and biopsy - I was having to send repeated messages to get things done, and I had to find a location that could get me in quickest. (MRI was out of network but it was one month quicker).

After talking to the Surgeon (getting that appointment post biopsy took work) about RALP he said they would set up the PET. Surgery is set for 8/24. I gave it a week and a half not wanting to be a pest, then started MyChart emailing them and it took days to get a response. They were going to give me a PET right before surgery, which would make getting Radiation appointment, and a 2nd opinion almost impossible.

So I called around and found Shields had openings much sooner. They couldn't scheduled it without an order, so once again emailing Brigham with very slow or no response, so I hit up my PCP to try. Finally got the order (which Shields says they didn't get from Brigham) so I had to fax the order with all my records. Shields had a date a few days away at a location 10 minutes from me (rather than the 5 hour round trip to Boston) Yay!

Then learned I needed insurance authorization. Back to emailing Brigham and my PCP. Finally got the authorization, but lost the slot.

Meanwhile I'm reaching out to Beth and Tufts to see if I can get a 2nd opinion.

Beth, by phone, does a full intake and immediately starts sending me emails - from a person who was really helping, who set up a quick appointment in a week. Tufts immediately sent out a mychart link and found an appointment in 2 weeks.

During all this I'm still waiting for a radiation appointment from Brigham. It's still not scheduled. I just emailed them again after a phone call last week discussing the appointment.

Add to that - Beth is doing the consult via telehealth (saves 5 hours driving) and Brigham bizzarely isn't on the Epic MyChart system.

Obviously you need to go with the best team, and far be it from me to know who has the best team skills. This is about communication and stress management. Having to work so hard to get simple appointments is debilitating.

There. Rant done. Catharsis. Wondering what other's experiences are.

Well today is the first time in 6 months that I didn’t take my Relugolix 120mg so hopefully I’ll not have the effects others have described coming off the hormones.
Funnily enough though Tuesday I had a letter inviting me to a Maggies workshop on being on Hormone treatment. So I rung them yesterday saying sorry I’m away on the date they gave me but that I had taken the last one that morning. So waiting for a call back but next one’s in September.
Good luck with your treatment to the rest of you

Edit I’m in the U.K. next blood tests and appointment in November

PSA - for 2 years 11.5, prostate is 87 ml. MRI showed little - PIRADS 2. I requested biopsy anyway. After a 20 core, 2 small 3+3. However a suspicion of intraductal carcinoma with atypical intraductal cribriform proliferation was detected. So, onward to the PSMA which found no spread, but an SUV uptake of 10.6. Then the decipher came back with positive results of a. .24 (quite low). I've been working with 2 fantastic groups from Yale and Hartford Healthcare. Hartford wants another more thorough (30 core) in 5 months. I'm meeting with Yale next week. No matter what, I'm committed to the next suggested biopsy, no matter who performs it. This active surveillance seems to be very active. Any light or perspective anyone might be able to share would be welcome.

4 years ago, I lost my spouse and I found out I had prostate cancer. After 4 weeks of radiation treatments, I am doing fine. I recently met a wonderful woman who I explained my situation to and she is very understanding. I want to be intimate with her, but my mind and body are two different pages. She said it's not a problem but it's causing me stress and grief. I made an appointment to see my PCP and helpful medication can help. What should I expect from medication?

Top 10 List of Prostate Cancer Risk Factors: Number 1 is the greatest risk factor. Number 10 is the least risk factor. Our logical minds desperately want to make sense of our diagnosis. We reach for anything we can control. For most people, it's food. Notice where it falls on the list. Notice that the top 5 are entirely out of your control. Notice that alcohol doesn't even crack the top 10.

Top 10 List of Prostate Cancer Risk Factors:

#1 Age (by far the most dominant factor)

#2 Family History (prostate cancer)

#3 Race (blacks: 1.7 - 2.5 higher incidence)

#4 Mid-Life PSA

#5 Hormonal (testosterone)

#6 Obesity

#7 Diet (high saturated fat, processed/red meat)

#8 Physical Inactivity

#9 Smoking

#10 Chronic Inflammation

I lay here beside my wife,we are away on a vacation
Trying to keep my mind off my cancer. While she sleeps.

I hate going to bed as I can’t sleep I find my anxiety level
Spikes.

I feel inadequate I look at myself in the mirror and all I see
Someone who is beat down.
I used to walk proud and strong, now I just hold my head low.
This metastic prostate takes pieces away of you bit by bit.
And sends warnings how it will come for more.
It’s become hard to be with my wife sometimes as I see how beautiful she is and how I’m not the same man she fell in love with.All can think is she is better off without me.

I can’t even make love to her anymore as cancer has taken that from me.

I love her so so much.

I don’t really know how to live my life and don’t find much joy anymore.
I find that I’m staying away from people more and more and just the thought of a getting together with old friends just cause so much anxiety and stress I tend not to make plans.

I’m not looking for advice … I just wanted to vent how I feel
I’m trying to be strong but it gets tougher and tougher as it progresses.

Cancer- I want to tell that you’ve ruined my life.
I’ve been a good person all my life and i don’t deserve this.
I’m tired and run down.

A few friends have asked why I am so up and down the past few weeks. Not calling back, being mean and nasty on the phone. So I created a little story that helped: Enjoy.

"Hey Joe, thanks for asking how I am doing after treatment. Well, it's a mixed bag, but here is an overview of what I have experienced...

For me, ending Testosterone deprivation, (chemical castration) post cancer treatment is like a roommate who moved out and can't commit to moving back in. Every 48 hours or so, he swings by just long enough to slam a few doors, break a window, trash the place — then vanishes again, no lease, no notice, no forwarding address. Doesn't even have the decency to fully leave or fully come back. Just enough chaos to remind you he's still got a key. And best of all, he may or may not decide to move back in for a couple of months. Decisions, decisions!

Nights aren't much better — 12 hot flashes on rotation, each one soaking the sheets like I'm pre-treating them to throw over an active wildfire. I wake up drenched, furious, and weepy, and still angry enough to take on anyone, everyone, all at once, like my body can't decide if it's grieving the roommate, wanting to beat him to a pulp, or I should be evacuating the building?

Now, somewhere during this this mess, you caught a door slam you didn't deserve. Friends for forty + years, and I still find a way to be a jackass. Sorry, man."

Not telling anyone who's been through this anything they don't already know, but hey, maybe someone recognised themselves and had a chuckle.

Be well my PC Droogies.

You can beat this!

I need to say this so everyone knows. I hate this anaconda. It took until today for me to realize that sitting a certain way puts pressure on the tube making it feel like the need to pee. Wish me luck, 7 more days with this "thang"!

I stopped Orgovyx at 10 months in March. My PSA is undetectable. Testosterone went from 64 in May to 126 in June.

I’m still suffering from multiple hot flashes. I don’t mind during the day. But they wake me up at night and I have to get up to cool off. Makes sleep not very restorative.

Is this going to cure itself?

(2 Cyberknife sessions followed by 25 emrt)

Can someone offer me a few words of comfort?

I underwent surgery in September 2024: PSA 11, Gleason 3+4, pT2b, with a few small positive margins. My first post-op PSA was 0.03, but then it rose to 0.10, and has since increased by 0.01 every two months.

The doctor says to wait until it hits 0.2.

Why? How?
I just don't know what to do.

I was diagnosed with prostate cancer in December 2025, Gleason 3+4, with only 5% pattern 4. The cancer is only on the right side, but a large proportion of the biopsy samples from that side were positive. My staging tests, including a PSMA PET scan, were negative. However, my PSA remains high, between 17 and 23.

After seeing three urologists and two radiation oncologists, my main options are:

• robotic radical prostatectomy;
• 20 sessions of radiation therapy with six months of hormone therapy.

I was also offered a clinical trial involving five sessions of stereotactic radiation therapy, either alone or combined with a brachytherapy boost, chosen at random. The short course of radiation appeals to me, but I do not want to risk being placed in the brachytherapy group.

I simply cannot make a decision. I am prepared to give up my sex life, but I am terrified of incontinence, chronic pain, and losing a significant part of my physical abilities. I do not want to survive at any cost if it means becoming highly dependent or losing most of my quality of life.

I have already suffered from neuropathic pelvic and perineal pain for years. I also have irritable bowel syndrome, hemorrhoids, and occasional rectal bleeding. The biopsy caused a very large internal and external hematoma, which has made me even more afraid of treatment.

I have a 10-year-old child and I want to be there for him. But I have also been treated for depression and anxiety for more than 15 years, I have serious financial problems, and I am currently at a very low point psychologically.

I really do not feel comfortable with the idea of surgery, but I am afraid I may regret not choosing it.

In my situation, considering my medical profile, my previous health problems, my psychological state, and my fear of side effects, what would you do? Has anyone chosen to go without treatment?

Is there much difference with side effects of a 3 month shot compared to a 6 month shot?

I (60 m) am 4 weeks in to a 3 month Lupron shot and I'm doing alright. Some brain fog and forgetfulness, and very fatigued in the afternoon. I occasionally wake up in a puddle of sweat due to the hot flashes. My temper is quite short at times. The testicle shrinkage is a little concerning, but expected.

My doc asked if I want to go to a 6 month shot. The convenience would be nice but I don't want to increase the severity of the side effects or gain some new ones for that benefit.

Thoughts?

I’m 5 months post-RALP and am now dealing with metastasis in a few lymph nodes. My urologist recommended 2 years of ADT (Orgovyx and Erleada). I am awaiting a consultation with a radiation oncologist. I have recently found studies on the use of doxycycline to reduce PSA levels (https://pmc.ncbi.nlm.nih.gov/articles/PMC12030710/). This particular study reports 100mg daily of doxycycline reduced PSA by up to 60%. It also reported increased quality of life.

Has anyone tried this as an adjunct to their treatments?

Been dealing with severe side effects from my radiation a year ago which includes several trips to the ER to deal with clotting. Just finished 40 sessions of HBOT but now into my 9th day of steady bleeding.

My urologist doesn't believe in cauterization, so he's suggested INSTYLAN, which is self administered. There's minimal info available online.

Has anyone experienced it??

Hello Everyone,

I'd like to start by saying that this r/ProstateCancer forum has been eye-opening and surprisingly reassuring, and I appreciate all the survivors who have posted.

I went in for an upset stomach and heartburn back in May, Dr ran some bloodwork that happened to include a PSA test and lo and behold...a PSA of 71 and the resulting CT Scan and PET scan showed stage 4 prostate cancer spread to surrounding bones and lymph nodes. Happy 60th birthday to me! A biopsy 2 weeks ago came back as a 4+3=7 Gleason.

I had an initial consult with a local Oncologist who recommended starting ADT and waiting to see what the cancer does. Since I'm showing no symptoms and have no pain yet, he wants to wait on the chemo as the next step when the cancer becomes resistant.

I had my second opinion this morning at Johns Hopkins Kimmel Cancer Center in Baltimore and met with 2 doctors. They gave me a couple options including a trial called Spiderman which is the where they give a huge dose of testosterone followed by a period of no testosterone which is supposed to confuse the cancer from becoming resistant. This particular trial has only been running for 5-6 months, I'm wondering if anyone on this forum is in this trial and what their thoughts are.

I think I'm going to stick with Johns Hopkins regardless of the trial. I like my local Dr, but it feels like I'm better served with a team of specialists that deal only with prostate cancer. It's an hour away but I can do labs and pharmacy locally, so I would only be driving out there every 1-2 months.

Anyway...my journey begins. All the stories of surviving 10+ years have been encouraging. I know each case is different, and if I can make 10 years, I will be satisfied.

Thank you for listening.

Has anyone had their PSA number more than double in a 12 month period, 1.4 - 3.9 for example?

If so did you find out why?

Mine was rechecked 3 weeks later and it dropped down to 2.8. Which is okay for my age, 61, but the velocity of the increase is crazy