Welcome to r/ProstateCancer

August 1st I had RALP and I’ve done well with the process of recovering. I don’t have my first PSA check until the end of November which drives me crazy. I had 4 + 3 with tertiary 5 along with cribriform, positive margin, seminal vesicle invasion, and extracapsular extension. My lymph nodes were clean.

The Sloan Kettering nomogram calculator shows the probability of remaining recurrence free is 50% after 2 years, 27% after 5 years, and 15% after 10 years.

The Urologist from the James at OSU didn’t seem overly concerned about recurrence after our meeting to review the results from the RALP, but the last thing he said was I had a higher chance of PSA registering higher because of ‘everything I had going on’.

If my first PSA shows .2 or higher I highly suspect I’ll be referred to a radiation oncologist for options but what if it doesn’t show anything? I don’t want to push for further treatments but with the calculator showing such a high chance of recurrence do I just let it go and have it monitored?

Hello everyone,

I’m here looking for some insights and advice about my father’s recent prostate cancer journey. About a year and a half ago, he was diagnosed with prostate cancer, with an initial PSA level of 4.96. Since then, his PSA has risen to around 7. He's had an MRI, but it didn’t reveal any visible cancer, likely because it’s still small. Two biopsies have been done, and in the latest one, a core sample showed over 50% cancerous tissue.

From the start, my father opted for Active Surveillance as his treatment approach. He’s 54, healthy, and feels well overall. However, given the recent biopsy result, we’re now facing a new decision. The core with over 50% cancerous tissue seems to suggest that Active Surveillance may no longer be the best option. He's now leaning towards starting brachytherapy. This week, he has an appointment for an ultrasound to map out the treatment, and the next step would involve placing the brachytherapy seeds.

One of our main questions is whether this core result—having over 50% cancerous tissue—warrants ending Active Surveillance. For context, his Gleason score is 3+3, which we know is relatively low. Out of the 12 biopsy cores taken, only 3 showed cancerous tissue. Still, with this notable increase in PSA and the significant presence of cancer in one of the cores, it feels like a compelling case to switch approaches.

I'd really appreciate any advice or similar experiences regarding this decision. Do you think the current indicators are enough to justify the shift from Active Surveillance to brachytherapy? Has anyone had a similar situation where Active Surveillance was reconsidered, especially with a low Gleason score?

Thank you all in advance! Your thoughts and experiences would mean a lot to us.

I’ve posted a couple of times here and am struggling after spending a day of internet reading up on everything.

I’m based in Canada and am grateful for our health care system. However, there are long wait times for MRI particularly where I live.

It seems like some doctors and urologists post on this forum which is very generous. My open question is : how likely is it that I might be in trouble with PSA that has progressively increased to 6.5? Is it possible it could be something else?

I’m 51 yo, exc health, don’t smoke and quit alcohol 14 years ago. Used to run marathons but shifted to hiking and calisthenic work outs. I have been eating a high protein diet with beef/chicken for past 2 years which I will now shift. No prostate issues in my family. I have had some issues with solid erections and have tried cialis which has been helpful. Urine flow hasn’t been as strong as younger years, but no other noticeable issues.

Waiting for my biopsy appointment has already created anxiety. Trying to keep everything in perspective. Truly appreciate all the helpful information here.

My brother just had a mri done and it came back with 2 lesions listed as level 4. His psa was 0.88. He has been having issues with hemorrhoids and anal fissures and they have lasted a year so his doctor sent him to a urologist who requested the MRI. His blood work is all normal. They did a urine dip stick and he had trace amount of blood in urine. On his MRI they noted his bladder wall was thickend but they said to just watch it and weren’t worried. He’s had some issues with painful ejaculations once in a while and when he urinates the stream is not steady. He’s 41. He’s freaking out, and so are we. He goes in for a biopsy next week then the week after he has a follow up. Our moms moms brother had prostate cancer and so did his dad but all of them were diagnosed well after there 50s. What are the chances this is actually prostate cancer? Could this just be an untreated infection? With all the cancer that runs in our family we are all extremely worried and can’t find peace. He’s so young, healthy. Just looking for some kind of positive stories. Also notes in the MRI say the prostate is not enlarged either, idk how that’s possible if he has 2 spots. Been crying worried sick daily.

How many of you had an eventual recurrence with a post-op PSA of <0.01? I’m talking guys with no radiation or ADT before the recurrence. If so, what were your details…. Gleason, time to recurrence, pathology etc etc.? Thanks.

I am 47 years old. My psa has gone from 1.7 to 2.4 in the last 10 months. Just got MRI results back with one pirad 5 lesion and two pirad 4 lesions and no other abnormalities. Had a CT last week that came back normal. I know I need a biopsy which will likely be followed by a PET Scan. But for the last month and a half I have been having pain below my belly button, in my hips and pelvis, in my penis, above my left knee, and around my genital area. From what you all know, is there a good chance this is metastatic pain even though my psa is only 2.4 and my scans showed no spread or other abnormalities? Any thoughts are greatly appreciated.

Greetings!

Biopsy was this past Monday and got the Histology report Thursday. Follow up with doctor is Wed.

Here is my confusion.

All zones came back as benign.

But there is one annotation: Perineural Invasion at Apex.

No scoring, no other notes.

It appears PNI is a secondary diagnosis and not primary, so what the heck? Is it possible all cores missed a cancerous sample?

I know this forum can’t diagnose or interpret, but I am trying to formulate Q&A with the doc.

My husband is thinking of ending his Chemo next month as the doctors have spoken about quality of life & I would like to know what time frame we are looking at?

As the title states, I am looking for advice. I am having a hard time getting my doctors to take me serious and I have concerns that such an acute change in my urination is more then just an enlarged prostate.

For context, I started seeing a urologist back in June. I had a dirt bike accident and the next day passed what a kidney stone. It was super painful. I went to my primary care doctor who saw blood in my urine and referred me to a urologist. I had my first appointment which results in a CT scan to see if I had any kidney stones. The results came back that I didn't have any and that was it.

Mid September I noticed that at times I had a hard time starting to urinate. However, it wasn't consistent. I also started noticing my stream was inconsistent as well. Sometimes, normal. Other times, dribbles. I decided to see my urologist again in October. He prescribed Alfuzosin and said let's sync up in 30 days.

What is bothering me as any concerns I raised were completely dismissed. I went with concerns about maybe a new kidney stone and instead was advised not to worry that an enlarged prostate isn't cancer. It wasn't even on my mind, and concerns I had were simply dismissed.

I am thinking of getting a second opinion as I am at the point that I feel like my body isn't producing urine anymore. Everything I have read about an enlarged prostate seems to point to urgency of going and I have actually lost the urgency to go all together.

I am turnning to this sub as I can imagine a lot of people here have had a lot of experience with doctors. Any advice on how to be best heard when working with doctors?

I am almost 100% sure I will have the prostectomy. So I would like to ask if everything goes well what is the down time after surgery? Hiw long am I realistically looking at being off work?

I am nine weeks post RALP and have been doing pretty well. I have been gradually picking up my activity and working out more, the incontinence has been gradually getting better and I have been feeling good. Then out of the blue this morning I am peeing some blood which kinda freaked me out because even post surgery once the catheter was out my urine has been clean and clear. I have messaged my physician about it but of course it is Saturday. I am just wondering if anyone else out there has had any similar experience? Thanks

I am turning 40 and a concern I have is prostate health as I have family members who had to get surgery due to prostate growing too big. I read somewhere that the more bodyweight you gain the more the prostate grows, but not sure if this is true and if it applies to lifters. What I mean is, I heard that obesity has a direct effect on prostate growth. I was not sure if for example a football player who has a higher than normal Body Mass Index (due to mostly muscle) would be at risk for prostate growth?

I also don't have a very ripped body like a bodyuilder. I have your typical strongman/powerlifter build, muscle with a little bit of a belly showing (picture eddie hall before he cut down for MMA). Even though Eddie Hall had a belly before he didnt look obsese, I know many nfl football players have a build like him on the front D or offense line. I would guess my body fat percentage is about 25% to 30%.

My only concern is if the prostate is at risk of growing too much if I continue to pack and muscle over the long run, even if some fat comes up with it too.

I know there is a clear difference between a couch potato who gains weight purely on fat vs an athlete such as powerlifter or strongman that gains bodyweight from training.

Little about my situation.

50m, got officially diagnosed back in April. Opted for the robotic prostatectomy radical lymph node dissection. Had Surgery on October 8th. My 2-4 hour procedure took 11 hours due to my prostate being much larger than expected.

Was in the hospital for 4 days and had the catheter in for 28 days. For the most part I feeling fine, no more pain, got full range of motions.

Catheter was taken out on Wednesday of this week.

My questions are this.

I'm leaking like crazy. I've gone though a whole bag of depends in just two days. I haven't been able to manually urinate at all and I feel like the only thing that has any control of my bladder is gravity. Anytime I get up automatic faucet.

I'll called my doctors office twice and each time they said that leakage is normal.

Am I being paranoid or is this actually normal?

Thanks in advance for any feedback.

Edit: Thank you all for the responses and the words of encouragement. I really needed it! I'll be doing my kagels as much as possible, giving myself time and panicking a lot less now.

Hello again,

Obviously hindsight is 20/20. After reading this forum all day, I’m concerned my doctor might have used poor judgement.

In 2022 my PSA was 3.8, 2023 was 4.5, and now 2024 6.5. This was part of my yearly blood work/medical.

At the time, he said PSA tests can have a lot of factors that impact them, and that he wasn’t overly concerned with the numbers. I trusted his judgement and didn’t look into it. Now thanks to this forum I’m seeing that anything over 2.5 is a concern. I would’ve expressed greater concern in 2022 had I know the importance of these numbers.

I’m curious if anyone else has a similar story or experience.

Hi all! My dad (67) was just diagnosed with prostate cancer (adenocarcinoma) today after a biopsy last week. If anyone could help interpret the following results from the MRI and biopsy that would be helpful. They have not staged it yet, and we are awaiting a PET scan next Wednesday (Nov. 13) and follow up with urologist Friday. It seems that it has invaded the seminal vesicle, making it at least Stage III B to my understanding, but there is concern for urethra invasion as well. If anyone has any advice on what to expect or how to approach this new diagnosis, oncologist/surgeon recommendations and how to reach out (we are based in western KY but willing to travel), or just positive words, it would be much appreciated.

PSA: 11.1

MRI FINDINGS:

Prostate size and volume - 4.9 x 4.6 x 3.7 cm

Lesion # 1:

Location - Left anterolateral PZ, apex to base

Size: 35 x 22 x 28 mm. The lesion causes mass effect on the urethra and may be invading it.

T2: Intermediate signal with indistinct margins

DWI: Diffusion restriction with corresponding low signal on ADC map

DCE: +

Prostate margin: extracapsular spread likely on left

Lesion PI-RADS category: 5

Neurovascular bundles: not grossly involved

Seminal Vesicles: Direct tumor extension to involve left SV

Lymph nodes: no adenopathy detected

Other pelvic organs: negative

Osseous structures: no bone metastases observed

Impression - PI-RADS 5 lesion left peripheral zone with extracapsular extension and left seminal vesicle involvement. Suspect urethral invasion.

BIOPSY FINDINGS:

1. Left Lateral Base:

Adenocarcinoma, Gleason 4+4=8 involving 1 core; core involvement: 90% (9.46 mm) discontinuous.

2. Left Lateral Mid:

Adenocarcinoma, Gleason 4+5=9 (30% pattern 5) involving 1 core; core involvement: 95% (14.8 mm)

3. Left Lateral Apex:

Adenocarcinoma, Gleason 4+5=9 (20% pattern 5) involving 1 core; core involvement: 75% (10.7 mm)

4. Left Base:

Adenocarcinoma, Gleason 4+5=9 (20% pattern 5) involving 1 core; core involvement: 95% (13.3 mm)

5. Left Mid:

Adenocarcinoma, Gleason 4+3=7 (70% pattern 4) involving 1 core; Core involvement: 95% (10 mm)

6. Left Apex:

Adenocarcinoma, Gleason 4+5 = 9 (30% pattern 5) involving 1 core; Core involvement: 55% (8.46 mm)

7. Right Base:

Benign prostatic tissue

8. Right Mid:

Small Focus of Atypical Glands, Suspicious for Carcinoma

9. Right Apex:

Benign prostatic tissue

10. Right Lateral Base:

Benign prostatic tissue

11. Right Lateral Mid:

Benign prostatic tissue

12. Right Lateral Apex

Benign prostatic tissue

13. Region of interest:

Adenocarcinoma, Gleason 4+5=9 (40% pattern 5) involving all cores; tissue involvement: 100% (30 mm)

COMMENTS:

Multiple immunohistochemistry for p63,CK34bE12 and p504S performed on block 1A with appropriate controls reveals p63/CK+ basal cell to be absent and p5042 positive in carcinoma. 7A reveals only one gland lacking CK34+ basal cells

Hard to find good info on this. Anyone have recommendations?

Anyone know what a RALP costs at MSK? I live outside the U.S. so have no insurance for this. Do they ever discount for cash payers with no insurance and/or participating in their clinical trials (if appropriate for my situation).

I’m considering surgery option over radiation. I’m speaking with doctors at NYU and MSK. Anyone have thoughts or experiences with NYU? Most discussions here have pointed to MSK for the top care and experience. It’s been difficult to get appointments at MSK. Should I wait it out for another 3 weeks for the initial treatment consultation at MSK or move ahead with scheduling surgery at NYU? I also don’t know how far out surgery appointments are. What else should I be considering?

Hi all,

Appreciate all the helpful info on this forum. I’m a healthy 51 yo, and my PSA has increased over 2 years of bloodwork to 6.3 My urologist ordered a biopsy.

From reading here, many of you had an MRI ordered first. Is this generally the approach? Should I request an MRI?

Fyi, i do almost all the cooking so this responsibilty is something im taking on

My brother had his biopsy, 8 out of 12 cores positive. Highest Gleason score 4+3= 7. PSA 26. Path report states cribriform pattern also seminal vesicle involvement. We are seeing his dr this coming Friday. What questions should we ask, for those who have through this.

Trying to prepare for what’s coming, my brother is my mom’s main caregiver and my husband has Alzheimer’s. So the more prepared the better.

Thanks for any help and advice you can give.

Hi All,

Its been two two weeks since my 28 sessions of EBRT ended. I'm feeling good besides peeing more , which the urologist prescribed two meds. The other issue is my blood pressure is up and it seems like my heartbeat is racing at times. Has anyone else had the issue with their blood pressure going up or heartbeat racing? I've never had problems with my blood pressure or heartbeat racing before treatment.

This forum has be a wonderful resource for me and I'm thankful for all who shared their stories and input. Continue to be strong and march on. I'm grateful to all.

Gents (+caretakers +others!): I'm looking forward to stepping out of my stylish Tena briefs and into something more for just occasional leakage.

Pads seem interesting (but incompatible with my old preference of loose briefs) so I'm looking at absorbent/washable/reusable (almost 'normal!) skivies to handle what I expect to be a lifetime of accidental/occasional leakage.

Any brand experiences out there? Good or bad?

Thanks!

...and update FWIW: RALP 31OCT, catheter removed a week later and am running mostly dry overnight! Pathology = 4+3 and clear margins, no spread to removed lymph nodes. (I hope I have a lot of lymph nodes because they sure pulled out a bucket full)

I had surgery almost two years ago. I had PSA tests every three months for the first year. Then every 6 months and now my urologist is comfortable testing every year. So it seems the more rime that passes after surgery there is supposed to be less risk of recurrence and you don't have to test PSA as often. However when I use the nomogram from Sloan Kettering, my risk of recurrence is 5yr 6% 7yr 10% 10 yr 16%

The risk seems constant for the next 10 years. So why do we get tested less often?

In this week's Science journal, there is an interesting article on an experiment on the effects of supplemental Vitamin K3 on metastatic prostate cancer in mice. The researchers found significant prostate cancer cell death and improved survivability in treated mice versus those receiving a placebo.
A few interesting points that I (a non-scientist, non-doctor) draw from this:

• This is a mouse study, but it will be very interesting to see if researchers try the same supplementation on men (and what those results are).
• Vitamin K3 is normally a transient intermediate form between Vitamins K1 and K2. It has liver toxicity in humans, so is not available OTC in the US as a supplement.
• The researchers were prompted to conduct this trial because Vitamin K3 is a pro-oxidant, and the SELECT trial (whose results were published in 2011) showed that the antioxidant Vitamin E significantly increased cancer risk. (So, maybe take the widespread advice to bulk up with antioxidants in your diet with a grain of salt.)

Here's a link to the Science summary article (not sure if it's behind a paywall; I'm a subscriber): https://www.science.org/doi/10.1126/science.adt2538

For those who had a prostatectomy and were taking blood pressure medicine and started taking Cialis 5mg did you see an improvement in your blood pressure? My bp has dropped to 110/70

Today is the second anniversary of my RALP at Moffitt in Tampa Florida. I remain cancer free! I still have severe ED but have not given up on getting the old guy to revive. I can still orgasm and life is good! Many thanks to everyone I’ve met here. Y’all are Angels. My best to all on this journey.

Gleason 9. ONC states Very High Grade with metastasis to local LN and LN above aortic bifurcation. (bones clear per PSMA).

PSA drop from 22.8 to .4 (good).

Treatment plan:

1 month bicalutamide then

Eligard and Zytiga combined.

Radiation 28 sessions

1 week after fiduciary markers placed, I was admitted to ER with a bad UTI. Painful peeing with blood and tissue matter. AGAR plate showed e-coli! WTF? Never had a UTI.

One week after 2nd Eligard injection a weird headache showed up. When I would bend over, instant pressure migraine that goes away quickly. Stand up after driving to 1st Radiation treatment, instant pressure migraine. Accidentally bump head getting into car, same thing. Plus I had chills. Like a flu. Spoke to doc after 1st rad treatment. She said go see PCP or Urgent Care. Urgent Care saw me and sent me to ER.

ER ran tests (Head CT and CT with contrast, blood etc.). No strep. No flu. No COVID. No blood clots. Admitted to hospital. They ran an MRI with contrast. Brain OK. ONC doc must have heard I was in hospital and shut off Zytiga. Still have chills but migraine thing subsided at hospital. No clue what caused it.

4 rad treatments done and aside from general tiredness (already), I have this odd lump/heartburn feeling in my chest. Concern because they are zapping a couple LN near my decending aorta. Doc and other assure me it is OK to to so.

So....I don't have a good feeling about this, but at the same to I am questioning my feelings. Am I being a baby and should just suck it up?

Anyone else had a similar experience?

Sorry for the wall of text.

Would love to hear from anyone with any of these experiences:

1. Undergone/undergoing focal cryotherapy anywhere, especially at MD Anderson (MDA)
2. Participated/participating in a clinical trial
3. Is participating in Dr. Gregg’s focal cryotherapy clinical trial at MDA

Hi,

I have had issues peeing for a long time. I have to sit as it just dribbles out and makes a mess. It also takes a long time to get going. I was referred to a urologist 4 months ago my psa was 1.5, 2 weeks ago it was 4.25 and this week it was 2.75. He has done a Cystoscopy and said my prostate is larger than he thought it would be. He also performed a DRE. The urologist is scheduling a MRI and then he wants to do a biopsy. He really seems concerned which is good I suppose but I know it’s super rare for someone my age to have prostate cancer. I guess I’ll find out soon enough. I asked him if it could be an infection he said I’d have pain down there but I have no pain. He said he’s hoping if anything it is Benign prostatic hyperplasia or said I could just be a dude with a high psa. Anyways I really don’t have anyone to talk about it with so just wanted to share what I’m currently going through.

Thanks for reading!