Welcome to r/ProstateCancer

Hi all,

Had a conversation with my dad yesterday (76 years old). He recently got his lab results back. His PSA levels are at 66. He claims he doesn't have any symptoms, but he wasn't in the best of health to begin with (had Multiple myeloma diagnosis 10 years ago for which he received radiation treatment).

Part of me is wondering if he could have meant 6.6 and during our conversation I asked him if it's possible that he could have gotten something mixed up. I asked him if he has a print out from the doctor that he could show me but he didn't have one. 66 seems insanely high and I'm wondering if it's even possible to have a PSA level that high. He mentioned that the doctors are shocked he doesn't have any symptoms considering his elevated PSA levels (whether it's 6.6 or 66) and he's going for a biopsy in mid-February.

On another note, what's the best way to support him at this time? My dad is divorced, lives alone, and is pretty adamant about continuing to work. But if the results are anything to go off of, then we need to have a talk about him moving in with my husband and me like ASAP, right? I don't want to take away his independence (if he moves where I live he won't be able to work in his profession) but judging from the tests, this seems... not good.

Sorry for any dumb questions, I literally just found out yesterday.

I first want to say thank you, this forum helped support me so much in providing some hope and being able to prepare for the worst in case positive for PCa. I feel incredibly lucky and relieved that my biopsy came back negative, yet also some guilt, as almost all of you didn't escape this terrible disease. Life is definitely not fair.

At this point, does it make sense to get a re-read at major cancer center?

As background - Kaiser's PCa Risk Calculstor v2.0 had me at 21% likely high grade cancer and 40% any grade prior to my MRI that then revealed 2x Pi-Rad 3s, a Pi-Rad 4, and another suspicious area. I had a 22 core TP fusion biopsy. All cores came back benign. There were not any comments about suspicious samples.

Much appreciated!

Hi All,

I read a lot in the internet that prostrate cancers cells need BCAA to grow. However most whey protein powder contain BCAA. My dad is loosing a lot of weight and needs a lot of protein. Any recommendation for protein powder? Should we watch out for BCAA and Glutamine in protein powders? Plant protein is known to have less BCAA but my dad doesn’t like the taste. I was looking at 100% whey isolate in the brand optimum nutrition but it has BCAA and Glutamine both of which I read is not good for people with prostrate cancer. How do you achieve your daily protein intake levels?

P.S. We are vegetarians

Hello all thank you for taking the time to read my post. I just received my dad's MRI results and I'm very concerned. He only began going to the doctor again about 2 years ago and had a PSA level of about 9 which led him to be referred to a Urologist. After monitoring for about 2 years of PSA levels going up and down, I got a second opinion from another Urologist who suggested an MRI. I'll post the results below.

I'm concerned because it seems it has spread outside the prostate and into the seminal vesicle. I'm assuming Stage IIIb? I told him this can be cured and I'm trying to be very positive. but I'm learning as I go.

Can someone please give me some hope...

He has a follow up appointment with his Urologist in the middle of March. Should I try to get a sooner appointment or is this ok?

"Age: 67
CLINICAL HISTORY: Prostate Cancer

PSA 9.4 ng/mL (9/27/2024)

FINDINGS:

Quality: Excellent

The prostate measures 31 g based on contour, (4.3 cm x 3.6 cm x 3.8 cm).

PSA Density 0.30 ng/mL/cc

The background transition zone is enlarged and heterogeneous. The background peripheral zone is heterogeneous with linear and wedge-shaped foci of T2 hypointensity, consistent with sequela of prior prostatitis.

The following appears suspicious (PI-RADS 3, 4, or 5):

Target #1/ ROI #1 (3D T2 slice #22)

Location: right posterolateral peripheral midgland to base.

Clock-face axial location: 6-9 o'clock.

Cranio-caudal location: 35-85% of distance from apex to base.

Longest diameter: 2.4 cm.

Capsular involvement: minimal extracapsular extension that approaches and likely involves the neurovascular bundle, particularly at the apical midgland (8-31).

T2 signal: irregular markedly hypointense signal with irregular margins, 5/5 suspicion.

Diffusion-weighted imaging: focal markedly hyperintense high B-value DWI and markedly hypointense ADC, 650 square microns/second, 5/5 suspicion.

Dynamic contrast-enhanced perfusion: early, intense with plateau positive.*

Enhancement kinetics: Ktrans 0.107, Kep 0.655, iAUC 2.850.

Suspicion for extracapsular extension: 5 (1 = very low suspicion, 2 = unlikely, 3 = intermediate suspicion, 4 = likely, 5 = definite).

Suspicion for neurovascular bundle involvement: 3 (1 = none, 2 = possible, 3 = highly likely).

Suspicion for seminal vesicle invasion: 4 (1 = very low suspicion, 2 = unlikely, 3 = intermediate suspicion, 4 = likely, 5 = definite).

Overall PI-RADSv2.1 Score: 5/5 (1=very low suspicion, 5=very highly suspicious).

Overall UCLA Score: 5/5 (1 = very low suspicion, 5 = very highly suspicious).

Limited views of the pelvis reveal no enlarged lymph nodes. No focal bone lesions are present.

IMPRESSION:

1. Focal findings suspicious for neoplasia with a PI-RADS 5 lesion in the right posterolateral peripheral midgland to base.

2. Capsular margin: suggestion of capsular, neurovascular bundle, and seminal vesicle involvement as described above.

Overall PI-RADS Category: 5/5"

Could you kindly advise what hospital you're being treated at and/or recommend a good specialist? Happy to chat in private messages! Thanks in advance

Hi all, As an update, been going to a PT and she never did the “probe”, but with the exercises I have been getting better at the leaking department. My question is based on your experience, does the small leak while coughing and sneezing ever go away? I still have those but was wondering. Thanks!

My RALP was Tuesday, and my pathology just came back recently, and I’m just… sad. Got raised to Gleason 9, there was one lymph node they tested out of four that was positive, there was Extraprostatic extension identified, Bilateral seminal vesicle invasion identified. They took the nerves it sounds like. No wide spread action according to the PET scan I did a couple months ago but it did get out of the prostate, which wasn’t on the PSMA. I’m imagining this shit is not over. I don’t know if it will ever be over. I can’t really find much online that is making me feel hopeful about this. It’s not metastatic but it seems like it’s pretty close to it. I’m 51, my last PSA I did was 14 point something. PT3b currently I guess. I’m sitting here in my front room with a tube in my dick and a piss bag hanging off of a plastic bucket feeling like all of this horseshit was a waste because I have to likely do years of ADT and a bunch of radiation anyway. I feel like such a fuckup by not getting the PSA sooner, and i think I might have just killed myself with my ineptitude. Trying to find some sun in all this darkness. I’ll fight it, but damn.

Hello guys first time posting here. My dad had elevated PSA up to 42 few 3 years back and due to relocation he never had the time to follow up. His MRI then did not show any lesion, just enlarge prostate. Last checked was July 2024 and his level was 34. So he went for another MRI as the new urologist wasn’t quite ok with that level. And then he had a multiparametric MRI which the former urologist said he had before but didn’t show anything there. Sadly, that urologist never did a rectal exam on him. This time it was PI-RADS 5, and this new urologist said he felt a nodule on the left on his rectal exam. So he recommended a prostate biopsy. And due to losing his insurance that couldn’t be done until this month when I could find him another insurance.

The biopsy results show samples areas of benign prostatic tissues and ASAP(atypical small acinar proliferation), 2 Gleason 6(3+3) 1-5% of parenchyma, 3 Gleason 7 (41-90% involvement grade 1-3). And 1 Gleason 9 (4+5) grade 5 with 90% involvement 3/3 core.

There is also large cribriform pattern 4 and perineural invasion.

Please what does all these means, and what test should be done from here guys?

My dad has been having waist weakness for almost 5 years now, and he can barely walk a block without having to sit down. He falls at time sue weakness in his legs.

Any input is appreciated. We are going to see the urologist next week.

Thank you!

Let me know what tips you have and help with understanding day by day, first few weeks, few months, and then year out.

Just had my first detectable PSA since surgery. 0.014 on the Labcorp ultrasensitive test. Prior tests had all been <0.006. 😧

Quite possible that this is just a blip, but subsequent tests will tell the tale. My positive margin possibly rearing its ugly head.

Of course, the text I get from the doc’s office is: “You are still undetectable and have a reading <0.1. Test again in 4-6 months.” That’s bad info because I AM detectable, just below any threshold of doing anything about it. I don’t like them trying to reduce anxiety with comments like that. The correct thing to say would’ve been, “Just letting you know that you did move up a little on this test. It may be nothing, but we will have to watch your next uPSA tests very closely.”

In any event, I know a lot of you guys have seen spikes like this and went back down, so hopefully that’ll be my case. If not, the Radiation Man cometh in the future.

I posted before about my dad's stats and everyone was trying to be positive with "you don't know until you know" ...well now we do.

Bone and CT scans gave false hope in being clear but the PSMA scan showed mets on his hip bone, rib, lymph node sternum and arm bone. My dad was told surgery is not an option, it was too vast of an area to do radiation and he will have to be on hormone therapies for life. I tried to find posts about people who have maintained good quality of life after this kind of diagnosis and that is not what I found. Its just stories of men who really struggled with side effects and then became castration resistant. I feel like this is the start of a long road of watching my dad struggle and that is the only path this can take. He is 70 which means positive stories for people around his age are even harder to find. Everyone I know in real life who has had or known someone with prostate cancer has beat it. I am angry that we don't get that ending.

I don't know what I'm looking for here. I guess positive stories or something to give me some hope because "incurable" was not on my bingo card and I am really struggling.

(I am Canadian)

I’m a 52 yo male, quite healthy but could improve gym commitment (not overweight). I don’t smoke or drink.

This past year my PSA has floated between 4.5-6.1. Symptoms include long post dribble urination and inconsistent erections. No pain in prostate area. I had a regular MRI which proved inconclusive. I’ve been scheduled for a ‘regular’ needle biopsy (can’t remember exact name, but standard)

My numbers:

Free prostatic antigen 0.72

PSA FREE/TOTAL 0.13

PSA 5.30

My urologist wants to rule out PC and see if it’s simply an enlarged prostate. The weight via MRI was 53 grams.

My question: could a needle biopsy cause damage to prostate and cause future complications? Should I monitor my numbers and symptoms for now, and get biopsy of numbers get worse? I’ve been briefed on Feb possibility of infection.

Any insight appreciated, thank you .

Had my bone scan the other day and received my preliminary results: “No scintigraphic evidence of osteoblastic metastatic disease.” The journey is not over, but taking this as a small win for now. Thanks to all of you who help keep my spirits up. 🤗

Hey guys. I did a second test on 1/31 and it shows .2

First test on 10/4 after RALP showed <.04

Should I be worried about this?

Thanks

Disgnosed recently after second biopsy, I was excitied to read about focal treatment, however it is not available in our country. My consultant is receommending RALP, though life with this seems challening. I would be willing to travel and pay for focal treatment, considering, Tulsa or Nano Knife.

July 2024, PI-RADS 2 or 3 lesion within the prostate.  First transperneal biopsy in July which showed 9 cores of Gleason 3 +3 grade group one prostate cancer. 

January 2025, confirmatory biopsy which shows an upgrading of disease. Has 7 cores of Gleason 3 +4 grade group two disease on the right hand side of prostate.  Also has 3 +3 disease Grade group one disease on his left hand side. 12 of the 20 cores

Quality of life is a big factor, I am active fit and find this difficult to take.

Love to hear any thoughts, I am seeing a few consultants soon, but I value feedback here.

Any recommendations about better apps that are available to record information about prostate cancer?

I'm thinking of those that might be good for logging PSA values; diagnosis data; appointments; active surveillance; questions I might want to raise with my medical team; possible treatment thoughts; post odd issues; successes and achievements; medicines; ...

Hello. I am 52 yrs old and have had prostate cancer for 2.5 years. I was originally diagnosed with 3+3 localized and was doing active surveillance at MSKCC. The latest biopsy showed a change from one of the cores to a 3+4 still localized. I was offered surgery or radiation treatments and I am opting with radiation. I was given the option of HDR brachytherapy or proton therapy. I am presently leaning towards the brachytherapy but was hoping to get opinions based on past experiences. If anyone can share their experiences It would be much appreciated. I am very interested in lasting side effects of either treatment and whether it was successful. Thanks

Just wanted to make sure everyone on Xtandi is aware of the possibility of developing nueroendocrine cancer as a side effect. It is rare but as more and more people are on this drug for longer and longer it is becoming more prevelant. Make sure you are getting follow up pet scans and not just relying on PSA numbers as it will not be detected by PSA. Good luck out there guys and hopefully you are able to advocate for yourselves or have a loved one be your advocate.

I am scheduled for RALP 2/18. I usually get a massage every 3-4 weeks and would like to continue. I'm sure that it all depends on how well my stomach is feeling overall. I guess my main concern other than how long is having to wear a diaper or a pad for leaking. I'm sure that others have worn underwear or a diaper during a massage... just not something I usually do.

How soon after your RALP did you start having massages again?

On day 1 of Abiraterone and Prednisone and I’m seeing elevated BG and spices much higher than I would typically have (I have a CGM). Has anyone seen this on the onset of Abiraterone therapy and will it get better over time ? Any input is much appreciated.

As of 2and January I'm a paid up member of the club, had my card punched 16 times and 8 positive with a 4+5. Anyway, friend of mine mentioned Coley's toxins, a pre radiotherapy attempt at curing our affliction and I wondered if there was any modern day equivalent being used today.

Anyone familiar with this treatment?

Hey everyone, now before you say it I fully understand that I’m “too young to be thinking about this” and I fully understand nobody here are professional doctors; however I’m not looking for a diagnosis, I’m just seeking solace and reassurance more than anything as I feel I’m slowly going insane with anxiety.

So over 3 weeks ago I randomly started getting severe shooting pains intermittently in my left testicle. I don’t think anything of it until my wee started to burn and had a few more pains. I’ve been evaluated by 3 seperate GP’s who all rules out testicular cancer, however one thought it was a UTI, one thought it was epididymitis and the other thinks it’s musculoskeletal - even after me basically pleading with them that I think it’s prostate related. The reason for this is I’m urinating a lot more frequently, sometimes having to wait a while for the wee to come out and always having to shake forever as I will almost always dribble.

However my most pressing concern is my severe pain in my body. My back pain is crippling me, it’s now radiated to the back of my ribs, my kidney area, my hip/pelvis. Every day is a constant struggle, and upon learning more about the prostate I know that if PC spreads it almost always goes to the bones and causing pains which I’m having right now.

I’m scared as I’ve seen 3 doctors all of which just basically keep batting away the possibility of it being prostate cancer due to my age. I don’t know my father and therefore don’t know his medical history either. They have booked me for a scan for my testicles but god knows how long that will be, and I know I can’t keep going on like this with this pain and fear.

I’m planning to book a private ultrasound which checks my kidney and prostate and hopefully I can get a PSA done privately as the NHS are adamant they don’t want to give me one. I’m a new father to a 4 month old baby and this is the most scared I’ve ever been for my health.

I had an appointment at Johns Hopkins this week. The doctor had a patient in front of me with a similar profile. 65 yo; 3+4;. The doc mentioned to him he is going to see another patient (me) with a similar profile. The guy offered to speak to me, patient to patient. He told me he was 5 1/2 weeks post surgery. Completely dry in 4 weeks and regained his sex life. It was good to hear a positive story.

Anyone have experience with mood swings while on ADT? 5 months into Lupron and in addition to fatigue I seem to have temper issues (funk; arguing) about once a month.

Hello Good Wise Men!

Hi. Spouse here with 68 year old husband who started his journey with a 22.3 PSA, Gleason 7 (4/3,, 4/3, 4/3, 3/4, 3/4, 3/3).

We are now post MRI/Biopsy/Pet Scan with fairly good results: "No PSMA avid metastasis is identified. . . No abnormal lymph nodes." Full text of most meaningful portions of the Pet Scan is below. We are blessed to be in the Stanford Health Care with excellent Drs.

My husband's patient stye is "compliant."during the Dr. appointments. Were it just me, I'd run the show differently, but I learned a long time ago that when a loved one is facing something like this, we are better off letting him be the conductor of the symphony. My role is musician.

That said, he appreciates my research and will speak to the doctors if the information I give him leads us to questions after the appointments (which are like receiving information out of a firehose).

He really (really!) is hoping he is a candidate for brachytherapy b/c has friends who did the surgery with poor outcomes, particularly with incontinence. In his mind, incontinence is a FAR bigger concern than ED.

I have 2 questions today. The second one comes from research I gathered from running down a ChatGPT rabbit hole- I may just be borrowing trouble.

1. When we did the telehealth with the oncologist this week, I think she said they will zap the margins as well as the brachy (if he is a candidate). Does that sound correct?

2. This is the question that may demonstrate that ChatGPT is full of sh*t: The PET shows "Bladder wall thickening and trabeculation." He has no bladder issues at present. But with those symptoms showing at the outset of the treatment, is the risk of long term incontinence with radiation *higher* than with surgery? I know incontinence may show up either way. Just trying to measure odds.

BTW, we know ADT will be part of the recovery trajectory.

Full narrative of Pet Scan below. Thank you! Thank you! Thank you! This Brain Trust is a Godsend!

**************

Evaluation of the prostate: Abnormal focal uptake is present in enlarged right prostate lesion. Mild to moderate uptake is present in the posterolateral aspect of the lesion, with intense activity at the anteromedial aspect possibly representing prostatitic urethra. Mild focal uptake is present in left posterior peripheral zone at mid gland.

Evaluation of lymph nodes: There is no abnormal nodal uptake.

Evaluation of the skeleton: There is no abnormal focal osseous uptake. Small nonspecific a sclerotic focus with low-level uptake along the right anterior fourth rib L5 pars defects and mild L5-S1 spondylolisthesis.

Incidental CT: Lung parenchymal evaluation, including for punctate nodules, is limited by lowdoseCT and non-breathhold technique. Mild coronary artery calcification. Bladder wall thickening and trabeculation.

IMPRESSION:

1. Mild to moderate uptake in the dominant right prostate lesion and mild uptake in the small left peripheral zone lesion consistent with prostate cancer with low PSMA expression. No PSMA avid metastasis is identified.

Hi all. New to the forum and hoping to get others' experiences with their PSA history. I am currently 52yo. At age 50, PSA was 0.9. At age 51, it was 1.4. Then, six months ago, I had a PSA of 4.1. The doctor (and I) freaked out until I read about the need to abstain from ejaculation which I had done just ONE HOUR before the bloodwork. I was tested again one week later and my PSA came back down to 1.9 and urologist said my prostate DRE felt normal, smooth, and round. Whew! BUT, for my follow up exam 6 months later (last week), my PSA read 4.9. I did ejaculate 36 hours prior. Based on what I've been reading, I can't explain these swings in PSA. The first 4.1 seems to be an outlier because of the ejaculation. But seems odd that I would then get a 1.9 and now back up to 4.9 just six months later. Anyone have any similar experiences in fluctuations or thoughts? Thanks in advance for any comments.

I will be having an MRI soon. I'm already stressed about the results.

Did anyone stop or missed a day or so of radiation treatments? Was there any negative effects or they just extended more days for you?

My father (66) had a PSA test in September that came back at a 34, with a 4/4 Gleason Score. Things moved quickly and we are now 6 weeks post Prostatectomy. His PSA just came back at a .19 and after a rough couple months, I feel like I'm spiraling, I feel so empty right now.

I guess more than anything, I'm just looking for words of advice from people that have gone through similar journeys. Even if I've only ever been a lurker, thank you all for creating this space where people can find community and support each other.

Hi everyone, taking gas-x, enema & 32 + oz. for radiation almost guarantees they won't turn you away from the radiation table because everything required is done. I don't want them to say , hey ,not enough water, too much gas & bowels are too full. I don't want to be turned back during this lengthy 38 radiation sessions but doesn't this every day preparation screws up your digestive system when you are finish with the treatments? Anyone have been turned away & how do you fix it for next time?