Welcome to r/ProstateCancer

https://auanews.net/issues/articles/2023/october-extra-2023/primary-question-how-has-the-average-number-of-radical-prostatectomies-performed-by-urologists-changed-over-time

“With respect to volume, 60% of urologists performing a radical prostatectomy will do fewer than 5 prostatectomies per year, and 30% will do only 1 prostatectomy per year. Only 20% of surgeons in the AQUA Registry performing prostatectomies do 15 or more prostatectomies per year.”

Do your best to locate a surgeon with plenty of experience if you go the surgery route. I guess you wouldn’t get your transmission replaced at Jiffy Lube, so find an experienced cancer surgeon.

I have a job that can be done partly at home sitting at computer. How long after RALP did you feel like working from home, at least part time? How long before you felt like going into an office?

Biopsie came back positive. I am not a candidate for observation. As I read about the various treatment options, my understanding incontinence is unavoidable. Do I understand correctly? Thanks Gang.

Had SBRT a month ago (finished actually on Nov 5th) and still get the burning sensation during urination. I read that the lining of the bladder was probably affected and while damaged, may cause the bladder not to buffer the acid in urine, and consequently, cause burning.Was trying to find ways to help with the healing..though I'm taking ibuprofen each day, hasn't made that much of a difference. So stumbled onto Hypobaric Oxygen Therapy (HBOT). Has anyone else tried this and if so, what were your results? Are there other therapies that some of you may have tried that helped in the healing process?Thx!!

I have my procedure scheduled for December 18 to get 2 markers 1 spacer gel implanted. Kinda nervous...

The scheduler said "...most guys just take 1 Valium, 1 local shot to perineum and numbing lube for the rectal ultrasound..."

What! Is this true? That's it?

I asked if I can opt-into a full sedation with anesthesia and the answer was yes, I can do it, but extra time and steps are required. Not sure if insurance will cover it..?

I wasn't knocked out for my biopsy. Didn't know it was an option actually. Kinda regret it because I have a slight phobia of needles etc.

Thoughts? Advice?

Hey all - I’ve been posting here regularly since my RALP (performed 11/18). I’m 49 y/o. I got my catheter out last Tuesday and had my first post-op with my urologist. He kept saying things were ‘pretty good’ which to me means not great. Said I have positive margins and the tumor was way more aggressive than what the biopsy indicated. He said I have a higher chance of recurrence due to those two factors.

All said, I’m trying to interpret some clinical notes that are in my chart:

pT3a N0 M0 R1 G3+4t5 with extensive intraductal carcinoma (+margin R postero-lateral)

I understand some of it, but what is my Gleason score? What is the ‘t5’? I’ll get another PSA test here in the next few weeks. Next appointment is 1/2/2024.

*edited as I am seeing a urologist

Would love any input from you all.

I'm nearly 43 years old and my PSA has gone from 1.06 to 1.77 then to 2.38 in a few short months.

I'm suffering from low testosterone and my Dr put me on androgel which wasn't absorbing.

On top of the terrible low T symptoms I'm now worried of psa velocity.

In your experience does this look worrisome ? Is this an exclusion for TRT therapy?

Would greatly appreciate any input.

Had prostate removed last Monday and will be getting my catheter out tomorrow. My questions/ concerns are:

1. how to stop the terrible gas pain since surgery, gasX does nothing.

2. what to expect after catheter? I mean will urine just run out of me all the time or will I know when I have to pee? I am 51 and had no problems with urination before. Just wonder if I need to stop and get depends for after office visit to remove catheter.

3. since my prostate is gone, am I clear of PC now or is there a chance it may come back,? If so, how since prostate is gone and when do I start monitoring PSA?

4. when is too early to start thinking about an erection? I feel like I might could get wood but it’s really sore so I don’t want to force in it.

Thanks all, just

RALP in August 2024 and went down to 0.5 in Sept, then up to 1.0 in Nov. I just put my stats into the Sloan Kettering nomogram for men with rising PSA after RALP (https://www.mskcc.org/nomograms/prostate/biochemical\_recurrence) and the results were pretty grim: 61% chance of death from PC in 5 years. 97% in 10 years. This nomogram is based on results from 1987 to 2011 ... so I know my odds are better than that (so I got that going for me, which is nice) ... but does anyone know how much better? Or how to digest this kind of info? I have an appointment with the radiation oncologist in the morn, so I'll definitely ask him about it. Any other helpful sources of info like this with more current data?

I’m 26 days post RALP. No incontinence thank goodness. My main issue is I need to pee more often now than before RALP. Any suggestions? Can a pelvic floor therapist help?

We are traveling to San Diego to have the Nanoknife procedure @UCSD. Let's electrocute a lesion.

As is often the case I have been surfing the web since my diagnosis and it is hard to find really useful sources that are not some form of advertising.

One video I found, that was only published today, which I have found really interesting, is called "Can You Treat Prostate Cancer WITHOUT Incontinence? A discussion of Retzius Sparing Prostatectomy" and it looks really balanced to me using published clinical data.

To spoil the surprise its conclusion is that Retzius Sparing surgery has lower initial rates of urinary complications, but over time its not that different to standard surgery.

He also does another video that has been around a while on you tube is "What Happens if You Don't Treat Prostate Cancer? with Dr. Michael Ahdoot" which goes through the data and explains the risk factors that impact on the likely outcomes.

It answered a lot of my questions and in summary it supports the perceived wisdom of watch with a Gleason of 6, probably do something with a Gleason of 7 when you have at least ten years to live and with a Gleason of 8 or higher its usually best to have treatment.

Of course people have different views on what is helpful, but the combination of hard data and the appearance of the guy being open minded meant that for me they were really helpful.

Hi! I’m a student at the university of Staffordshire and I’m writing a dissertation about radiation and hormonal therapy, I’m interested in people undergoing or who have undergone these therapies to answer a questionnaire. Thank you so much!

https://docs.google.com/forms/d/e/1FAIpQLSfzwXEn-mQWKK-eNW4rRa64aojXrBqH3Jiy-GKWAt-WhRqunw/viewform?usp=sf_link

Hi, all. I'm new here and hope this post is ok. I'm 58M. I had a negative biopsy in 2019 when my PSA was 5.1. 2022 & 2023, 5.8 and it just jumped to 6.7 (14 months later) My uroligist just messaged last night that me my free PSA is in the moderate to high risk range and using the risk calculator puts me at a 21% risk of High Grade cancer.

He's giving me an option of doing another biopsy or just keeping an eye on the PSA, which he considers "equally valid" approach depending on my preferences.

A few questions:

A) Is 21% mean I have a 1 in 5 chance of having HIGH grade cancer now or in my lifetime?

B) If answer to A above is "Now", any way of estimating my risk of low-mid grade now? (else, in the future)

C) Why would someone not want to do a biopsy again versus just watch the PSA numbers? I have read up on the risk of biopsies, and they don't concern me.

Any other thoughs/suggestions. I'm now feeling somewhat panicked and anxious about this.

Thank you in advance. Much appreciated

So my initial PC was diagnosed after primary noticed an abnormal DRE and my PSA Doubled from around 2 to around 4. Surprisingly, my cancer was very aggressive. Gleason 9 on all my samples w/nerve involvement. Luckily, no matastasis. That was Feb 2023. My PSA at 3 mo intervals post op have been 0.013+/- for the first yr so me moved to 6 mo intervals. Well that became an 8 mo gap due to my urologist having a surgery. Long story short, that last test, my PSA was 0.029, a little more than double but still technically "undetectable". So, should I be concerned? Urologist was pretty chill until I mentioned the doubleing, then he got a little animated but mostly impressed that I mentioned it. Haha, now, of course, I'm feeling extra pain in joints that traditionaly have not been painful. All in my head? Probably. Any insights?

Did the prostate biopsy a couple days ago. Just got the results. Don’t have my appointment till about a week and a half. Just wondering what my options may look like? Age 58, started on t-treatment for 18 months. My PSA level jumped to a 5 and a 8 on the PSA free. Doctor cut off t-treatment immediately and recommended the prostate biopsy over a MRI. Urologist did a DRT prior and felt nothing. I have also had BPH for about three years. Just wondering what info I should educate myself with prior to appointment and what others with same results had recommended to them at that appointment. I feel terrible without the testosterone treatment again but doctor said if cancer, T feeds it. Also, this is all through the VA.

So after 6 years of steady PSA increases ending in my PC diagnosis via MRI and MRI targeted biopsy, of Gleason 3/4 and a 1.4 cm contained tumor, I was recommended for surgery. I asked for 3 months AS which was granted, and I began my journey of PSA reduction from 6.4 to 4.7 to 3.3 and 2 days ago to 2.45 over 11 months (see the My Chart). My urologist and PCP are like " WoW !! whatever you are doing, keep it up". I learned how to read university research papers during another 6 year journey which ended in my authoring a research manuscript about protein enzymes. So I turned that skill toward my PC condition and developed my own multi phased plan which originally set out to lengthen my PSA doubling time. It has apparently worked so well that over the last year, my PSA has been driven below the point it was from 7 years ago.

Anyhow I am interested in anyone in this community who has experienced anything like this as well as any commentary from anyone in this community regarding what I am experiencing. the website with the information is iloweredmypsa.com Thanks to everyone in advance.

https://preview.redd.it/sse1w1kif54e1.png?width=1141&format=png&auto=webp&s=6d276283052a0f6ca26eab02bfa86ba343d433d1

...I'm finally starting to really get my stamina back. I mean, I'm still pretty weak, but it's coming back.

For a few days after I was done, it felt like my stamina was continuing to drop, but some of my other side-effects were slowly getting better.

Today, I was able to jump back on the exercise bike for the first time since the therapy ended. It was only for five minutes, but unlike the strength training I typically do, I can do this every day. We'll try again tomorrow.

Oh, and in other good news, my PSA which started at around 94, and dropped to 16 after the ADT but before the radation, and which was 0.9 in the middle of the radiation... was down to 0.1 in the final week.

I really feel like I've turned the corner here!

Can't wait to resume the strength training, which'll help offset the muscle mass and bone density loss from the nearly two years of ADT I still have to deal with.

How much information are the doctors ever going to give up or maybe it’s the researchers but it takes all that time for them to come up with a two digit number, fractional number like .63 which is what they gave me all they tell me is it has something to do with 22 genetics so I’m sure they’re gonna have a reason to tell me why I don’t need to know anymore about it but you know there’s 22 genes the genes have names or I don’t know anybody else have to go through this please comment if you can, thank you very much

Been exactly a year since my RALP. Feel blessed to have made it a year with no recurrence so far. Next PSA in late January. Hope I’ll get another <0.006!

My Father was recently diagnosed with prostate cancer. Although he had a negative biopsy in 2022, his PSA went from 6.2 in May of 2023 to 9.4 in May of 2024 (then 10.3 a week later). In November, he went in for a biopsy that showed Gleason 4+5 cancer in 3 cores. Last week he got a PET scan that showed the cancer had metastasized to a number of lymph nodes and bone in the surrounding area. He currently is not being treated, but does have low testosterone. We are meeting with his doctor on Monday to further discuss the diagnosis and treatment options.

I have already done the following:

• Attempted to get him to eat a Mediterranean diet (I know he needs a tailored diet - I am going to ask about an oncology dietitian)
• Signed him up for a number of personal training sessions per month (I don’t know if he can see a regular personal trainer or if he needs a specialized therapist)
• Trying to set him up for a second opinion at Sloan Kettering

If you guys have any advice on questions to ask or medications/therapies to inquire about, that would be greatly appreciated.

Thank you in advance

(Sorry if I posted this twice, I am new to this)

I just received my results of biopsy

Final Diagnosis View trends A. Prostate, left posterior lateral #1, biopsy:

• Adenocarcinoma of the prostate, Gleason score 3 + 4 = 7 (pattern 4- 20%), Grade group 2, involving one core (1.7 mm, 40%)
• Perineural invasion identified

B. Prostate, left mid lateral #2, biopsy:

• Adenocarcinoma of the prostate, Gleason score 3 + 4 = 7 (pattern 4- 10%), Grade group 2, discontinuously involving two foci of one core (5.5 mm, 90%)

c. prostate, left anterior lateral #3, biopsy:

• Benign prostatic tissue

D. Prostate, left posterior medial #4, biopsy:

• High grade prostatic intraepithelial neoplasia (HGPIN)

E. Prostate, left mid medial #5, biopsy:

• Adenocarcinoma of the prostate, Gleason score 3 + 3 = 6, Grade group 1, involving one core (1.5 mm, 20%)

F. Prostate, left anterior medial #6, biopsy:

• Adenocarcinoma of the prostate, Gleason score 3 + 4 = 7 (pattern 4- 30%), Grade group 2, involving one core (6.7 mm, 95%)

G. Prostate, right posterior medial #7, biopsy:

• Benign prostatic tissue

H. Prostate, right mid medial #8, biopsy:

• Adenocarcinoma of the prostate, Gleason score 3 + 3 = 6, Grade group 1, involving one core (2.3 mm, 20%)

I. Prostate, right anterior medial #9, biopsy:

• Adenocarcinoma of the prostate, Gleason score 3 + 4 = 7 (pattern 4- 10%), Grade group 2, involving one core

(1.5 mm, 10%)

J. Prostate, right posterior lateral #10, biopsy:

• Benign fibromuscular tissue

K. Prostate, right mid lateral #11, biopsy:

• Adenocarcinoma of the prostate, Gleason score 3 + 4 = 7 (pattern 4- 15%), Grade group 2, involving one core (5.0 mm, 55%)

L. Prostate, right anterior lateral #12, biopsy:

• Atypical small acinar proliferation (ASAP)

M. Prostate, left anterior apex peripheral zone, biopsy:

• Adenocarcinoma of the prostate, Gleason score 4 + 3 = 7 (pattern 4- 70%), Grade group 3, involving one core (4.5 mm, 50%)

N. Prostate, left anterior apex peripheral zone, biopsy:

• Adenocarcinoma of the prostate, Gleason score 4 + 3 = 7 (pattern 4- 70%), Grade group 3, involving one core (3.1 mm, 80%)

O. Prostate, left anterior apex peripheral zone, biopsy:

• Adenocarcinoma of the prostate, Gleason score 3 + 4 = 7 (pattern 4- 40%), Grade group 2, involving one core (3.2 mm, 40%)

P. Prostate, right lateral midgland peripheral zone, biopsy:

• Benign prostatic tissue

Q. Prostate, right lateral midgland peripheral zone, biopsy:

• Benign fibromuscular tissue

R. Prostate, right lateral midgland peripheral zone, biopsy:

• Adenocarcinoma of the prostate, gleason score 4 + 5 = 9, grade group 5, involving one core (6.6 mm, 65%)

Summary: Standard 12 core biopsy Number of cores with adenocarcinoma: 7 Number of cores total: 12 Highest percentage involvement on a single core: 95% Total percentage over all cores: ~25% Perineural invasion: not present

I’m meeting w dr via zoom on Monday

None of this seems good, Don’t want to deal with this .Guess no one does Don’t know what to do so many options

Thanks.

#prostatecancer

Hi - my father is almost 73 and was diagnosed with metastatic prostate cancer. He had his first Lupron injection a few days ago and just had a bone scan today. We meet with the oncologist Monday so I know we will get more info then but I’m hoping to get some understanding of the preliminary results that just came in. For more background, when first diagnosed a few weeks ago the urologist said his PSA was in the 50s, that the cancer had spread beyond the prostate to his pelvic bones, and that the oncologist may or may not want to do chemo so I suppose we will find out in a few days. I am just completely, utterly terrified - thank you in advance for your help, reddit.

Bone scan results: Scattered axial and appendicular skeletal metastatic disease includes but is not necessarily limited to the thoracolumbar spine most pronounced at L3, the bilateral ilia, the left scapula versus an adjacent rib, the bilateral acetabular regions, and potentially the bilateral femurs although left femoral uptake could also be secondary to degenerative disease

Things that weren’t on my buck list for 2024:

• Getting prostate cancer
• giving a review of Tena absorbent guards (max)

I’m in month 2 post RALF and have been using the Depends max guards. I decided to give the Tena brand a try after multiple suggestions on this forum. Life changer! Not as bulky as the Depends and they have wings! I’ve had at 3 accidents where the Depends leaked out to the side. The Tena seem to cover more area

My husband (51) is going in for RALP on 12/9.

We did surveillance for 2 years and now the docs say it’s time for treatment. He opted for RALP. His father died of prostate cancer over 20 years ago but his father found out very late that he had it.

He’s gotten some sweatpants and I know he will need some adult diapers (right?) He is stressed about the catheter and the recovery time since he’s normally very active.

Any advice on supplies to have on hand and how I can best support him? He plays things pretty close to the vest and doesn’t talk about it a lot but I know he’s stressed about it.

He’s expecting to be able to work from home after a couple of weeks and return to work after about a month. (Mostly just a lot of driving).

Any advice appreciated.

Hi all.

Typical 71 yo male. No real history in the family....but the men didn't really that long.

My Doc and myself are pretty much of the "don't get started" statistical situation...that is, the countries that do get heavily involved early don't do better than watch and wait. There are some particular sad stories in the Book by a leading figure in the "industry"..."How we do Harm".

https://www.amazon.com/How-We-Do-Harm-America/dp/1250015766

In any case, here is my question. About 10 years ago a neighbor of mine in RI was actually one of the top dogs for a Euro company that had developed one of the newer PC tests which claimed vastly more accuracy. Short discussions with him indicated that it was likely there were others - competitors - but that these tests were really a revolution in the diagnosis of who might get the worst cases....

In the time since I've been out of touch (sold that vacay house) with both the individual (he was in sales) and with the field in general.

And so, my ???

Is there one or two tests which have since proven their superiority in selection of individuals who may be subject to more aggressive progression?

If such is the case, are these tests available on a "self pay" (cash) basis through the companies or labs? I have never needed a urologist and also go back and forth from MA to FL....so going through the normal process doesn't appeal to me until and unless there is some indication.

FYI 71 yo

5.67 PSA tends to slightly rise over the years.
No symptoms that seem abnormal for age. In good health - active. No chronic conditions. Active, etc - vegetarian. No ED problems (such as it is at our age).

If I have a plan which charges $50/copay for a specialist, will this cover each radiation session? Or is the radiation a separate cost that I would need to pay an additional 20% for in addition to the copay. Can get expensive if 45 sessions.

Hello,  

We are researchers from Edge Hill University conducting a PhD study on how individuals living with and beyond curatively treated cancer might find personal growth or positive changes after their cancer journey. We aim to understand the positive aspects that people discover after their cancer journey, helping to shape future questionnaires and support. The questionnaires take about 15-20 minutes to complete and entirely online. Recruitment will end in 2 weeks!

Who is eligible?

• You have been/are currently being curatively treated for cancer
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• Contribute to meaningful research and the development of questionnaires.

Ways to Participate:

• You can receive compensation for your participation by signing up for the study through the Prolific link here. The link will direct you to a Prolific sign up page and you are all signed up, you will have access to the study!
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For more information or to sign up to the study, contact the primary researcher: Kian Hughes hugheski@edgehill.ac.uk

Thank you for your time and consideration!

12 months after 70gz over 28 days standard radiation therapy PSA went from 3.7 1.6 0.8 0.6 0.4 and now 0.4 Next PSA in 3 months. If this is my nadir is that a “cure?” Shouldn’t I have expected lower?