PSA 8.6, MRI PIRADS 5, Biopsy scheduled, so a bit worried

Posted by greg52 @greg52, Dec 30, 2023

Just came across this group.
I am a 52 year old man. Routine PSA test showed an 8.6. Immediately referred to Urologist then MRI/PIRADS 5 for targeted biopsy. Biopsy still 4 weeks away so 4 weeks to worry, speculate, and research is probably not good. Every ache, pain, and moment of fatigue/weakness I've had the last several months/years has me convinced it's related to this. I understand I should not jump to any conclusions until after biopsy but just curious.
Other than the normal symptoms associated with prostate cancer, wondering if any experienced other symptoms?
I've always had back pain (golfer) so assumed it was related to that.
The last several months I've felt weak. Occasional pain during urination and more frequent trips to bathroom at night.
Occasional pains in abdomen and bruised feeling at times in different areas of my body where there in no bruise.

Just curious what input/advice others might have as I wait for my biopsy and diagnosis/prognosis.
No evidence of spreading at least from what I can understand from the MRI.

Thanks all.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

grandpun | @grandpun | Jan 1 11:59am

In reply to @retireddoc "Good morning and Happy New Year! I am a 70 yo recently retired Radiologist (Interventional specialty..." + (show)

@retireddoc

Good morning and Happy New Year!
I am a 70 yo recently retired Radiologist (Interventional specialty mainly-biopsies, treating cancer by ablation, compression fractures of spine by kyphoplasty etc) but also have read many CT/PET/MRI exams in my 40 year career. I thought I knew a lot about prostate cancer; turns out I didn't.
I routinely had a yearly physical exam which included PSA. My PSA bounced around from 3-5 for a number of years and I finally got a contrasted Prostate MRI on a high field magnet/3T in 2019. It was normal so it gave me a false sense of security. Also sent a blood sample to Mayo for fractionation and they said normal for age. In early 2021 my PSA jumped to 7.5 (yearly rate of rise of 20% or more is the red flag, not the absolute number) so I went to the urologist and had repeat MRI. Now there was a 1 cm enhancing nodule (not good) in my prostate. Biopsy revealed Gleason 7, 8 & 9 cores from the nodule with the rest of the gland negative. Bonescan & MRI (urologist didn't order PET because he didn't believe cancer was outside the prostate) negative for spread. I went into full court press mode and had informal discussions with multiple colleagues (RO, MO, urologists) as well as formal consultations at several medical centers. Elected to have robotic prostetectomy with a very experienced surgeon. Surgery went well. Gleason 9 with extra capsular extension. PSA went down to 0.016 post 6 weeks but then went up to 0.37 two months later. PSMA PET revealed solitary met at T8. Consultation time again. Read extensively. Elected to have SBRT (radiation) at Emory to kill the cancer at T8. Four months later PSA now 4.5. Very rapid doubling time indicating agressive cancer. Again, extensively read literature. Got a zoom consultation with prostate cancer expert at Johns Hopkins with 30 years experienced treating prostate cancer (medical oncologist and head of the prostate cancer research facility there) and liked what I heard from him and his NP. I wanted an Oncologist that just specialized in prostate, not a general medical oncologist. Immediately started on Lupron. Within 2 weeks started chemo with Taxotere at Hopkins and added an anti androgen receptor drug (Darolutamide). Eight weeks after the chemo cycles ended I had full pelvic radiation. My PSA went undetectable after my second chemo session and has remained so for a year. I am now off all medications and awaiting return of my testosterone and hope PSA stays undetectable. That's my journey. Everyone is different.
I will offer my opinion about a few issues as a patient and not a physician. Even as a physician I would never advise anyone on a certain course of treatment because 1) I am not their doctor, 2) that is not my field of specialty, 3) I don't know anyone's full history etc. I am leery of those that make definitive pronouncements about treatments on this and other forums. Having said that:

Become informed as others have suggested. It is your body. Seek second opinions. See at least one Urologist and one Radiation oncologist before making a decision on Radiation vs surgery. There is no right or wrong. Both are good choices depending on the person"s age, health, Gleason score, Imaging results etc.

If you don't feel comfortable with your specialists fire him/her and seek another opinion. If they don't spend adequate time with you and answer your questions find another doctor that will.

In general, seeking treatment at a major medical center/ Center of Excellence is a good idea. If you elect to have surgery, ask your urologist how many Robotic Prostatectomies he/she has done. It should be quite a few but I won't give my opinion to the exact number. I practiced at a major medical center and I can tell you from experience that when a new procedure came out I was much more proficient after the first hundred than I was the first 10. Just something to think about.

Treatments are changing rapidly regarding prostate cancer. Limited metastatic disease (1-3 lesions) is considered potentially curable by many oncologists whereas several years ago it was not.

Don't let this consume you. Live life no matter the result of the biopsy and future treatment. Easier said than done. At your age you need to seriously consider quality of life in your decisions. Ask your doctors how their treatments will impact that.

I wish you well. Numerous people who have gone through this freely gave of their time to me so I feel I should do the same. The above is just my experience and opinion. Not definitive. Good luck.

Jump to this post

Hello 'retireddoc',
I have a touchy question that has bugged me for a goodly while. And I mean no disrespect nor to contradict or criticize your reply; in fact it was fantastic.
But I like many sought a doctor/urologist who had lots of experience as well as many RARP's of experience. All good.
But how do doctors of any specialty or field get those first 10 or 100 procedures if patients like me seek only those with more experience??
Is there a protocol for that??
Again, no offense meant and I hope none taken. Thank you!

pamperme | @pamperme | Jan 1 3:05pm

I had pelvic pains for many years and after many years learned to ignore it. Then I had a PSA go from 2.7 to 5.5 They scheduledme for an MRI and I was extremely stressed because I had been ignoring these symptoms. I had frequency issues and penal pain and perinium pain and spikes of pain at the rectal area. As I got more stressed I got a burning feeling in the perinium area and rectal area. I had incontinence issues and after I had the Pirad 5 the whole pelvic area became inflamed. The moral to the story is this had nothing to do with the prostate cancer. I had the prostatectomy and ended up with these and other pains in the pelvic area including sitting pain and it all appears to be a pudendal nerve issue and the stress was causing more pain.
It ended up while the MRI showed it contained I had some cancer outside but not in the lymph nodes. I had a Gleason of 3 4. My PSA test for the first year has been less than .02. I am happy with this but the pelvic pain is bad and I am now going for a nerve block.
Do as people have stated here, look at all the options before making a choice. I personally picked the RP because I thought it would get rid of the pelvic pain. While it did not I am happy with the choice, I would have been happier if it was all contained. The removal allows the use of PSA to determine if a reoccurrence occurs to precise levels since the prostrate has been removed and the only thing that can produce any PSA is cancer.
I have ED issues but I am 70. I also have incontinence issues but I can use protection. I need to get rid of the pelvic pain which is limiting me from doing things. Best wishes and good luck to you.

retireddoc | @retireddoc | Jan 1 3:56pm

In reply to @grandpun "Hello 'retireddoc', I have a touchy question that has bugged me for a goodly while. And..." + (show)

Really good question and glad to answer. When I was still in training (residency and fellowship in Interventional radiology) I performed procedures under the direction of the attending doctor (the professor) so I had done X number of whatever procedure when I first got into practice. But as time goes on new procedures come out. If the procedure has parts that are familiar, it may be easy to learn the new additional technique. Example:. I had performed hundreds of angioplasties of arteries (in leg, kidney etc) in my fellowship. After I was in practice the technique of leaving a stent was developed. It was relatively easy to extrapolate adding the stent placement as part of the procedure since I was familiar with the basic larger part of the procedure. Other procedures (Kyphoplasties for example) entailed putting a large bore needle through the skin of the back into the vertebral body of the spine and injecting medical type cement to stabilize vertebral fracture caused by osteoporosis, accident/trauma or tumor-like metastatic breast or prostate cancer. I was not familiar with this as it had not been invented before I went into practice. I would attend a hands on conference and read about it first. I would then scrub in with another physician that had significant experience and learn the technique. When I felt confident I would do a number of them under the guidance of an experienced physician. When I was ready to go "solo" I would choose an "easy" case. I always explained to the patient that this was the first one that I had done by myself but I felt competent to perform the procedure. Most patients said ok. It was actually rare for a patient to ask my credentials or how many of a certain procedure I had done, but if they did I was always honest with them.
There are some procedures or surgeries that are just more complex or require more skill than others. Robotic prostatectomy is one of them. Most younger urologists learn the technique in training so have done quite a few when they get into practice. Others have someone mentor them. Surgery requires hand eye coordination just like some other endeavors or sports. Some surgeons are just naturally more skilled than others. It is reasonable to ask a surgeon how many they have done and what their complication rate is. Again, it is your body.
Hope that helps.

5galloncan | @5galloncan | Jan 1 5:12pm

In reply to @mikewo "PC is slow going so you have plenty of time to ruin your eyesight reading the..." + (show)

I had my PSA surge from 3 to 4 in one year and then to 6.5 six months later. Had a MRI showing high likelihood of cancer. Then on to Moffitt in Tampa for more testing - biopsy, PSMA-PET and then Decipher. I have 4+3 and 3+4 Gleason 7. My Decipher results showed low risk, and PSMA-PET confirms it is still confined to the prostate. My younger brother had prostate cancer, surgery, and then ended up 14 years later dying at 65 of bladder cancer, so I'm going to move on it. Moffitt offered surgery and various forms of photon radiation and brachytherapy. After much research, I am going with the only treatment I found that has a fan club - proton therapy. I am looking to this radiation therapy at UF Health Proton Therapy Institute in Jacksonville as they have been doing it here in Florida the longest of the other centers. I believe you can get proton therapy here in Florida in Orlando, Miami and a couple of places in Jacksonville. I very much like Moffitt. They are top notch and are themselves building their own proton therapy center, but it won't go online until 2026.
Regular Medicare pays for proton therapy, but other insurances might deny it and make you go through an appeals process. If you go online to UF Health Proton Therapy Institute and fill out the contact form, you will get a free package via Fedex in a couple of days with some excellent literature on Proton Therapy. You will also receive a comprehensive list of men who have undergone proton therapy over the last 20 years whom you can email or call to discuss their journey. I'm talking about a list with hundreds of names on it and it gives their ages and dates of their treatments. So you can contact a guy who went through it recently or more than 20 years ago. My paperwork is being processed at UF Health and if I qualify, that's what I'm going with. I may have to move to temporary housing for a couple of months (max) in Jacksonville, but from what I'm seeing with proton therapy and the results, I will be happy to visit Jacksonville for an extended period.

mikewo | @mikewo | Jan 1 7:45pm

Sounds like tou have it planned as well as you can. I was 73 almost 74 for I got the 5 proton treatment at Mayo Phoenix. At my age I am not too worried about a reoccurrence in 10 or 15 years as it makes me 84-89 and I don't want to wind up in a nursing home. My sister works in one and says NO WAY!!

ranger44 | @ranger44 | Jan 2 10:29am

In reply to @retireddoc "Good morning and Happy New Year! I am a 70 yo recently retired Radiologist (Interventional specialty..." + (show)

@retireddoc

If you don't feel comfortable with your specialists fire him/her and seek another opinion. If they don't spend adequate time with you and answer your questions find another doctor that will.

Treatments are changing rapidly regarding prostate cancer. Limited metastatic disease (1-3 lesions) is considered potentially curable by many oncologists whereas several years ago it was not.

I wish you well. Numerous people who have gone through this freely gave of their time to me so I feel I should do the same. The above is just my experience and opinion. Not definitive. Good luck.

Jump to this post

Thanks so much for the detailed information, I am also 70 my PSA had started up a cpuple years ago 2.27 to 4.47 back to 3.73 then a couple months ago to 6.24 I finally got in to see a Urologist December 13, I had a Parametric MRI on a 3T on 12/26/23 it showed 1 lesion 12mm and my PIRADS was 4, my Urologist also ordered a 4K score blood test, on a scale of 1-95 (under 7.5 not aggressive) mine was 95 the most aggressive, I am waiting to get scheduled for a needle biopsy then a Gleason score. The MRI did not show anything in the pelvic bone ( although I have developed bad tailbone pain in the last 6 months, I attributed it to my long distance motorcycle rides) nothing in bladder or pelvic lymph nodes.
I have to be realistic that I have some kind of Prostate Cancer. My prostate was enlarged 44.1 CC and I have had BPH symptoms for at least 2-3 years I understand the best needle biopsy is guided by an MRI vs a rectal sonogram (TRUS?) again thanks for sharing your details, my Dad had PC and radical prostatectomy in 1984 at age 64, he thought the s surgery ( perineal) let out some cancer cells, he must have had a slow growing kind as he was treated with different drugs at Mayo Clinic and lived to be 90 when he died after the PC went to the bone
I have lots of cancer in my family so this was not a shock to me

handera | @handera | Jan 3 9:43am

@greg52
I’m 67 years old, had a PSA of 7.8 and my early October mpMRI showed three PI RADS lesions…one 3, one 4 and one 5. So, my situation is similar to yours…except my age.

I too was quite concerned, especially because of what I had read about PI RADS 5 lesions, immediately after I received my mpMRI report.

A few weeks after the mpMRI, my urologist performed a Fusion biopsy of 15 areas (9 cores in the three mpMRI lesions and a standard “random” 12 core sampling).

The “4” and “5” mpMRI lesions came back with Gleason 3+3=6 cores (in only 5-10% of specimen) and the “3” lesion came back benign!

However, 2 of the cores taken in the 12 core “random” sampling came back with Gleason 3+4=7 cores (with 10-20% of pattern 4 cancer).

The lesson here is not to get too concerned about an initial PIRADS 5 lesion AND make sure your urologist also does the standard “random” 12 core sampling protocol, besides sampling the “targeted” MRI location(s), when going for your initial biopsy.

Next week I will review a 2nd opinion on the biopsy pathology and a Decipher Score of the biopsy cores; neither of which I’ve seen - yet - and it’s been 2 months since I made those requests.

I am also waiting to get my first, post biopsy, PSA test (one must wait 3 months for the prostate to heal after a biopsy, before getting another PSA level check).

The main thing I have been doing through all this “wait time” is taking action regarding the things I can control and change.

No matter the outcome of your MRI results and any subsequent options you may (or may not) need to consider…there is one thing that you can definitely do…carefully examine your current diet and exercise routines and read (and take action) regarding that which is known to be best for good prostate health.

During the last 3 months, since receiving my mpMRI results, I’ve implemented a significantly modified diet (primarily whole plant based) and doubled my aerobic exercise routine.

I’ve lost 20 lbs and dramatically improved my overall health (no longer need a CPAP machine, no longer have shoulder inflammation, lowest cholesterol levels in 38 years and my average resting heart rate dropped 10% to 53 bpm).

Obviously, I have no evidence (yet) that this is helping to reduce my PSA; but I will soon find out.

Every man responds differently with news like that which you have just received and my actions may not be appropriate in your situation, for a variety of reasons.

Even so, it seems to me that all of us who have been forced to embark on this unknown journey would benefit from taking action over that which we have the most control.

All the best to you and may God bless you while you wait and give you the courage to change the things you are able to change.

spino | @spino | Jan 3 10:11am

In reply to @handera "@greg52 I’m 67 years old, had a PSA of 7.8 and my early October mpMRI showed..." + (show)

@handera