PSA 8.6, MRI PIRADS 5, Biopsy scheduled, so a bit worried
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.
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Thank you so much for taking the time to share your story, it really is encouraging to hear of others journey. I agree with you that we need to do what we can to improve our overall health, and this is a wake up call for me. I quit drinking 2 years ago, have never smoked, but have been obese for the last 20 years, 5'9" and 260 lbs. from what I have read, this was more than likely a contributing factor to PC as well as my family history. I have also made a resolution to change my diet, implement a rigorous exercise routine ( better late than never) and lose at least 25% of my body weight over the next 1-2 years.. I have always had good blood pressure ( 120/80range) great cholesterol numbers thanks to Lipitor, and have not developed diabetes, although borderline, so have been in good health despite my weight. Congratulations on your weight loss and exercise routine. God works in mysterious ways, and this was his way of telling me Major Change Is Needed, thanks again for your encouraging words
Thank you for your encouraging reply! It helps so much to hear from folks who are on the same “awkward journey” and are looking for brothers who have been traveling that road for sometime or able to bring insights we may have never considered.
My first day of retirement was July 1, 2022…and I headed to the track. I weighed 195 lbs (5’11”) and never ran a 5K in my entire life. I made it 6 times around the 1/4 mile track, alternating one lap walking and one lap slow jogging.
I persisted by establishing a “Runners” Signal group with my brother (an experienced marathoner) and my two sons. We all bought Garmin GPS watches and were able to see and encourage one another, at our own pace levels.
Fast forward to October 16, 2023 when I learned of my PCa biopsy results. By this time I had lost 10 lbs and had competed in two 5k races. Not bad, but that’s when I decided to get serious about my diet AND I “amped up” my vigorous exercise regiment due to studies such as this one (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056656/) which concluded, among other things, “Men with ≥3 h/wk of vigorous activity had a 61% lower risk of PCa-specific death”.
In any case, make sure you consult with your doctor(s) and/or dietitian regarding any significant changes you desire to make in diet and exercise…at least make sure they know about what you plan to do.
Take it slow and build up endurance…listen to your body and give it plenty of rest between vigorous workouts. If you’re overweight, it maybe that you only take brisk walks for many months. You’ll know when you’re ready to increase your pace, if you listen to your body’s response.
My 64 year old experienced marathon brother (who just ran a 23 minute 5K) recommended Hoka Bondi 8 shoes (ultra cushioning) and a friend from Kenya, who used to run with Eliud Kipchoge in his youth, recommended I always run on a track…to prevent injuries. I do both and so far it has worked beautifully.
I’m now at 165 lbs and in “maintenance mode” regarding my weight.
Time will tell if any of this will impact my PCa; but even if it doesn’t change that situation, I’m thankful for all the other benefits I have already observed in my overall health (as mentioned earlier).
Maybe-You-Already-Know: Get some disposable pads (adhesive-backed) -- or better yet, disposable underwear with built-in pads.
Glad I had 'em both.
After my biopsy, rectal lube clean-up is a bit messy. And I had some blood droplets from penis. Normal & expected, I'm told. Mostly resolved after a few days -- allow a few weeks for no worries.
The Gleason score will give you much more information if there was any spreading possibility.
Hokas are great: I have had a Bondi 7 and then an 8, together with a pair of Cliftons.
Good for 300 - 500 miles before replacement.
The Bondis have the most cushioning, but also a wider base and a "rocker" sole, which can take some acclimation. The Cliftons have the 2d most cushioning.
Again, both are great.
I am a "moderate" 3 Bears walker; 45 min course and not too fast/not too slow and it takes a toll on my 73 yr old feet, so the Hokas have been a revelation.
Glad to pontificate on something other than PCa for a moment.
Returning you now to your regularly scheduled program, my 45 min walk became 50 - 52 mins with ADT (and summer 😡 heat).
Felt like I was walking with ankle weights; uphill; into the wind; both ways.
4 mos after ADT completed back to 45 min range ( as Testosterone has recovered somewhat).
So best to all. Whatever level of physical activity you can accomplish is really good.
Be proud of your achievements rather than lament any shortcomings.
@greg52, I know your biopsy is still a couple of weeks away. Just wanted to check in to see how you are holding up. Waiting is the toughest part. Any questions for the guys who have been there before you as you prepare for the biopsy or the followup?
Dear retireddoc, thankyou very much for post that is very interesting for me.
In my father's family (6 male brothers) everyone underwent prostate surgery (BPH) at a relatively young age (around 60 years old). Four of them died from various cancers but not prostate cancer; although it must be said that they all died between the ages of 69 and 73.
I started with classic BPH symptoms at 38 and had to have surgery (TURP) at 51. Since then I have always had an annual visit to the urologist and a PSA test every 6 months. I am now 66 years old. The PSA went from 1.6 (January 15) to 3.98 (January 24). No suspicious abnormalities were detected on rectal touch. My urologist, suspicious of this gradual and constant increase in PSA, orders me a multiparametric MRI in 2015, then again in 2021. Both results were negative, without suspicion and without alterations, PIRAD 2.
Despite this result, the urologist recommended performing a biopsy. Since it is a very invasive and sometimes very painful exam, I preferred not to do it and repeat the MRI the following year (2022) with identical results to the previous ones. Today my PSA is 3.98 and given its linear and constant increase I think I can already predict what it will be in one or 2 years...
I have consulted several doctors, radiologists and urologists and the opinions are divergent. There are those who think that in the presence of 3 P-RADS 2 MRI and without variations over the years, it is not justifiable to perform a biopsy just because the PSA increases; this increase would be justified by age. There are those (almost all urologists) who recommend performing a biopsy anyway.
If I understand correctly, it seems to me that your case demonstrates that the increase in PSA can indicate the presence of PC, even if the various MRI scans are negative.
Considering your personal experience, as a patient and radiologist, I will really appreciate your feedback
I will be glad to share my experience but please be aware that I am not your physician and it would be inappropriate for me to give you medical advice. So, no medical advice.
A few considerations:
You said your PSA went from 1.6 to 3.98 (1/15 to 1/24). You didn't state over what time. A year? Is this a one year rise? In general, urologists don't look at the absolute PSA as much as they look at the rate of rise. A 20% or more increase in PSA over a one year period is concerning. My PSA went up more than 20% in a year and that was a red flag.
An MRI with contrast is a very good test when performed on a good machine and interpreted by a qualified, experienced Radiologist. It would be unusual to have a high grade prostate cancer with a Pi-Rads 2 reading. But cancers have to start small and there could be a small cancer it doesn't detect. It may also miss a cancer that is not as aggressive (growing as quickly). All tests, CT, MRI, PET, bone scan, US etc, are very good individually at what they do and the limits of resolution have improves greatly over the years, but they are not infallible. They are not 100% accurate (sensitive and specific). Having said that, consecutive years negative MRIs are certainly a good sign.
My experience with prostate biopsy (and having talked to others ) is that it is now a relatively painless procedure when performed under anesthesia. I was given propofol and the procedure took 15 minutes. I had no pain afterwards. I had a little a little blood in my urine for a week or so and blood in my semen for 6 weeks or so. As with any invasive procedure, complications (infection etc) can occur but are unusual. It seems you are concerned about the possible pain associated with the biopsy. I would not let that one factor keep you from having a biopsy. Does your urologist use anesthesia? Can you consult one that does?
I did somewhat ignore a rising PSA for 2 years. In early 2020 during my annual physical exam my PSA had gone from around 4 to 5.5 (more than 20% rise). My Internist referred me to a urologist (a colleague and friend for decades) who did a digital exam and felt nothing. I had a negative MRI. He said we could do a biopsy or repeat the PSA in 6 months. I elected to repeat the PSA. It went down a little and gave me a false sense of security. Also, should have consulted a urologist that didn't know me and would have treated me as just another patient. At my next physical exam in 2021 my PSA jumped to 7.5. Went to see a different urologist who said he was going to biopsy no matter the MRI results. However, he did want a repeat MRI because if it showed a specific suspicion area, he would be sure to get samples from there. The MRI did show a new, enhancing 1 cm nodule. On biopsy it was a Gleason 9 cancer. A RP ensued several months late. Followed by rise in PSA with PSMA PET revealing solitary T8 met. Radiated with SBRT. Four months later PSA again rising with rapid doubling time, repeat PET showed positive node in the pelvis wit presumed additional micrometers which weren't visible. Sought treatment at Johns Hopkins, ADT, Darolutamide, (second generation androgen receptor blocker), Chemo with Taxotere. PSA went rapidly undetectable. After chemo had full pelvis radiation. Now almost a year later I am still PSA undetectable and off all medication.
I guess the point of my story is I pretty much ignored a rising PSA (more than 20% year over year) and I wish I had gotten a biopsy a year earlier. There is no test (Imaging or blood test) that can definitively exclude cancer. In my career I biopsied thousands of organs and body parts. Even did prostate biopsies in the 90s before the urologists took them over. The significant majority of times the biopsies weren't painful for the patient (they said). No matter what the Imaging (CT, MRI etc) shows, you need tissue to make a definitive diagnosis. There were many times I thought the biopsy was going to be cancer form the Imaging and turned out to be benign and vice versa. Got to have tissue to know for sure.
You need to have complete confidence in your physician. Your physician needs to be well trained and up to date. If you are unsure, seek another consultation from someone at a large, respected institution. Prostate cancer, in particular, is a very complicated. I practiced medicine for over 40 years and thought I knew a lot about it. After I was diagnosed I have extensively read the literature and talked to numerous colleagues. I still know only a fraction of what my Medical Oncologist at Johns Hopkins knows. There is a saying "a little knowledge is a dangerous thing". I believe that. My daughter is a physician/Professor in Infectious Disease at a major medical center/teaching hospital. One of her colleagues gave her a coffee cup that said "Don't confuse your Google search with my medical degree". Of course, it was meant to be funny but there is truth in that. I am all for people being informed, being part of their treatment decision making and having the ultimate say so, as it is their (our) bodies. But I believe it can be foolish if laymen begin thinking they know more about the disease and treatment than their doctors. If that is the case, they need to find a new physician. I know I don't know as much and I rely on the advice of my physician because I trust him/her/them.
Good luck!
greg52: the one thing I would add to consider is that doctors are dedicated to helping people but they are not infallible. Collaboration is important and your input and questions are equally important. If your research comes from reputable hospital and organizational web sites you're in a better position to collaborate. For example, nccn.org is followed and USED by doctors to figure out diagnoses. It is also used by patients. Mayo, MD Andersen, John Hopkins, Weill Cornell/Columbian Presbyterian, Sloan Kettering... are all good sourcing sites. Manufacturers of products used can be a great source, for example, those that make a specific radiation type machine, or the companies that make spaceoar or BioProtect to separate the prostate from the rectum. Check outside the institution your doctor is in as their are inherent bias's. Second or third opinions are valuable. Trust but verify. You may get one chance to make an educated guess and be an active part of the decision process. You will find patterns and some surprises.
Dear retireddoc, I greatly appreciated your answer, full of wisdom, common sense and great humanity. Thank you very much!
I would just like to make a couple of clarifications. My PSA increased from 1.6 to 3.98 over 9 years, from January 2015 (1,60) to January 2024 (3,98). Thats makes an average growth rate of 20% each year. In all these 9 years I have repeated the test about every 6 months and it has always shown a fairly regular and constant growth, I could say linear, and probably I can guess how much it will be next July. Certanly you are right: urologist are concern to the rise most that to the absolut value.
My MR scans were performed with a multiparametric technique, T2, with and without contrast, and with a superficial and transrectal coil. The study was carried out in a highly qualified center and by a highly experienced radiologist. I live in the North of Italy and here most of urologists send their patients to this radiologist because recognized as very good. Anyway I know that the only way to be 100% certain about the presence of cancer is to wach cells under the microscope. That means biopsy!
Yes! You are right, until now I have procrastinated on the biopsy because I am afraid that it will be very painful. Many friends who have done it say they have suffered real torture. From their experiences it seems that the local anesthesia performed was not effective at all. In Italy it is usual to perform many medical procedures (childbirth, gastroscopy, biopsies) without anesthesia or sedation. Deep sedation, which would allow these procedures to be overcome without the slightest pain, must be practiced with the continuous assistance of the anesthetist, who however is a rare figure and therefore used only when truly essential. But there was also two other reasons
First of all, it is my understanding that PSA is not exactly cancer marker. Rather, a marker that can increase for many other reasons, prostatitis, infections, inflammation, hypertrophy... . perhaps this is why its use is at the center of numerous controversies, even by its own inventor, Richard Albin. I have heard some doctors say that PSA is a terrible indicator, but it continues to be used only because there is nothing better. Something like democracy which is the worst form of government except all the others.
Second. Let's say I take a biopsy now and the result is “No cancer”. Well! But the trend of my PSA already suggests that in a year this will rise to 4.8 and in 2 years it will be 5.8. And suppose that a new MRI showed no suspicion or no changes compared to previous ones? What to do at this point? A new biopsy every year?
However, now the correct choice is certainly to follow the advice of urologists and do a biopsy, even with 3 negative MRI scans. If, as I hope, the result will be "no cancer", I will try to live peacefully next year and then we will think about it. Now I have to look for a place where they do the biopsy under sedation.
I wish you all the best in your journey along this new experience, no longer as a doctor but as a patient. I hope to find you still here in a year.
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