Seeking Wisdom and Guidance

Posted by jbuscher123 @jbuscher123, Dec 30, 2025

I will admit this is a group I had not been planning to join as a fit, 59-year old, but here we are. I have been reading various posts to become more educated about prostate cancer but thought I'd seek out the collective wisdom and fortitude of those here.

This past November, during routine annual bloodwork, my PSA level was "abnormal" at 5.8. Thinking it was an aberration, I asked for another test three weeks later, only to find the PSA level had risen to 6.5. The PSA "free" number is 10.3, which I also have read is not great for signaling whether I likely have prostate cancer or not. I am alarmed and terrified, as most of you who first receive these numbers must feel too.

I am under good care right now at Johns Hopkins urology, with the doctor who helped eradicate low-grade bladder cancer 9 years ago with no recurrence thus far. I also have survived surgical removal of malignant melanoma detected back in 2005.

I decided to open an account with the Mayo Clinic as backup and for second opinions, if needed.

While my next step is an MRI of my pelvic region January 7th, however I found it concerning that my doctor immediately suggested a biopsy, even before seeing any results from an MRI, based on the dramatic increase in PSA number Is that unusual? I was fighting the weird flu bug that is going around during my second PSA test and was on amoxicillin, so wondering if that may have affected my score?

The biopsy is scheduled for late January, leaving me wondering what to do in the meantime except fret, be anxious and lose sleep. Each day, I can only think about a cancer growing inside of me with nothing being done. I won't even know the results of the biopsy until mid-February. That will be over six weeks of just sitting around thinking about worst case scenarios.

I realize no one here is a doctor or can provide advice especially without knowing the results of an MRI or biopsy. My only source of information is what I read on the internet, and that can lead me down rat-holes that I'd rather not enter. I have read on here and other place that testosterone can lead to cancer spread. Is there anything I can do about that in the meantime? I still lift weights, which can produce testosterone. Should I quit? Don't I need strength for a potential battle with cancer?

My sister just passed away December 24th from metastatic breast cancer, which make me wonder if I need to be tested for a genetic disorder that makes it more difficult to fight cancer. My father had a prostatectomy 25 years ago at age 70, and he is still around at 95 in pretty good shape.

As you can tell, I'm a little lost and confused. So thought I would post here and seek advice on how to handle this interim period, while simultaneously entering a chat with those who have experienced MUCH more than me thus far. I am grateful for any advice or wisdom.

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

Profile picture for brianjarvis @brianjarvis

(Thanks for the later clarification regarding the scheduling of the MRI & biopsy.)

With the average age at diagnosis being 66y, your “middle-age” status is right at the cusp of that curve. (I was 56y when I was initially diagnosed.)

What’s important first is the MRI results, not the biopsy results. Once you get your MRI results you’ll have a good indication of the “probability” of the direction you’ll be heading post-biopsy.

Much of prostate cancer diagnosis and treatment involves waiting. Use that down-time to study, research, and become a “student of prostate cancer” (as I refer to it). If you do, you’ll be better prepared to make an informed decision no matter what the biopsy results are.
(Plus, it’ll keep you busy and not “just sitting around thinking about worst case scenarios.”

As you’re researching this, don’t just “read on the internet.” Instead, read from legitimate medical/hospital sources (like Johns Hopkins, Mayo, and others) as well as reputable organizations (like PCF, PCRI, and others).

As for testosterone, are you tracking that along with your PSA tests? Knowing your testosterone level will be beneficial later.

Lifting weights only creates a very slight increase in testosterone - and that slight increase is only temporary. (Otherwise, top bodybuilders wouldn’t need to take performance enhancers.) Also, weightlifting will be beneficial down the road (but, not for needing “strength for a potential battle with cancer”).

Regarding your family history of cancer. What they’ve found is that there are a few genetic markers that are common to prostate, cancer, ovarian, and some other solid-tumor cancers - and those genes can be passed from either parent to their children. They say that ~15% of prostate cancers have a genetic component, and that if a first-degree relative (parent/sibling) has prostate cancer and they have one of those genes, that it increases the odds of getting prostate cancer by 50%. (See attached chart of those genes.)

Yes, you should get the genetic test while you’re waiting. You may (or may not) have inherited any of those genes. If you can’t get the genetic test from your doctor or your insurance company won’t pay for it, you can get a free prostate cancer genetic test here: https://www.prostatecancerpromise.org/
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Curious as to what your annual PSAs were in the years prior to that November PSA of 5.8?

Are you sure that your “Free PSA” is 10.3? Or is that your “% Free PSA”? (Free PSA is typically lower than Total PSA.)

When the Total PSA is between 4.0-10.0 (the “grey zone,” they call it), % Free PSA is a helpful predictor of prostate cancer and helps decide if a biopsy is needed, with a lower percentage (< 15%) often suggesting a higher risk of prostate cancer.

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@brianjarvis thank you so much. My PSA last June '24 was 2.8. It ranged between that and 3.8 for the previous six or seven years. I guess that's why I was surprised when it jumped to 5.8 in November and 6.5 in December. My biggest fear is that's an indicator of an "aggressive" cancer, which is what makes sitting around doing nothing all the more agonizing.

The 10.3 number is the % Free PSA. I read that lower than 10 suggests a higher risk of prostate cancer, which is why being only .3 above that marker makes me think I am essentially in the higher risk category. Perhaps that's why my doctor decided on a biopsy regardless of what the MRI might - or might not - show?

As for the free PC genetic test, I clicked the link and tried to sign up, but it said I did not qualify because in the questionnaire, I could not say that I have been diagnosed with PC.

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Don't let them skip steps...
PSA
ISO PSA
MRI
Biopsy
PSMA PET
SBRT or RP (based on data and choice)

My urologist was very thorough and made sure biopsy was warranted. Gleason 3+4 from biopsy and clear PET...I opted for Radixact SBRT.

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Profile picture for jbuscher123 @jbuscher123

@brianjarvis thank you so much. My PSA last June '24 was 2.8. It ranged between that and 3.8 for the previous six or seven years. I guess that's why I was surprised when it jumped to 5.8 in November and 6.5 in December. My biggest fear is that's an indicator of an "aggressive" cancer, which is what makes sitting around doing nothing all the more agonizing.

The 10.3 number is the % Free PSA. I read that lower than 10 suggests a higher risk of prostate cancer, which is why being only .3 above that marker makes me think I am essentially in the higher risk category. Perhaps that's why my doctor decided on a biopsy regardless of what the MRI might - or might not - show?

As for the free PC genetic test, I clicked the link and tried to sign up, but it said I did not qualify because in the questionnaire, I could not say that I have been diagnosed with PC.

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@jbuscher123 It’s good that you’ve been following your PSA closely and took action at the first indication of concern. (The vast majority aren’t even tracking theirs.)

For now, you just have an elevated PSA; try not to let dark thoughts take you much beyond that.

The MRI will indicate the likelihood of clinically significant cancer being present (as well as whether there is perineural invasion, seminal vesicle invasion, or extracapsular extension). Based on those outcomes, you’ll consider next steps. Take it one step at a time.

Yes, there are a number of markers useful in estimating risk of prostate cancer. % Free PSA is one marker that if below 10, indicates that a biopsy should be performed.

I wouldn’t start using the words “aggressive” and “high-risk” just yet - those terms have specific meaning. The tests you’ve had so far - PSA, % Free PSA, and PSA Velocity/Doubling Time are indicators that further testing is warranted. Even the MRI will only tell you the “likelihood” of clinically significant cancer being present.

If your doctor had done a biopsy within it being MRI-guided, he would be doing what’s called a “blind biopsy” - just taking blind jabs into your prostate, hoping to hit something of interest. That’s not the modern way things are done.

Having an MRI first, identifies suspicious-looking areas to be biopsied. Then the biopsy samples those areas plus a few random ones. (There’s also what’s called a “saturation biopsy” that can be done if an MRI isn’t done first. You don’t want to have one of those…..)

Once you’ve had the MRI and biopsy, you can go always back to the free genetic test if you’re still on that path.

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Profile picture for jbuscher123 @jbuscher123

I'm grateful for all the feedback. I realized my comments weren't entirely clear on MRI vs. biopsy. Some caught it. The MRI is actually scheduled for Jan 7th. The biopsy for Jan 27th. I thought it was strange that the doctor wanted to get a biopsy on the schedule before even seeing the results of an MRI (which I thought would or would not warrant a biopsy). But as some have said, maybe it's just to be sure the biopsy gets on the calendar and can always be deferred or cancelled if the MRI comes back clear.

This subject of lower back pain is also concerning. I've been a golfer/athlete most of my life and have suffered from some sort of lower back pain off and on over the years. I was not aware of the association with prostate cancer and back pain. I just figured I'm getting old, have some strained muscles or maybe a pinched nerve. The worrisome part, I guess, is that the pain just sort of lingers. It helps to stretch and take Advil. Many of my friends also complain of lower back pain as we have aged. Now, it's just added to my anxiety.

If anyone has more clarification on the kind of back pain you have experienced, it would help. Mine seems to be in the muscles or tendons in the left lower back/pelvis region. But that's just a self-diagnosis.

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@jbuscher123 Good to see that the biopsy is scheduled enough after your MRI. As others have advised, you want the MRI first so that you can use it in an MRI guided fusion biopsy if lesions are detected. And if no lesions are detected, you then want to use the EpiSwitch test as explained here https://www.94percent.com/ If you get a positive on that test even with no lesions visible, you for sure want to go forward with a biopsy.

And As Jeff Marchi said, even if no lesions are seen and even if you get a negative on the EpiSwitch test, a biopsy could still be justified if your PSA stays persistently high.

And remember, when you do get to the biopsy stage, you want to target any lesions found and also sample evenly all other areas of the prostate so that any "invisible" cancer can be sampled. Invisible cancer is most often 3+3 and 3+4 cell groupings that don't appear any different than healthy cells in an MRI scan. But again, as Jeff Marchi pointed out, invisible cancer can even be much higher grade cancer than 3+4 cells. Point being to always have the biopsy target any lesions and also areas of the prostate that appear blank of cancer in the MRI.

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Profile picture for jeff Marchi @jeffmarc

@jbuscher123
A couple of things
Even if your MRI shows nothing, you could very well have even Gleason nine prostate cancer. If you were to look through the last year or two of messages in this board, you would find people that had exactly that happened to them. The MRI can be very useful. It is not the final answer.
A biopsy may still be necessary If your PSA continues to rise.

As far as lower back pain goes. I’ve had it for probably 40 years. Hits maybe once a year. I put on this belt. I found about 40 years ago that just stops it. I’ve had it no more or less while I’ve had prostate cancer for the last 16 years. I’ve been on ADT for eight years and it makes no difference to my back pain.

There are muscular issues that can occur from ADT and low testosterone. That could be what’s happening or could just be a normal condition you have. Usually, you hear about joint pain when people have problems with ADT not lower back pain.

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@jeffmarc Mine was Gleason 4+4, when PSA was 2.4.

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Profile picture for jeff Marchi @jeffmarc

Your timing for the MRI and biopsy is so soon that it really isn’t an issue. Prostate cancer is relatively slow growing and your being sick could’ve affected your PSA. Your doctor was getting a little anxious Considering how quickly you can get an MRI.

You should definitely get genetic testing. I got PC at 62 because I have BRCA2. My brother got it at 77 because he didn’t, but he had a father with PC. My father died of it at 88 but he did not have BRCA. I got it from my mothers side of the family. Both of her sisters had breast cancer. One died of it and So did her daughter at 60. My mother never got it, but passed on the BRCA2 to me.

Has hereditary genetic testing been offered to you by a doctor? You can get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
`
http://prostatecancerpromise.org/

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Jeff, do you attend the reluctant brotherhood?

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I had an MRI and had to wait 2 1/2 fraughtful months for the fusion biopsy because of high demand and low supply.
I read and recommend: Patrick Walsh's book Surviving Prostate Cancer and the free Patient Guides from PCF.org (download or hard copy).
These resources helped me calmly understand some of what I was facing and were very educational.
My biopsy was Geason 9 after MRI and Biopsy at the Hershey Medical Center in central PA, and I then had my treatment at Johns Hopkins. You are in good hands at JH.
Best wishes.

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Well, aging is not for the feint of heart.

There are a number of tools to ascertain if you have prostate cancer and what.

Others have discussed:

PSA
DRE

These two by themselves are not definitive.

From the Prostate Cancer Foundation website on screening...

...DRE cannot feel prostate abnormalities in the anterior (forward) area of the prostate, away from the rectum, and is often most useful only when the prostate cancer has grown sufficiently to cause cancer that can be felt with a finger. The DRE is no longer recommended as a standalone screening test for prostate cancer.

So, what clinical data is? As the old saying goes, the more data, the better...

Some other possible clinical data sources:
https://www.google.com/gasearch
https://www.medpagetoday.com/urology/prostatecancer/118778
https://www.google.com/gasearch
https://www.google.com/gasearch
https://pmc.ncbi.nlm.nih.gov/articles/PMC4495493/
Discuss with your medical team...

I am not sure at this point, without knowing if and if, what you have, fretting about treatment decisions is advantageous.

Why do I say that? Research has brought about a plethora of choices depending on the clinical data.

Like everything else, prostate cancer has its own language, tents, definitions. Now is the time to learn them so that you can have meaningful discussions with your medical team.

There are many websites which have patient centric resources. I'll mention two which I use, others can chime in with theirs.

Prostate Cancer Foundation
Prostate Cancer Research Institute.

Once you have a handle on the language then it's time to familiarize yourself with the guidelines. The two I stay abreast of are:

NCCN
AUA

These are the science, Phase III clinical trials, peer review..,

They may serve as the starting point in discussion with your medical team. I say that because given the rigor behind these guidelines, it takes time to make it into them. Meanwhile research continues... also, they are population based and may not fit your clinical data exactly.

So, you have homework to do, more data gathering, then, have discussions with your medical team and decide if, when, with what, for how long, measures of success..

As you go about the process, check back in with this group to get their assessment and feedback.

We are not trained, educated, board certified or licensed medical folks but there's a heck of a lot of corporate knowledge!

I'm at the 12 year point, future looks bright, in part thanx to medical research and the plethora of treatment choices which have enabled me at this point to manage this as a chronic vice fatal diagnosis.

Still, I don't forget the early days when my mind was racing with dire thoughts! Especially after these two events:

My urologist calling me after my biopsy saying "Kevin, you have prostate cancer."

After my initial consultation with my urologist as we're walking out to schedule a consult on surgery, "Kevin, that's a pretty aggressive cancer...!"

Ouch!

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Profile picture for wooldridgec @wooldridgec

Jeff, do you attend the reluctant brotherhood?

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@wooldridgec
Yes, but I won’t be at the First meeting this year.

I only attend the advanced meeting with Peter.

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Profile picture for mjp0512 @mjp0512

Hi, welcome to the group and so sorry you found it necessary to join. I was just diagnosed in May so I'm far from old hat at this but... You are at the "I don't know what I don't know" part of this journey. It's not time to worry yet. Don't let worry rent space in your head. It has no useful purpose other than to ruin your ability to sleep. As others have said, there is a "standard of care" process. The first phase is of that process is diagnostic. The reality of this phase is that no matter what initial scans say, the only way to know, for sure, if you have PCa, or not, is biopsy. I was hospitalized last spring for renal failure caused by urine retention due to (unknown at the time) PCa. 2 CT scans, an MRI, and 2 ultrasounds came back negative with zero mention of possible malignancy. A few weeks later, biopsy came back with 12 of 12 cores involved.

Once that diagnostic phase is over, you'll have a choice how to handle it. If no cancer, congratulations and get on with your life. If cancer is present, you can worry (which still does absolutely nothing to help) or you can do what I did and just get plain pissed off at the cancer and fight it. Learn everything you can about it and then get on with your life. You're at Johns Hopkins. That's a pretty darn good place to be if you end up having to fight.

As far as back pain, I can empathize. I ruptured a disc @ L4/L5 probably playing golf. In June, a PSMA PET scan identified a metastasis on L5. Back pain is part of life for me at this point, but the tumor will get zapped if my next scan does not show improvement and inversion traction keeps the disc in check. Maybe if you let your doc know about the pain, he can order a full lumbar scan while you're in the MRI anyway. At least then you'll know if you blew a disc or not and if so, get some PT to help. Best wishes and just keep in mind that a positive PCa diagnosis doesn't end life. It just changes it up a bit.

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@mjp0512

I had many tests like PET Scan, biopsy, and a bone scan but no one except the urologist seems to look at the results. My heart doctor was not made known about the PET scan and my personal doctor does not seem to look at any of my test data. I had to personally carry the results to each of my doctors to get any attention. Even your dentist and dermatologist should know if you are getting radiation treatment. Make sure that your personal doctor and all specialists know about your exam results. These exams show more than just cancer issues.

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