Seeking Wisdom and Guidance
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.
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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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2 ReactionsDon'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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3 Reactions@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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5 Reactions@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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4 Reactions@jeffmarc Mine was Gleason 4+4, when PSA was 2.4.
Jeff, do you attend the reluctant brotherhood?
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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4 ReactionsWell, 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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7 Reactions@wooldridgec
Yes, but I won’t be at the First meeting this year.
I only attend the advanced meeting with Peter.
@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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4 Reactions