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.
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Since you had back pain for years (like most of us over 50) it's most likely due to age, working out, etc. I went through and still do at times stress over things I have no control over. When I found out about my PC around 4 months ago I couldn't eat or sleep until my GP prescribed some meds which helped a lot. Although I've always had some anxiety issues I could always control it but was really bad when I got the PC diagnosis. Once you have the MRI you will feel better because you will know something. In meantime enjoy the New Year with family & friends to take your mind off of it for awhile.
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5 Reactions@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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6 Reactions(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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11 ReactionsHi, 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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12 Reactions@jbuscher123
Your post really clarified what others were replying to you. Seems you have a pro active urologist and that is very good. The sequence you are being given is what I had and many others had. PSA, MRI, Biopsy.
I hope you don't join our club but we are here to give you our experiences with this dreaded but very common cancer among men. If you do have the biopsies please go over with your urologist the types you can have and pros and cons of each.
Has your urologist looked at you possibly having a UTI, or infection in prostate? The back pain could be from your exercising and sports. I have a lot of them now (low back pain). I had an old herniated disk that flares up from an old high school days in football.
You mentioned the muscles and tendons so maybe some stretching prior to/after and see if helps. I only mentioned it as I am into a stretching to keep from my back acting up.
Hopefully you will not be joining our club.
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3 ReactionsI agree with @retiredguy, order the PSE biomarker test from Oxford Biodynamics. It claims 94% accuracy and tells you whether you are likely or unlikely to have cancer. https://www.94percent.com/
I also agree with @jeffmarc. Take a genetic test. I took the MyRisk. I have children and wanted to see if there was any genes that might raise their risk levels as well as test for possible treatment options.https://myriad.com
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4 ReactionsThe great thing about MRI before a biopsy is that it shows the doctor exactly WHERE in the gland he should concentrate.
They do sample other areas, both for comparison and analysis, but targeted fusion transperineal biopsy is the newest and safest variation on this theme.
If it were me, I would want the MRI first. Your doc seems too anxious to do the biopsy, especially knowing that you were ill and on antibiotics
Phil
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2 ReactionsMy experience is that when my PSA increased over a couple of years, the urologist recommended a biopsy which did find early cancer (3+3). A year later, another biopsy (3+4). Then they did further testing--MRI, CT scan--to see if it had spread (it hadn't) and Decipher to see if it was genetically aggressive (it wasn't). I think this makes sense, since at first the only information is the PSA--let's check the prostate to see what that means. In your case, the previous cancer diagnosis possibly suggests early use of the MRI and CT scan to rule out spread. So nothing you said about the course of treatment seems odd. In my case, we went ahead with a course of radiation. But the long period of waiting (18+ months until completion of treatment) from the time of first diagnosis was mentally quite hard and I think it is for many of us.
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4 ReactionsWaiting was difficult for me. MD visit June, earliest MRI was July, earliest biopsy was August, earliest surgery date was December.
To get thru the waiting, I because friends with THC (legal where I am). Small dose (about 5mg), always before bed. If necessary, also 3x during day maximum. It worked wonders for me, improved sleep and decreased worrying. I stopped alcohol too (did not drink that much), but for me alcohol always creates more anxiety, especially the next day.
It's almost January, your MRI will be over with soon. Hang in there, you're getting the best possible care.
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6 ReactionsAge is better described as mileage. Professional athletes suffer earlier. I have read that golfers tend to get pain in one of the two sacro-iliac joints. Arthritis pain often has a daily cycle. Inactivity causes discomfort, (AM). Activity reduces it, Overactivity aggravates it (PM) Stretching and Advil (ibuprofen) suggest unrelated to cancer.
Relax: Let go and let' - - - ' and your doctors reassure you.
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