Seeking Wisdom and Guidance

Posted by jbuscher123 @jbuscher123, 5 days ago

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.

yarddogman | @yarddogman | 5 days ago

I am somewhat in the same boat as you. I had similar numbers as you and my scheduled MRI fusion trans rectal is on 1/27. I have been fretting since Nov. The folks on here are a great resource to calm you down some and offer guidance. Everyone here knows what we are going through

yarddogman | @yarddogman | 5 days ago

My doctor ALSO wanted to do biopsy before MRI which made me wonder about him ??? I asked for MRI and he said yes

vircet | @vircet | 5 days ago

@jbuscher123 and @yarddogman I was on your situation over a year ago. I had two PSA tests within two months, followed by a biopsy, nuclear medicine whole body bone scan, CT, MRI-Guided radiatikon planning, then radiation treatment with ADT. So, in my experience, it's not unusual to have a biopsy before MRI. Although I have in this forum a number of times that it's better to have an MRI-Guided biopsy, instead of random samples of the prostate, the biopsy needle can target the area that the MRI indicated where the cancer can possibly be.

jeff Marchi | @jeffmarc | 5 days ago

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.
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http://prostatecancerpromise.org/

xahnegrey40 | @xahnegrey40 | 5 days ago

your PSA is not that high at all..but get the MRI with contrast using a high end 3 Tesla (3T) MRI machine
( which uses a powerful magnet twice the strength of standard 1.5T MRI to create highly detailed images of the brain, spine, joints, and soft tissues, enabling faster scans and detection of smaller abnormalities)

that should tell the tale..then biopsy IF MRI indicates suspicious tissue or swollen lymph nodes.

lastly, waiting a month or 3 with your PSA-even if you have PC-is not gonna make much difference...and if you do have PC, you will be getting on it early. So relax...a bit...Jeff Marchi ( on this site) is very knowledgeable of drugs, and really most PC protocol..he knows his stuff..

Most men will get some form of prostate cancer if they live long enough..if you catch it early with PSA then you can generally suppress it forever...but its the club no one wants to join, no question.

retireditguy | @retireditguy | 5 days ago

I'm not a medical professional so take my layman opinion with a grain of salt. That said, I interpret your doctor's actions a bit differently. Maybe scheduling is booked and he simply wanted to get you in the queue for a biopsy if needed, rather than waiting to schedule it after the MRI, radiologist review, and subsequent discussion with him (which might take a while to get through). It can always be cancelled if not needed. So I'd actually be glad he seems to be taking it seriously. Also, not every case of prostate cancer shows up on an MRI. Depending on what the MRI shows, you and your doctor can then discuss if a biopsy is indicated. There is a PSE blood test you can take. A bit pricey, but high reliability in detecting the presence of prostate cancer. If your MRI is clear you can ask your doctor if the PSE test might be a good next step before the biopsy. That said, the fusion biopsy wasn't a big deal for me. The next day I started a 10 day road trip and did fine. My MRI came back PI-RADS 4 and a biopsy was definitely indicated and unfortunately found cancer. Finally, one last thought. My MRI results showed up on the lab portal in a day or so. With the help of an AI, it was pretty easy to get a sense of what it meant. I have no idea if they do that there, but if so you may be able to see the results of the MRI well before the subsequent meeting with your doctor. Best wishes.

dhasper | @dhasper | 5 days ago

As I read this, I suspect they are simply holding a biopsy slot. That’s pretty common now. The typical sequence is MRI first, with a biopsy tentatively scheduled so there’s no delay if the MRI shows something concerning. If the MRI is low-suspicion or clear, the biopsy is often deferred or rescheduled.

The waiting is miserable, but a few weeks is extremely unlikely to change anything biologically with prostate cancer.

On the lifting/testosterone concern: current evidence doesn’t support stopping resistance training. Normal exercise-related testosterone fluctuations don’t drive prostate cancer progression, and maintaining strength and conditioning is generally viewed as beneficial, not harmful, especially if further treatment ends up being needed.

Given your family history and your sister’s breast cancer, genetic testing is also a very reasonable topic to raise with your care team.

You’re doing the right things — the hardest part right now is tolerating the uncertainty.

copyman | @copyman | 5 days ago

First I'm new to this PC journey that none of us want to be on. I know it's easier said then done but try and relax until you have more info. PC is typically a slow growing cancer. Dr Google can scare the hell out of you but I still search trying to educate myself. I believe knowledge is power! Not sure why your doctor would of scheduled biopsy before seeing MRI, maybe because of your past history? But the standard of care is, 1)MRI, 2)Biopsy, 3)PSMA pet scan, 4) Treatment options. Many suggest and have decipher tests done as well before deciding on treatment. I had the MRI then a MRI guided Transperineal biopsy, having PSMA in Jan. They used the original MRI to map my biopsy.
Agree with last poster you should be able to see the results of all tests on the John Hopkins patient portal. All major hospitals have patient portals and tests show up same time doctor gets them. If the results are confusing you can post results here and the experts (not me) can help explain.
I'm hoping your MRI shows nothing and you don't need the biopsy. I don't think a John Hopkins doctor is going to do a "blind" biopsy if MRI shows nothing. If you do need a biopsy ask for MRI guided transperineal instead of transrectal. Probably a hospital like JH only does MRI guided Transperineal but good to ask. Wishing you the best!

kenhorse | @kenhorse | 5 days ago

I was Gleason 8 in August 2022 and scheduled for RALP in November. 2 days before my scheduled surgery, I caught the flu and I was rescheduled for January 31st, 2023. I underwent successful surgery, all was still contained within the prostate ( stage 1a) and have had undetectable PSA since. Hope this helps.

jbuscher123 | @jbuscher123 | 5 days ago

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.