Biopsy v non-Biopsy: Can you be diagnosed without a biopsy?

VA or non-VA healthcare, we all must be our own advocate and keep pushing to get through the system. I can do that (non-VA) and my spouse can do that (VA), but I fear for the people that do not have the time and abilities to make the system work.

In the past year of significant health issues, we've learned that for VA sometimes you have to go to the ER even for care that SHOULD be handled by your VA physicians. It's a $50 copay (I think) and a couple hours of your time, but well worth it. Also, let the system play out, but when the interns have again and again said "everything looks good" (but you know it's not getting any better) then schedule an appointment with the attending physician. When getting an appointment with your VA PCP is IMPOSSIBLE, then use the "Community Care" immediate care centers.

Same thing with my non-VA healthcare. I got 2nd and 3rd opinions. My first urologist was a "get em in and get em out" guy that never had time to explain anything to me. Until I went for a 2nd opinion, I had no idea that MRIs were recommended during active surveillance. Even with the world class care at Mayo Clinic, they wanted me to do Kegels but would not write an order for pelvic floor therapy to understand how. So I went to my PCP and he ordered it. The system is a mess, but maybe it's a mess everywhere? We just have to keep pushing along.

Then I will echo what others have said here....you should get a biopsy. I had two biopsies, no problems, gave me invaluable information to decide next steps in my cancer care. I did not want metastatic prostate cancer, saw my brother die from it and wanted to avoid that at all costs. A broken system and biopsies were not going to stand in my way.

Just my opinions, hope they might help some. Best wishes!

It does help. I am not getting any biopsies. I am happy to allow PC to do its thing. I just don’t want pain! I want it quick and painless. lol. Wishful thinking I guess.

The posts here outline a scary process but I would rather endure that than trust the VA with my care.

My recent Urologist said there are consequences for every decision - the true is right there! There are!

Thanks to all who provided advise.

@csbarry
I’ve had three biopsies and had no side effects at all from any of them. They were all transrectal And I didn’t get an infection. While they were a little bit uncomfortable, while being done, they were not a big deal.

I don’t know what’s scaring you, but you really are over emphasizing a fear of something that is not really fearful.

Do the perineal biopsy versus the transrectal biopsy. They rave that there is only a 1 to 2% chance of infection with the transrectal method. Why chance it, do the perineal method. The entire EU and Australia only allow the perineal method… Do the biopsy otherwise you’re walking around completely uninformed.

So...you have decided to go straight to the radical prostatectomy surgery? What have your PSA levels been, and over what span of time? In theory you don't need to have the biopsy if you have elevated PSA, positive Digital Rectal Exam, and perhaps a PET Scan with Gallium-68 tracer to tell you if the cancer is confined to the prostate or is outside the prostate. That would help guide decisions on surgical intervention: does the urologist/surgeon need to take one or more lymph nodes along with your prostate, seminal vesicles, and vas deferens. Your urologist needs that "road map" for doing the surgery. The only caveat "ya but"...in this is:
In order for your insurance company to "approve" the radical prostatectomy, they may require the "biopsy." And...

If I may ask, why are you against the biopsy? The low level of anxiety that I had was quickly allayed. The urologist uses a small ultrasound probe that is inserted no more than 2 inches into your rectum. The urologist uses the ultrasound to guide where (s)he will do the 12-core biopsy samples. The biopsy needle has a trigger and it goes in and retracts out INCREDIBLY FAST. You barely feel it...it definitely does not hurt in the least. An it takes maybe 10 minutes total. And...

While the resulting Gleason Score is just the tip of the iceberg, it does help you, your urologist, and the insurance company to know how far along your cancer is. But, the surgical pathology report on the entire surgically-removed prostate, seminal vesicles, and vas deferens is what is most revealing and important. While the Gleason Score tells you "Yes" you have cancer, and it is this far advanced, it says nothing of what anatomic and microscopic features the tumor has, and what that means to you long term. You can have a seriously high 5+4 = 9 Gleason Score, but by the grace of God, it is still contained within the prostate...it has not spread. Or...you can be like me with a realatively low-risk Gleason Score of what was barely a 3 + 4 = 7 (I only had 6-10% of "4" cells...most everything was just "3" level cells), but...I had lots of unexpected pathology and features to my prostate and tumor that saw me thrown into a higher risk category than that Gleason Score would have suggested. That is why I refer to the Gleason Score as "just the tip of the iceberg."
If it is fear and anxiety driving your reluctance to have the biopsy, ask for a single dose prescription of a Valium or other anti-anxiety medication. Take it 45 minutes before your biopsy procedure, and enjoy ultimate calm. And of course...Have someone drive you to/from the biopsy so you are not altered by the valium in your system, and can't drive safely. I think all guys here would encourage you to have the biopsy for any/all of the reasons I offer above.
Good luck.

@mpersonne
I was apprehensive too, but it's just a tad uncomfortable and that's it.

@csbarry
I'm just a tad confused, your ex-military and you don't want to deal with pain yet you will let PC run its course?. Help me understand that.

I am not ex anything - I am retired military and not afraid of pain - I am trying to find a way to avoid the pain of metastatic cancer.
I don’t owe you any explanation on anything. I am simply looking for alternatives to biopsies. Provide that or leave the chat - please

@csbarry
Morphine is the way to avoid the pain of metastatic prostate cancer.

My father died from me at 88. When I was a teenager, had his teeth ground down and crowned without Novacaine he had that much pain tolerance. He would come home at night and eat dinner with us.

In the two or three weeks before he died, he was on so much morphine he could not communicate. The pain was just unrelenting. If that’s what you want that’s your decision.

@csbarry I think that we are still confused. Do you want to avoid only the biopsy or also the treatment? The PSE and ISOPSA have already been mentioned. You could also get a PSMA, that would show if you have any cancer already outside the prostate. Without a biopsy result you would need to pay for it out if your own pocket. Sticker price where I had mine was $15k but after my insurance refused to pay, I was charged “only” $5,400. I was anxious to get it done, but later figured out that in Europe or Latin America it costs only $1,500. If this is a route you wish to look into, feel free to DM me and I can give you some contacts for centers in Germany, Mexico, or Colombia. All if them I believe can do business in English.