early concerns/ paranoia

[Willie51]

Feeling a bit guilty taking up space here before I have any real diagnosis. I’m 72 years old and my annual physical in November saw my PSA numbers double from 3.2 to 6.4 and then retested a month later they were 7. Sounds scary to me. My urologist ordered an in-home EXODX urine test 14 days ago which is supposed to test for aggressive cancers and was supposed to be back to my urologist’s office in 3 days. There was a 5 week delay in getting a MRI because I have a pacemaker (approved but very few labs will do it). My urologist’s office says they dont discuss the urine test until the MRI results are in (still another 10 days). Sounds to me like the results weren’t good and the MRI will tell more about how bad. Then of course biopsy would follow. I know this is early days and I could be over-reacting. Any advice early on to look out for as this proceeds?

[Tall_Allen]

Strange that you didn't get the ExoDx report:

exosomedx.com/physicians/ex...

Just in case (I know you have a long way to go, since you haven't even had a biopsy), you may want to read this:

prostatecancer.news/2021/12...

[Willie51 in reply to Tall_Allen]

Thanks.

[Hidden]

I know what you’re going thru. Went thru it this Summer. Same thing …with annual physical showing elevated PSA for the first time and I’m 77. The steps always take more time than you than think/want…and it’s more scary not knowing. Either outcome really isn’t the end of the World. Lots of options. Do you like your Urologist? I assume you are working with a Urologist (not just your primary care doctor). Do you live in or have access to a city that that has an established Prostate Treatment Program? It will, as with this site will help you develop a list of questions for your Urologist. Also I have found support groups to be extremely helpful…real people at all stages of the process who share there experience and will gladly help answer your questions. They will talk you thru the process and share their experience of the available options…I am in the final stages of selecting the option I want to go with…it’s taken 4 months to research and from my experience when I got involved…seeking my answers and learning …much of the fear and anxiety was eliminated.

Lastly, in my experience, you need to be your own advocate and actively involve yourself in the process…good luck

[Willie51 in reply to Hidden]

Thanks so much. It is so early and hard not to fear the worst. I have a very good primary care doctor who is concierge and a decent urologist. Problem is he like many doctors these days has been bought out by a larger medical conglomerate who impose their own rules and procedures. It very hard to get through to anyone that actually knows anything. I live in Southern California so there’s top notch medicine around. One good friend did a whole round of bladder cancer recently, was very proactive in finding the best doctor (who also does urology) and I’m hoping to use him if necessary. Thanks again I appreciated your advice.

[Hidden in reply to Willie51]

You should have a Urologist you like…preferably a big facility who does hundreds…thousands of various Prostate procedures. Recommendations are good but you don’t have to stick with the Urologist you started with. I got a second and third opinion…each will look at your MRI results independently. The first for me was my initial Urologist who managed my Bladder Cancer…which was a breeze compared with this. He is also well respected for Prostate also and part of Northwestern University Medical. Second opinion was also an expert( world class) at University of Chicago. I’m going to go with the third who is the furthest away but who I feel most comfortable with and with his suggested procedure. All of them know each and you don’t have to worry about hurting their feelings if you switch midstream. The best urologists want you to go to who you feel the best about. If it turns out you need a procedure,get several,opinions. With each consultation you learn more and are more prepared with your questions for the others. AND…Don’t feel you have to make a quick decision. Several months is common.

[Willie51 in reply to Willie51]

Thanks still waiting biopsy

[Willie51 in reply to Hidden]

Thanks

[PugLvr]

Willie

I was diagnosed about 2 weeks ago. It is scary , the time of waiting in between tests is agonizing. I am still trying to make a decision about how to proceed. Given your age , if diagnosis is cancer and if low risk you could be simply on monitoring. It really boils down to what the MRI finds. I found lots of support and information on this site . Also, on YouTube check out videos by the Prostate Cancer Research Institute.

Good Luck. Take a deep breath and find a way to ground yourself everyday with positivity.

[Willie51 in reply to PugLvr]

Thanks

[Willie51]

everything on this site is helpful and supportive. To the novice all the info at one time is a bit daunting. Is there one source you could recommend that explains everything in layman terms? Including a glossary of terms and definitions?

[Darryl Partner in reply to Willie51]

here’s what you are looking for healthunlocked.com/advanced...

[Willie51 in reply to Darryl]

Thanks

[Willie51]

Perfect. Thanks so much!