Just sorta got diagnosed - so scared,... - Prostate Cancer N...

Prostate Cancer Network

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Just sorta got diagnosed - so scared, looking for support/advice anything...

VisualDeadlock profile image
17 Replies

Hi all.

Brief background. Firstly, I am 42 years old, so, on the younger side of things when it comes to this cancer. About a month ago, I went in for an MRI for something else, it came back negative for what I went in for, but it noticed an area of patchy hypointense signal on the peripheral of the prostate region.

Saw my Urologist - DRE was normal, and did a PSA test, the PSA came back at 0.33. Doctor advised that it was nothing to worry about but I decided on a multiparametric MRI. The mpMRI came back, I was listed as PI-RADS 2.

My doctor was recommending to wait a few months, but I decided to do a biopsy anyways - mostly because there seemed to be no explanation for this hypointense isgnal on the MRI (we didnt think prostatis or inflammation was an issue).

Got the biopsy results back today, well not the report (I'll get that on Tuesday) but my doctor did say over email that no cancer was found, but, there did find areas of atypical small acinar proliferation (ASAP). From what I have read - ASAP has a 40-50% chance of turning into cancer in 3-6 months on a repeat biospy. The main reason its not classified as cancer right not, is because there are not enough cells, or they are currently too small to make a definitive diagnosis.

So, thats where I am at right now. I'm scared bloody stupid, even though I dont have cancer now, I suspect that I will. Is the only real option at this point to repeat tests in a few months and see what they say? And in the likely case it is cancer at that point, what do I do then?

Thanks for any help or support.

17 Replies

So it appears that you are in a what is known as a watchful waiting situation. Some folks can't handle the anxiety of not knowing if they will get cancer. However just because something is suspicious doesn't mean you have to worry. Follow your doctor's advice. Since you aren't in an active surveillance status don't rush out and get additional biopsies. At this point I would consider this good news. You don't have to make a decision on cancer treatment you just have to be vigilant. I like what Mark Twain said about worrying “I've had a lot of worries in my life, most of which never happened.” Enjoy life! Andy

erjlg3 profile image
erjlg3

Stay vigilant and go out and have so much fun!! If it becomes cancer someday and you start treatments...... you'll possibly be tired. So LIVE freely and enjoy every single second. I think a scare can help to appreciate LIFE more.

My best wishes that it never becomes anything 😊😊😊

Most sincere,

Jackie

Roger2Dodger profile image
Roger2Dodger

The 2 replies you have, I couldn't have said it better. Take their advice.

ng27868168 profile image
ng27868168

BUT!!!!!! MAKE SURE YOU WATCH CLOSELY AS YOU WAIT! I prefer to use the term ACTIVE SURVAILANCE. Because of your young age, if you do have the beginnings of prostate cancer, it could be the more aggressive type. Not to scare you, but just be informed. Good luck.

Vitruviusman profile image
Vitruviusman

yes, repeated test and watching, testing, watching, waiting..

VisualDeadlock profile image
VisualDeadlock

Yeah, I mean regardless of what my Uro says, I will be re-doing PSA test in 3 months, and most likely a biopsy too, especially since there is a high chance the ASAP will turn into cancer. If all good, or no change, anothe repeat test in 3-6 months. Thats my tentative plan for now.

This waiting takes its toll mentally and emotionally so much. And the treatment options arent really that great, they come at a cost of ED or urinary incontinece it seems like. HIFU seems promising, but I may have the cancer on my Apex, so might not be eligible....

But then again, maybe my ASAP will turn into something benighn, here's hoping...

WSOPeddie profile image
WSOPeddie in reply to VisualDeadlock

Just remember that prostate cancer is very slow growing. Another biopsy in only three months seems unwarranted. I chose HIFU as my treatment and so far so good.

VisualDeadlock profile image
VisualDeadlock in reply to WSOPeddie

Know if HIFU is viable for minimal side effects if the cancer is on the apex?

WSOPeddie profile image
WSOPeddie in reply to VisualDeadlock

I don't know the answer to that. You'd have to talk to a HIFU surgeon. I do know that prostate size has a bearing on whether HIFU can be attempted. A prostate size over 40 (not sure of the units) becomes a problem. My prostate was '34' at diagnosis. After a couple of months into a 6 month eligard shot (originally take in preparation for radiation treatments) it was '27' when the HIFU procedure was performed.

VisualDeadlock profile image
VisualDeadlock in reply to WSOPeddie

Yeah my prostate is normal size (20.3 cc). My concern is the location seems near the urethra so saving the nerve bundle / minimal urinary or ED problems may not be possible.

Thanks for your reply. Out of curiosity, where did you get your HIFU done?

WSOPeddie profile image
WSOPeddie in reply to VisualDeadlock

I was treated by Dr Lazar in SF.

californiahifu.com/

VisualDeadlock profile image
VisualDeadlock in reply to WSOPeddie

Thanks WSO. Interestingly, I was looking at his profile, mostly because of the location being SF. I have a good friend I went to college who currently works in SF, so having him around would be so nice.

rf3rf3 profile image
rf3rf3

Hang in there.....you HAVE time to track and decide what's best for you. Don't rush into anything

So you don't have Gleason 3?

VisualDeadlock profile image
VisualDeadlock in reply to

Me? Not at this moment. No actual cancer was found, but areas of atypical small acinar proliferations were found. Upon additional research, there is a strong chance (up to 75% based on a 20 core biopsy) that it will develop into cancer on a repeat biopsy in the next 3-6 months. So, I'm researching.

I am pretty sure my Uro, whom, I will see on Tuesday (April 3) will tell me to wait a few months and then retest to see if the ASAP has become anything. In the meantime however, I have decided to try some holistic natural treatments (IP6 and Curcumin). I am very well aware these can turn out to be snake oils, but, as they are low risk, all I lose is a couple hundred bucks, but they can potentially have a significant upside if they work, even moreso since the cancer still has to develop.

in reply to VisualDeadlock

How is your health otherwise?

erjlg3 profile image
erjlg3

How are you doing VisualDeadLock? What is the status on your dilemma from last year? Hopeful that it was a false alarm. Update?

:) Jackie

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