Going for Prostate Biopsy Tomorrow ….Looking for Opinions and Thoughts

Posted by indyguy @indyguy, Nov 18 11:05am

Hello,

I am going for a prostate biopsy tomorrow which I am dreading.
Here is a little background on me. I am 64yr in good physical condition. My PSA has always been high. When I first got it tested 9 years ago it was 5.65 in the years following it was 5.4 - 5.1 - 5.79.
All DRE were fine. Have had BPH for years. Had an MRI done and showed my prostate was a giant size of 171cc. Showed several benign nodules and one PIRADS 3 lesion 1.2 cm. Really don’t have any issues other than getting up 3x a night.

From what I have read with my results the my PSA density would be low which is a good thing. Just trying to find something positive before tomorrow lol. I have read for months about the prostate and it is very complicated. Anyone had a similar experience like me.
What are the odds that the lesion and PSA is all from BPH ?
I live in Indianapolis by the way.

Thanks

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Profile picture for indyguy @indyguy

@stldadof4
Thanks for sharing your experience. I will send good thoughts to you and hope everything turns out good. My biopsy is on 12-11. Let us know what you find out.

How do you go about sending your results for a 2nd opinion ? If not in network with your insurance I guess you pay out of pocket. Do you do a video call with the other provider that does the 2nd opinion or do they just send you an email ?
Thanks

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@indyguy
There are two places you can go for a second opinion that are very experience at doing it. You contact them and they take care of everything.

Dr. Epstein biopsy
https://advanceduropathology.com
Dr. Zhou

Send an email to Ming.zhou@mountsinai.org to inquire about a second opinion and ask for his specific instructions for the process.

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Profile picture for jeff Marchi @jeffmarc

@indyguy
There are two places you can go for a second opinion that are very experience at doing it. You contact them and they take care of everything.

Dr. Epstein biopsy
https://advanceduropathology.com
Dr. Zhou

Send an email to Ming.zhou@mountsinai.org to inquire about a second opinion and ask for his specific instructions for the process.

Jump to this post

@jeffmarc
Thank you very much !

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Profile picture for indyguy @indyguy

@stldadof4
Thanks for sharing your experience. I will send good thoughts to you and hope everything turns out good. My biopsy is on 12-11. Let us know what you find out.

How do you go about sending your results for a 2nd opinion ? If not in network with your insurance I guess you pay out of pocket. Do you do a video call with the other provider that does the 2nd opinion or do they just send you an email ?
Thanks

Jump to this post

@indyguy thank you. I will definitely update you all once I have results and hope you’ll do the same. Incidentally, I was really dragging the first couple of days after my biopsy, but now feel pretty normal (day 3) and a lot less blood passing. (That part was pretty gross.)

I plan to follow the advice here when it’s time for a second opinion. There are several threads about it when you search. I see that Jeff just posted some helpful advice about that. I assume it’s out of pocket, but sounds like it’s not crazy expensive, all things considered.

Here’s to hoping everything is early and manageable for both of us!

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Profile picture for stldadof4 @stldadof4

@indyguy thank you. I will definitely update you all once I have results and hope you’ll do the same. Incidentally, I was really dragging the first couple of days after my biopsy, but now feel pretty normal (day 3) and a lot less blood passing. (That part was pretty gross.)

I plan to follow the advice here when it’s time for a second opinion. There are several threads about it when you search. I see that Jeff just posted some helpful advice about that. I assume it’s out of pocket, but sounds like it’s not crazy expensive, all things considered.

Here’s to hoping everything is early and manageable for both of us!

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@stldadof4
Well, just heard from the Dr. on my biopsy results and 3 of the cores were positive for cancer (adenocarcenoma). One was Gleason 3+4=7, and two were 3+3=6. I believe the G7 was targeting the spot they saw in the MRI (pirads 4) and the two G6's were random, but I am not 100% sure on that. (The two random G6's actually have me more a little more concerned than the targeted lesion because they are literally a shot in the dark.) He is recommending RALP (prostatectomy) because of the G7 and since I am relatively young (57) and otherwise healthy. He confirmed what others have said here, that you can always do radiation later, if it comes back, but not necessarily the other way around. He also said this is very treatable, which is consistent with what I've learned here. I told him that I would want another opinion before proceeding with surgery, but they are going to set me up with their surgeon to talk about the option. They are going to do the decipher test, and I will look through the guidance here on getting second opinions. I'm thinking I should probably also request a PET Scan. There's my update. Obviously could be a lot worse, but I was hoping for better. @indyguy -- I hope you get better news following your biopsy. Please continue to keep us posted.

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*sigh,
I know , it is always a shock, no matter what the gleason is or how small the lesion is - it is always unwelcome and scary thing to hear : (.

The only thing that helped me and my husband was to concentrate on "good" parts of the whole picture - it took time and practice for me but was somehow natural thing for my husband.

After initial shock looses a grip try to concentrate on the fact that you have VERY low gleason and in a single spot (other spots that are 6 really do not matter *hugs) , and that you caught it VERY early and have a great chance of eradicating it for good !

Treatment plan - yes, for very young patients RP is suggested almost always but you have time to make a final decision and to listen to many opinions. Some members here had 7 or even 9 "second opinions" so do not shy from going out of that network that you are already working with. You know your life and your body and your preferences the best and you will make your decision accordingly . The most important part - with that gleason you can choose ANY modality and have very good result. Yes - insist on Decipher ! It can help you make more informed decision and ask for PSMA also.

Wishing you the best of luck with whatever you decide and sending healing vibes : ))) ! You will beat this thing ! You caught it on time ; ) !!!

REPLY
Profile picture for stldadof4 @stldadof4

@stldadof4
Well, just heard from the Dr. on my biopsy results and 3 of the cores were positive for cancer (adenocarcenoma). One was Gleason 3+4=7, and two were 3+3=6. I believe the G7 was targeting the spot they saw in the MRI (pirads 4) and the two G6's were random, but I am not 100% sure on that. (The two random G6's actually have me more a little more concerned than the targeted lesion because they are literally a shot in the dark.) He is recommending RALP (prostatectomy) because of the G7 and since I am relatively young (57) and otherwise healthy. He confirmed what others have said here, that you can always do radiation later, if it comes back, but not necessarily the other way around. He also said this is very treatable, which is consistent with what I've learned here. I told him that I would want another opinion before proceeding with surgery, but they are going to set me up with their surgeon to talk about the option. They are going to do the decipher test, and I will look through the guidance here on getting second opinions. I'm thinking I should probably also request a PET Scan. There's my update. Obviously could be a lot worse, but I was hoping for better. @indyguy -- I hope you get better news following your biopsy. Please continue to keep us posted.

Jump to this post

@stldadof4
Since there is only one 3+4 you need to find out some information.

What percentage of that core had a tumor? What percentage of that core was a 4? If the percentages are very low, And the percentage of four is 5% or 10% Then active surveillance could be a possibility. There is a lot of controversy over over treating people with very low amounts of prostate cancer. In some cases, it is recommended using active surveillance instead of treatment.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive and would usually mean you need treatment, not active surveillance.

Good to hear you’re thinking about getting a second opinion and a decipher score. They can really narrow down what treatment you should have and how soon.

REPLY
Profile picture for surftohealth88 @surftohealth88

*sigh,
I know , it is always a shock, no matter what the gleason is or how small the lesion is - it is always unwelcome and scary thing to hear : (.

The only thing that helped me and my husband was to concentrate on "good" parts of the whole picture - it took time and practice for me but was somehow natural thing for my husband.

After initial shock looses a grip try to concentrate on the fact that you have VERY low gleason and in a single spot (other spots that are 6 really do not matter *hugs) , and that you caught it VERY early and have a great chance of eradicating it for good !

Treatment plan - yes, for very young patients RP is suggested almost always but you have time to make a final decision and to listen to many opinions. Some members here had 7 or even 9 "second opinions" so do not shy from going out of that network that you are already working with. You know your life and your body and your preferences the best and you will make your decision accordingly . The most important part - with that gleason you can choose ANY modality and have very good result. Yes - insist on Decipher ! It can help you make more informed decision and ask for PSMA also.

Wishing you the best of luck with whatever you decide and sending healing vibes : ))) ! You will beat this thing ! You caught it on time ; ) !!!

Jump to this post

@surftohealth88 great advice. Thank you.

REPLY
Profile picture for jeff Marchi @jeffmarc

@stldadof4
Since there is only one 3+4 you need to find out some information.

What percentage of that core had a tumor? What percentage of that core was a 4? If the percentages are very low, And the percentage of four is 5% or 10% Then active surveillance could be a possibility. There is a lot of controversy over over treating people with very low amounts of prostate cancer. In some cases, it is recommended using active surveillance instead of treatment.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive and would usually mean you need treatment, not active surveillance.

Good to hear you’re thinking about getting a second opinion and a decipher score. They can really narrow down what treatment you should have and how soon.

Jump to this post

@jeffmarc great questions. The urologist didn’t give a lot of info, but I have an appointment in their office next week and can ask these questions. They use the “Follow my health” app, which is pretty terrible and there’s no real information on it about my results. My primary care doctor use “MyChart” which usually includes a lot more information. Thank you for the guidance.

REPLY
Profile picture for stldadof4 @stldadof4

@stldadof4
Well, just heard from the Dr. on my biopsy results and 3 of the cores were positive for cancer (adenocarcenoma). One was Gleason 3+4=7, and two were 3+3=6. I believe the G7 was targeting the spot they saw in the MRI (pirads 4) and the two G6's were random, but I am not 100% sure on that. (The two random G6's actually have me more a little more concerned than the targeted lesion because they are literally a shot in the dark.) He is recommending RALP (prostatectomy) because of the G7 and since I am relatively young (57) and otherwise healthy. He confirmed what others have said here, that you can always do radiation later, if it comes back, but not necessarily the other way around. He also said this is very treatable, which is consistent with what I've learned here. I told him that I would want another opinion before proceeding with surgery, but they are going to set me up with their surgeon to talk about the option. They are going to do the decipher test, and I will look through the guidance here on getting second opinions. I'm thinking I should probably also request a PET Scan. There's my update. Obviously could be a lot worse, but I was hoping for better. @indyguy -- I hope you get better news following your biopsy. Please continue to keep us posted.

Jump to this post

@stldadof4 in

Thanks for letting us know. Like you said, not terrible, but you were hoping for better. I am a newbie on here like you, but it sure seems like if a man has a prostate biopsy something will show up. I think it’s more rare that a prostate biopsy comes back completely negative. Seems like it’s always something and a lifelong thing that they say you have to check often. To be honest, it really pisses me off lol. Sorry that you didn’t get the news you wanted. I go next week for the biopsy and then wait for the dreaded phone call. I’m betting I won’t get the results I want either…I just want them to say everything looks great, see you next year lol.

After I had my MRI and the urologist office called I purposely did not answer the call lol. I waited and listened to the voice message and then called them back. I dread the phone call as much as the biopsy.

Like a few have said on here maybe you won’t need surgery right away if ever. I know I would put it off unless my results were really terrible. If you do have the surgery I’m sure you will do great. These guys and women on this site are awesome and their experiences are really helpful. Keep us updated and I will do the same.

REPLY
Profile picture for stldadof4 @stldadof4

@stldadof4
Well, just heard from the Dr. on my biopsy results and 3 of the cores were positive for cancer (adenocarcenoma). One was Gleason 3+4=7, and two were 3+3=6. I believe the G7 was targeting the spot they saw in the MRI (pirads 4) and the two G6's were random, but I am not 100% sure on that. (The two random G6's actually have me more a little more concerned than the targeted lesion because they are literally a shot in the dark.) He is recommending RALP (prostatectomy) because of the G7 and since I am relatively young (57) and otherwise healthy. He confirmed what others have said here, that you can always do radiation later, if it comes back, but not necessarily the other way around. He also said this is very treatable, which is consistent with what I've learned here. I told him that I would want another opinion before proceeding with surgery, but they are going to set me up with their surgeon to talk about the option. They are going to do the decipher test, and I will look through the guidance here on getting second opinions. I'm thinking I should probably also request a PET Scan. There's my update. Obviously could be a lot worse, but I was hoping for better. @indyguy -- I hope you get better news following your biopsy. Please continue to keep us posted.

Jump to this post

@stldadof4
I think waiting until you get your Decipher would be what I would do to discuss treatment options. This is what I did so just passing on my experience.

Your biopsies of 3+3=6 you stated are your most concern. These numbers are of the least concern. Pathologist don't even list any numbers below 3+3=6. Your 3+4=7 are something a lot of posters would have loved to have.

Please discuss your options after Decipher. It will give you the risk level of your PC and not the subjective Gleason Score. Regarding PET scan. I had the PSMA done as was recommended by UHFPT R/O. I had it and was negative.

I chose proton radiation after getting two different opinions from two different COEs.

You are young. I was 76 when diagnoses with PC. Thus you have a very long life expectancy. Discuss with your medical doctors the pros and cons of every treatment plan and decide what is best for you and your life. If in doubt at all seek a second opinion. Again I did this and just passing on what I did to help me make the right decision for me.

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