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Dilemma regarding to have biopsy or go for treatment

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Posted 6/22/2018 4:07 PM (GMT 0)
Been a while since I have posted here, but have been an avid follower since 2013 When I was first DX with PCa with 3+3 Gleason score involving 10% of one core in a 12 core biopsy, and decided on AS.

Had a follow-up biopsy a year later, 2014, and nothing found, but unfortunately I got an infection from that biopsy, which wasn't fun. Actually, I was pre-septic, because they didn't realize the e-coli infection was from a ciprofloxacin resistant strain, and they kept me on the fluoroquinolones for a month before they discovered it through a urine culture.

Finally got me on the correct antibiotic, but whenever I stopped, the infection came back, though it was less severe than the initial infection, but ended up on suppression therapy with low dose Bactrim. It is possible the infection that was in the prostate is burned out by now, but I am still on low dose Bactrim.

Because of that experience I have been monitoring my situation through Prostate mpMRIs since, and the last MRI results came back with the following suspicious findings:

1. Focal findings suspicious for neoplasia identified in the left anterior fibromuscular stroma midgland, with an overall level of suspicion of 4/5 by Pi-RADSv2. Compared to the prior exam, this lesion is new. Of note, specificity is limited by lack of intravenous contrast, as the imaging findings of normal anterior fibromuscular stroma and prostate cancer overlap. (Note this MRI was done with contrast, and even though I have reduced kidney function from long standing hypertension, I should have had the contrast).
2. Capsular margin grossly intact - no suspicion for involvement.


location: Left anterior transition and fibromusular stroma midgland
Capsular involvement mildly bulges the capsule anteriorly
T2 signal: round markedly hypointense signal with blurred margins, 4/5 suspicion.
Diffusion-weighted imaging: focal markedly hyperintense high B-value DWI and markedly hypointense ADC,
766 square microns/second, 5/5 suspicion
Suspicion for extracapsular extension: 3

Suspicion for neurovascular bundle involvement: none

Suspicion for seminal vesicle invasion: none

Overall level of suspicion: 4/5


Here is my dilemma, and would appreciate any thoughts or insights

I am scheduled for a directed mpMRI biopsy at UCLA next month, but I am very concerned about the previous infection that I received from my last biopsy in 2014, and am wondering if I should see if they would just go right to the treatment phase, and explore the options, rather than going through another biopsy, and risk another pre-septic/septic prostate infection, especially in light of the mpMRI piRad of 4.

I also have been dealing with occular inflammation for about a year, which was managed by steroid drops, but whenever I tapered off, the inflammation in the eye came back, so they have put me on oral prednisone, 30 mg 3 weeks, 20 mg 3 weeks, 15 mg until I see eye doctor in 2 months, and I worry about having the biopsy while I am on oral prednisone.



The frustrating thing is I have tried to contact UCLA to talk to someone about my biopsy concerns with previous biopsy infection, and antibiotic resistance, and use of prednisone through phone calls, and emails for the last two weeks, but no one is getting back to me. Locally I am not getting any solid answers.

On Monday I will be having a phone consult with Dr. Mark Scholz, and hope he can provide some clarity to my situations.

Sorry be so long winded, but wanted to give a full picture of my situation.

My basic question is would I be able to go right to the treatment phase instead of going through another biopsy and risk another infection based on the 2013 biopsy results?


Any insights are greatly appreciated.


Thanks,


John


Also, I don't think I am a candidate for brachytherapy because my prostate is 68 cc, and don't they usually want it 50cc or less?

Thanks

Post Edited (johncl) : 6/22/2018 11:09:35 AM (GMT-6)

Posted 6/22/2018 5:36 PM (GMT 0)
John

Given your history I believe that you would be approved for a perineum approach. I wouldn't have anything done until I was off the oral prednisone therapy.

You may not need treatment.

You need some tissue to make that informed decision.


Good Luck

Hero
Posted 6/22/2018 5:52 PM (GMT 0)
In my case, the PIRADS 5 was in much better agreement with the surgical pathological report than the biopsy. Therefore, I am strongly biased to advice you to go directly to treatmet. Your old G6 is a passport for that if you want to follow this course. However, consider that a positive mpMRI does not constitute yet a diagnostic of significant disease by itself and also take into account the focal nature of your lesion, just a PIRADS 4.
Posted 6/22/2018 6:54 PM (GMT 0)

Herophilus said...
John

Given your history I believe that you would be approved for a perineum approach. I wouldn't have anything done until I was off the oral prednisone therapy.

You may not need treatment.

You need some tissue to make that informed decision.


Good Luck

Hero

Thanks Hero. Are you aware of anyone who does a perineum prostate biopsy in the U.S.?

The oral prednisone for the eye inflammation concerns me also
Posted 6/22/2018 7:06 PM (GMT 0)

jmadrid said...
In my case, the PIRADS 5 was in much better agreement with the surgical pathological report than the biopsy. Therefore, I am strongly biased to advice you to go directly to treatmet. Your old G6 is a passport for that if you want to follow this course. However, consider that a positive mpMRI does not constitute yet a diagnostic of significant disease by itself and also take into account the focal nature of your lesion, just a PIRADS 4.

"just a pirad4"?


I had the impression that pirad4 is likely jmadrid 7 or greater?


The real regret I have is that I had the MRI done w/o contrast because of my reduced kidney function. In retrospect that was bad judgement on my part. I have had gandolinium contrast before with no issues at all.


Thanks
Posted 6/22/2018 7:06 PM (GMT 0)
I agree with Herophilus - ask for a transperineal biopsy. It actually is much better for taking multiple cores from the anterior part of the transition zone. Transperineal has MUCH lower risk of infection. Also, knowing now that Bactrim works and Cipro doesn't is helpful.

I think it would be tragic to get radical treatment if you don't have to. PIRADS are just suspicions - you need confirmation. BTW- this is not something I would go to Scholz for advice about - ask Marks - he's the expert about such things.

You are right that brachytherapy isn't a good idea with a prostate that big. But at UCLA, you can get SBRT or HDR brachytherapy, both of which are not affected by prostate size. Surgery would be a good opinion as well.
Posted 6/22/2018 7:26 PM (GMT 0)
I had rectal swab at Duke on the visit before my schedule fusion biopsy. They called me at home the day before the biopsy and said they found ciprofloxacin-resistant E. coli and changed antibiotics. Maybe ask for a swab before the biopsy.
Posted 6/22/2018 9:36 PM (GMT 0)

Tall Allen said...
I agree with Herophilus - ask for a transperineal biopsy. It actually is much better for taking multiple cores from the anterior part of the transition zone. Transperineal has MUCH lower risk of infection. Also, knowing now that Bactrim works and Cipro doesn't is helpful.

I think it would be tragic to get radical treatment if you don't have to. PIRADS are just suspicions - you need confirmation. BTW- this is not something I would go to Scholz for advice about - ask Marks - he's the expert about such things.

You are right that brachytherapy isn't a good idea with a prostate that big. But at UCLA, you can get SBRT or HDR brachytherapy, both of which are not affected by prostate size. Surgery would be a good opinion as well.


Thanks Allen

This site is really a gem, and so fortunate to have the wisdom of folks like you

Am I correct that you are referring to Dr. Lenoard Marks at UCLA? I am in Northern California, but I would gladly see Dr. Marks if he will see me. I have all the DICOM images on disk of my current at past MRIs.

I would also ask him about a transperineal MRI if I am able to get in and see him


I am close to UCSF, and I have seen Dr. Shinnohara before, so if I cannot get in to see Dr. Marks, I will try Dr. Shinnoara.


Thanks

Post Edited (johncl) : 6/22/2018 4:11:57 PM (GMT-6)

Posted 6/22/2018 10:51 PM (GMT 0)
I'm confused - you had mentioned getting the mpMRI done at UCLA and consulting with Scholz (and you have no location in your profile) so I assumed you were in LA. Leonard Marks is in charge of the AS program at UCLA. He is not an easy person to talk to, but he knows his stuff. If UCSF is nearby for you, Shinohara or Carroll would be fine too. Other than the accomplished urosurgeons at UCSF , you have Gottschalk doing SBRT and Joe Hsu doing brachytherapy.
Posted 6/22/2018 11:33 PM (GMT 0)

Tall Allen said...
I'm confused - you had mentioned getting the mpMRI done at UCLA and consulting with Scholz (and you have no location in your profile) so I assumed you were in LA. Leonard Marks is in charge of the AS program at UCLA. He is not an easy person to talk to, but he knows his stuff. If UCSF is nearby for you, Shinohara or Carroll would be fine too. Other than the accomplished urosurgeons at UCSF , you have Gottschalk doing SBRT and Joe Hsu doing brachytherapy.

My fault for the confusion. I will be 69 in a few weeks. I am in the San Jose area. Since 2013 when they first found the 3+3, I have have been seeing Dr. Schultz and Dr. Shinnohara on AS. It was the biopsy I had done by my local urologist in 2014 where I got that infection from the biopsy. I think the reason I was vulnerable was because they kept me waiting a couple hours in the waiting room before the biopsy, and I should have rescheduled. After doing all the preps, coming to the appointment, and then waiting two hours before they could get to the biopsy, I should have cancelled the biopsy for that day. Lesson learned, a day late and a dollar short, but that really messed me up.


The reason I went to UCLA a couple of weeks ago for the prostate MRI was at Dr. Schultz recommendation. He has a lot of confidence in the way UCLA does their MRIs. They did it, a suspicious area in the Anterior/Transition zone, PiRad 4, and ordered a directed MRI biopsy at UCLA, not a fusion. I setup the appointment through UCLA for mid July, but now that I am taking the oral prednisone for the eye inflammation, and my previous infection with that 2014 I am having second thoughts, because no one is getting back to me from UCLA to discuss my concerns.


Since UCLA has my latest MRI, your initial suggestion about making an appointment with Dr. Marks, might be the way to get some guidence on my concerns for the upcoming MRI directed biopsy, since UCLA is not getting back to me either through email or phone, probably because Dr. Scholz is out of the UCLA system.


Anyway you have given me some possibilities to get clarification, and I appreciate that Allen.


Incidently, Dr. Shinnohara also isn't the easiest person to talk to either, but now that I am in this situation I have to get an assessment based on where I am today, with my pre-existing conditions on the risk of infection from the biopsy, and if perhaps if they can do a pernineal one, which I realize has its own issues, but less risk from infection which is my big concern. I don't know, maybe I will consult with both of them.

Also, appreciate the SBRT specialist's name Gottschalk at UCSF. If I decide on treatment I definitely will want to make an appointment with him


Thanks Allen

Post Edited (johncl) : 6/22/2018 5:43:09 PM (GMT-6)

Posted 6/22/2018 11:50 PM (GMT 0)
I meant by "just a PIRADS 4" that your mri shows a suspicious lesion of limited extension, actually focal, and there is not any evidence of extraprostatic extension. Unfortunately, both PIRADS 4 or 5 indicate lesions of restricted diffussion that are highly suspicious of a grade greater than G6. If this is the case, it seems than the "worse" part of your tumor is just starting to grow. IMO, high time to eliminate it. I understand you want to avoid another biopsy but going directly to treatment is a bit far away from the coventional path.
Far from being an expert in this mri stuff, I think I remember that the spectroscopic información provided by the gadolinium contrast is not a key factor included in the PIRADS sum.
Posted 6/22/2018 11:59 PM (GMT 0)

jmadrid said...
I meant by "just a PIRADS 4" that your mri shows a suspicious lesion of limited extension, actually focal, and there is not any evidence of extraprostatic extension. Unfortunately, both PIRADS 4 or 5 indicate lesions of restricted diffussion that are highly suspicious of a grade greater than G6. If this is the case, it seems than the "worse" part of your tumor is just starting to grow. IMO, high time to eliminate it. I understand you want to avoid another biopsy but going directly to treatment is a bit far away from the coventional path.
Far from being an expert in this mri stuff, I think I remember that the spectroscopic información provided by the gadolinium contrast is not a key factor included in the PIRADS sum.

Great explanation jmadrid.

The reason I mentioned W/O contrast is because in the report they indicate without contrast the area MAY be confused with BPH tissue, which I have, and why I wish I would have had the contrast given, though I am under no illusion that it probably is what it is.


John
Posted 6/23/2018 3:32 AM (GMT 0)
Actually, that IS the area of the prostate (the transition zone) where most BPH occurs. You absolutely need a differential diagnosis with a biopsy.
Posted 6/23/2018 7:33 AM (GMT 0)

Tall Allen said...
Actually, that IS the area of the prostate (the transition zone) where most BPH occurs. You absolutely need a differential diagnosis with a biopsy.

Logically, you are right Allen. I know there are no guarantees, but if I go through the biopsy I need to have some kind of assurance that I am doing everything possible to reduce the possible risk of infection, and since I don't feel I am getting those concerns addressed, the only way I can do that is make an appointment with either or Dr. Marks and or Dr. Shinnohara, so at least I know it is on the record, so if an infection does occur, it can be addressed as quickly as possible, and at least give me a fighting chance.

One thing I will say about UCLA for the directed MRI biopsy is their prep is much more thorough than any prostate biopsy I have ever had. They want you to go on a 24 hour clear liquid diet before the procedure, do an enema to clean out the lower bowel, start the prophylactic antibiotics two days before, continue it for three days after, give you a shot of gentamycin before the procedure, perform it under conscious sedation, I suspect using versed or something like that, and have you on IV during the procedure.

It looks like I need to reschedule the biopsy until I can make an appointment to see these doctors face to face

Very grateful for the insight you provide



John
Posted 6/24/2018 2:32 PM (GMT 0)
John:

During my research phase, and before my second biopsy, I asked a radiation expert at Wake Forest if he could proceed directly to treatment. He stated that he would not treat if the biopsy was older that 6 months. I was almost 2 years out, so had to proceed with the biopsy. This makes sense to me now. I think you need the biopsy before proceeding. Your scores may have changed, necessitating a different treatment.
Posted 6/24/2018 7:04 PM (GMT 0)

3 putt said...
John:

During my research phase, and before my second biopsy, I asked a radiation expert at Wake Forest if he could proceed directly to treatment. He stated that he would not treat if the biopsy was older that 6 months. I was almost 2 years out, so had to proceed with the biopsy. This makes sense to me now. I think you need the biopsy before proceeding. Your scores may have changed, necessitating a different treatment.

Thanks 3 putt, I appreciate your and everyone’s input

In my case I wish it was as simple as just having the biopsy, but i think in my situation it is a little more complicated

As a result of the 2014 biopsy u became uro septic, and they had me on the wrong antibiotic for a month before realizing the e-coil was resistant to cipro.. in fact as a result of that I am still on low dose bactrim as. suppression therapy because the UTI kept coming back. Add that to the fact that because of ocular inflammation, I am now on prednisone

I need some assurances that if I get an infection from the biopsy it can be treated effectively, and not receiving any responses from UCLA that will perform the directed biopsy is making me quite concerned

My experience when I got the infection from the 2014 biopsy which was done locally where I live was I was pretty much on my own. Between ERs, hospitalizations, and infection it finally got controlled, but it was a difficult path. At least in my case, as long as there was no complications they would d all with it, otherwise, good luck. It was an eye opening experience for me, and why I need assurances that an infection from a biopsy will be treated promptly

I will be consulting with several doctors my concerns, because I sure don’t want to end up like last time


John
Posted 6/25/2018 1:11 AM (GMT 0)
There are no ass urances in life...live...don't die...would be my advice...do not be offended ..it is an open forum...as John Arbuckle would say " ya get what ya pay for " Now isn't that a bit more refreshing than pablum...be cool johncl...be cool cool scool
Posted 6/25/2018 12:45 PM (GMT 0)

logoslidat said...
There are no ass urances in life...live...don't die...would be my advice...do not be offended ..it is an open forum...as John Arbuckle would say " ya get what ya pay for " Now isn't that a bit more refreshing than pablum...be cool johncl...be cool cool scool

It is called risk/reward logoslidat. In order to make an informed decision I need information. That is the assurance I am referring to.

When those who are supposed to be involved in the procedure are not getting back to me with the courtesy to answer my concerns I have a problem with that, and I need to find answers. For example, when I asked the question "is there an issue being on oral prednisone for occular inflammation a problem with having the biopsy?", it would be nice if they would get back to me.

I don't believe anywhere I expressed that I was "offended" by what anyone said, so I am somewhat confused by that conclusion. In fact it was just the opposite, I was appreciate of their insight, and in fact that interchange motivated me to actually make appointments to discuss these issues with several doctors, including those who are not responding to my questions.

In life we all have some decisions we make where there is no mulligans. In my view in order to make those decisions one needs to understand the risk/rewards to make a fully informed decision, and that is where I am right now.

I also appreciate your insight and input. I think there may have been a misunderstanding in what you thought I meant. I apologize for giving the wrong impression


All the best,


John

Post Edited (johncl) : 6/25/2018 7:23:38 AM (GMT-6)

Posted 6/25/2018 2:26 PM (GMT 0)
John, I've been silently following your thread and I know how frustrating it is to have complicating factors and not have your concerns addressed adequately by your treating physicians. It has in fact been rather painful for me just reading your experiences.

Unfortunately I am unable to make any recommendations other than to emphasize that if you are uncomfortable with your medical treatment or any circumstance or situation, that you would likely be better off if at all feasible just moving on and finding someone else, rather than being forced to endure yet another traumatic experience.

Take it from another one who's been there.
Posted 6/25/2018 3:00 PM (GMT 0)

RobLee said...
John, I've been silently following your thread and I know how frustrating it is to have complicating factors and not have your concerns addressed adequately by your treating physicians. It has in fact been rather painful for me just reading your experiences.

Unfortunately I am unable to make any recommendations other than to emphasize that if you are uncomfortable with your medical treatment or any circumstance or situation, that you would likely be better off if at all feasible just moving on and finding someone else, rather than being forced to endure yet another traumatic experience.

Take it from another one who's been there.

Thanks Rob. You nailed my feeling and frustrations in just a few words, and your advice is the direction I am going toward.

I think most of us know there are no guarentees, but we sure want to try to make the best informed decision.


John
Posted 6/25/2018 3:06 PM (GMT 0)
John,

I went up and down the west coast speaking to various doctors including another users suggestion of UCSF. All great docs but I found Dr. Thomas Ahlering of UCI to be incredibly knowledgeable regarding prostate cancer and a very good listener. You might research him as well. In my experience for any treatment or opinion always ask for statisctics on a practioners outcome.

Good luck in your search for more information.
Posted 6/25/2018 4:43 PM (GMT 0)
JohnCl...I get it...the offense remark was in case you got offended at my remarks...The hyphenated assurance...was a throw back to a phrase we used back in the day{never ass u me anything}...I was not calling you an ass...tho in hind sight...pun totally intentional...I should have seen that...I agree that they all should do their job and it is extremely frustrating when they don't...having said that...as we all know the paradigm has changed...as most institutions...have cubicles of responsibility( on mine and brick and mortar) ...never responding to...or even put to task.. for a failure of intra-facility co-ordination...much less inter- facility...what do ya do?...exercise a lot to chase dem demons out...being careful enoughl to keep a few...so as to need human forgiveness and then...navigate existence... Oh and I know there are no hyphenated marks...I like the " implied function " aspect of the human mind...umm the " ctl alt delete "...not so much...it reads(in my mind) control...altitude (oops)...delete...much too unforgiving for my being...regards...thanks for the rapport...logo
Posted 6/25/2018 5:05 PM (GMT 0)

logoslidat said...
JohnCl...I get it...the offense remark was in case you got offended at my remarks...The hyphenated assurance...was a throw back to a phrase we used back in the day{never ass u me anything}...I was not calling you an ass...tho in hind sight...pun totally intentional...I should have seen that...I agree that they all should do their job and it is extremely frustrating when they don't...having said that...as we all know the paradigm has changed...as most institutions...have cubicles of responsibility( on mine and brick and mortar) ...never responding to...or even put to task.. for a failure of intra-facility co-ordination...much less inter- facility...what do ya do?...exercise a lot to chase dem demons out...being careful enoughl to keep a few...so as to need human forgiveness and then...navigate existence... Oh and I know there are no hyphenated marks...I like the " implied function " aspect of the human mind...umm the " ctl alt delete "...not so much...it reads(in my mind) control...altitude (oops)...delete...much too unforgiving for my being...regards...thanks for the rapport...logo

Thanks logo.

I have been reading through these posts here for some time, and all I can say is the folks here are amazing
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