Pi-RAD score of 5

My neurologist is just so hard to talk to from the point that he just doesn't acknowledge that there is a lesser chance of infection through the transparaneal prostate biopsy. God knows he'd hit the roof if I asked for the psma or pet MRIS. Doubtless it's a routine conversation with a difficult patient for him but for me it could be the difference between life and death. I'm sure I can't be the first one who is more informed that their doctor.

I had a past doctor that was hard to talk to, he didn't want to answer my questions.

I don't know if he didn't know the answers or was in a big hurry to get to the next patient.

So I found someone else that had the patience and listen to me and explain all the options.

Don't feel bad if you have to find someone else.

The urologist I had been seeing for the last 20 years turned out to be totally worthless once all this pelvic pain started. And a pompous ass to boot as was the first older urologist I saw after I switched to a different group. But I'm seeing the younger doctor in the group who is really very good and everyone I've talked to says he's one of the best in town. He actually scheduled me to be his last appointment of the day and spent well over an hour with me one time answering my questions. But he's also the one who told me to stay off the internet after I expressed a preference for a transperineal biopsy due to the lower infection and sepsis rates. But when I got the pirads scores of four and five a couple weeks ago I decided that I had to bite the bullet and schedule a fusion biopsy even though it will be transrectal. And when one of their nurses called me 10 days ago to schedule the biopsy (with a different urologist in that group who does biopsies) I asked how many Fusion biopsies he has done, as I have read in several different places that you want to find someone who has done at least several hundred of the procedure you are facing. She said she didn't know and refused to try and find out. Same answer when I asked her what the infection and sepsis rates this doctor had. This is especially important for me to know as I have been taking Humira for years for psoriatic arthritis and has the effect of weakening your body's ability to fight infections. I just happened to think of this last Friday and left a message with them but it seems like it is something that they should have realized. So I'm thinking Monday I will probably call them and cancel the biopsy next Friday because of the possible issue with Humira. Thursday I also sent a copy of my Pi RADS disk and radiologist report to a urologist at the Cleveland Clinic who I had seen a couple times for second opinions. Delaying the biopsy for a month won't kill me but an infection well could. And maybe the Cleveland Clinic people will tell me how many of the biopsies their doctor has performed and what his post biopsy infection rates are. I wish I could find a urologist who does the transparaneal fusion biopsies. I haven't found one in Ohio and would be willing to travel to an adjoining state, but going to one of several clinics in Florida as someone suggested is a bit beyond my means. But PIRADS scores of 4 and 5 are something I can't ignore.

I have heard from several doctors over the years to stay off the internet, and I ignore them.  At some point, they will have to come to terms with the reality that they don't have enough time to spend with patients, and my health outcome is much more important to me than it is to them, no matter how compassionate they might be.  I am sure there are people who misinterpret or misunderstand the internet and appreciate that it may make the lives of doctors difficult.  In my case, I was able to identify that my gout was due to one of my blood pressure meds when my primary care doctor wanted to treat the gout with additional medications. I was also able to identify that my leg issues were classic neuropathy, when my primary care doctor referred me to a podiatrist for inserts. After that episode, I changed my physician.  My BP meds were changed and no more gout, and my neuropathy has been confirmed by a neurologist and we are working on treatment options.  Neither of those would have been addressed without the internet pointing me in the right direction.

I too have been experiencing foot and leg peripheral neuropathy for the past year-and-a-half. I actually got out of bed last Thursday and noticed that my left foot was bleeding and that I had cut my fourth toe somehow but of course did not feel any pain because of the foot numbness. The ER doctor put 6 stitches in it and told me I had cut it a third of the way through. I'm at a total loss how this happened is I never go barefoot even in the house. I can only surmise that I have a piece of glass hiding somewhere in the shag carpet in my bedroom. I am taking lisinopril for blood pressure. I have never been told that what I have is gout though.

 Really clear here.  You need a new urologist.  Period.   Communication  compatibility has to be very high in this situation.  No harm, no foul, move on.

 Rolf, sorry for another reply.  I don't know where you are in your process but I want to point out something that I believe is significant.  A urologist who reads an MRI isn't the same as a radiologist who reads an MRI.    Bottom line (no pun intended) is that it isn't easy to read MRI's!!  I am an MD (Emergency Medicine) and I can read a CT scan in some cases - but an MRI?  No way.  I don't have the background or experience.  As for traveling to Florida, you say that is beyond your means.  I can appreciate that - however, you can send your disk to Dr. Sperling and let him read it.  See what he says, ask him some questions and consider your options.  I agree that the Humira does greatly increase your risk of infection, however, assuming you aren't allergic to a whole slew of antibiotics, I wouldn't take that as the most important issue (i.e. transrectal vs. transperineal).  Also, in bore MRI biopsy is possibly the best of all worlds (as opposed to fusion, it is live MRI) and those aren't done transperineal, as far as I know, although I am not 100% certain.  I think that is related to pain with tp and the need for greater anesthesia.  Again, not 100% certain on that.

Easier said than done, I think, Davey22.   I have read the research being done at UCSF, but I don't know where anyone could get such a scan in the US.  From what I am reading it is being tested/used in men with recurrent prostate cancer.  Not sure if it would be available earlier in the progression.  I would be up for it myself, if I could figure out where to get one.  Any suggestions?

 

my hematologist in PA told to to refer to "Dr. Google", to check out the possible use of the anti-blood cancer drug Revlimid. So far, i'm stable enough not to need it. i'm dealing with 3-4 different kinds of cancer. unreal, how fast we rise to the challenge of fighting this crap! 

This thread has been meandering from PI RAD to gout to peripheral neuropathy.  I thought I would respond to your comment from a couple of months ago since I feel like I finally have an answer.  As I have stated before, doctors aren't as imaginative as they might appear of TV shows.  They address what is before them and often don't think like "House" did on the TV show.  I finally got the doctors to order some tests for the pain and numbness, the first being an EMG.  It confirmed the neuropathy in my legs.  The neurologist ordered an MRI on my spine, and I have spinal stensosis.

The MRI identified a number of issues, one of which was serious narrowing of the foramen in the L4-L5 area.  The neurologist said that was consistent with where I was describing the pain.  I tried physical therapy, chiropractic, massage, and had two epidurals.  Yesterday, I had surgery, a foramenotomy and a lamenectomy to give more space to the pinched nerve.  It was an outpatient procedure at the hospital, and I left yesterday afternoon once I had been cleared.  I noticed this morning that I can put on my shoes and socks without pain.  I was warned that there might still be pain due to the disruption the surgery caused to that area, but so far I have been doing quite well.

If you still have that neuropathy and still don't know why, after doing the diabetes blood work and ruling that out, you might ask your doctors whether an EMG is indicated if that hasn't been done and then go from there depending on the results.                        

There are several issues with transperineal vs transrectal.  You are completely correct that infection rate is one of them.  Given that you are on Humira, that is a very, very valid point.  However, access the whole gland isn't as easy with transperineal.  Also, they are much more painful and often require considerable sedation, even an epidural.  I wholeheartedly agree that you should know the infection rates.    Here in LA we have a number of doctors with hundreds, probably thousands, of TRUS biopsy experience.  If it were me, I would be willing to travel to get the right outcome, especially as you are on Humira.  I have a variety of antibiotic allergies, so it would be a bit of an issue for me, but no insurmountable.  I have read that instilling in/around the prostate with antibiotics (Rocephin, if I recall correctly) as lowered infection rates, but not everyone does that.  I think it is fair to ask and be given the number of procedures done and infection rate.  If I were you I would move on to another Urology practice.

I finally had a transrectal Fusion biopsy 3 weeks ago with my local urologist. And the results came back all zeros. So either the local radiologist who rated me as pi rads four and five had his head up his you know what or the urologist missed the cancers. He did tell me there was an 80% chance of finding cancer with a pi RADS level of 5. The Cleveland Clinic radiologist read the same MRI as 2s and wouldn't even do a Fusion biopsy for anything under 3. I stopped taking Humira 5 months ago and I've just resumed.

Well, bottom line - pardon the pun - is that is good news!!  This goes to show that inflammation can cause an MRI to be false positive.  If your MRI is read as 1 or 2, chances are, you are done for 6 months to a year.  If it is a 4 or 5, then it is uncertain.  You can get it re-read, as you did, and trust the 2nd reader (hopefully reading radiologists will agree, but if not, trust the one you feel is more experienced, or get a 3rd read!) and again, you are done.  Reading an MRI isn't black and white - there is a lot of gray, and that has to do with experience and honest differences of opinion.   It is an evolving science.  Sounds like you had a good outcome.  Good for you.

that's reassuring Rolf, I stopped today to pick up a copy of my cd and I asked the girl if more than 1 radiologist looked at them and she said no. Not looking for false hope but just one person reading them is kind of like putting all of your eggs in one basket.  I don't understand how they can be that different if there are guidelines for reading them. Wish you all the best

My 2 cents:

1. You must have the MRI read/reported on by someone who mainly does prostates. Someone who is not an expert in this will often misread and misdiagnose.

2. I had an expert read my 1.5T MRI and concluded PiRADS 4. In my research and talks with leading physicians it is common ground that an expert reading a 1.5T scan will better diagnose a PCa than a non expert reading a 3T scan. Of course an expert reading a 3T is ideal.

3. Over a year ago I had a transperineal biopsy as it is proven to be safer than transrectal procedure and suggest you do the same. The main benefit is that there is less chance of sepsis developing.

The hell of it is if you've never had a serious illness in your life how do you go about knowing who the real experts are? I doubt there are any doctors out there who appreciate being second-guessed by their patients. Or who wouldn't be offended if you ask them if they knew somebody better than they were to talk to. My urologist got really rude after I told him that transperineal biopsies were much safer than transrectal ones. He denied it and told me to stay off the internet. The urologist in the same practice who finally did my transrectal biopsy confirmed that transrectal biopsies have a much higher incidence of infection and sepsis. Even the nurse of the Year urologist to eventually did my biopsy got really offended when I asked how many of them he had done and would not tell me. However when I asked him before the procedure he said about a hundred and fifty Fusion biopsies. I finally decided to go to the biopsy route to rule out prostate cancer as an element and my pelvic and rectal pain. And my PSA has fluctuated from a high of 9.7 to the latest reading of 3.7 so that was a factor too. It's hard to think clearly and very emotionally draining when you're in pain and trying to make informed decisions about medical treatments.

i think the trouble we're all facing is that even the best doctors are still in the process of calculating how the various factors interweave to determine which of the various treatments best fit each case at hand. And if these experts are having a hard time doing that, after at least a decade of studies, how are we novices supposed to be as informed as they are? then there's the idea that sometimes the drs can't see the forest for the trees, seeing complexities that can cloud their vision, while we patients see the simplest solution... Occam's Razor...

I can understand a doctor being annoyed by patients that think they know more than the medic, but to be angered when asked to explain something better? no call for that behavior from a healer. 

I simply do not want to wait any longer to find out so having the trans-rectal fusion biopsy this Monday.  I met with my urologist and asked him the same questions. I do like him and he is very experienced. He advised that it is absolutely correct, much greater risk of infection in general.  I asked him how many of his patients developed an infection after and he advised that he has never had one. He is pretty straight forward.  I have to show up 2 hrs before to receive 500 mg of Levaquin via IV.

The thing I wonder about is what my PCP told me.  He said the MRI's  are accurate. He asked if the Urologist showed me the actual scan and I told him he had not. I never thought to ask to see the lesion as stupid as that sounds because I had so many other questions.  My PCP told me that he had it sent over to him to look at and he agreed that it was a "P5" - He told me that the MRI shows that it is more than likely cancerous by the thickness of the affected tissue/lesion. He said if it were a cyst or something benign it would look different. Almost like the radiologist is transcribing what the MRI shows. Yes, maybe he screwed up but I can't get out of my head what my PCP said.

Either way despite so many guys having these issues you are still scared as hell and feel pretty down.  It sucks.

totally agree. having 2 organs pierced with a hollow needle is scary; anyone claiming it isn't is in denial. sure wish there were a way to avoid it but without those GL scores, no dr will treat you. good luck with your biopsy. having mine april 6th - race ya to the finish line, bro!

Yeah there don't seem to be any urologists in the practice who specialize in pain in my case. Mine called me in about doing an ultrasound to check blood flow. I figured why not maybe they might find something that would help to explain the pain that I'm having. Turned out then he was checking me in order to use trimix, because I have had some level of erectile dysfunction the past couple years as well. But you didn't tell me that that was the purpose of the visit. Turns out that he's the reproductive specialist in the practice. I had the impression that the ultrasound was going to maybe provide some answers on the rectal and pelvic pain I was having. So he gave me a shot of the trimix in the office and it turned out is that it wasn't sufficient quantity for an acceptable erection. Of course I couldn't know that immediately. After he gave me the injection he asked me if I wanted to get a shot of the drug they use when the election lasts dangerously long. I said why the hell would I want to do that when I don't even know how the shots going to affect me. So I called the office back and asked if I could get a prescription for the drug which is common and available when an erection does last too long. His nurse call me back with the simple answer no he wouldn't prescribe it. With no other explanation. It's crazy because if I'm going to experiment with higher dosages and do have a problem I'm talking about driving an hour into town and an emergency room visit. I recently found out the hard way is that the nearest emergency room from me 10 miles away doesn't accept my insurance and Medical Mutual is trying to disavow my claim when I cut my toe half off and was charged about a grand from the Urgent Care Center closest to me. I'm appealing that but who knows what they're going to do. You go through two or three urologists trying to find a competent one, and he still has a problem with straight honest answers too well thought-out logical questions. So I'm going back to the Cleveland Clinic next week to see their supposed pain specialist. Last year I came prepared with the 2 page single-spaced document explaining all of my symptoms in detail. And I walked out without a physical exam any suggested tests or any suggested therapy. My own fault for not being aggressive and getting answers to my questions. Since my recent biopsy came back with results of 0, I need to call them tomorrow then put them on the spot on exactly what the purpose of my visit next week is. It's like a 5-hour round trip just for the appointment. I really don't know whether it's Occam's razor or Hobson's choice when it comes to selecting a urologist.

Physicians who know their work and are experienced have no issue being second guessed by patients. It's the inexperienced physicans who fear being exposed for living in the dark ages.

For instance, any doctor who argues in favour of trans rectal biopsy must have been asleep at the operating table when the National Center for Biotechnology Information (part of the National Institutes of Health) in Washington DC in 6/2017 argued in FAVOUR of transprineal biopsies because they are safer and more accurate than trans rectal biopsies. Google

ncbi nih Transperineal vs. transrectal biopsy in MRI targeting

Well I think the larger issue in the United States is that they simply do not have the equipment to do trans perineal biopsies. Or the training. And they have a large investment in equipment for the traditional transrectal biopsies. And the transrectal biopsies also cost significantly less to do so I'm sure the insurance companies have a word to say about that too. Happily I made it through my transrectal biopsy without any infections and it's been a month.

Still think having it is the best solution at this point, because like you say, what the hell is the alternative. None really. Wish you the best, keep us posted.

i keep trying to make sense of it all and have come to a few conclusions:

?1- doctors truly do not have enough knowledge to be doing the things they're doing, nor answer all the questions we have for them;

2- doctors are becoming aware that:

 a) what they thought they'd learned may not be correct;

 b) the data (new and old) available to doctors may not even be accurate.

3- doctors will rarely admit they themselves are confused about how to interpret what they're seeing today, in terms of what they thought they knew; 

4- given the plethora of new drugs, new technology, new treatments, etc., doctors are finding it impossible to keep current with ALL of it;

5- we probably have more healing abilities than doctors believe/understand.

Totally agree with all your conclusions. My primary care doctor wanted to start me on Cymbalta for depression a couple years ago and wrote me a prescription but before I started taking it I did some research on the internet. Sure I was depressed - I'd been in incredible rectal pain for a year. But the more I read about side effects of Cymbalta and the difficulty many patients were experiencing in tapering off or quitting I decided it wasn't the drug for me. And the doctor flat out told me that he had never heard of nor had any patients who had experienced any side effects taking Cymbalta or withdrawing from it. So he was either ignorant and didn't want to admit it or was flat-out stonewalling me. Same kind of thing with my urologist. P I rads scores of 4 and 5 but a 0 Gleason score after the fusion biopsy. And he told me that pi rads score of 5 indicated a 80 or 90% likelihood of cancer being present. I can only hope that it was the radiologist who screwed up and not the urologist who didn't Target the right areas for the biopsy. And when the urologist called me with the 'great news we didn't find anything' he wasn't inclined to go into why they might not have found anything or if anyone had made a mistake.

I agree completely,  great points Rich.  After doing a lot of research the best I have is about what you guys have, half assed answers from them medical experts so figured it is best to move forward. If I hear one more you are lucky if it should be Prostate Cancer because it is treatable. Treatable my ass with awesome side affects. Ya I feel lucky. 

As far as the high tech treatments, it is a exhausting journey researching all of the options and I don't feel any better to a solution. 

I disagree with PSA being unreliable completely. I know it is so very controversial now more than ever, but it was actual my PCP who insisted and found the issue by my very slow but increasing PSA. He insisted I see a urologist so I went. They basically told me that after having 2 years of small increases and last being 6.3 "something was going on". So it was my PSA that was the key for me.  I have absolutely no other of the general symptoms, non what so ever.

Anxiety of just thinking about it and lack of concentration at work at a highly active and stressful job has about wiped me out.   I am holding on to the fact that someone screwed up or the image may appear worse than it is, hopefully less than 5.

Then they tell you that you have time, really, how much time, it has to metastasize at some point if indeed cancer. So how long do you wait to confirm what treatment is best. Rip out your prostate and change your life forever.  Radiation doesn't sound much better.

As far as Cymbalta- that is BS, all medications affect people differently and they all can have side affects depending on the person.  I take Zoloft for anxiety, Dr. had me on 50 mg, but became more anxious and somewhat depressed so had me increase to 75mg - 75 mg makes it worse, feel like punching someone most days so have to decrease it again.

 

Glad to hear the biopsy went well (from an infection perspective).