Frustration with biopsy scheduling due to MRI issues

@keithl56 Sounds just like my experience getting a 2nd opinion at a COE (Mayo in my case) 😉. Good luck!

@jcf58

I just got my MRI report from Johns Hopkins. Their radiologist upgraded my Pi-Rads score from 4 to 4/5. I have a month to ponder this bad news before my biopsy. I think that this squashes any hope of a focal treatment and I'm probably looking at some combination of RP, radiation, and hormone therapy.

Anyone with a high Pi-Rads 4/5 have a positive experience?

@keithl56

I would not assume a Pirads4/5 eliminates focal treatment.

Just continue your information path: Biopsy and Doctor consults.

I have a Pirads5 lesion. I did consult with Doctor about TulsaPro. Doctor indicated he would do HIFU.

However, lesion size and location made me not a candidate for TulsaPro. Pirads4/5 was not a precluder.

From my experiences, do not let your thinking get too far in advance of information.

In general, Gleason score is a much larger factor vs Pirads rating. For example, multiple biopsy cores at 4+3 will guide treatment options/decisions much more than Pirads rating.

Follow path of getting biopsy results and then go from there.

Best Wishes.

I experienced what I thought was an alarming delay in getting a diagnosis after getting an MRI report that stated "PI-RADS v2.1 score 5: clinically significant cancer is highly likely to be present", with "Bilateral seminal vesicle invasion seen".

At the time, I did not understand exactly what this meant if a biopsy confirmed it, but I did understand that an MRI finding of "clinically significant" meant I needed doctors to get a better understanding as soon as I could.

I thought that some centers would offer a fusion biopsy, but when I went to the nearest NCI designated cancer center the urologist I saw gave me an appointment for a non fusion biopsy slated for two months from the date I saw him, which would be three months from the date of the MRI. He said don't worry, data shows that a delay won't affect anything.

I wondered about that. I was doubtful.

I went to a community urologist close to where I lived. I had studied a bit about MRI by then, and saw that studies were still showing a wide variation in MRI reports. The same MRI interpreted by different individuals at the same centers of excellence would be found to vary tremendously. Hence, I thought, the somewhat less urgent attitude displayed by the NCI designated center guy. MRI is taken to indicate a need for further investigation, not diagnosis.

I was able to get in to see a local "community urologist" within a few weeks. I asked about why the NCI designated guy didn't seem motivated to get to the bottom of this very quickly. He said that during COVID, many patients experienced significant delays in getting diagnosis, and a subsequent study (or studies) had found no significant difference in eventual treatment outcomes. However, he questioned the idea that no consequence was likely to come as a result of delay.

He was able to schedule a non fusion biopsy very quickly - the next week or two as I recall. He said the MRI image showed a lesion big enough it would not be possible for him to miss it. He took cores from various areas including the seminal vesicles. The biopsy confirmed the MRI finding and made things more concrete: Grade group III, cT3b, "high risk". The "b" means the cancer was confirmed to have managed to get out of the prostate already by invading the seminal vesicles.

I took this result to the NCI designated center. Suddenly, things were taken more seriously. They gave me an appointment for one week later. At that time, the guy discussed surgery and referred me to a radiologist for consultation.

If in my present state of understanding things, if I was presented with an MRI like yours and things were being held up because the people I was seeing needed MRI data to perform their fusion biopsies and they couldn't get it, I'd pursue getting a non-fusion biopsy.

When my biopsy was performed, it had still proved impossible for the local guy to get the images from my MRI report because it was done at the NCI designated center and there was some kind of incompatibility.

The images were available to me on my laptop as they were posted on MyChart at the NCI designated center. I took my laptop in with me as the biopsy was about to be performed. The local urologist studied the images on my machine, and performed a "cognitive biopsy". His study of the images produced a picture in his mind, and guided by the ultrasound in my rectum, he took cores from the suspicious areas and also cores from some random locations.

@climateguy

It's easy to delay an important test if you're not the one who needs it! I have 4 more weeks of uncertainty until my fusion biopsy. The wait is excruciating, especially since it should have been done 2 weeks ago if they hadn't screwed up reading the MRI.

Did you decide on a treatment plan yet?

I consulted two urologist/surgeons, and two radiologists. Both the surgeons said they would remove the prostate but both seemed to believe there was a likelihood that the surgery would not be a cure, i.e. that I would experience further problems and be prescribed radiation.

They didn't put things that way.

The first urologist I saw was a community guy who claimed to be the guy in the region centered on a city of 100,000 or so, who did the most prostate surgeries. He said I should choose between surgery or radiation, saying the outcomes would be equivalent, differing mainly in the type of side effects I might experience.

The second urologist, who was working at an NCI designated cancer center I'll call a center of excellence, or COE, claimed he had done a similar number of surgeries that the first guy had claimed, and seemed to be saying the same thing: choose surgery or radiation, its up to you, the results tend to be equivalent although the side effect profile will be different.

I agreed to schedule surgery with the COE guy. Then I read his clinical note. It said that contrary to his recommendation that I not have surgery, he agreed to perform it because I was so set on getting it. The thing was, he made no recommendation as to surgery or radiation at the appointment when I agreed to schedule surgery with him.

This woke me up to the difficulties doctors and patients have in understanding each other. I wrote him saying please refer me to anyone else at this COE, as I need to trust my doctor to tell me what the score is to my face. I concluded that he wasn't all that optimistic that the surgery would be successful.

I re read the clinical note posted by the first doctor, i.e. the community urologist. I realized what his statement "this case might need a multimodal approach" meant. He also was not optimistic that surgery would be a success in my case.

If surgery fails, i.e. if radiation afterwards is then required, many oncologists will say why experience both sets of side effects, i.e. surgery and radiation? Try and figure out if surgery is likely to fail beforehand. Since by now I had concluded that the two surgeons had serious doubts the surgery would be a success, although they didn't clearly state this to my face, I decided I was much more in favor of radiation.

I then consulted two radiologists who both agreed on the same treatment plan. I chose the COE guy, not only because he was working at a COE, but because he immediately impressed me with the depth and breadth of his knowledge and experience. Each subsequent encounter with him reinforced my initial impression.

The plan changed as time went on. Eventually he re-evaluated my case and the plan became one, possibly two years of ADT started right away, followed by HDR brachytherapy after my prostate shrank somewhat due to the ADT, followed by 20 sessions of external beam. I'm 2/3 the way through the external beam treatment as of today.

Wow. It really highlights that this is a marathon rather than a sprint. I'm impressed with the amount of effort you put into the process given that most seem to just trust in whoever they start the process with. It also highlights that just because someone is affiliated with a COE that doesn't necessarily translate into the best approach for every individual.

Thanks, for the feedback.

Hi,
Unfortunately you are at the mercy of your particular hospital network. But if I was in your shoes I would start looking ahead by starting Kegal exercises plus pelvic floor. Keep physically fit, I know my surgeon said since I was slimmer my surgery would be easier on me and the surgical team. Do your research on types of remedies for high pi-rad type cancers, knowledge is key. And also try and take a couple of vacations between now and your next biopsy to get your mind off things. I know it’s stressful, we have all been there. Good luck….

good advice! Already done tons of research. Would love to take a nice vacation but between other unrelated doctor appointments (including a possible skin cancer that was biopsied last week which would be my third skin cancer surgery in three years) and trying to get my house/property ready for market just don't have the time. It is overwhelming. Maybe I can fit something in between the biopsy and when my treatment starts (whatever that may be, expecting some combination). I know once the marathon begins my travel options are likely to be a problem.