MRI fusion Prostate Biopsy next Monday. I am doing a lot of research, and have many questions

frank1956
frank1956 Member Posts: 14 Member
edited February 15 in Prostate Cancer #1

This is a great forum. I just scratched the surface and I have so much more to research on this. For now, this is what I have.

I am 68. I live in Southern California. I have Medicare and medigap insurance. In early 2022, my PSA was 3.9. By November 2023 it went up to 5.3. My PCP gave me referral for a urologist who asked me to do a 3 Tesla MRI, and a urine test.

My MRI shows my prostate size: 47cc PSA density: 0.12.

In peripheral zone, I have 2 lesions: one with 6X9mm PI-Rads 4; another with 5X3mm PI-Rads4.

Urine test shows ExoDx Prostate Test score: 18.77

Next Monday (2/12/24), I am scheduled for MRI Fusion Transperineal Prostate Biopsy. My appointment to review with my Urologist is 3 weeks after that (2/29/24).

For now, I have gone on internet and read/watch youtube none stop since I got the MRI result. I am preparing myself for the possibility of Gleason 6, 7, 8, and 9 scenarios, and try to understand how each treatment would be for each grade. I know that the session with my Urologist will be short and succinct. I need to prepare a list of questions to ask as soon as he tells me what my Gleason number is. He is a robotic surgeon, so I can almost expect that his recommendation would be a surgery. What would you suggest and what type of questions to ask my Urologist when reviewing pathology result? I heard that you can send John Hopskins the biopsy result, and request them to do a second opinion review. Is this as easy as you just pick up a phone and call them? When should I ask Urologist's office to send that? Since I am also close to UCLA facilities, should I request UCLA urology department for such second opinion?

Thank you

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,007 Member
    edited February 7 #2

    Hi,

    Sounds like you are starting to go through the process and gaining information. A second opinion is not a bad thing since you are close to the UCLA facility. If you have an Internist or other doctor they might be able to suggest a good doctor at UCLA. Depending on your Gleason score you might want to add a PSMA PET scan if the score is a 3+4 or 4+3 or above. The PET scan is good at finding spread outside of the Prostate. The biopsy will give you info on your Gleason score plus the amount of cancer in each sample. If it was me I would also find a good Oncologist to consult with to help you determine whether you should do radiation treatments or surgery. If you have a 3+3 with low volume you could just wait and monitor(AS) active surveillance for the future. Your Urologist should tell you if they find anything that is out of the norm for a routine biopsy. I have included a link to get you basic info on treatment types.

    Dave 3+4

  • swl1956
    swl1956 Member Posts: 80 Member

    Hi Frank,

    Sorry you're here, but you are in good company. Lots of info, compassion, and opinions. I started my "journey" last October and still haven't decided a course of action. The amount of information to consider can be overwhelming. The most helpful thing for me was finally believing in what all of the doctors I've seen are telling me and what I have read; You very likely have plenty of time to figure out what's the best route for you. MRI Fusion Transperineal Prostate Biopsy is the best. Your biopsy report will start your journey and in some ways dictate your options. I have a intermediate unfavorable rating which requires treatment, but I am exploring a new focal therapy which likely MAY let me avoid the side effects associated with RP or RT. There are tradeoffs on all options and it hasn't been easy for me to decide. I believe second opinions are a must. When I made appointment for a second opinion at Fox Chase Cancer Center, they were able to electronically get all my records from my local urologist. I did take with me a CD copy of my MRI. You might want to get a copy of that if you don't already have it?

    Hang in there!

    https://www.youtube.com/watch?v=aotF2SPzCmU

  • centralPA
    centralPA Member Posts: 242 Member

    For the second opinion from Hopkins, this site has the info.

    You can probably ask your Uro now to send the slides off once the initial pathology review is done. Easy day.

    There are places to get the pathology 2nd opinion on the Left Coast, I am sure.

  • frank1956
    frank1956 Member Posts: 14 Member

    Thank you, guys for your responses. This waiting game is so unberable. I called my surgical coordinator 3 times for the last few days for many questions: so my urologist will be doing the biopsy. The coordinator does not know how many cores of samples will be collected. I will take the Enema the night before, and no antibiotics needed before the biopsy.

    As per suggested, I have requested the imaging center to mail a copyd of MRI CD to me.

    There will be total 2 pathology reports from two labs. They will be ready in 2-3 weeks in time for my appointment with my urologist. I will likely request PSMA PET scan depending on the results. I will also ask for a Decipher genomic test to check how aggressive the cells are.

    Maybe after that, I will call UCLA Urology department appointment line, and schedule an appointment with a Urologist for a second opinion.

    Let me know if you think of anything that I need to do.

  • Clevelandguy
    Clevelandguy Member Posts: 1,007 Member

    Hi,

    Sounds like a very good plan to me, let us know what the results were.👍

    Dave 3+4

  • frank1956
    frank1956 Member Posts: 14 Member

    Steve's story makes my wonder how often is cribriform in prostate cancer? It seems to be radiation resistent. Will my upcoming biopsy show?

  • Old Salt
    Old Salt Member Posts: 1,318 Member

    Yes, most pathologists should recognize cribriform pattern although not all of them will report this. Because recognition of this pattern is somewhat subjective, it wouldn't hurt to get this confirmed, if it happens.

    I am not sure at all that cribriform cells are radiation resistant, but they are associated with worse outcomes among Gleason 4 cases (see the link below).

    More in general, I wouldn't worry about issues that haven't been demonstrated.

    Here is a link to a fairly recent paper:

    Cribriform Prostate Cancer: Clinical Pathologic and Molecular Considerations - PMC (nih.gov)

  • frank1956
    frank1956 Member Posts: 14 Member

    I had my biopsy done yesterday on 2/12/24. The young nurse tried to find my vein for IV but failed. She had to call in another more experienced nurse to do it on my other hand, so I got poked twice. Another nurse came in and put antibiotics in. Then anesthesiologist came in. I said "just put me under, I don't want to see it".

    When I woke up 30 minutes later, it was done.

    When I got home, tt was a little painful, so I took 2 tylenol, and asked wife for a pad. There is a little blood from where the needles went in under me.

    She called the doctor's office per Dr.'s instruction, and got an appointment with him on 2/22 (10 days out). He said he won't call me. He will discuss the results with us face to face. The waiting game begins.

    My question: I wanted to get second opinion pathology from John Hopkins. When can I request that? Shall I wait until 2/22/24 appointment to see the results then ask Urologist do send to John Hopkins in that meeting?

  • centralPA
    centralPA Member Posts: 242 Member

    My question: I wanted to get second opinion pathology from John Hopkins. When can I request that? Shall I wait until 2/22/24 appointment to see the results then ask Urologist do send to John Hopkins in that meeting?

    It can't hurt to tell them now right now that you want that second opinion. You could delay your visit with the doctor until it comes back, or at least get it launched before your visit. But it took my 2nd opinion about a week or so to get be handled.

  • Old Salt
    Old Salt Member Posts: 1,318 Member

    Good advice from centralPA.

  • frank1956
    frank1956 Member Posts: 14 Member

    I called my Urologist's office and asked about second opinion pathology. They said to discuss with doctor on 2/22/24 when he reveals my results. I also called John Hopkins second opinion pathology department. They also said to wait for the first opinion is out. So, I guess I will have to wait.

    I have a list of questions ready to ask my Urologist.

    1. How many cores of samples taken? How many specifically targeted the 2 lesions? (He vaguely mentioned while I was in holding room. There might be total 14, and each lesion is targeted with 4. But, I want to ask again to be sure.)
    2. How many show Gleason scores? What are the scores?
    3. Polaris test was done at the same time. What does Polaris result show? Is it comparable to Decipher test?
    4. Can I request a second opinion pathology from John Hopkins? (I will have their form, and contact info ready for the doctor)
    5. Can I do a PSMA PET Scan to see if any spread?
    6. Can I do a bone scan?
    7. Can you refer me to a UCLA Radiation Oncologist? (If not, I will just have to call UCLA Prostate Cancer center appointment line, and they might just assign one for me.)
    8. Can you recommend a treatment for me? (My urologist is a robotic surgeon. So, I am almost sure he will suggest surgery, but I guess I will have to ask.)

    Are there any other questions I need to prepare for the 2/22/24 appointment with Urologist?

  • frank1956
    frank1956 Member Posts: 14 Member

    I received an email notification that my Urologist member portal has new updates. I logged in to see what it is. My heart stopped when I saw Path Report shows up. I had to call me wife to open it for me.

    All 13 samples are benign!!

    Urologist office called me to move up my appointment to 2/20/24. I guess I will have to ask what are the chances that biopsy may have missed the cancer. Is it still a good idea to get a second opinion from John Hopkins?

  • swl1956
    swl1956 Member Posts: 80 Member

    Congrats! You lucky dog!

  • centralPA
    centralPA Member Posts: 242 Member

    Woot!

    Was your biopsy a steered biopsy based on the MRI? How many of the samples were targeted, versus the rest on a grid?

    Had a negative result from my pathology following a HoLEP procedure on my prostate. I had Hopkins review, they agreed. It gave me an even greater warm and fuzzy. So yeah, send it off.

  • Old Salt
    Old Salt Member Posts: 1,318 Member

    That's a great outcome. Fantastic!

    Please do continue with regular PSA tests. You and your doc should set the frequency.

    I agree with sending the slides to another pathology unit for verification.

  • frank1956
    frank1956 Member Posts: 14 Member

    Thank you all. But this still makes me worried. This only explains that the Urologist did not find cancer, but it still does not mean there is no cancer. He told me that he will target both lesions with 4 cores, but I am not sure he actually did that.

    My numbers are hard to explain:

    1. PSA 5.3
    2. MRI found 2 lesions (6 x 9 mm, and 5 x 3 mm). Buth PI-RADS 4.
    3. Urine test shows ExodX: 18.77 (normal is 0 - 15.6).

    Something is going on with my prostate. Maybe I should request in our 2/20/24 meeting, a PSMA PET Scan to see it can find anything?

  • Old Salt
    Old Salt Member Posts: 1,318 Member

    You should request a complete copy of your biopsy. It should show exactly the spots that were 'poked'.

    A PSMA PET scan might not be approved by your insurance company for a case like yours. But you can certainly ask.

  • Clevelandguy
    Clevelandguy Member Posts: 1,007 Member
    edited February 16 #19

    Hi,

    If he did use the MRI results to target the biopsy there is a chance he did miss the cancer. But think about the logic behind that, he used the MRI to target, took the samples and found nothing. Sounds like he took around 3 samples from each quadrant of your Prostate. If you have cancer hopefully it’s in such small quantity waiting another 6mo-yr for another biopsy is not the worst thing. Got to find it to treat it in my opinion. Interesting to see what the doctor says about the biopsy.

    Dave 3+4

  • Pocon
    Pocon Member Posts: 2 Member

    Sounds like great news. I see a few mentions of PSMA pet scan. It's an amazing scan that finds cancer anywhere in your body. It would give you peace of mind. Definitely request it and see if insurance covers it. In my case it showed that my cancer was confined to the prostate. I certainly wasn't happy to have cancer but was relieved it hadn't spread