Gleason 8 PSA 5

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terriandralph
terriandralph Member Posts: 38 Member
edited January 2 in Prostate Cancer #1

I was just diagnosed with prostate cancer. My urologist said 2 of the 10 samples tested positive for cancer, and he is going to schedule an MRI and Bone Scan to see how to proceed. He seems to be leaning towards a prostatectomy.

Also, at this point I'm wondering with the PSA being 5, how likely it has spread outside my prostate? I realize that is why my urologist is going to schedule an MRI and Bone Scan, but when I mentioned that I wish I had caught it sooner, he seemed to indicate that the PSA being 5, I probably did catch it early. Not sure if he's just being positive or shooting straight from the hip - just wanted to know if anyone had a similar situation?

Hoping to receive some feedback that will allow me to make informed decisions going forward. Thanks!

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  • centralPA
    centralPA Member Posts: 243 Member
    edited November 2023 #2
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    The fact that he had you do a biopsy first, and is now scheduling an MRI…I would find a new urologist.

    Best practice is MRI first, identify regions of interest, then sample the prostate on a grid but also target the regions of interest during the biopsy. It will also tell you the prostate volume so you can calculate psa density.

    The biopsy damages the prostate, leaving artifacts that complicate reading it. Now you have to wait for a period of time for it to heal so you can get a good image that will differentiate cancer from the biopsy damage. If you don’t, the MRI can make you think you have much more going on in there.

    https://pubmed.ncbi.nlm.nih.gov/29337128/#:~:text=A%20minimum%20delay%20of%204,reading%20without%20strong%20scientific%20evidence.

    I had a PSA of 5.7. The biopsy showed G6, contained, so low risk. Your timing is good.

    Sorry you’ve joined the club. Your mission now is to become as educated as you can on your condition. You’re asking the right questions, keep digging!

  • terriandralph
    terriandralph Member Posts: 38 Member
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    I can't help but feel I'm late - I should have been doing my research before I got the biopsy done.

  • terriandralph
    terriandralph Member Posts: 38 Member
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    Now I've got to wait 4-6 weeks with Gleason 8? It's my own fault for not doing my due diligence.

  • centralPA
    centralPA Member Posts: 243 Member
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    Even with what you have, you have of plenty of time and no rush at all. Way more important to build up your knowledge than it is to rush to treatment. Use the time to develop your knowledge, and maybe move your care to a top institution.

    The NCCN guidelines are a must read. https://www.nccn.org/guidelines/category_1

    Dr. Mark Scholz has an excellent book on prostate cancer. Recommend download the ebook and start reading.

    This site… https://www.pcf.org/

  • terriandralph
    terriandralph Member Posts: 38 Member
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    Many thanks for your comments centralPA. Much appreciated!

  • Rob.Ski
    Rob.Ski Member Posts: 145 Member
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    What is rest of your PSA history and age? Gleason 8 puts you in the treatment category vs. AS. The information you currently have posted isn't an indication either way of being contained or not. In the mean time you can educate yourself on the options and get second opinion on biopsy. Get them to send it to a place like Hopkins if you didn't have it done there.

    Agree with Central PA on MRI first but, some insurance companies don't want to pay for MRI first. Mine did pay to do it first but, MRI showed nothing while PSA was rising and later biopsy found PCa.

  • terriandralph
    terriandralph Member Posts: 38 Member
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    Thanks for your comments Rob.Ski.

    I am 61 years old.

    Unfortunately I do not have a lot of PSA history. About 3 months ago I had blood work done, and when they told me my PSA was high, I admit I didn't even know what that meant. My wife had been telling me to get my bloodwork done, but I stupidly did not listen to her.

  • terriandralph
    terriandralph Member Posts: 38 Member
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    centralPa,

    Your comment about top institutions got me thinking. I live in Texas and live about 2-3 hours away from MD Anderson in Houston. That would probably be a good start.

  • terriandralph
    terriandralph Member Posts: 38 Member
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    centralPA,

    Just want to make sure - the book is "The Key to Prostate Cancer", yes?

  • centralPA
    centralPA Member Posts: 243 Member
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    That’s the one. Very informative!

  • Old Salt
    Old Salt Member Posts: 1,327 Member
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    I may have to eat my words, but I also feel that you are NOT too late. Your PSA is not particularly high and your cancer MAY well be contained within the prostate. No promises from me though!

    Carry on with the MRI and bone scan. Both are commonly done after a prostate cancer diagnosis. You could ask to also have a PMSA scan done. It's quite sensitive for detecting metastases.

    As others have written, now is the time to become more knowledgeable.

  • terriandralph
    terriandralph Member Posts: 38 Member
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    Many thanks Old Salt!

  • DaveTX
    DaveTX Member Posts: 19 Member
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    I switched from my urologist to MD Anderson and so far I’m glad I did. I’d recommend at least getting a second opinion from MD Anderson. Like someone posted a while back on this site; it was something like “better doctor + better facility = better result”. I feel more comfortable now that I switched. MD Anderson requested the slides from my biopsy and rescored them. Even though I had both a MRI and bone scan and gave them the results, they did have me do a PET scan. My urologist was only going based on the MRI and biopsy. It was a second option from a radiological oncologist that ordered the bone scan. MD Anderson feels more “complete” with their care team approach.

  • eonore
    eonore Member Posts: 178 Member
    edited November 2023 #15
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    I second DaveTX’s recommendation of MD Anderson. I switched my treatment from my local hospital to Dana Farber and it was like night and day. MD Anderson is world class, and if available to you, why not.

    Eric

  • terriandralph
    terriandralph Member Posts: 38 Member
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    Bone scan and MRI are scheduled for next week. A week later my urologist had me schedule an appointment to discuss the results.

    I have talked a person at MD Anderson and started a file. I gave MD Anderson permission to get the information (biopsy and pathology) from the urologist group my urologist is a member of and told them about my bone scan and MRI being scheduled for next week. They want me to have those results faxed right away.

    I'm a little concerned the person at MD Anderson that I talked to said something about not being able to see me until January. I'm hoping they can start looking at a second opinion right away and tell me what they think so I don't have to wait until they have an opening.

  • hunter49
    hunter49 Member Posts: 244 Member
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    almost zero with PSA so low. SOP for bone scan he should do a PMSA if they really want a good idea if escaped. YOU should probably do salvage radiation and hormone deprivation for 6 months after surgery if it did not escape. You know core involvement and if had perineural or vascular invasion?

  • terriandralph
    terriandralph Member Posts: 38 Member
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    Sorry hunter49,

    I have no idea about "core involvement" and "perineural or vascular invasion" - these were not mentioned by my urologist. Would he know this information already after biopsy and pathology or do I need to wait until we get the results from the MRI and bone scan?

  • terriandralph
    terriandralph Member Posts: 38 Member
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    Thanks for your comments DaveTX and eonore!

  • terriandralph
    terriandralph Member Posts: 38 Member
    edited December 2023 #20
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    I had the bone scan and MRI done last week and received the results from the urologist today. The bone scan was negative; however, he says the MRI seems to show that a lymph node close to the prostate may be cancerous. He is going to have me undergo a PMSA PET scan to determine exactly what is going on with that lymph node, and if there are any other suspicious areas in my body that might show any cancer.

    He also told me that it could be up to six weeks until I undergo the PMSA PET scan - waiting for that amount of time really concerns me.

  • hunter49
    hunter49 Member Posts: 244 Member
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    The PSMA is very good and accurate. I had it after my PSA rose 11 years post RP. Showed a hot spot in the left side of the prostate bed only nothing in nodes. I am finishing radiation tomorrow they hit the nodes now as standard procedure. Don't worry about the time 6 weeks is not long. I would recommend you discuss hormone therapy as soon as it is done as you will need it anyway. I am on Orgovyx a pill daily. Very few side effects, drink fennel tea daily which mimics estrogen and minimizes hot flashes. I get 3 or 4 minor ones always at about 4 to 6 am last about a minute. Good luck.