Can someone help me with this Brain Biopsy, told have PCa primary and mets to brain???

Can someone help me with this Brain Biopsy, told have PCa primary and mets to brain???

I had a tumor on my right tempral region and the biopsy suggested PCa as primary, but I wonder why it was negative for PSA if it was from the prostate? I wonder just what kind of cancer I have.....been being treated for PCa, guess treatment will be the same regardless, but just wondering based on these biopsy results. Thanks for any input.

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  • One might independently refer to sources like the Pathology Outline's - Stains and Molecular Markers reference page:

    pathologyoutlines.com/stain...

    The positive for PSAP is a likely driver for an association with a primary of prostate origin.

    The negative for PSA, itself, may be ambiguous. Its status is sometimes used to help differentiate between advanced colorectal carcinoma and prostate carcinoma primaries.

    The important thing to discuss with your doctor is whether or not you may have the small cell neuroendocrine type of prostate cancer, and any implications of that for future treatments and for interpreting test results, such as PSA tests. You may also want to send the pathology sample to a highly qualified lab that has lots of experience in prostate cancer for a second opinion. Perhaps ask about doing genetic testing on the sample. Maybe do some independent learning about neuroendocrine prostate cancer, yourself, if so inclined. No need to get the cart before the horse, but this recent presentation provides a good overview on the topic:

    am.asco.org/daily-news/trea...

    I am not a doctor, but just some initial thoughts.

    Meanwhile, here's to living well, savoring each precious day, and, hopefully, experiencing more gratitude, compassion, acceptance, and meaningful times ahead on our mysterious journeys.

    We may not always be Cured, but we can often be Healed in many other ways.

    Charles

  • Thanks Charles, I'll do some homework on this. It's just all a little confusing since I have low PSA PCa and not sure what to watch closer, my PSA level or my testosteron level (I've had orchidectomy).

  • If it is Prostate Cancer---it is probably refractive stem cells that do not give off PSA, while Hormonal Cancer sensitive ones do. These cells divide into daughter cells and travel along an enzyme called Hyaluronase to far parts of the body.

    I pray that this is not the case, and that whatever is discovered, can be controlled, and put into remission. This is not an area of expertise for me, I kind of know how some processes work.

    Best In God,

    Nalakrats

  • Thanks Nalakrats. It won't surprise me that I have this as it is very wide spread. So far only in my spine, hips and skull, no soft tissue. But man, the pain I'm experiencing keeps me awake at night. Like a pencil jabbing into specific areas all over my body. Supposed to start the Xtandi tomorrow. Will keep everyone updated. God Bless!

  • I am surprised they are not using chemo with Xtandi. Sometimes in new studies they try Zytiga or Xtandi first to try to sensitize and then use Chemo to be more effective, in cases like yours. If they suggest Chemo, my friend, you might have to agree. God Bless!!!!!!!!!!!!!!!!

    Nalakrats

  • Truth is, this brain biopsy is from 2015 when I was diagnosed. I started with 25 sessions of rads to the brain and followed with 6 sessions of chemo. Nothing for a year and now it's spreading again so back to rads on my spine and hips, just finished with that now to start Xtandi, after I made sure that I was AR-V7 was negative for mutation.

  • Good for you---that your AR-V7 is negative---that gives a very positive probability of having good results from Xtandi. Some of us use it without knowing the above Gene splice, and after failure in a couple of months then know the Gene was turned on positive. My Geneticist, says there are ways to turn the AR-V7 off.

    She recommended to me not to spend the 1,000 dollars at John Hopkins. Chemo, High T therapy and the use of DIM can turn the Ar-V7 off. Just some side info. I am on DIM now.

    Nalakrats

  • DIM??

  • Di-indole methane---used to not let estrogen by produces of the breakdown of DHT from producing estradiol, but safe---2 Hydroxy Estrogen. Pca cells love estradiol!

  • Jashelby...God this is Hell. How about Xofigo? It is successful at regressing bone mets. And the pain? Oxycodone or dilaudid? Marijuana tintures made from strains high in CBD and low in THC help also. Keep fighting!

  • You might also ask about the pros and cons of possibly going onto a Carboplatin Etoposide option, if that is deemed appropriate for your evolving tumor/met(s) type.

    On another line of thought, have you ever read the book:

    Being Mortal -

    Medicine and What Matters in the End , by Atul Gawande?

    Highly recommended.

    They also made a PBS Frontline documentary, based on ideas in the book.

    pbs.org/wgbh/frontline/film...

    Charles

  • Wishing you well. There are some types of prostate cancer that can not always be followed by PSA nor have biopsy/pathology samples stain positive for PSA. Two examples are Small Cell and Ductal (what I have). You can even have mixtures where some percentage of the cancer will show up on PSA tests while the rest does not. (In my case it is about a 70:30 ratio). In these cases it is critical that you follow it with scans in addition to PSA testing.

    Note, from what I have read, "normal" prostate cancer does not usually migrate to the brain, but Ductal often does. You may want to ask you doctors about these rare forms.

    Dr. WHO ( not a medical doctor)

  • Saw my Onco today and he confirms that I have a "similar" small cell rare cancer and that my PSA level at 5 is like 500 for "regular" men.....so why does everyone want to put me in the "normal" category??? When my PSA was climbing I was the only one concerned about it....they didn't get concerned until it was over the "normal" of 4......ughhh! You gotta be your own advocate in this venture.....Thanks for your reply and best of luck to you as well!

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