Looking for some guidance

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crw41atacc
crw41atacc Member Posts: 4 *
edited July 10 in Prostate Cancer #1

Here is my situation: PSA 24.5, up from 15 1 month ago (but a different lab), 2 lesions on MRI (1.9 cm PRAD 4 at right periphery and (0.7) PRAD 5 near left transitional zone. I am due to get a biopsy next week and PSMA scan sometime after that. The MRI showed no extension beyond the prostate, but given the PSA level and some unusual symptoms for me (back pain and bone pain) I am pretty sure I have mets.

I survived testicular cancer at 20, I am now 63. Given that I had radiation at any early age, many studies show a large incidence of 2nd cancers decades later. MY chance after 43 years was 70% so I am not shocked.

A few questions:

My treatment option will likely be triple therapy - Taxotere, ADT, and an adrenal blocker - correct?

With confirmed stage 4, they will likely leave the gland alone? TURP down the road if obstructed.

Rise in PSA - rapid doubling time vs. different labs - Quest and Abbot shouldn't be that different

If I am Stage 3C only - typical treatments is as above + surgery, XRT, or both

How long after a biopsy can one start medical and/or surgical TX

I have been hearing footsteps for 40+ years and there here now.

Believe it or it or not, I was at a regional cancer center 6 years ago for pain in my remaining testicle and a fibroused testicular implant. I had an US on the remaining testicle, 2 follow up visits, and surgery to remove the implant. I saw 3 different urologists and not one ever advised me to have a PSA or even mention it. Years later my family physcian did. TC survivor risk of prostate cancer in 6x that of the general population. I didn't know that.

I am not blaming anyone, other than myself. My experience as a TC patient was very traumatic from the treatment to the side effects. Over the years I had many false positive test results including tumor markers, imaging tests, and incorrect diagnosis. I became test adverse after a while. In addition 1 year after my DX, my sister got breast cancer at age 22 which devastated my family.

I was ignorant about the PSA test - I knew it was controversial and thought it only real value was following those with a confirmed DX. I know better now. By the way, I am embarrassed to admit I am a retired physcian - PSA was never on my radar (it wasn't even remotely related to my specialty so I never read about it or really learned about it). Survivors of cancer early in life live day to day. I never thought I would live this long and got to achieve my goals in life and have had many wonderful experiences. I am not bitter - just looking for a little more time.

I had my head in the sand a long time and it cost me. All I can do know is be my own advocate. My goal is quality of life. Any insight to be offered would be much appreciated.

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,090 Member
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    Hi,

    In my humble non medical opinion you need to know what the PET scan and biopsy show to start formulating any kind of treatment plan. The biopsy will grade your cancer for aggressiveness. I have also heard too much radiation can cause additional cancer risks later on but I don’t know if thats related to never before radiated areas or double dosing one area. Seems like a second opinion from another doctor team might not be bad idea before you take action. Once you get more info I am sure other survivors will chime in.

    Dave 3+4

  • crw41atacc
    crw41atacc Member Posts: 4 *
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    Yes, agree.

    There's not a lot of information out there regarding TC survivors with prostate CA - one study out of MD looked at about 300 patients - typical gleason score is high.

    I should know the grade and PET result within 2-3 weeks.

    Does anyone know how long after a biopsy, once can have the PSMA done?

  • Wheel
    Wheel Member Posts: 20 Member
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    my biopsy was done on 2-7-24, reviewed results with Urologist, 2-16-24 and PSMA-Pet scheduled 3-1-24. I don’t know if their is any time constraint due to swollen prostate for the scan or a swollen prostate affects the uptake of the tracer, but they are looking at tracer uptake also in other parts of your body for metastasizing. However for instance my nodes show nothing but with my surgery coming up the surgeon is still taking nodes for dissection as he says microscopic infiltration of the nodes won’t necessarily light up on the scan and with a higher grade cancer they want to know for decision making of possible adjuvant Radiation and ADT hormone treatment after surgery recovery to be sure its all killed off. The unfortunate part their is you are getting treated twice then with Surgery and Radiation for double the fun and side effects. Not particularly happy thinking about that as picked Surgery over Radiation.

  • Clevelandguy
    Clevelandguy Member Posts: 1,090 Member
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    Your Urologist should be able to advise you on the timeframe for your PET scan.

    Dave 3+4

  • VascodaGama
    VascodaGama Member Posts: 3,692 Member
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    Hi,

    I don't think that your treatment for testicular cancer of 40 years ago would interfere in any choice of a treatment for prostate cancer at this time.

    After the biopsy and the scans you will receive a clinical stage from the urologist and his suggested opinion.

    You should then look for a second opinion from other specialists and choose what gives you the most confidence.

    Typically, radical therapies are for localized cases (contained, with or without extraprostatic extensions). Advanced cases with far metastasis are aligned for hormonal therapy or chemo.

    In cases with fewer number of Mets, spot radiation is recommended.

    The 68Ga-PSMA PET will add information on far metastasis (bone, lymph nodes, etc). This PET is not practical to identify extraprostatic extensions close to the shell. The MRI is more concise. In such aspect, there is no time limits to submit to a PSMA PET. This works at celular level so the prostate will shine like a Christmas bulb even if cancerous prostatic cells doesn't exist in the gland.

    Though you are/have been at high risk for prostate cancer due to past testicular cancer and your sister's breast cancer (same genes), so far, you haven't been diagnosed with pca. Let's wait for the biopsy results.

    Best wishes and luck in your journey.

    VGama

  • VascodaGama
    VascodaGama Member Posts: 3,692 Member
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    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1472940/#:~:text=Prostate-specific%20membrane%20antigen%20%28PSMA%29%20is%20a%20type%20II,is%20not%20commonly%20deleted%20in%20prostate%20cancer.%209

  • crw41atacc
    crw41atacc Member Posts: 4 *
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    Thanks for the input and support - much appreciated.

    My TC treatment was about 42 years ago - high dose XRT to the para aortic nodes and inguinal nodes. Latency for 2nd malignancies is after 30 years. The curve starts get exponential after about 35 years. After 2000, XRT dosing was halved.These days they treat localized TC with surgery and surveillance. My health was good for 42 years so I can't complain. Back then, in my 20s I lived day to day, month to month -which I am doing now. My biggest fear back then was not being able to pursue life goals - I didn't want to regret not doing so, so I bit the bullet, put aside the what ifs, got 2 doctorates, and moved forward and never looked back. Dealing with life and death every day in my career taught me a lot of valuable lessons. PSA wasn't on my radar and I hadn't seen a physician in close to 30 years - not real smart on my part (could have caught this earlier). Treatment and follow up was a nightmare when I was young (side effects and many false positive tests suggesting recurrence) - a lot of fear and PTSD. At an early age my urological oncologist gave me the advice to not come back and move forward (I did when I was 6 years out).

    Now, at 63 I am retired and although this is frightening, life experiences, maturity, and support make it a easier to face ca this time around.

  • VascodaGama
    VascodaGama Member Posts: 3,692 Member
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    Hi again,

    My PSA at the time of PCa diagnosis was 22.4. It was by chance that I had the psa tested in 2000 at my annual health check up.

    We can't blame doctors for the nativityveness in using the PSA before the year 2000 as this marker started to be recognized as a viable indicator for PCa only by the end of the 1990th. At the initial years of the 2000th still many doctors didn't trust it in their judgments, giving preferences to PAP, an older marker, that was only reliable (positive numbers) when the cancer was already very advanced.

    Radiation treatments also become friendlier at the end of the 1990th. The newer "machines" started to replace the old cobalt at about 1997 and the modalities have ever-since improved. Now one can choose for high intensity or low intensity, accommodating what is best to their cases and comfort.

    The risks and side effects continue but one can choose and give preferences to those we would be more malleable.

    Can you provide details from the MRI report. Survivors here can provide more lay opinions on the diagnosis that may be of your interest.

    Best wishes

    VG

  • crw41atacc
    crw41atacc Member Posts: 4 *
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    Here is my situation: PSA 24.5, up from 15 1 month ago (but a different lab - Quest vs. Abott - raises concern for short doubling time (I don't think different labs will vary by that much?). ,

    2 lesions on MRI (1.9 cm PRAD 4 at right periphery without capsular deformation and (0.7) PRAD 5 near left transitional zone. I am

    The MRI showed no extension beyond the prostate