Joining the Club with high initial PSA

amdenver
amdenver Member Posts: 18

Hello All:

Best Wishes to Everyone for a better 2021 !!

My own new year is beginning with the life changing news that we all have had. All indications at this point are that 2021 will be more challenging for me. Perhaps much more!

All was going well until the first week of December, when I began having mild symptoms of, I thought, UTI, which I've had before. Mild discomfort after passing urine and feeling of fever but temp not elevated. For several days upped the intake of water and cranberry juice, etc. then decided to see the first available doctor. Urine results came back negative for UTI so the DO advised for appt with a Urologist, prescribed Tomsulosin for the interim, had a redo of the Urine analysis and added a blood culture test. UTI was still negative but the latter came back with a PSA of 25.

Had little idea of PSA test and the significance of numbers so began reading. The peaceful and worry-free part of life is now over !

Just turned 68 two months ago. Prior to that the only test I can remember was a finger test by my Primary sometime after I turned 60 and he had decided that all was fine. Subsequent annuals were a ritual of a bunch of questions, including any issues with peeing, etc.? There weren't any, so testing for PSA never occurred. About five years ago A1c had come out high but under the threshold so focus stayed on cholesterol and sugar and I began taking Atorvastatin. Even at the most recent annual, that was in September, -an audio only visit-the substitute physician did the routine, mentioned testing for PSA but then decided to skip on it. Just did a blood sample for A1c.

Had an appt for Colonoscopy in April-20 that was canceled coz of Covid. Appts reopened in July but decided to hold off until after a vaccine. In November had an onset of what appeared to be mild upset stomach which lingered, so changed my mind about Colonoscopy. Next available appt was Feb 12, 21.

This is the history and background. Reassuring my wife and two children but inwards, starting with such a high PSA, I'm fearing the worst.

Trying not to let anxiety ruin my days but is difficult. Tomsulosin seems to have helped with the Urine passing symptoms. Now only have an occasional tingle afterwards but have to go quick when the need. Other lingering symptoms are a low-grade discomfort at the lower left of the abdomen, more noticeable when I lie down. And warmth in hands and feet at night. Appointment with the Urologist is for Jan 12th.

Any thoughts from the wonderful folks who share their expertise/experience and knowledge here would help.

Thanks & Best Regards

 

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Comments

  • Clevelandguy
    Clevelandguy Member Posts: 750 Member
    edited January 2021 #2
    Need more tests

    Hi,

    First of all you will need futher testing to determine if you have Prostate cancer.  A biopsy will determine if you have cancer and also how aggressive it is.  You will get two numbers x+y where x is the majority of the cells from each sample and y is the lesser amount.  So for me I had 3+4 the largest amount of cancer cells were graded a 3 on a scale of 3-5, the other type of cancer was a 4 which is more agressive than a 3.  I had a MRI first to give my Urologist a location where to take samples from.  Another test is a PET scan which can tell you if the cancer is still within the Prostate.  BPH can also cause elevated PSA reading and if you had sex right before your PSA test that can elevate the reading.  With all this being said your biopsy will tell you if you have cancer so more testing is needed.  If you do have cancer and it's low grade 3+3 many men here have not done anything but more future biopsies to monitor.  For more agressive grades 3+ surgery or radiation are options.  The American Cancer Society has a lot of very good info on Prostate cancer and it's treatments.  Also be aware that surgery and radiation have side effects, you will need to be aware of them so it's a good time to do your homework.  Let us know when you get more info so we can share our experiences.

    Dave 3+4

  • Old Salt
    Old Salt Member Posts: 899 Member
    Yes

    You do need a biopsy ASAP. I am sure your urologist will propose one during your Jan 12 appointment.

    If cancer is found, there are multiple options for treatment. Clevelandguy already summarized (most of) them. 

    Please do tell us more after your visit with the urololgist.

  • lighterwood67
    lighterwood67 Member Posts: 320 Member
    Definitive

    At this time, the definitive test for prostate cancer is a biopsy.  In most cases, this will drive yours, your urologist and/or radiation onocologist approach to treatment.  In the mean time, become as knowledgeable as you can on the subject.  Good luck on your journey.

  • amdenver
    amdenver Member Posts: 18
    edited January 2021 #5
    Update

    Friends:

    Had the biopsy yesterday and just got the call from my Urologist. Results:

    FINAL DIAGNOSIS: 1. Prostate, right, needle biopsies: -- Adenocarcinoma of prostate, Gleason grade 3+4=7 (Grade Group 2), 30% Gleason pattern 4, involving five of six needle core biopsies and approximately 80% of the material submitted; perineural invasion identified. 2. Prostate, left, needle biopsies: -- Adenocarcinoma of prostate, Gleason grade 3+3=6 (Grade Group 1), involving one of six needle core biopsies and approximately 1% of the material submitted.

    With last PSA at 22 Dr wants me to schedule a CAT scan and bone scan rightway to assess the spread.

    Meet with him on 1/19 when he said will give me the full scoop and options.

    Thoughts on what we know so far, and what to ask him?

    Thanks

  • Clevelandguy
    Clevelandguy Member Posts: 750 Member
    edited January 2021 #6
    Going down the right path

    Hi,

    Sounds like your doctor is doing the proper homework, but if it was me I would want to get a PET Scan.  From what I know PET scans can show more detail of possible spread of the cancer.  The next step depending on your scan results would be to determine surgery or radiation.  I had robotic surgery back in 2014 abd don't regret it.  Cyberknife or Proton radiation are two good choices in my humble opinion if you want to go that route.  Be sure and study the two major treatment modes and their side effects because they will affect you after treatment.

    Dave 3+4

  • Old Salt
    Old Salt Member Posts: 899 Member
    edited January 2021 #7
    Biopsy results

    I am sorry about the outcome of the biopsy, but it was not unexpected considering the high PSA (25). On the positive side though, with such a high PSA, the biopsy could have revealed sites with significantly higher Gleason scores. 

    As Clevelandguy already pointed out, the follow-up tests are standard. Hopefully, they will show no spread to the bones. Once you have that info, you will have some time to decide on the path to follow. Typically, forum members do not agree on the best approach; you will have to do your own homework before making a decision.

     

  • Georges Calvez
    Georges Calvez Member Posts: 545 Member
    edited January 2021 #8
    Bad news and good news

    Hi there,

    The bad news is that it looks like you have a fairly extensive tumour.
    The good news is that the cancer seems to be low grade and hence there is a good chance that it is localised.
    You are looking at fairly extensive treatment, but there is a fairly good chance that it will be successful.
    It worked for me and I started out with a PSA over five times the level of yours and a similar type of tumour.

    Best wishes,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 402 Member
    edited January 2021 #9
    Hi

    Hi

    I would recommend lots of research and in depth chats with specialists in all potential fields. US and UK cancer medical and charity sights have lots of advice on the illness and treatment options. You have some time as this is generally not a speedy bandit.

    When reading cases histories and opinions here, bear in mind everyone is different so take everything with a pinch of salt and don't be swayed by black and white thinking.

    You may want to let your specialist work through the various nomograms (risk calculators) to inform your choice. I tried to try the MSKCC one but it asked for staging which is unknown at your stage - perhaps one of the old lags can help.

    I recommend you look at health and physical health and lifestyle in preparation for your journey as basically the fitter you are in mind and body the better you will facr the challenges.

    Good luck!

  • amdenver
    amdenver Member Posts: 18
    edited January 2021 #10
    New Test PSMA/PET

    Appreciate the feedback gentlemen.

    @Georges: your eking out a piece of optimism out of my grim situation gave me a tad better sleep last night :)

    I suppose all now depends upon what comes out of the bone and the CT scans that I'm scheduled for Jan 22nd. Also have a visit with the Uro on the 19th. Will update.

    Saw this article about a recent development in PET scans. Limited testing for now in LA and SFO, but appear to be open to patients from other areas too.

    Thoughts?

    https://www.nytimes.com/2020/12/16/health/prostate-cancer-scan.html

    https://www.uclahealth.org/psma

    https://www.uclahealth.org/psma

    https://www.youtube.com/watch?v=RMo6GxtGRns&feature=youtu.be

     

    (Remaining part of the post has gone out of whack. Not able to correct it)

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    edited January 2021 #11
    amdenver said:

    New Test PSMA/PET

    Appreciate the feedback gentlemen.

    @Georges: your eking out a piece of optimism out of my grim situation gave me a tad better sleep last night :)

    I suppose all now depends upon what comes out of the bone and the CT scans that I'm scheduled for Jan 22nd. Also have a visit with the Uro on the 19th. Will update.

    Saw this article about a recent development in PET scans. Limited testing for now in LA and SFO, but appear to be open to patients from other areas too.

    Thoughts?

    https://www.nytimes.com/2020/12/16/health/prostate-cancer-scan.html

    https://www.uclahealth.org/psma

    https://www.uclahealth.org/psma

    https://www.youtube.com/watch?v=RMo6GxtGRns&feature=youtu.be

     

    (Remaining part of the post has gone out of whack. Not able to correct it)

    PET

    Some of us here recently were discussing new developments in PET technology for use in mapping PCa (prostate cancer).   Traditionally, neither a PET nor a CT have been of much use in identifying PCa, for a variety of technical reasons.   If your doc suggests that you get one, it cannot hurt, but may not yield any definitive information.   A bone marrow biopsy will be of great use, however.   Based only on results you already have, your case is certainly potentially curable, mostly via radiation.   The PSA of 25, plus perineural invasion learned in the biopsy, generally suggest against surgical removal for most experts.

  • Old Salt
    Old Salt Member Posts: 899 Member
    edited January 2021 #12
    PSMA testing

    AFAIK, PSMA testing is appropriate for low PSA cases, but with a PSA of 25 other scans should be able to localize cancerous sites. The test is quite expensive, and I doubt that insurance would cover it for your type of case.

    From the info given, I agree with Max that radiation appears to be the best therapeutic approach. Perhaps your docs will recommend a 'triple play' (two kinds of radiation + ADT).

    We will be eager to hear the results of your upcoming tests and consultations.

  • Georges Calvez
    Georges Calvez Member Posts: 545 Member
    Interesting paper
    Hi there,

    This may be of interest to you.
    It deals with patients with high PSA levels, associated levels of disease and outcomes.
    As you can see you have a fairly good chance of living for a respectable period of time.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6442132/

    Best wishes,

    Georges
  • amdenver
    amdenver Member Posts: 18
    edited January 2021 #14

    Interesting paper
    Hi there,

    This may be of interest to you.
    It deals with patients with high PSA levels, associated levels of disease and outcomes.
    As you can see you have a fairly good chance of living for a respectable period of time.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6442132/

    Best wishes,

    Georges

    Quite Interesting Information !

    Thank You Georges !

    PSA, Biopsy, CT Scan, Bone Scan and perhaps the MRI, are the major pieces of the unique puzzle that physicans try to stitch together for each new victim of PCa.

    While it may be of some comfort to me, this information muddies the water than any else.

    Thankfully, new steps are happening in advancement. IMO, the new PCa marker in the new PSMA/PET scan appears to promise more accurate initial, or at a recurrence, targeting of the cells that need to be eliminated, wherever they may have mestastised to. Hopefully, this will be a major stride towards preventing recurrence and towards increasing long term survival %.

    Wonderful of so many folks to be on the lookout for new and helpful information.

    Thanks to All & Best

     PS: 1/20/21

    Just came across a reference to this book. Worth taking a look:

    You Can Beat Prostate Cancer by Robert Marckini

  • Georges Calvez
    Georges Calvez Member Posts: 545 Member
    edited January 2021 #15
    Intermediate and advanced prostate cancer

    Hi there,

    You should remember that your prostate cancer is mainly grade 3 with some 4.
    This type of cancer does not throw off metastases that turn up all over the body until quite late in its development, if at all.
    What it does is slowly grow to invade most or all of the prostate, after that it will grow into the neck of the bladder, seminal vesicles, rectal wall, etc.
    60% of men that have metastatic prostate cancer have secondary tumours in the bed of the prostate or in the lymphatic system of the pelvis.
    This is why most men with advanced prostate cancer go on for years, occasionally decades.
    It is a truism that most men with untreatable prostate cancer will die with the cancer and not from it.
    My guess is that your cancer is still localised and you are treatable with either radiation or a prostatectomy plus salvage radiation and ADT.
    Not the best options in the world but better than the treatment for some cancers, they are pretty effective and they are better than dying!

    Best wishes,

    Georges

  • amdenver
    amdenver Member Posts: 18
    edited January 2021 #16
    Bone and CT Scan Results

    Team:

    Both are Negative.

    Bone Scan (Whole Body), Findings:

    There is intense increased radiotracer uptake overlying the
    posterior right lower lumbar facets correlating with degenerative
    change on same-day CT. Additional small focus of increased uptake
    overlying the left L4-L5 facet joints also correlates with
    degenerative change. Increased radiotracer uptake at the T8 and T9
    level is most consistent with degenerative change. This area is not
    imaged on same-day CT.
    There is mild extravasation of tracer in the left antecubital fossa.
    Increased radiotracer uptake in the sternoclavicular joints, right
    elbow joint, bilateral knee joints and bilateral first MTP joints
    all consistent with degenerative change.
    There is symmetric renal excretion radiotracer.

    CT Scan Findings:

    ABDOMEN AND PELVIS

    LIVER: Tiny 4 mm area of low-density change within the dome of
    liver is statistically most likely benign, but too small to
    confidently characterize. Tiny dystrophic calcification within the
    right lobe of the liver.
    BILE DUCTS: Unremarkable.
    GALLBLADDER: Unremarkable.
    PANCREAS: Unremarkable.
    SPLEEN: Unremarkable.
    ADRENAL GLANDS: Unremarkable.
    RIGHT KIDNEY: Mild pelviectasis. Otherwise unremarkable..
    LEFT KIDNEY: Mild pelviectasis. Simple 1.2 cm renal cysts.

    REMAINDER THE RETROPERITONEUM:No CT evidence of adenopathy. Normal
    caliber abdominal aorta.

    BOWEL, MESENTERY AND PERITONEUM: No CT evidence of adenopathy.
    Portions of the bowel are decompressed and suboptimally evaluated.
    Normal appendix right lower quadrant (image #92 series 4). No bowel
    obstruction, inflammatory changes, pneumoperitoneum, pneumatosis,
    significant ascites or other detected abnormality for technique.

    URINARY BLADDER:Unremarkable for technique.
    PROSTATE: Dystrophic calcifications without focal measurable
    abnormality associated with the provided history.
    REMAINDER OF THE PELVIC STRUCTURES:No CT evidence of adenopathy or
    other potential areas of measurable disease

    IMAGED BODY WALL: Unremarkable for technique.

    IMAGED OSSEOUS STRUCTURES: Mild to moderate lower lumbar spine
    predominantly degenerative changes.

    --------------------------------------------------------------------------------------

    Had a meeting with the Uro last week. His recommendation, if no spread, is for RP + 2 years of ADT. Says he's done close to 500 RPs and pretty confident that can keep any collateral damage to the minimum possible. But may be biased towards RP. Did recommend me to consult an RO as well. Have that appt for next week.

    Meanwhile, have come upon information on non-surgical procedures, which is placing Brachytherapy, an internal radiation procedure with long track record, as a top contender with RP and SBRT. But with fewer after affects and quick procedure and recovery. Has two versions, HDR, in which a high dose is delivered to the prostate via a wire, and LDR, in which radioactive seeds are implanted into the prostate for low dose over some time. Also, found information which says that Brachy Boost (Brachytherapy + shortened EBRT) has the lowest recurrence of PCa among the three options.

    https://www.prostatecancer.news/2018/03/brachy-boost-therapy-and-surgery-extend.html

    https://pubmed.ncbi.nlm.nih.gov/30908894/

    https://pubmed.ncbi.nlm.nih.gov/31704459/

    At this point I'm leaning towards Brachy Boost without ADT, if possible. But will know next week if feasible for my situation.

    Thoughts?

     

  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    edited January 2021 #17
    Have you received a clinical stage?

    AMdenver,

    I think that you are doing well in researching before deciding on a treatment. Apart from cure, you need to include in your decisions the factor regarding the side effects that you will endure after therapy. Two friends of mine have chosen Brachytherapy (seeds) as their initial and main treatment because they were diagnosed with supposedly contained cases. One is doing well but the other experienced recurrence and had gone through SRT, managing remission since 2010. Both recovered well from the side effects.

    Brachytherapy is an option for contained cases that, like surgery, can be copped with additional EBRT if the cases are considered advanced. Recurrences from Brachy and Surgery are typically treated with SRT or a combination adding ADT (hormonal treatment). Brachy plus Boost and HDR are also recommended in contained cases. The Boost is done with the intent in widening the targeted field of attack but it is done with lower Gy doses in total. CK alone could be a substitute in contained cases. EBRT alone (IMRT or PB) can do the whole job radiating the whole gland in addition to the surrounding areas of the prostate that includes localized Lymph nodes. It is an option for those with identified metastasis or for those cases where containment is not assured.

    In your case the high PSA may indicate that you have localized spread. In your shoes I would add the results of an MRI to the existing data to be more certain about the case. The size of the gland also matters If your preferences include Brachytherapy. The MRI can provide those details. You can discuss further on the matter in your next consultation.

    Best wishes and luck in this journey.

    VGama

  • amdenver
    amdenver Member Posts: 18
    edited January 2021 #18

    Have you received a clinical stage?

    AMdenver,

    I think that you are doing well in researching before deciding on a treatment. Apart from cure, you need to include in your decisions the factor regarding the side effects that you will endure after therapy. Two friends of mine have chosen Brachytherapy (seeds) as their initial and main treatment because they were diagnosed with supposedly contained cases. One is doing well but the other experienced recurrence and had gone through SRT, managing remission since 2010. Both recovered well from the side effects.

    Brachytherapy is an option for contained cases that, like surgery, can be copped with additional EBRT if the cases are considered advanced. Recurrences from Brachy and Surgery are typically treated with SRT or a combination adding ADT (hormonal treatment). Brachy plus Boost and HDR are also recommended in contained cases. The Boost is done with the intent in widening the targeted field of attack but it is done with lower Gy doses in total. CK alone could be a substitute in contained cases. EBRT alone (IMRT or PB) can do the whole job radiating the whole gland in addition to the surrounding areas of the prostate that includes localized Lymph nodes. It is an option for those with identified metastasis or for those cases where containment is not assured.

    In your case the high PSA may indicate that you have localized spread. In your shoes I would add the results of an MRI to the existing data to be more certain about the case. The size of the gland also matters If your preferences include Brachytherapy. The MRI can provide those details. You can discuss further on the matter in your next consultation.

    Best wishes and luck in this journey.

    VGama

    Brachytherapy

    Hi VGama:

    Your additional information on Brachytherapy experiences is helpful and appreciated.

    Thank You for the valuable other input as well from your deep knowledge on the subject. Laughing

    I've started reading Bob Marckini's book "How to beat Prostate Cancer". As you probably know, he's a big proponent of Proton Therapy, which unfortunately my HMO does not provide or cover. In his staging of his reasonings for his decision against RP, he draws a rather gut wrenching pitcure and says that he was asked to bank 4 pints of his blood for RP.

    I've no prior experience with any surgery, or such prep. I'm reading that our body can replenish the plasma for a pint of blood removed in 24 hours, but can take 4 weeks, or more, to replenish all the red cells. I'm on the lightweight side, at 140 lbs. So, banking 4 pints would be a challenge for me Cry

    Is Mr. Marckini dramatizing, or closer to the truth?

  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    edited January 2021 #19
    Banking blood is typical in open surgeries

    Hi again, 

    Back in 2000 I did prostatectomy via open surgery which procedure typically required the patient to bank 400ml of own blood. In my case they asked me to bank a total of 800ml so that I had to draw blood two times in advance taking me 20 days to be prepared. However,  at those times there were no DaVinci systems (robots) which are today the traditional way for having prostatectomies. As far as I know,  in DaVinci type the patient does not need to give blood in advance because there is no serious cutting of the abdomen. They inserted robot's arms and camera via three holes so that not much blood is lost.

    I hope that the survivors here tell you more about their experience. 

    Best,

    VG

     

  • Clevelandguy
    Clevelandguy Member Posts: 750 Member
    edited January 2021 #20
    Blood banking?

    Hi,

    I had RP by DaVinci about 6 yrs. ago and did not bank any blood ahead of time. As far as I know I did not recieve any blood either. I had a overnight stay and went home the next day with an internal catheter.  Post Op was very uneventful, very little pain, no infections.  Had a bloaded loss of appetite for a couple of days I think because they inflate your abdomen with gas to give the docs working room. Great doctors +great facilities = great results. It pays in my opinin to get a doctor that had performed hundreds or thousands of Davinci surgeries.  Pm me if you need more details.

    Dave 3+4

  • Georges Calvez
    Georges Calvez Member Posts: 545 Member
    edited January 2021 #21
    Banking blood and side effects of RP

    Hi there,

    You should not have to bank any blood with modern robotic or laparoscopic surgical methods as they are minimally invasive.
    The downsides are erectile dysfunction, the percentage of men that experience this are quite high even with younger men that have very good erectile function before the operation.
    There is also a finite risk of incontinence, most men recover more or less with maybe the occasional drip under strain, but around 5% leak badly.
    Good surgeons have better results than the inexperienced, but they all have bad cases.
    Radiation has its own problems.


    Best wishes,

    Georges