My Journey begins - Navigating with Prostate Cancer

curtalva
curtalva Member Posts: 18 Member
edited January 10 in Prostate Cancer #1

My first PSA test was at age 51 and was only taken as I was applying for life insurance. This was in 2014 and my PSA was 3.0

My next PSA was taken a month ago in November 2023 during a normal physical at the age of 59. This PSA test came back as 64 (not 6.4 but 64).

I was referred to Urologist and they performed a DRE ("firm") and another PSA test that came back as 81.

My urologist scheduled a biopsy for Dec. 8th. In the meantime I had to fight with my urologist to arrange for an MRI but I was successful and have the MRI. My PI-RADS score is 5. I'll post the results below. This has led me (and my wife) to try and take in and absorb the overwhelming amount of information that is necessary to know in order to make informed decisions. I'm hoping that this discussion forum will be a great source of support and information as well. :)

Given my PI-RADS score of 5 by the radiologist from my MRI it is my understanding that it's more than likely that I have clinically significant cancer. The next question that the biopsy should provide is the Gleason score. I understand that these scores fall into 5 groups. Group 1 is a wait and watch approach and Group 5 is the worse. Given my PI-RADS score the chances are that I'll fall into Group 2 or above. If that is the case than I will need to consider a plan of treatment of which there are quite a few. They basically fall into two categories. Surgery or radiation therapy. Radiation Therapy has a few options within this category including SBRT, Proton Therapy, and others. I'm torn on the options and don't like any of them but the radiation therapy, to me, seems less invasive. They all have side effects that are not going to be fun to live with. And it seems there is no resolution, in the end, for ongoing symptoms (slow/low urine flow, increasing ED issue, hesitation) that led me to get my PSA checked in the first place.

I'm a bit confused because I would have thought (and have believed over the years) that I have an "enlarged prostate" given my symptoms and always believed that it was "normal in aging men" with regards to what I have been experiencing (my symptoms). However, my MRI indicates a prostate volume of 37 which falls well within the 'normal' range of a prostate size. ???

Any thoughts regarding my situation, MRI results, where I'm at and what lies ahead for me are greatly appreciated as I begin my journey into uncharted waters for me.

Thanks in advance!


MY MRI results...

EXAM:

MRI PROSTATE WITHOUT AND WITH CONTRAST

CLINICAL DATA:

Elevated PSA

COMPARISON:

None.

TECHNIQUE:

Multiplanar multi-sequence MR imaging of the prostate was performed

before and after the administration of intravenous contrast.

3D volume rendering and labeling of any relevant focal lesions in

the prostate gland performed by using DynaCAD software for potential

fusion biopsy planning.

Contrast: 10cc of gadavist

FINDINGS:

Prostate measurements: 3.9 x 3.7 x 3.5 cm

Prostate volume: 27 cc

FOCAL LESIONS:

--Peripheral zone:

Essentially the entire bilateral peripheral zone has abnormal T2

signal involving nearly all sectors. Increased signal on diffusion,

decreased signal on ADC. Early arterial enhancement.

Lesion 1:

Location: Nearly all sectors of the peripheral zone

Dimensions:37 mm

T2:T2 hypointense, 5

Diffusion/ADC:Decreased signal ADC, 5

Enhancement: Positive

Extension:Abuts the capsule throughout the entire peripheral zone

Key images: Series 7, image 14; series 450, image 11-13.

PI-RADS score: 5

--Transitional zone:

No focal lesions characteristic of clinically significant

malignancy.

Seminal vessicles: Negative

Bladder: No bladder wall abnormality

Other pelvic findings: No adenopathy or other acute findings.

IMPRESSION:

1. Abnormal signal, diffusion, and enhancement in essentially the

entire peripheral zone. Correlate with clinical evidence of acute

prostatitis. Diffusely infiltrating neoplasm possible with this

appearance as well. Follow-up or further evaluation is appropriate.

PI-RADS 5

2. Normal volume prostate, 27 cc

«1

Comments

  • Old Salt
    Old Salt Member Posts: 1,258 Member

    You will have many decisions to make regarding your prostate, but you are studying and listening. I agree with your preliminary conclusion that treatment will be necessary. I may be running slightly ahead, but the big issue, IMHO, is whether cancer has left the prostate. The biopsy and various scans that are likely in your future will be very helpful in that context.

    I hope that you are in the hands of a urologist with significant experience in prostate cancer. Many have benefitted from getting a second opinion, but let's wait for the biopsy results with that.

    With respect to biopsies, the transperineal approach is the preferred one these days. I hope that your urologist is proficient in that method.

    Ultrasound-guided transperineal prostate biopsy - Mayo Clinic

  • Clevelandguy
    Clevelandguy Member Posts: 940 Member
    edited December 2023 #3

    Hi,

    In looking at your exam results it looks like you have an infection in your Prostate(acute prostatitis). That might account for some of your high Prostate PSA number. Might want to get that cleared up before the biopsy in my humble non medical opinion. Slight chance a biopsy can give you a infection and you probably don’t need another one. Then you can retake your PSA test again after the infection is gone to see if the number is lower. Even though Pi-rad 5 can mean cancer only a biopsy can truly determine if you have cancer and what the Gleason score is. Sounds like you are starting to work through the process. Good luck……

    Dave 3+4

  • Old Salt
    Old Salt Member Posts: 1,258 Member

    Yes, I quite agree with the above comment. Prostatitis can really raise your PSA values. Let's hope that no cancer will be found in the biopsy samples.

  • curtalva
    curtalva Member Posts: 18 Member

    How does one get tested for the presence of Prostatitis?

    They did have my urine tested for infection when I went to the urologist after my PSA of 65 but all good on the urine. My blood test didn't seem to indicate anything other than the high PSA.

  • centralPA
    centralPA Member Posts: 207 Member
    edited December 2023 #6

    That is an unusual MRI result for cancer, but not crazy for prostatitis. Either way, something odd is going on.

    I applaud you for fighting to get the MRI first. Best practice. Keep your reading going, goal should be to anticipate what the doc says, not be surprised by it. You’re tracking…

    Edit: uggh, auto-complete is doing a number on me today. :)

  • curtalva
    curtalva Member Posts: 18 Member

    My "gut" feeling was that it just doesn't add up for me that it's cancer. No family history of this. I do realize that it can happen but it seemed 'odd' to me. I "feel" that prostatitis is more likely and would explain my symptoms.

    I wonder what you think about my MRI that you find unusual or 'off'?

    Thanks,

    Curt

  • centralPA
    centralPA Member Posts: 207 Member

    In my short time reading mine and other people’s MRI results, I’ve never seen one that said essentially all of your peripheral zone (PZ) is looking not right, on both sides, fore and aft, up and down. You don’t really have a lesion like we normally see, with a size of maybe a centimeter or so in diameter. Nice, neat target. Instead, the radiologist just calls out your entire PZ as a lesion. That’s odd. He says it sure looks like prostatitis, but could be a bunch of diffused cancer. Can’t be ruled out. Unlikely, but merits investigation.

  • Old Salt
    Old Salt Member Posts: 1,258 Member

    Prostatitis can have a non-bacterial origin. Your urologist should be able to clarify this issue.

  • curtalva
    curtalva Member Posts: 18 Member

    My wife and I consulted with the Urologist/surgeon today. The biopsy is scheduled for Friday. I'll provide an update after that and then with results when they come in.

    The Urologist said that he had seen lesions (albeit diffused) that covered the "entire peripheral zone" as the radiologist stated in my MRI results. He convinced my wife and I that no matter if it's benign, whether it's prostatitis or whether it's cancer the only way to determine precisely what it is is to have the biopsy and get the tissue samples analyzed. So Friday it is.

    He said that with the PI-RADS 5 score I got from my MRI that it's a 70-80% chance of being cancer but "let's not go there yet" was what he said.

    I still think it's prostatitis but that's just my "gut" feeling. Hmmm....

  • centralPA
    centralPA Member Posts: 207 Member

    One thing I've learned, is never underestimate your gut feeling. Here's hoping you are right.

  • curtalva
    curtalva Member Posts: 18 Member

    My prostate biopsy has been completed and I've just in the past couple days been able to receive and review my pathology report. It's not good but I guess it could be worse.

    The results show that out of the 12 prostate core samples taken, 11 have tested positive for cancer, each with a range of 70-90% positivity. My overall Gleason score is 3+4. While a 3+4 score wouldn't be too concerning if it were isolated to only 1 or 2 core samples, the high number of positive cores explains my elevated PSA level of 81.

    The positive aspect I guess is that the majority of the cancer within each core was graded as a 3, with a smaller portion graded as a 4, leading to my 3+4 score. It's my understanding that typically, 3's are less worrisome, and even having a few 4's might be manageable to monitor closely. However, due to the 11 cores showing 3+4, it's likely that I'll need to undergo treatment. At this point, radiation therapy seems to be the more likely option, although decisions are yet to be made.

    The next step for me involves a PSMA Pet Scan of my entire body, aiming to rule out any metastasis. This scan is capable of detecting cancer in common areas affected by prostate cancer, such as the lymph nodes or bones, and less likely, but possible, in other parts of the body. My higher risk category is attributed to the PSA level and the extensive positivity in the cores.

    I'm also awaiting a Prolaris report, a genetic test that will provide insights into the likelihood of cancer spreading to other areas based on genetics.

    My wife and I are dedicating ourselves to learning more each day, exploring treatment options, and ensuring that we are on the best path forward with my diagnosis. We're staying positive while making informed decisions as we progress through further tests and evaluations.

    On a side note, out of the blue, I reached out to Dan Fogelberg's wife and heard back from her with a nice message of support within about 30 minutes!

    Treatment seems unavoidable in the coming months which will bring with it life-altering quality of life impacts depending on the type of treatment and how well those treatments are conducted. Unfortunately, with the prostate it seems like a no-win situation for the treatment of the symptoms that got you to the diagnosis and then you also are left to deal with the side effects of the various treatments.

    Regards,

    Curt

  • neilm
    neilm Member Posts: 39 Member

    Curt,

    I am sorry to hear your results were positive. Treatment is undesirable in many ways, I am wandering through choices for treatment as well. It has been awhile since I was diagnosed and I have been progressing slowly towards treatment . In my case the time has allowed me to come to conclusions that 1) I definitely will take treatment over the alternative 2) while there are potentially bad side effects, it can’t be assumed any of us will experience all of them , maybe we won’t, we just need to be prepared if we do. I am not a doctor but it seems younger men recover better from treatment in general. Hang in there it appears to me you are responding to the challenge energetically and positively, there are quite a few of us out there you are not alone.

    Neil

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Hi,

    11 positive cores out of 12 represents a voluminous case which, typical involve extraprostatic extensions. In other words, it might be a none contained case (pT3).

    Surely, the 68Ga-PSMA exam will add more reliable information, however, identifying extensions around the gland can be difficult at the areas close to the bladder. It depends on the protocol used at the facilities you are using.

    if your diagnosis is localized then you may consider Radiation (RT) or a combination of RP + RT, doubling the risks. In voluminous cases, Surgery (RP) alone may not solve the issue totally.

    Prepare a list of questions to discuss the matter with your urologist. In your shoes I would educate on treatments side effects and would look for second opinions before making any decision.

    Please note that a Gleason score of 7 (3+4) in a voluminous case with high PSA of 64 ng/ml, is not viewed as an intermediate status.

    I would like to know what does the pathologist report say.

    Wishing you luck in this journey.

    Best

    VG

  • curtalva
    curtalva Member Posts: 18 Member

    VG,

    I'm curious what you may be looking for in the Pathology Report. I will attach it for review. You've gotten my attention. What I was hoping to see was the percentage of '4' scores within each core however this information was not included. As far as I know this is the entire report. Please let me know if there is something I am missing.

    Curt


  • centralPA
    centralPA Member Posts: 207 Member
    edited December 2023 #16

    Usually it will say the percentage of 4. The fact that the grade is 3+4 and not 4+3 does tell you that the 4 is the minority.

    Checking the NCCN guidelines, you would Unfavorable Intermediate but for the high PSA. That kicks you into the High Risk category.

    Its worth getting a second opinion on the pathology.

  • curtalva
    curtalva Member Posts: 18 Member
    edited December 2023 #17

    VG,

    I'm curious what you may be looking for in the Pathology Report. I will attach it for review. You've gotten my attention. What I was hoping to see was the percentage of '4' scores within each core however this information was not included. As far as I know this is the entire report. Please let me know if there is something I am missing.


  • curtalva
    curtalva Member Posts: 18 Member

    My urologist said that given that 11 of the 12 cores came back positive and within all 11 cores 70-90% of each core sample was positive for cancer that this sheer volume explains the wild high PSA of 81.

    My MRI showed abnormal T2 signal diffusion essentially throughout the entire bilateral peripheral zone of the prostate. Extension: Abuts the capsule throughout the entire peripheral zone. No bladder wall abnormality.

    I'm hoping that the sheer volume within the gland explains my PSA of 81 and that it is still contained within the prostate. The PSMA Pet Scan is scheduled for Jan. 6th.

  • oldspice
    oldspice Member Posts: 50 Member

    Wishing you the best Curt. The early stages of not knowing can really place a lot of negative ions in the brain so best of luck on that. I myself have just begun the process and am a bit ahead of you so I know where you are. One of my cores was a 4+3(65%) also some 3+4 and 3+3s. Mine seems localized to right medial axis but it has left the prostate to a regional lymph node. That darn lymph node! They said I caught it early but it is still stage 4A because of lymph node. Of course they have me on ADT to stop the spread and then 45 radiation treatments starting in March. Keep us posted and stay strong

    Doug 4+3/4A

  • Old Salt
    Old Salt Member Posts: 1,258 Member

    You (Curt) are following a logical path to come to a decision with respect to treatment.

    I join the others who have contributed to this thread in wishing you the best and hope that the PSMA test won't reveal metastasis. I will add that a bone scan might be appropriate as well. Although this may be unusual, I have read about a recent case with a negative PSMA scan but a (highly) positive bone scan. This finding may have been due to the fact that some prostate cancer cells express little no PSMA.

  • curtalva
    curtalva Member Posts: 18 Member
    edited December 2023 #21

    Following the prostate biopsy coming back positive in 11 of the 12 cores (70-90% positive) all of which were graded 3+4 my urologist ordered a Prolaris test. The Prolaris genetic test is designed to provide information about the aggressiveness of prostate cancer. This test analyzes the genetic features of tumor cells, offering invaluable information that enables healthcare providers to assess the growth rate and aggressiveness of the cancer. The results aid in delineating whether active surveillance, surgery, radiation therapy, or other interventions are more suitable based on individualized case characteristics.

    I find it fascinating that TRICARE does not typically approve this genetic test (CPT code 81541) and I am now fighting to get the Prolaris test approved through a rare exception clause. I was really looking forward to this test as it will provide me crucial information regarding the aggressiveness of the cancer, the type of cancer that I'm facing and my survivability risk assessment as my specific genetics stacks up against the exact cancer that I have. This will aide my healthcare providers to know which treatment would be best and be critical to me to determining my treatment plan plan as I consider the array and severity of side effects that accompany each treatment option.

    As a 60 year-old retired (U.S. Navy) veteran under Tricare, facing a diagnosis of prostate cancer I believe that understanding the aggressiveness and characteristics of my cancer is pivotal in determining the appropriate course of action and treatment plan. The Prolaris genetic test is a valuable tool that provides essential insights into the aggressiveness of prostate cancer, aiding in the critical decision-making involving treatment strategy.

    Tricares’ denying coverage for a test that plays a crucial role in guiding treatment decisions deprives veterans like myself of the ability to make well-informed choices about their health and well-being. This is a test that is routinely approved by other cancer patients health insurance and routinely approved by Medicare Plan B.

    I can't understand how anyone could deny a cancer patient this coverage especially if they were to consider the gravity of this matter, and imagining oneself in a similar position faced with critical decisions regarding their own cancer treatment in the absence of this test.