Recent diagnosis questions

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TY_AZ
TY_AZ Member Posts: 3

Hi everyone,

My story's probably pretty common: last year I go in for an annual checkup, primary care doc ran blood tests, and WHAM! elevated PSA (7.9).  He referred me to a urologist who did the DRE (nothing) and then had me do an MRI and a "liquid biopsy" (came back negative; still don't know what that was supposed to detect).  MRI showed a lesion so I had an extremely painful fusion biopsy with the lesion as the area of interest.  All cores came back benign.

After about five months, ran another PSA and it was still going up (10.something).  The urologist wanted to run another biopsy but since the first one was so painful, his "you should have cancer" reasoning didn't sell it to me.  I didn't shelve the idea; I know something was raising the PSA and spent time trying to find another urologist.

I found one and he ran me through another MRI in August:

FINDINGS:
PROSTATE: There is mild central gland enlargement due to changes of BPH throughout the transitional zone. No suspicious foci of T2 signal abnormality in the transitional zone.

There is a stable 1.5 cm lesion in the posterior left peripheral zone near the mid portion that shows restricted diffusion, hypointense T2 signal and early enhancement. There is mild T2 signal heterogeneity throughout the peripheral zone which can be associated with active or prior prostatitis. There is a small amount of bulging of the overlying capsule, similar to prior.

Volume: 36.9 cc

SEMINAL VESICLES: Normal.

BLADDER: Mildly trabeculated.

LYMPH NODES: Normal.

BONES: Normal.

INCIDENTAL PELVIC FINDINGS: None.

IMPRESSION:

1. Stable 1.5 cm lesion in the posterior left peripheral zone; there is mild bulging of the overlying capsule in keeping with a small amount of extracapsular extension of disease.

2. No findings for metastatic disease in the pelvis.

PI-RADS v2.1 Category 5 - Very high

I think it was the bulging that got this urologist to recommend a second biopsy which I did last month:

Diagnosis:

A. Prostate, right base, needle biopsy:

- Benign prostatic tissue.

B. Prostate, right apex, needle biopsy:

- Atypical small acinar proliferation (ASAP).

C. Prostate, right mid, needle biopsy:

- Benign prostatic tissue.

D. Prostate, left base, needle biopsy:

- Prostatic adenocarcinoma, grade group 2 of 5 (Gleason score 3+4).

- Carcinoma involves two of two cores (40% of specimen D).

E. Prostate, left apex, needle biopsy:

- Benign prostatic tissue.

F. Prostate, left mid, needle biopsy:

- Prostatic adenocarcinoma, grade group 2 of 5 (Gleason score 3+4).

- Carcinoma involves two of four cores (60% of specimen F).

G. Prostate, target, needle biopsy:

- Prostatic adenocarcinoma, Grade group 2 of 5 (Gleason score 4+3).

- Involves one of three cores (15% of specimen G).

And there it is... and here I am.

I have not been able to get in to discuss options with my urologist yet (the doctor who did my biopsy was a different urologist; he made it seem like we're on the RP path).  I was originally scheduled for tomorrow then it got rescheduled to May(!!!) but then I was able to, at least at this point, get an appointment for the end of this month.

Right now as I'm waiting, I'm just working off of a lot of Googling and forum reading as well as a lot of wild personal speculation on what an RP involves and what sort of recovery is available.  Where I'm confused is that there seems to be a lot of variation in the RP procedure as to what's removed that I'm reading in the forum and it seems difficult to correlate stated recoveries to what RP was performed.

I'm mostly just speaking out loud due to the surreal feeling ever since I got those biopsy results.  I've seen others mention the difficulty in getting back to focusing.  This is definitely a brotherhood I wish didn't have to exist.

I wish all the very best in their own situations!!

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,689 Member
    edited November 2021 #2
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    Choose wisely

    Hi TY,

    Welcome to the board.

    According to the above info, you seam to have a T3a N0 PCa case. The left peripheral mid zone lesion identified in the MRI  was confirmed being cancerous in 3 cores (F and G). This seems to be the area where the extraprostatic extension exist. They also found cancerous tissues (D) at the base of the prostate (just under the bladder) which is the area of the delicate prostatic sphincter. Though all the positive cores are located in one solo lobe of the prostate, unilateral prostatectomy may not be considered as the best option due to the extraprostatic finding.

    Gleason rate 4 indicated as the prime grade in the targeted needle G is the focus in recommending a treatment.

    I think that you should research the details involved in each type of treatment, get second opinions on the recommendations from your doctor, discuss with your family about your findings and then decide. Life is never the same once we get a positive diagnosis. 

    I wonder your age.

    Best wishes and luck in this journey. 

    VGama 

     

     

  • Clevelandguy
    Clevelandguy Member Posts: 1,076 Member
    edited November 2021 #3
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    Time to research

    Hi Ty,

    From what I have read about your biopsy I would also want to talk with a radiation oncologist about options.  Sad to say but it sounds like the horse has the the barn as far as the cancer goes. I would also request a PET scan and bone scan to determine the spread of your escaped cancer.  Second opinions are not a bad thing to confirm your first round of diagnostics.  Make sure you get the best doctors and facilities around to get the best results.  Cyberknife and Proton external beam radiation are treatment protocols I would be looking into.  Radiation is an excellent form of treatment for cancer that has escaped the Prostate.  Good luck and respond back with questions and concerns.

    Dave 3+4

  • Josephg
    Josephg Member Posts: 408 Member
    edited November 2021 #4
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    Welcome, and Find a Medical Oncologist

    Welcome to the Forum that nobody wants to join.

     You have come to the right place, though, as we in this Forum are all prostate cancer (PCa) survivors.  We are not doctors or medical professionals, and as such, we cannot, and will not, give any medical advice to you.  We are, however, experts in PCa survival from the patient's perspective, and we will freely give you our impressions and suggestions, and the results of our extensive individual PCa research efforts, from the patient's perspective.

    The good news is that PCa typically spreads very slowly, allowing ample time for treatment options to be identified, implemented, and assessed.  For the most part, PCa is very treatable, with good prospects for a cure in many cases,.  And, in those cases where a cure is not possible, there are treatment options that can keep PCa under control for many years, even decades.  Most folks with PCa eventually die from other circumstances than PCa.

    You have already started your own research into PCa, and this is critical in being able to participate in any treatment options planning and delivery.  Knowledge is important, as at the end of the day, it is only you who will make the final decisions regarding treatment.

    This is important.  I strongly recommend that you find and engage a Medical Oncologist to be the long term leader of your PCa medical treatment team.  A Medical Oncologist has no professional preference for potential treatment options, such as surgery or radiation, and the Medical Oncologist is the expert in hormone therapies, which may be used in conjunction with other treatments, such as radiation. 

    Personally, I've had PCa for over a decade, and my Medical Oncologist has been at my side for my entire PCa journey.  Surgeons and Radiation Oncologists have come and gone with their treatments, at the direction of my Medical Oncologist, but my Medical Oncologist remains my sustaining medical professional and consultant.

    Other folks more knowledgeable than me will chime in with their perspectives and suggestions.  We are all here to support you.

    I wish you the best of outcomes on your potential PCa journey.

  • TY_AZ
    TY_AZ Member Posts: 3
    edited November 2021 #5
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    Hi VGama,
     
    I'm 53

    Hi VGama,

     

    I'm 53

  • TY_AZ
    TY_AZ Member Posts: 3
    edited November 2021 #6
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    Medical oncologist and doctors in general

    I appreciate all the insight and advice!  They have brought up a few other questions I've gleaned from these responses as well as other posts:

     - medical oncologist.  A co-worker's neighbor had been the head of one of the cancer centers here and that had also been his recommendation.  So far I've only found medical oncologists who also list other specialties too (like another specific oncology).  Not sure if that's typical or if those other specialties might have an influence on the professional preference for treatment options.

    - finding the best doctors and facilities.  I would definitely love to hear insight on how others have processed this search.  

  • Old Salt
    Old Salt Member Posts: 1,399 Member
    edited November 2021 #7
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    All good suggestions so far

    You are doing an excellent job coming to terms with your medical situation. It's vey unfortunate, of course, especially because you are young (relatively speaking). But there's time to make a judicious decision; just continue on your journey of learning about the various options to fight the disease. 

    In the meantime, we will welcome your questions; our responses may vary based on our own experiences; ultimately you will need to make the decisions.

    Good luck!

  • Clevelandguy
    Clevelandguy Member Posts: 1,076 Member
    edited November 2021 #8
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    Doctors and facilities

    Hi,

    My Internist steered me away from one hospital network in favor of another who he thought had better doctors and facilities/equipment. Ask around with other doctors(second opinion) and see what networks they recommend.  Some doctors have internet raitings also available on the web and some doctors will let you talk to former patients.  It would be nice to find a oncologist that specializes in Prostate cancer.

    Dave 3+4

  • CMO2021
    CMO2021 Member Posts: 53 Member
    edited November 2021 #9
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    Doctor and Facilities

    Hi Ty-ASZ,

    I would recommend you look for a Cancer Center of excellence near you for treatment.  Regarding 2nd opinions, please know with telemedicine you can pretty easily do a second opinion with any major Cancer Center of Excellence without leaving home. 

    Best regards,

    CMO

    Chris

  • mads19
    mads19 Member Posts: 1 Member
    edited November 2021 #10
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    I'm in Phoenix, had RP

    Hi Ty,

    I live in Phoenix and was diagnosed with 3+4 and went through a difficult process trying to find the best Doctors and deciding on my best treatment.  At least you have Ironwood and CTCA as well as Mayo in the area.  I'm happy with the Urologist I used for my RALRP (I interviewed four).  Mark Scholz book, "The Key to Prostate Cancer" is certainly worth a read. Feel free to send me a PM and I am more than happy to talk with you if you would like.