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PIRADS 5 MRI - Urologist said almost certainly Prostate Cancer

Sydney Sider
Sydney Sider Member Posts: 4
edited September 29 in Prostate Cancer #1

Hi All,

I'm sure many if not most of you have been in my position, whereby I am currently trying to digest and process a conversation with my urologist a few hours ago. Understandably, I'm shocked scared, apprehensive as to what comes next. I'm not sure why I'm posting here? I guess it may be part of my processing. I'd be happy if anyone would like to comment in any capacity. Here is my story:

I'm 53 and have had prostate and UTI issues since my early 20s. I was diagnosed at 25 with BPH and have always had higher than normal PSAs (1.0 to 2.0 even as a young man). For this reason, I always made sure to regularly get my PSA checked, usually every 2 years or so.

My health and lifestyle up until 3 years ago to this month, was very good and in fact I used to ride 100km on my bike easily. One day, I did a long ride and in the evening I couldnt urinate - the back pressure was very painful. I went to the docs and went on antibiotics and I did not have a repeat episode, BUT my urine flow, which has been bad for decades, got somewhat worse.

A few months later, literally overnight, I went from being super fit, to not being able to walk up stairs without a huge effort. Extreme fatigue set in and later IBS symptoms. For the 1st 6 months, I was basically home bound - more accurately, floor bound. I saw every specialist under the sun, endo, neuro, gastro, cardio, immuno etc and they could not find anything definitive. For the last 3 years, my days have consisted of this fatigue, IBS, brain fog, irratibility and in recent times whole body soreness and strange whole body vibration that would keep me awake. A similar vibration I get in the prostate when engaging my pelvic floor.

A year ago, my routine PSA jumped from it's usual 2.0 tp 3.5 in 12 months, my urologist got me to recheck it and 3 weeks after the 3.5 reading, it was 5.1. MRI - PIRAD 2 and I got a biopsy done last Dec, 2020 and it found no malignancy. 

In the last 10 months since my clear biopsy, my health continues to decline with the whole body vibrations more pronounced and sustained. My legs feel like I have run a marathon and im constantly short of breath, sore lower back and tired - Of course there may not necessarily be a correlation with my prostate.

Last month my PSA was 6.2, so urologist said I should get another MRI. He did another PSA a week later and it was 6.6. I got my MRI back today and the urologist said he has bad news and continued to tell me that my MRI showed a tumor with a score of PIRAD 5 with the following:

ill-defined mass like low T2 intense subcapsular focus measuring 8 x 19mm in craniocaudal diameter and 7mm in craniocaudal diameter is localised to the upper mid and basal left posteromedial peripheral zone displaying type 3 pattern of enhancement and moderately high focal diffusion restriction with minimal ADC of 0.751. No other significant sizeable focal MRI abnormality detected. The prostate capsule is intact. 

 I am booked in for next Tues for a biopsy, but he said he was almost certain it was prostate cancer. I know MRIs miss things sometimes, but I have been so diligent over the years keeping on top of things. 10 months ago it was clear. urologist said the 1st MRI was probably crappy :( He wants me to get a PET scan to see if it has spread. I'm really worried :(

 

Comments

  • Old Salt
    Old Salt Member Posts: 834 **
    Puzzled

    I am sorry to read about your medical situation. Whether you actually have prostate cancer or not still need to be established, but even if you do, that wouldn't explain the other issues you have been experiencing. 

    I realize this is all quite stressful, but you should continue to see other medical professionals who might be able to help you. The extreme fatigue that you described is not a common side effect of early prostate cancer.

    Wishing you will be able to resolve both issues.

  • Sydney Sider
    Sydney Sider Member Posts: 4
    Josephg said:

    Welcome and Try to Calm Down

    Welcome to the Forum that nobody wants to join. 

    You are reacting just like most folks who receive word that they may have, or actually do have, prostate cancer (PCa). It is a totally normal reaction, one that you will need to manage as best as you can over time.  I know, easy to say, but very hard to do.  You have come to the right place, though, as we in this Forum are all 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.

    This is important.  The only test that can actually 'confirm' that you have PCa is a biopsy, which returns cancerous cells in the needle extractions of tissue samples.  You have also experienced the fact that not all biopsies return cancerous tissue, even though cancerous cells 'may' in fact exist in the prostate.  A biopsy, without any additional information regarding where precisely to take the needle samples is akin to looking for a needle in a haystack.  My thought is that with the results of the recent MRI in hand, your next biopsy will be very targeted, to obtain tissue samples from those specific questionable areas identified in the MRI.

    Should the next biopsy confirm that you in fact do have PCa, your next step as a patient is to start your research on PCa, and there is a wealth of information on this topic, both here, and in many other places.  You will want to understand PCa itself, along with available treatment options, as much as you can, so that you can actively participate in subsequent discussions with the medical professionals regarding any treatment options. 

    If it turns out that you do in fact have PCa, 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, if in fact, it is confirmed that you do have PCa on your next biopsy.

    a huge thank you

    i am truly touched with the amount of your own time, care and compassion you have afforded a total stranger. im still trying to process things which is nigh difficult without the biopsy and pet - so i feel somewhat in limbo. your calm and rational words have helped. thank you so much and all the best wishes for your continued management of PCa.

  • Sydney Sider
    Sydney Sider Member Posts: 4
    Old Salt said:

    Puzzled

    I am sorry to read about your medical situation. Whether you actually have prostate cancer or not still need to be established, but even if you do, that wouldn't explain the other issues you have been experiencing. 

    I realize this is all quite stressful, but you should continue to see other medical professionals who might be able to help you. The extreme fatigue that you described is not a common side effect of early prostate cancer.

    Wishing you will be able to resolve both issues.

    thx old salt

    hi puzzled, thank you kindly for taking the time to respond. im trying not to let my mind get carried away with things as i know that is not helpful. i agree that many of my symptoms are not normally associated with early stage prostate cancer. i guess my fear is that it is not early stage and metastatis could perhaps explain my worsening and undiagnosed symptoms over the last 3 years. i am scheduled for a PET scan sometime after the biopsy and probably just as apprehensive of that outcome as the biopsy. thx again for your input. 

  • VascodaGama
    VascodaGama Member Posts: 3,429 **
    edited September 29 #5
    Image studies identify abnormalities, biopsies diagnose cancer

    You have received great advices and comments from the survivors above. My comment regards the next biopsy that should,  particularly, target the spot identified in the MRI. The radioisotope used for the PET should be appropriate for prostatic tissues (PSMA, Axumin, F18-Choline) instead of the typical FDG that looks for tumor activity. I would add to the above opinions the need in getting a complete lipids test, including the free-PSA, testosterone and thyroid's T4 and T3, to try understanding the series of symptoms you describe above. Inflammation of a nerve (neuritis) could justify many of the effects you experienced. Anemia  can lead to extreme fatigue and it could be a cause from poor diet.

    Best wishes 

    VG 

     

  • Sydney Sider
    Sydney Sider Member Posts: 4

    Image studies identify abnormalities, biopsies diagnose cancer

    You have received great advices and comments from the survivors above. My comment regards the next biopsy that should,  particularly, target the spot identified in the MRI. The radioisotope used for the PET should be appropriate for prostatic tissues (PSMA, Axumin, F18-Choline) instead of the typical FDG that looks for tumor activity. I would add to the above opinions the need in getting a complete lipids test, including the free-PSA, testosterone and thyroid's T4 and T3, to try understanding the series of symptoms you describe above. Inflammation of a nerve (neuritis) could justify many of the effects you experienced. Anemia  can lead to extreme fatigue and it could be a cause from poor diet.

    Best wishes 

    VG 

     

    Thank you VG

    I very much appreciate you taking the time to respond. I have found all replies very helpful. I will take note of your recommendations and ask the question of the specialists. On my journey to try and regain wellness over the last 3 years, I have seen so many specialists and done every test under the sun, including thyroid and parathyroid test, hormones and as mentioned above, my recent free PSA was 11% which added to the specialists suspicions that another MRO=I was needed - founded. I'm not anemic and my diet is good. It appears my whole body works together i.e when my ibs and head fog are at their worst, they are both at their worst. The catalysts seem to be, SUGAR, MILD EXERTION and STRESS. No specialist has ever offered an explanation as to why. My pancreas markers are fine, my adrenal functions are ok, insulin ok etc, but if i have a slice of cake or bowl of icecream - im stuffed and on the floor for days. same with a jog around the block, although i can walk long distances without triggering an attack. thanks again, im starting to ramble lol 

  • Josephg
    Josephg Member Posts: 309 **
    Welcome and Try to Calm Down

    Welcome to the Forum that nobody wants to join. 

    You are reacting just like most folks who receive word that they may have, or actually do have, prostate cancer (PCa). It is a totally normal reaction, one that you will need to manage as best as you can over time.  I know, easy to say, but very hard to do.  You have come to the right place, though, as we in this Forum are all 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.

    This is important.  The only test that can actually 'confirm' that you have PCa is a biopsy, which returns cancerous cells in the needle extractions of tissue samples.  You have also experienced the fact that not all biopsies return cancerous tissue, even though cancerous cells 'may' in fact exist in the prostate.  A biopsy, without any additional information regarding where precisely to take the needle samples is akin to looking for a needle in a haystack.  My thought is that with the results of the recent MRI in hand, your next biopsy will be very targeted, to obtain tissue samples from those specific questionable areas identified in the MRI.

    Should the next biopsy confirm that you in fact do have PCa, your next step as a patient is to start your research on PCa, and there is a wealth of information on this topic, both here, and in many other places.  You will want to understand PCa itself, along with available treatment options, as much as you can, so that you can actively participate in subsequent discussions with the medical professionals regarding any treatment options. 

    If it turns out that you do in fact have PCa, 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, if in fact, it is confirmed that you do have PCa on your next biopsy.

  • Raelynn700
    Raelynn700 Member Posts: 1
    edited October 3 #8
    Spouse newly Diagnosed

    He had been followed since he was 40 with PSA and in the last 2 years it had creeped ,he is now 73. So they did a biopsy and he is at Stage 1. It has been overwhelming just to learn the differnt options , so I am glad that you suggested getting an Oncologist. My biggest fear is him not getting the right treatment. I keep  being told that  one choice is to wait at that stage, because it is slow growing,  however I disagree . I have survived Thyroid cancer once, and Breast Cancer once because it was caught early. I am not a Dr. and it is overwhelming  where to go with this. My husband is healthy other than this. So forward we go. 

     

  • lighterwood67
    lighterwood67 Member Posts: 305 **
    Good luck

    Good luck on your journey.  If you can, try to tackle one issue at a time.  By all means get that second biopsy.  That will give you a clearer picture of what you are up against.  Again, good luck.