When I give severe weather presentations, I often use diagrams and storm images showing airflow within the updraft and downdraft regions of a thunderstorm along with how to read things like radar velocity etc. MRI images appear to be just as complex as meteorological images so why not use diagrams arrows etc. to identify the things going on within?
I await biopsy #2 on Friday because two PIRADS lesions a 3 and a 4 appear to be composed of traitorous enemy cancer cells. Yet I cannot tell where they are even after reading the MRI report and looking at the images. Since conditions are serious enough to warrant a 2nd biopsy, why not explain the findings they are so worried about?
1) Show patients areas of concern as they are being found, digital arrows etc. to point the lesions out.
2) Numerous smudges, nodules and blobs all appear to have early enhancement, poor diffusion etc. yet they are not all cancer, with so many on these images I can't tell which ones are even worth worrying about.
3) To my untrained eye every increased and decreased signal looks like malignant cancer I wonder how many years of medical school are needed for radiologists to even read these things. You radiology guys have a great deal of skill, please draw some arrows for me...
4) A focal region of early enhancement measuring 1.1cm 3:00 on the left peripheral zone of the mid gland??? I tried looking at diagrams and quadrants of the prostate and mine doesn't look even remotely normal. Then I have a 1.6cm PIRADS 3 to worry about and I can't find that one either. I'm beginning to believe the entire 3:00 zone is filled with cancer, or I have an alien prostate that doesn't match online images.
As far as biopsies go the first biopsy wasn't that bad, no real pain as cores were taken, just clicking sounds but it was the pressure of the probe that I found to be the most uncomfortable. I had a fever after that biopsy and had to go to the ER due to an infection scare but other than that the biopsy part was pretty easy. Anytime something is found concerning enough to justify such a risky procedure why not at least show us what doesn't look right, prompting the need for biopsy in the first place?
If I have it I hope they find it because the waiting game will end up killing me before cancer ever does.
I hope that the radiologists are doing a better job than the weather forecasters 
My radiation oncologist did a better job of explaining my MRI imaging to me than my urologist. I suspect that is because he sees imaging every day where urologists get what they need from the report.
My imaging shows one lesion clearly and the other was just a smudge area that I still can’t find. Both lesions were found in prostate pathology, one worse than the other, so the MRI interpretation was pretty accurate in my case.
Prostate cancer grows slow so it is hard to differentiate from normal cells but at least they are static and not swirling around.
7/2018 (66yr), PSA 4.1->5.1
8/2018-MRI PI-RADS 5, MRI guided biopsy, 8/14 cores, G7(4+3)
9/2018-CT/Bone scans clear
11/6/18-RALP Surgery
11/2018-Post-Op Path G7(4+3) Tert Gr5, pT3a pN0, Grp 3, SM, EPE, <3mm
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Grp 5, pT2x, margin vs. incision not clear
4-6/2019 ART 37 sessions
PSA<0.10: 2019, 2020, 2021, 2022, 2023
My radiation oncologist did a better job of explaining my MRI imaging to me than my urologist. I suspect that is because he sees imaging every day where urologists get what they need from the report.
My imaging shows one lesion clearly and the other was just a smudge area that I still can’t find. Both lesions were found in prostate pathology, one worse than the other, so the MRI interpretation was pretty accurate in my case.
Prostate cancer grows slow so it is hard to differentiate from normal cells but at least they are static and not swirling around.
7/2018 (66yr), PSA 4.1->5.1
8/2018-MRI PI-RADS 5, MRI guided biopsy, 8/14 cores, G7(4+3)
9/2018-CT/Bone scans clear
11/6/18-RALP Surgery
11/2018-Post-Op Path G7(4+3) Tert Gr5, pT3a pN0, Grp 3, SM, EPE, <3mm
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Grp 5, pT2x, margin vs. incision not clear
4-6/2019 ART 37 sessions
PSA<0.10: 2019, 2020, 2021, 2022, 2023
My MRI was done in NYC. It was in E. TN where I found a radiologist to explain it to me. It is empowering to look at it with your own eyeballs. It took it out of the abstract and made it more personal and real.
When he first pointed straight at it with his pen, I vividly remember thinking to myself, “There you are. So you’re the root cause of all of this huh? You have no clue what’s coming. I haven’t made my move yet, but we’re coming for you”.
PSA 2010 thru 2014...4.0 +/- .7
Dx 12/14 @ 56 yo...2 cores G6 <5%, 1 core G6 20%, 1 core HGPIN.
RALP 11/25/15...3+4. 3mm PSM+ (G6), 15% involvement, (5% G4) pT2+ Decipher:nonaggressive,3mo.PSA's..01..00...00...01..01..02...02...02...05...014...02..047...028...014...027...031..5mo.psa’s….027....024….024....063…
.034.…053….034…05/23 .03…027….033
One stricture dilation 2016
When he first pointed straight at it with his pen, I vividly remember thinking to myself, “There you are. So you’re the root cause of all of this huh? You have no clue what’s coming. I haven’t made my move yet, but we’re coming for you”.
PSA 2010 thru 2014...4.0 +/- .7
Dx 12/14 @ 56 yo...2 cores G6 <5%, 1 core G6 20%, 1 core HGPIN.
RALP 11/25/15...3+4. 3mm PSM+ (G6), 15% involvement, (5% G4) pT2+ Decipher:nonaggressive,3mo.PSA's..01..00...00...01..01..02...02...02...05...014...02..047...028...014...027...031..5mo.psa’s….027....024….024....063…
.034.…053….034…05/23 .03…027….033
One stricture dilation 2016
Post Edited (island time) : 6/26/2024 8:52:51 PM (GMT-8)
Mumbo, according to your signature you had a PIRADS 5, and that one seems to correlate with a lot of G7+ 8,9 or 10 cancers. Do most PIRADS 3,4,5 ratings accurately reflect their later assigned Gleason scores? Isn't clinically significant PC a minimum of G7+? If a PIRADS 4 or 5 lesion says high risk csPCa is likely to be present doesn't that usually mean they expect to find 7 or 8+ on biopsy?
Uncertainty is the name of the game here with PCa. In some odd way, I was lucky as my diagnosis was first based on a jump in PSA which led to a linear process outlined in signature and treated accordingly.
However, there is uncertainty in every step of the process. Would the PCP refer me on? Would I agree to followup? Would urologist go right to biopsy and skip MRI as was common in 2018? Would MRI find anything of note as MP-MRI's and experienced radiologists were not as common as today? Would 12 core biopsy provide representative results of the actual situation in prostate? Think about digging 12 small holes in backyard and then declaring that the backyard is free from bombs or mines? (you live in Ukraine or have family history of bombs).
It is difficult to understand that the process has considerable variability and that medical science is not accurate and precise. You have to have the biopsy to close the loop as a rock and a bomb look similar to ground penetrating radar.
7/2018 (66yr), PSA 4.1->5.1
8/2018-MRI PI-RADS 5, MRI guided biopsy, 8/14 cores, G7(4+3)
9/2018-CT/Bone scans clear
11/6/18-RALP Surgery
11/2018-Post-Op Path G7(4+3) Tert Gr5, pT3a pN0, Grp 3, SM, EPE, <3mm
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Grp 5, pT2x, margin vs. incision not clear
4-6/2019 ART 37 sessions
PSA<0.10: 2019, 2020, 2021, 2022, 2023
However, there is uncertainty in every step of the process. Would the PCP refer me on? Would I agree to followup? Would urologist go right to biopsy and skip MRI as was common in 2018? Would MRI find anything of note as MP-MRI's and experienced radiologists were not as common as today? Would 12 core biopsy provide representative results of the actual situation in prostate? Think about digging 12 small holes in backyard and then declaring that the backyard is free from bombs or mines? (you live in Ukraine or have family history of bombs).
It is difficult to understand that the process has considerable variability and that medical science is not accurate and precise. You have to have the biopsy to close the loop as a rock and a bomb look similar to ground penetrating radar.
7/2018 (66yr), PSA 4.1->5.1
8/2018-MRI PI-RADS 5, MRI guided biopsy, 8/14 cores, G7(4+3)
9/2018-CT/Bone scans clear
11/6/18-RALP Surgery
11/2018-Post-Op Path G7(4+3) Tert Gr5, pT3a pN0, Grp 3, SM, EPE, <3mm
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Grp 5, pT2x, margin vs. incision not clear
4-6/2019 ART 37 sessions
PSA<0.10: 2019, 2020, 2021, 2022, 2023
Mumbo's point (Uncertainty is the name of the game) is right on.
I just don't get the push to interpret an MRI yourself. One needs to be a reasonably bright college graduate who then goes to med school for four years and, following that, receives further training to become a radiologist who can interpret MRI images.
As an aside, I had (a prostate) one not too long ago and the technician that shoved me into the instrument told me that prostate MRIs are especially difficult to interpret.
The report should be all that is needed for the patient to intelligently map the next step. As has been mentioned several times by now, the MRI should be used to focus on suspicious lesions during the biopsy.
I just don't get the push to interpret an MRI yourself. One needs to be a reasonably bright college graduate who then goes to med school for four years and, following that, receives further training to become a radiologist who can interpret MRI images.
As an aside, I had (a prostate) one not too long ago and the technician that shoved me into the instrument told me that prostate MRIs are especially difficult to interpret.
The report should be all that is needed for the patient to intelligently map the next step. As has been mentioned several times by now, the MRI should be used to focus on suspicious lesions during the biopsy.
Post Edited (Sr Sailor) : 6/28/2024 2:00:58 PM (GMT-8)
Great points Mumbo and Sr Sailor.
The possibility of having PC isn't at all like anything I imagined it to be. I always feared cancers in life and thought it was "We've run a test on you and you have cancer." This leads to the fight against that cancer.
The reality is far different as Mumbo said waiting is the name of the game with PC.
1) PSA above normal lets retest in a few months.
2) PSA still above normal but we cant tell if its cancer or BPH etc. lets get a biopsy.
3) Your TRUS biopsy is negative "OK awesome I'm in the clear, no cancer"
4) PSA has dropped to normal levels for over a year I dodged PCa
5) We're sorry to inform you your PSA has risen from 2.48 to 3.44 in the past 9 months lets do an MRI on you. "OK this will be easy I was negative biopsy two years ago so the MRI should be good to go, no findings.
6) Your MRI came back and we found a 1.1cm PIRADS 4 and a 1.6cm PIRADS 3. "Oh no Im doomed RADS 4 is HIGH risk clinically significant PCa is likely."
7) The MRI does not confirm you have cancer we'll need another biopsy "As I type this I'm on day 3 post biopsy and am tired of all this bleeding and worried about infection risk. I will never again get another rectal biopsy, too much infection risk, why cant they do Perennials instead, it seems less risky.
8) 7-1-24 Waiting for the phone call, I just want to know the results. What if I'm in the clear am I really in the clear? What are the risks that they will provide either a false negative or a false positive?
9) Uncertainty really is the name of the game isn't it. So many questions with no real answers. I'm powerless to control the outcome so I must learn to accept whatever comes next.
A friend of mine is going through stage 4 cancer and I have no idea how he can always remain so positive. Where do all of you guys that have walked this crazy path even get such resilience? I'm nowhere near your level in dealing with this but I had better figure it out and fast. We must all fight this common enemy that we call PCa and its not going to be easy. Kudos to everyone who keeps it all together so well.
03-08-22 PSA 3.18
08-09-22 PSA 3.19
09-12-22 High PSA 4.04 Prostate Biopsy Negative - No cancer found
04-19-23 PSA 3.00 Free PSA 0.35 Free PSA total 11.5%
10-19-23 PSA within normal range 2.44
05-03-24 High PSA again 3.44
06-13-24 MRI PIRADS 4 Lesion and PIRADS 3 lesion found.
06-28-24 MRI guided Biopsy ordered to test suspicious lesions.
The possibility of having PC isn't at all like anything I imagined it to be. I always feared cancers in life and thought it was "We've run a test on you and you have cancer." This leads to the fight against that cancer.
The reality is far different as Mumbo said waiting is the name of the game with PC.
1) PSA above normal lets retest in a few months.
2) PSA still above normal but we cant tell if its cancer or BPH etc. lets get a biopsy.
3) Your TRUS biopsy is negative "OK awesome I'm in the clear, no cancer"
4) PSA has dropped to normal levels for over a year
I dodged PCa5) We're sorry to inform you your PSA has risen from 2.48 to 3.44 in the past 9 months lets do an MRI on you. "OK this will be easy I was negative biopsy two years ago so the MRI should be good to go, no findings.
6) Your MRI came back and we found a 1.1cm PIRADS 4 and a 1.6cm PIRADS 3. "Oh no Im doomed RADS 4 is HIGH risk clinically significant PCa is likely."
7) The MRI does not confirm you have cancer we'll need another biopsy "As I type this I'm on day 3 post biopsy and am tired of all this bleeding and worried about infection risk. I will never again get another rectal biopsy, too much infection risk, why cant they do Perennials instead, it seems less risky.
8) 7-1-24 Waiting for the phone call, I just want to know the results. What if I'm in the clear am I really in the clear? What are the risks that they will provide either a false negative or a false positive?
9) Uncertainty really is the name of the game isn't it. So many questions with no real answers. I'm powerless to control the outcome so I must learn to accept whatever comes next.
A friend of mine is going through stage 4 cancer and I have no idea how he can always remain so positive. Where do all of you guys that have walked this crazy path even get such resilience? I'm nowhere near your level in dealing with this but I had better figure it out and fast. We must all fight this common enemy that we call PCa and its not going to be easy. Kudos to everyone who keeps it all together so well.
03-08-22 PSA 3.18
08-09-22 PSA 3.19
09-12-22 High PSA 4.04 Prostate Biopsy Negative - No cancer found
04-19-23 PSA 3.00 Free PSA 0.35 Free PSA total 11.5%
10-19-23 PSA within normal range 2.44
05-03-24 High PSA again 3.44
06-13-24 MRI PIRADS 4 Lesion and PIRADS 3 lesion found.
06-28-24 MRI guided Biopsy ordered to test suspicious lesions.
Oh, we all have our dark days. The waiting is the hard part.
Here's some things to do: When the biopsy report comes back (usually about a week from the biopsy), get the PDF or hard copy. Please share it here, we can help you translate it. What it will indicate is how many samples they took, and the locations. Then there will be some technical language and a Gleason score. The G score is listed as 2 numbers, a dominant number and a secondary number for each sample. For example, it might say Gleason 3+3, total 6, or 4+3 total 7.
These are the important numbers. Prostate cancer begins at G6, and goes up to G10. Each sample will have scores from 3 to 5, as dominant and secondary. The higher the number, the higher the risk. G6 is the one that bears regular watching, and (maybe) nothing else for a long time. G10 is worst case. It's very rare, in fact.
I was diagnosed at G6. I chose to treat, and my post surgery pathology came in at G7. And I'm doing just fine 9 1/2 years later.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA Non-Detect since April, 2015
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
Here's some things to do: When the biopsy report comes back (usually about a week from the biopsy), get the PDF or hard copy. Please share it here, we can help you translate it. What it will indicate is how many samples they took, and the locations. Then there will be some technical language and a Gleason score. The G score is listed as 2 numbers, a dominant number and a secondary number for each sample. For example, it might say Gleason 3+3, total 6, or 4+3 total 7.
These are the important numbers. Prostate cancer begins at G6, and goes up to G10. Each sample will have scores from 3 to 5, as dominant and secondary. The higher the number, the higher the risk. G6 is the one that bears regular watching, and (maybe) nothing else for a long time. G10 is worst case. It's very rare, in fact.
I was diagnosed at G6. I chose to treat, and my post surgery pathology came in at G7. And I'm doing just fine 9 1/2 years later.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA Non-Detect since April, 2015
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
The possibility of having PC isn't at all like anything I imagined it to be. I always feared cancers in life and thought it was "We've run a test on you and you have cancer." This leads to the fight against that cancer.
That is the TV representation of cancer diagnosis and it is always Stage 4. Other than blood cancers (in fact, blood cancers can require bone marrow sampling), most cancers follow something similar to PCa. A person complains about something and/or a X-ray or scans pick up something and the next step may be a different scan but ultimately a biopsy is needed to type and grade cancer if found. The problem with PCa is the slow growing nature which makes it hard to detect from other cells and its location where nothing is easy.
I will say that when a women or their doctor suspects BCa, the process goes on autopilot and clicks along quite quickly. There is a sense of urgency with other cancers that is not there with PCa, for good reason I suspect and that is our cross to bear.
That is the TV representation of cancer diagnosis and it is always Stage 4. Other than blood cancers (in fact, blood cancers can require bone marrow sampling), most cancers follow something similar to PCa. A person complains about something and/or a X-ray or scans pick up something and the next step may be a different scan but ultimately a biopsy is needed to type and grade cancer if found. The problem with PCa is the slow growing nature which makes it hard to detect from other cells and its location where nothing is easy.
I will say that when a women or their doctor suspects BCa, the process goes on autopilot and clicks along quite quickly. There is a sense of urgency with other cancers that is not there with PCa, for good reason I suspect and that is our cross to bear.
Mumbo makes a good point. PCa is not like other cancers--most of the time. It tends to be slow growing and asymptomatic until it's really bad. Let's contrast that with the other common ones--and a few uncommon ones.
Colo-rectal, for example, is also generally asymptomatic, and is frequently diagnosed when a blockage appears--and in that case it usually IS stage 4, and the prognosis, even with treatment, is pretty bad. Pancreatic might be IMO the worst: It frequently goes from no symptoms to diagnosis to death in months.
PCa, on the other hand, is something most American men will have, even if it is never diagnosed. The understanding is that by the time it is diagnosed, it has been there for years. For most men, it is something that is treatable, and even if it not curable, it can be managed for a long time, and is something we will die with, not of.
I guess what I'm saying is that we first have a lot of learning to do, as men. We also have to do a lot of unlearning. This also leads to some uncomfortable realities. There is a sort of unreality to the rest of the world. PC is no big deal. "Nobody dies of it anymore". Treatment is not a big deal (it is). ETC. I remember, at the time I was planning my surgery, that my boss expected me back at work, at 100% capability, in 3 weeks. When, not a few years before, a coworker went through colon cancer and there was no issue with him being off 5-6 weeks after surgery and then out 1-2 days a week for the next year for chemo.
Anyway, the first thing for you is to get your biopsy report back. Please share it with us. And then, and only then, is it time to think about treatment options--and again, it's not something you have to decide on day 1. Or even day 10.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA Non-Detect since April, 2015
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
Colo-rectal, for example, is also generally asymptomatic, and is frequently diagnosed when a blockage appears--and in that case it usually IS stage 4, and the prognosis, even with treatment, is pretty bad. Pancreatic might be IMO the worst: It frequently goes from no symptoms to diagnosis to death in months.
PCa, on the other hand, is something most American men will have, even if it is never diagnosed. The understanding is that by the time it is diagnosed, it has been there for years. For most men, it is something that is treatable, and even if it not curable, it can be managed for a long time, and is something we will die with, not of.
I guess what I'm saying is that we first have a lot of learning to do, as men. We also have to do a lot of unlearning. This also leads to some uncomfortable realities. There is a sort of unreality to the rest of the world. PC is no big deal. "Nobody dies of it anymore". Treatment is not a big deal (it is). ETC. I remember, at the time I was planning my surgery, that my boss expected me back at work, at 100% capability, in 3 weeks. When, not a few years before, a coworker went through colon cancer and there was no issue with him being off 5-6 weeks after surgery and then out 1-2 days a week for the next year for chemo.
Anyway, the first thing for you is to get your biopsy report back. Please share it with us. And then, and only then, is it time to think about treatment options--and again, it's not something you have to decide on day 1. Or even day 10.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA Non-Detect since April, 2015
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
Dear Into, we get your anxiety. We have all been there at one level or another. Hopefully the biopsy will come back negative. That will lead to more watching but it beats the alternative. If it's positive, please post it here and we will do what we can to help you through this. Even if it is cancer it's very likely slow growing and treatable. You'll have plenty of options. Take a deep breath...
Jim
Forum Moderator-Prostate Cancer. Age 62 (77 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-15 yr: <1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
Jim
Forum Moderator-Prostate Cancer. Age 62 (77 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-15 yr: <1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
Where do all of you guys that have walked this crazy path even get such resilience? I'm nowhere near your level in dealing with this but I had better figure it out and fast.
Time heals all - You are generally not conversing with men now in the first months of their PCa adventure (adventure is the operative word here). With time and experience comes patience and resilience to better deal with the situation. In some ways, those who get a straight forward cancer diagnosis move along much quicker mentally as next steps are quickly determined and working on the solution is right around the corner. PCa diagnosis is a much slower walk as there is so much variance in the possible situation, not a binary yes or no then move to next steps.
There are a lot of questions such as do I have the "good cancer" or the bad version of the good cancer? I didn't like the DRE so how the heck are they going to do the biopsy with equipment? and so on. Since we know the answer to all these questions, our minds are clear to worry about other things.
My simple story - I retired in June 2018 with my future plans all figured out. I had Social Security and Medicare figured out, savings in place, and my wife would retire in 2019 (then came Covid). One month after retirement I had my annual physical and my PSA jumped,"Game Over Man" is what I clearly heard. All my plans went out the window and now I am focused on the next events which cannot occur quick enough, starting in Aug and surgery in Nov. However, I am not clear until March waiting on first post-op PSA. But wait, there is still more. All subsequent information obtained after surgery is not so good so more treatment in April after much study.
So when does the mind settle down? The few weeks before surgery were peaceful, I had a plan in place and just waiting for the event. about a week after surgery, the pathology was available which started the next sequence of events which was similar to getting to the treatment decision, another decision has to be made. So basically it was a year of bad times until I was done and my mental state was getting better as things were getting done.
Summary - The time from PSA increase to a few weeks before treatment (after decisions were made and no more testing was being done) was the worst. Once the information is collected and the decisions made, anxiety drops and you start looking at the period after treatment. On the other hand, if no treatment is mandated such as with Active Surveillance, one lives in a purgatory-like situation never knowing exactly where they stand. So a PCa diagnosis is a curse no matter how it turns out, you cannot un-see the diagnosis and pretend it never happened.
You will make it through this, we all do.
7/2018 (66yr), PSA 4.1->5.1
8/2018-MRI PI-RADS 5, MRI guided biopsy, 8/14 cores, G7(4+3)
9/2018-CT/Bone scans clear
11/6/18-RALP Surgery
11/2018-Post-Op Path G7(4+3) Tert Gr5, pT3a pN0, Grp 3, SM, EPE, <3mm
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Grp 5, pT2x, margin vs. incision not clear
4-6/2019 ART 37 sessions
PSA<0.10: 2019, 2020, 2021, 2022, 2023
Time heals all - You are generally not conversing with men now in the first months of their PCa adventure (adventure is the operative word here). With time and experience comes patience and resilience to better deal with the situation. In some ways, those who get a straight forward cancer diagnosis move along much quicker mentally as next steps are quickly determined and working on the solution is right around the corner. PCa diagnosis is a much slower walk as there is so much variance in the possible situation, not a binary yes or no then move to next steps.
There are a lot of questions such as do I have the "good cancer" or the bad version of the good cancer? I didn't like the DRE so how the heck are they going to do the biopsy with equipment? and so on. Since we know the answer to all these questions, our minds are clear to worry about other things.
My simple story - I retired in June 2018 with my future plans all figured out. I had Social Security and Medicare figured out, savings in place, and my wife would retire in 2019 (then came Covid). One month after retirement I had my annual physical and my PSA jumped,"Game Over Man" is what I clearly heard. All my plans went out the window and now I am focused on the next events which cannot occur quick enough, starting in Aug and surgery in Nov. However, I am not clear until March waiting on first post-op PSA. But wait, there is still more. All subsequent information obtained after surgery is not so good so more treatment in April after much study.
So when does the mind settle down? The few weeks before surgery were peaceful, I had a plan in place and just waiting for the event. about a week after surgery, the pathology was available which started the next sequence of events which was similar to getting to the treatment decision, another decision has to be made. So basically it was a year of bad times until I was done and my mental state was getting better as things were getting done.
Summary - The time from PSA increase to a few weeks before treatment (after decisions were made and no more testing was being done) was the worst. Once the information is collected and the decisions made, anxiety drops and you start looking at the period after treatment. On the other hand, if no treatment is mandated such as with Active Surveillance, one lives in a purgatory-like situation never knowing exactly where they stand. So a PCa diagnosis is a curse no matter how it turns out, you cannot un-see the diagnosis and pretend it never happened.
You will make it through this, we all do.
7/2018 (66yr), PSA 4.1->5.1
8/2018-MRI PI-RADS 5, MRI guided biopsy, 8/14 cores, G7(4+3)
9/2018-CT/Bone scans clear
11/6/18-RALP Surgery
11/2018-Post-Op Path G7(4+3) Tert Gr5, pT3a pN0, Grp 3, SM, EPE, <3mm
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Grp 5, pT2x, margin vs. incision not clear
4-6/2019 ART 37 sessions
PSA<0.10: 2019, 2020, 2021, 2022, 2023
"""On the other hand, if no treatment is mandated such as with Active Surveillance, one lives in a purgatory-like situation never knowing exactly where they stand. So a PCa diagnosis is a curse no matter how it turns out, you cannot un-see the diagnosis and pretend it never happened."""
This is a brilliant point and raises the following question. "Should I get a 2nd opinion"
1) I truly want a negative diagnosis but I have to be satisfied that the doctors are confident they have all the correct data to verify a negative diagnosis should they make a phone call announcing an all clear.
2) If the phone call is for a positive diagnosis treatment can begin and the stakes are not as high so I wouldn't be as inclined to ask for a 2nd opinion.
3) If I were to receive a false negative and they miss clinically significant cancer that is what could cost me my very life by giving the cancer the opportunity to metastasize. If a PIRADS 4 lesion is serious enough to require mandatory SEER reporting it is imperative for any negative biopsy report to be absolutely right.
Just my thoughts, have any of you guys that received a negative report in the past been satisfied and confident that the report was correct or did you fear the possibility of a false negative? Whatever phone call they give me I just want to be confident that the diagnosis is correct especially if the results come back negative. A false negative could be fatal and PC is usually curable as long as they get it early.
This is a brilliant point and raises the following question. "Should I get a 2nd opinion"
1) I truly want a negative diagnosis but I have to be satisfied that the doctors are confident they have all the correct data to verify a negative diagnosis should they make a phone call announcing an all clear.
2) If the phone call is for a positive diagnosis treatment can begin and the stakes are not as high so I wouldn't be as inclined to ask for a 2nd opinion.
3) If I were to receive a false negative and they miss clinically significant cancer that is what could cost me my very life by giving the cancer the opportunity to metastasize. If a PIRADS 4 lesion is serious enough to require mandatory SEER reporting it is imperative for any negative biopsy report to be absolutely right.
Just my thoughts, have any of you guys that received a negative report in the past been satisfied and confident that the report was correct or did you fear the possibility of a false negative? Whatever phone call they give me I just want to be confident that the diagnosis is correct especially if the results come back negative. A false negative could be fatal and PC is usually curable as long as they get it early.
Post Edited (IntoTheUnknown) : 7/2/2024 12:09:13 PM (GMT-8)
[quote= "Should I get a 2nd opinion"
.
Absolutely. Get it from Johns Hopkins. Even though Dr. Epstein is no longer there, they have a staff of highly trained pathologists with experience reading PCa slides. And, it's just as important that you get it if you have a PCa diagnosis as if not. I had a friend whose garden-variety pathologist graded him G7. It was really a G8 and G9; highly unusual patterns that JHU was able to identify. Much different treatment approach.
Jim
Forum Moderator-Prostate Cancer. Age 62 (77 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-15 yr: <1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
.
Absolutely. Get it from Johns Hopkins. Even though Dr. Epstein is no longer there, they have a staff of highly trained pathologists with experience reading PCa slides. And, it's just as important that you get it if you have a PCa diagnosis as if not. I had a friend whose garden-variety pathologist graded him G7. It was really a G8 and G9; highly unusual patterns that JHU was able to identify. Much different treatment approach.
Jim
Forum Moderator-Prostate Cancer. Age 62 (77 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-15 yr: <1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
You might find it beneficial to read up on an active surveillance program like used at John’s Hopkins to get your bearings:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/prostate-cancer/active-surveillance-for-prostate-cancer
The next thing is that a pathologist will look at the cell structure of each of the samples obtained and report the findings:
https://www.cancer.org/cancer/diagnosis-staging/tests/biopsy-and-cytology-tests/understanding-your-pathology-report/prostate-pathology/prostate-cancer-pathology.html
You will want to obtain a copy of your pathology report for reference. The second opinion is a good idea when you get to that point depending on the results:
https://pathology.jhu.edu/patient-care/second-opinions
Thought you might want something to read while you are waiting… like we all did…
7/2018 (66yr), PSA 4.1->5.1
8/2018-MRI PI-RADS 5, MRI guided biopsy, 8/14 cores, G7(4+3)
9/2018-CT/Bone scans clear
11/6/18-RALP Surgery
11/2018-Post-Op Path G7(4+3) Tert Gr5, pT3a pN0, Grp 3, SM, EPE, <3mm
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Grp 5, pT2x, margin vs. incision not clear
4-6/2019 ART 37 sessions
PSA<0.10: 2019, 2020, 2021, 2022, 2023
https://www.hopkinsmedicine.org/health/conditions-and-diseases/prostate-cancer/active-surveillance-for-prostate-cancer
The next thing is that a pathologist will look at the cell structure of each of the samples obtained and report the findings:
https://www.cancer.org/cancer/diagnosis-staging/tests/biopsy-and-cytology-tests/understanding-your-pathology-report/prostate-pathology/prostate-cancer-pathology.html
You will want to obtain a copy of your pathology report for reference. The second opinion is a good idea when you get to that point depending on the results:
https://pathology.jhu.edu/patient-care/second-opinions
Thought you might want something to read while you are waiting… like we all did…
7/2018 (66yr), PSA 4.1->5.1
8/2018-MRI PI-RADS 5, MRI guided biopsy, 8/14 cores, G7(4+3)
9/2018-CT/Bone scans clear
11/6/18-RALP Surgery
11/2018-Post-Op Path G7(4+3) Tert Gr5, pT3a pN0, Grp 3, SM, EPE, <3mm
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Grp 5, pT2x, margin vs. incision not clear
4-6/2019 ART 37 sessions
PSA<0.10: 2019, 2020, 2021, 2022, 2023
Very good advice and good info with those John Hopkins links. I might just pay for that 2nd opinion if I can't get insurance to cover it. I have one other question I'd like to ask.
1) "Not differentiated" vs "poorly differentiated"??? I think the news may be good in my case at least as far as what the MRI report says. Since "poorly differentiated" cells differ greatly from normal cells a reading of "Not differentiated" would mean they appear to look like and are likely just normal cells, is this correct? I can't find anything online to specify poorly differentiated vs not differentiated. I know that the biopsy results are the only thing that can verify the MRI report but if the lesion cells are not differentiated from the other ones the pathology report would have a better chance at showing nonaggressive non mutated cells and hopefully a low Gleason score.
"There is a focal region of early enhancement measuring 1.1cm at 3:00 in the left peripheral zone at the mid gland. This is not differentiated from the remainder of the patchy T2 hypointense signal throughout the peripheral zone. It does demonstrate early enhancement and may have washout. On diffusion there is mildly increased signal and mild decreased signal on the ADC map PIRADS 4
03-08-22 PSA 3.18
08-09-22 PSA 3.19
09-12-22 High PSA 4.04 Prostate Biopsy Negative - No cancer found
04-19-23 PSA 3.00 Free PSA 0.35 Free PSA total 11.5%
10-19-23 PSA within normal range 2.44
05-03-24 High PSA again 3.44
06-13-24 MRI PIRADS 4 Lesion and PIRADS 3 lesion found.
06-28-24 MRI guided Biopsy ordered to test suspicious lesions.
1) "Not differentiated" vs "poorly differentiated"??? I think the news may be good in my case at least as far as what the MRI report says. Since "poorly differentiated" cells differ greatly from normal cells a reading of "Not differentiated" would mean they appear to look like and are likely just normal cells, is this correct? I can't find anything online to specify poorly differentiated vs not differentiated. I know that the biopsy results are the only thing that can verify the MRI report but if the lesion cells are not differentiated from the other ones the pathology report would have a better chance at showing nonaggressive non mutated cells and hopefully a low Gleason score.
"There is a focal region of early enhancement measuring 1.1cm at 3:00 in the left peripheral zone at the mid gland. This is not differentiated from the remainder of the patchy T2 hypointense signal throughout the peripheral zone. It does demonstrate early enhancement and may have washout. On diffusion there is mildly increased signal and mild decreased signal on the ADC map PIRADS 4
03-08-22 PSA 3.18
08-09-22 PSA 3.19
09-12-22 High PSA 4.04 Prostate Biopsy Negative - No cancer found
04-19-23 PSA 3.00 Free PSA 0.35 Free PSA total 11.5%
10-19-23 PSA within normal range 2.44
05-03-24 High PSA again 3.44
06-13-24 MRI PIRADS 4 Lesion and PIRADS 3 lesion found.
06-28-24 MRI guided Biopsy ordered to test suspicious lesions.
Into, Tudpocks point is a good one, get that second opinion. I was initially diagnosed with G8(3+5) which is a terrible diagnosis. After sending the slides to Johns Hopkins, I was downgraded to G6 (3+3), and the G6 was confirmed by Memorial Sloan Kettering pathology. This greatly changed my path of treatment.
To your point, as was said, we persevere. It gets much easier over time, as we adjust. I was out of my mind when I was diagnosed. But over time, I realized, hey, I'm not gonna die, let's get this taken care of and move on.
I, and most others here, still get anxious around the time for our annual, quarterly or whatever the case may be, PSA tests. It's part of the deal. But over time you adjust to the new normal.
The hardest part of a cancer diagnosis, even a very slow growing cancer like PCa, is that it smacks you in the face with the reality of your own mortality. For many of us, for the first time. But over time, we realize, we are all gonna die. But probably not from prostate cancer.
With all that said, this is all premature, because you haven't been diagnosed. So take a breath, realize that your anxiety while waiting for the result is totally normal and to be expected, and just wait for the result. Then you can start working on next steps IF NECESSARY.
Good luck and please keep us posted
I am not a doctor, just a guy without a prostate
Dx Age 64 Nov 2014, PSA 4.3
BX 3 of 12 cores positive original pathology G6
RALP Jan 6, 2015
Post surgical pathology G7 (3+4), - ECE, - Margins, -LN, -SV
PSA @ 6 weeks 2/15, <02, remained <0.02 until 1/2017, .02, repeat 2/2017, still .02. 5/2017-.033, 8/August 2017- .033 8/17 .046, 3/2018 .060. 6/2018 .068, July 2018 - .08, 8/ 2018, .078, Start ADT+SRT.
Sept 2018 thru May 2022 –PSA = <.05
Decipher test, low risk, .37 score
My story.... tinyurl.com/45w7789x
Every day’s a bonus – Sonny3
To your point, as was said, we persevere. It gets much easier over time, as we adjust. I was out of my mind when I was diagnosed. But over time, I realized, hey, I'm not gonna die, let's get this taken care of and move on.
I, and most others here, still get anxious around the time for our annual, quarterly or whatever the case may be, PSA tests. It's part of the deal. But over time you adjust to the new normal.
The hardest part of a cancer diagnosis, even a very slow growing cancer like PCa, is that it smacks you in the face with the reality of your own mortality. For many of us, for the first time. But over time, we realize, we are all gonna die. But probably not from prostate cancer.
With all that said, this is all premature, because you haven't been diagnosed. So take a breath, realize that your anxiety while waiting for the result is totally normal and to be expected, and just wait for the result. Then you can start working on next steps IF NECESSARY.
Good luck and please keep us posted
I am not a doctor, just a guy without a prostate
Dx Age 64 Nov 2014, PSA 4.3
BX 3 of 12 cores positive original pathology G6
RALP Jan 6, 2015
Post surgical pathology G7 (3+4), - ECE, - Margins, -LN, -SV
PSA @ 6 weeks 2/15, <02, remained <0.02 until 1/2017, .02, repeat 2/2017, still .02. 5/2017-.033, 8/August 2017- .033 8/17 .046, 3/2018 .060. 6/2018 .068, July 2018 - .08, 8/ 2018, .078, Start ADT+SRT.
Sept 2018 thru May 2022 –PSA = <.05
Decipher test, low risk, .37 score
My story.... tinyurl.com/45w7789x
Every day’s a bonus – Sonny3
Prato has the right idea, you can not change anything by worrying and even when you have some information, the adventure has to play out which takes time, no shortcuts.
I peppered my late father with questions as my adventure unfolded (he had PCa but heart got him at 96). He said: "You are beginning to over study the cancer issue. At this point you should be looking at other issues. If you keep studying the problem, you may have to make application for medical school. The path you are on has a lot of waiting with few decision points for virtually the rest of your life. When you reach one of these decision points and you want to discuss it, I’ll offer comments if Alzheimer’s hasn’t got me in its grip.
Do not confuse MRI and pathology with regard to "differentiated cells", apples and oranges. The MRI is an aerial view that may make some macro observations vs. a microscopic analysis. Only pathology looks at the actual cells and makes that determination. More waiting....
I peppered my late father with questions as my adventure unfolded (he had PCa but heart got him at 96). He said: "You are beginning to over study the cancer issue. At this point you should be looking at other issues. If you keep studying the problem, you may have to make application for medical school. The path you are on has a lot of waiting with few decision points for virtually the rest of your life. When you reach one of these decision points and you want to discuss it, I’ll offer comments if Alzheimer’s hasn’t got me in its grip.
Do not confuse MRI and pathology with regard to "differentiated cells", apples and oranges. The MRI is an aerial view that may make some macro observations vs. a microscopic analysis. Only pathology looks at the actual cells and makes that determination. More waiting....
Into, I'll be blunt. You are obsessing over an MRI report which may or may not be definitive. That is the reality. The MRI is not telling you that you definitely have prostate cancer. It says, there are some spots here that may be a bit unusual, but we don't know exactly what is going on, further investigation is needed.
Like it or not, you're about 6 steps ahead of yourself. You don't have cancer until a skilled pathologist looks at prostate cells removed during a biopsy and says you do. A second opinion is on your biopsied cells, NOT on your MRI.
Do you have a biopsy scheduled? Have you even talked to your doctor about your desire to have one? It's pointless to talk about treatment options until you have, again, the biopsy results, and THEY have been verified by a second opinion.
I get it. You don't really want a biopsy. Here's the deal, you need one. Get it. And stop bargaining with your life based on an MRI.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA Non-Detect since April, 2015
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
Like it or not, you're about 6 steps ahead of yourself. You don't have cancer until a skilled pathologist looks at prostate cells removed during a biopsy and says you do. A second opinion is on your biopsied cells, NOT on your MRI.
Do you have a biopsy scheduled? Have you even talked to your doctor about your desire to have one? It's pointless to talk about treatment options until you have, again, the biopsy results, and THEY have been verified by a second opinion.
I get it. You don't really want a biopsy. Here's the deal, you need one. Get it. And stop bargaining with your life based on an MRI.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA Non-Detect since April, 2015
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024
Solid points by Mumbo ngl, I can definitely understand the frustration, especially when you’re already anxious and then get handed a report full of terminology that’s difficult to make sense of. I found it really helpful to keep notes of the questions I wanted to ask and what the doctor actually explained, because there’s so much to take in at these appointments. I’ve also used Freed AI to keep better track of medical conversations, which made it easier to go back over the details afterwards.