I suppose like everyone here I was hoping that they would say “ooops, we made a mistake”. But he didn’t.
my summary
15 cores sampled
5 positive.
4 are 3+4
1 is 3+3
PSa 8.6.
clinical stage T2a
The red flag for me was—
cribform present - yes
How significant is the cribform and does it move you to automatic RALP.
I assume the doctor will order a body scan or other tests. I’m a bit frustrated because his call was literally 5 minutes and he said that his office would call to set up another consult. They called and my appt is in 3 weeks.
mom teally trying to gather info as the whether the cribform rules out radiaton treatment.
Thank you.
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Chasbearcat999
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59. Pretty good health. No Polaris or Decipher. Does my doctor have to order those?
No idea of free PSA.
I have had MRI. 1 spot, Pirad 4
I'm becoming a bit annoyed by this process. Maybe it is typical. The pattern seems to be, wait 3 weeks for a visit. Order test. Wait on the results. Get results, and schedule visit. Wait three weeks, another test.
Thank you. I will look into a second opinion on slides.
1 of 1 core and 29% (4 mm of 14 mm), 10% pattern 4.
15) SMALL FOCUS OF PROSTATIC ADENOCARCINOMA, GLEASON SCORE 6 (3
+3).
Comment: This MRI fusion biopsy was performed by Dr.
Immunoperoxidase stains (PIN3 multiplex) including antibodies to basal cells (p63 and high molecular weight cytokeratin) and P504S (a marker preferentially expressed in prostate cancer) were used to further evaluate small foci of atypical glands in the LLA, RLM, 13-1, and 13 -2 cores. The glands in the LLA and RLM cores retain a basal cell layer, supporting benign diagnoses. The atypical glands in the 13-1 and 13-2 cores lack a stainable basal cell layer and display granular cytoplasmic positivity for P504S, supporting the diagnosis of adenocarcinoma.
I suggest that your first line of treatment would be to take a CHILL PILL and calm down and then as others have mentioned follow the suggestions given regarding 2nd opinion, further scans + non invasive tests. If your Dr. will not do as you ask - walk out the door and find another - 'cause it's YOUR BODY ( i.e. your LIFE) !!
I need to add that You have to like your doctor in order to Trust your doctor. Be direct and tell him just that and his reaction will tell you to move to another doctor or not.Addicted2cycling is spot on: it's your life!
your next step is to get a bone scan and a ct scan. Most likely these will be negative for metastasis given your relatively low/intermediate Gleason but still doctors want to see these before proceeding. I don’t see why you need to wait for an appointment or consult to get these. Just tell your urologists office that these are standard after a positive biopsy and they should order them from a local hospital asap.
Once you get these you can decide your course of action - prostatectomy, radiation or one of the newer alternatives. Here’s the difficult part. There is no absolute right course of action for everyone. There are different options and you, the patient, must decide among the many options. Take your time (within a reasonable 2-3 month period), talk to many people, don’t be steamrolled into someone saying “trust me”. A lot will depend on your individual situation - age, fitness, which side effects you most worry about, how you feel about surgery vs radiation, etc.
Cribriform increases your risk slightly. If there is a significant amount of pattern 4 (cribriform is included with pattern 4), you should have treatment, not necessary surgery. It does not rule out radiation. You have plenty of time to meet with specialists and decide.
definitely send your cores to Dr. Epstein for a second opinion. You can arrange that Thru his office. Only a few hundred dollars. Very useful since the one thing everyone’s agrees upon PC is he is the best. Also, was your biopsy a random biopsy or an MRI guided biopsy. If it was random, you should change doctors and get an MRI guided biopsy. I did a 14 needle random biopsy and was supposedly cancer free. But my PSA kept going up. So I found a dr to do an MRI guided biopsy. He said they saw the spot on the MRI and they were going to do a three needle biopsy there. All three were Gleason 8. So 0-14 random biopsy and 3-3 on the MRI guided biopsy. Random is Stone Age science.
Your scores suggest that "watchful waiting" with active surveillance may be the approach most oncologists would recommend. You are in a marginal area, so a more aggressive doctor might recommend taking action sooner than later, but your tests indicate the level of urgency is not all that high.
Having said that, I feel where you are coming from. I have multiple locations in my prostate, Perineural invasion (PNI) and evidence of seminal vesicle involvement. But since you are almost certainly confined to the prostate gland itself, you have a very good chance of nipping this in the bud and perhaps becoming cancer-free if you act quickly. It depends on how active your cancer is. Genomic testing is supposed to help give a determination of that.
I never heard of the term "cribriform" before. You might want to read this article.
The advice you got about scheduling more testing for metastasis before your next appointment is (in my opinion) worthwhile. But I may be being over-anxious. With biopsy results like yours, your oncologist may be confident that your cancer is slower-growing. A second read of your biopsy resulsts (same samples, just sent to another pathologist - Johns-Hopkins is supposed to be the best in the country, if not the world) would give you some reassurance with the least risk to you. Bone scan, CT Scan and PSMA-PET scan involve injecting you with some "tracer" chemicals. A second read of your biopsy is a lot cheaper and convenient.
Your insurance company may have influence over your treatment decisions as well, though there is some controversy over the ethics of that situation. But there it is.
In 2018, I was diagnosed with Gleason 9, stage T2a prostate cancer in 8 of 12 cores, PSA 6.2. My urologist made it sound like I needed to do something right away and that surgery was my best option. I had always trusted doctors and someone close to me told me he was a good doctor.
I let him do RARP on me. It turned out to be life changing and the worst decision of my life. My RARP took twice as long as estimated and I had to endure the catheter twice as long also. Within 3 or 4 days I knew something was terribly wrong. I started having panic attacks almost immediately after my surgery.
I spent well over a thousand hours researching online, watching a video of an actual RARP, talking to urologists, cancer survivors, implant surgeons as well as implant recipients. I even looked at land mine survivors and transgender surgeons. I went to another urologist that also does implants. The look on his face during the exam told me what I needed to know. I retired early. I had to educate myself. I don’t think there is a prostate cancer forum that speaks English where I haven’t talked to someone. I would rate this forum at the top of that list.
Every person I talked to tried to misdiagnose me, but I knew what they were telling me did not match my symptoms. I found a solution, but it is not one many here could accept. Even Tall Allen tried to talk me out of it. My prostate surgeon tried to make it look like I had a mental problem. I knew my urethra had to be too short because my penis was trying to pull inside out to the point of pain.
I spent a whole year talking to 3 different mental health providers. In less than 2 years and before I could do anything about it, my cancer came roaring back and required ADT + radiation. That complicated fixing my problem.
I drove a very long distance to a major city in another state during COVID to get reparative surgery. One of the 3 surgeons who worked on me came out while I was in recovery and told my wife that not only had I been correct, but that I had a urethra the length of a female. They had never seen what they found inside of me and were surprised I had functioned as well as I had. My original surgeon had to have known what he did to me. I am a Christian, but that surgery placed me in the most hated group of people on earth.
Please don’t take this as an attempt to dissuade you from surgery as there are millions of satisfied people post-surgery. Listen to the people on this forum. With your Gleason score you have time!! You have the right to get another opinion and choose whatever treatment you want. MAKE ABSOLUTELY CERTAIN you get an experienced doctor to perform whatever option you choose. I fired my first doctor (urologist) and now drive to see a urology oncologist 50 miles from where I live.
i really appreciate the insights! I did get a call today that they have ordered the pmsa scan and are waiting on insurance authorization, in order to have the results back when I have the consultation.
In my mind my priorities are obviously survival, but I’m 59 with no ED issues and an active sex life. Losing that would be difficult. My current thought is to hope for no Mets and avoid surgery.
You guys have all been very generous, helpful and informative. I really do appreciate any advice.
You need to start studying fast and hard. You are entering an extremely disfunctional industry.
You are not in terrible shape yet. You will notice all kinds of little delays in between pretty much every step. After you study, and know the odds of cure for every treatment pathway, you might notice the urologists quoting much different numbers to you.
I found that the docs would tell me it was my choice which way we would go, but then they would quote inaccurate statistics that if followed, would drive me to their preffered pathway.
Another mistake i made was to throw one hook in the water at a time. I was sure the docs would help me. But if they don’t, you have to throw another hook in. This causes delays. Delays allow cancer to morph its dna or advance. You may throw a bunch of hooks in at the beginning. Parallel not series. Its your life.
Look at these three charts til you know them by heart. If you have trouble find someone to help you read them. (Hint: draw a dot on the endpoints of each elipse and draw a line through the dots. Easier to read).
Also i never heard of cribriform as a descriptor, but i did read that the prostate capsule is misunderstood to be something thick and somewhat protective. But in fact it is membrane thin and has many holes. From my memory.
So spend 4-8 weeks studying papers and books on this subject.
And... when you are in this situation, there is no chill pill, or relaxation. Lol. You are in defcon 5 until you can stabilize the situation and that is ok. It will help you drive forward.
Thank you. I am digging pretty deep into this. I’m lucky that I have a very good GP to kind of coach a bit.
He actually did prescribe a “chill pill”. He asked me if anxiety was an issue and I told him that while I did feel particularly anxious, my Garmin (similar to Apple Watch) was showing my stress levels as very high and that my heart rate was running much higher than normal. He prescribed a low dose beta-blocker and that has been helpful.
This group has been very helpful in guiding me to information!
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