Newly diagnosed with prostate cancer and still gathering information

Posted by brucemobile @brucemobile, Apr 3 9:59am

I was just diagnosed within the last two weeks. My PSA is 4.1 which I’m thinking isn’t that bad. I was not prepared for the results of the biopsy. Gleason 4+3 intermediate unfavorable. 13 of 15 cores positive. The urologist is favoring surgery. Second opinion also surgery but wants a Pet scan which is in the process of being scheduled. I am in Alabama and expect to be treated here. I am still in the asking questions and doing research stage, at this point I don’t know until after the pet scan if I have any options. The information on the post operative effects ofsurgery goes from mild to wild, I’m concerned. Anyone who can share their experiences would be appreciated.

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Profile picture for rlpostrp @rlpostrp

Hello - I am surprised that with a 4.1 ng/ml PSA, that you are at a 4+3=7 Gleason score with 13 out of 15 cores positive (that is a LOT of cores...it is usually a 12 core biopsy at most). Suggestions:
1) If your urologist did not order the test, MAKE SURE they order the "Decipher Test". It is a test that screens for 22 prostate-cancer-specific genes and mutations that help determine short and long term rate and risk of progression/reoccurence, as well as your predicted longevity.
2) With what is already a 4+3=7 Gleason score (not the slightly more preferable 3+4=7), I'd go straight for DaVinci Robotic-Assisted Radical Prostatectomy. "Why wait?" Like my doctor told me even being a 3+4=7, and after I asked what my options were including "Active Surveillance", he said: "You're already at a moderate risk level, why would you want to do Active Surveillance?...the cancer is there, it is only going to continue to grow and spread..it is NOT going to go away." Then without a pause he said: "I'm taking your prostate." I'm glad he did because my pathology was much worse than what the 3+4=7 Gleason score might have suggested (my PSA was slightly higher at 6.1 ng/ml). My urologist changed his overly confident mindset of "you'll be alive in 15 years", to one of my "cancer is an aggressive one...we need to talk about radiation (after the RP)."
3) The PET Scan is quick and easy - 30 minutes of slow incremental scanning of your body from neck down to mid-thigh looking for any Gallium 68 uptake that may be elsewhere in your body. What you want is that all the uptake was/is confined to the prostate, showing that the cancer has not spread to other areas (metastasis). I was lucky, my was all confined to the prostate, but that is all the PET Scan tells you. It tells you nothing of pathology.
4) Make sure that your urologist has done a couple thousand DaVinci RP's, and that you are having it done at a highly regarded hospital, preferably a teaching institution like a university medical center (U of A)...NOT your local community hospital. Actually, most local community hospitals can't cost-justify having a DaVinci Robotic system...you will only find them in 300-400 "+" bed hospitals that see a LOT of patients. BTW...the DaVinci method is preferred by most urologists because it is a single, 2.5" incision about 3 inches below your navel, instead of "five" 3/4" incisions all around your lower abdomen with the traditional/older method. You just want "best practices", "best technology", and "best urologist" in your region.
The main takeaway is that a Gleason Score is only the tip of the iceberg that tells you have prostate cancer and to what "preliminary" extent. If there is one thing I have learned through my own case and reading many other accounts here - like yours - is that the Gleason Score and a PSA that is only 4.1 ng/ml can fool you into thinking your cancer is not aggressive or aggressive "yet", when in fact, it could already be quite aggressive.
Good luck with everything.

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Your detailed commentary here is especially helpful to me. I am seeing my urologist in the morning to go over repeated blood work and the MRI. I know from the MRI report that I have one focal lesion contained with my prostate. I want it removed as quickly as possible. I will try to convey my desire to bypass a biopsy, just get one with the surgery!

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I was a 4.01 with a Gleason score of 4+3=7, 13 out of 15 cores positive with cribriform. 2 weeks post surgery.

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Profile picture for brucemobile @brucemobile

I was a 4.01 with a Gleason score of 4+3=7, 13 out of 15 cores positive with cribriform. 2 weeks post surgery.

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Thank you for sharing. Glad you had the surgery, Bruce, I hope that I am a candidate for RARP asap. I hope your journey forward is particularly positive!

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Profile picture for jayhall @jayhall

I'm 60 and I'm scared as well. I'm having some anxiety about my surgery but I know it's necessary. I don't want the incontinence afterward and I'm going to do the necessary PT exercises etc to regain control of my bladder. Your Dr. might have wanted to schedule surgery that quickly due to the fact that it's a process with insurance etc. and takes a while. They might have wanted to schedule it in advance so that you could get a spot quicker etc. and more from a logistic standpoint then a disease standpoint. I wish that I could get my surgery quicker, but I'm stuck with my date due to the number of people in line ahead of me for the same surgery.

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I hope to get scheduled for RARP this morning - that is my goal, anyway!

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Profile picture for steveapplebaugh @steveapplebaugh

My thought. precisely -- I have seen and read my recent MRI and clearly have a focal lesion. But it is contained within the prostate. I see my urologist in the morning to go over the results and make a plan. I will push for treatment ASAP. No AS. I would prefer to bypass a biopsy. Just remove the prostate and send it on to the pathologist. Can have the whole thing, never mind "cores"!

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Did you get a PIRADS score for the lesion? If it’s a four or a five, then it could be cancerous and need to be treated right away. If it’s a three or less than it usually is not be cancerous. Even a 4 is on the border, a biopsy would give a lot more information.

You may not have cancer, Removing your prostate without more information would go against medical guidelines.

Hopefully your urologist can give you more information so you can make a sensible decision about what to do. It’s a little early to decide to remove your prostate. That will dramatically affect your life, a lot more than other possibilities.

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Profile picture for steveapplebaugh @steveapplebaugh

My thought. precisely -- I have seen and read my recent MRI and clearly have a focal lesion. But it is contained within the prostate. I see my urologist in the morning to go over the results and make a plan. I will push for treatment ASAP. No AS. I would prefer to bypass a biopsy. Just remove the prostate and send it on to the pathologist. Can have the whole thing, never mind "cores"!

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I have no idea, I’m not a doctor. But it seems to me that for the # of positive cores, that radiation not an RP would be the choice. After all, why do thru the risks of an RP to then have to do radiation anyway?
As for one lesion, you need to wait for the biopsy and PSMA Pet scan. You may be in the lucky situation, where you don’t need to have an RP and risk incontinence, rectal issues, and ED. Just saying.
I’m getting prepped for my Proton Therapy with Gleason 8, localized with no Extra capular extension, and clean PSMA. I know the possibility of recurrence later but am willing to kick the can down the road. Personally I question any RP.

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My insurance company denied my decipher test as medically unnecessary! *• I am 4+3 so I’m getting it either way and will fight with insurance to pay it.

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Profile picture for shayes914 @shayes914

My insurance company denied my decipher test as medically unnecessary! *• I am 4+3 so I’m getting it either way and will fight with insurance to pay it.

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@shayes914
Contact Decipher and advised insurance will not pay for it.

Decipher will offer you reduced costs and if needed set up a payment plan.

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Profile picture for jayhall @jayhall

I'm 60 and I'm scared as well. I'm having some anxiety about my surgery but I know it's necessary. I don't want the incontinence afterward and I'm going to do the necessary PT exercises etc to regain control of my bladder. Your Dr. might have wanted to schedule surgery that quickly due to the fact that it's a process with insurance etc. and takes a while. They might have wanted to schedule it in advance so that you could get a spot quicker etc. and more from a logistic standpoint then a disease standpoint. I wish that I could get my surgery quicker, but I'm stuck with my date due to the number of people in line ahead of me for the same surgery.

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I had a RARP 23 months ago. It went well and my follow-ups have been an undetected PSA level. The incontinence was an issue. At three months, after doing pelvic floor exercises, progress still seemed frustratingly slow. I was reading everything. I came across an a brief mention of someone using his Concept II rower and finding it very effective. I too have that rower and started to use it. I experienced faster and continuous improvement in my recovery.

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A prostatectomy will remove the cancer. You may or may not have a recurrence later, but it will be treatable so not a death sentence. The prostatectomy may result in incontinence and or erectile disfunction. There are treatments for both and if the treatments don’t work, you can get an inflatable penis prostheses and an artificial urinary sphincter. I’ve gotten both in a single surgery and just wish that I had gotten them sooner. Remember that after having a prostatectomy, you can still have sex and can still have orgasms. Most doctors advise Tadalafil 5 mg daily after the surgery to keep blood flowing to your genitalia. The old “use it or lose it” applies.

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