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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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surftohealth88 | @surftohealth88 | 13 hours ago
In reply to @datatech "Gleason was 3+3(6), Decipher and Prolaris put me at low risk. MRI showed 1 tumor at..." + (show)
@datatech

Gleason was 3+3(6), Decipher and Prolaris put me at low risk. MRI showed 1 tumor at .9cm, I had a 30 core transperineal biopsy with 9 cores positive, 5 cores were between 1 and 4 percent ( almost nothing ) and the other 4 were at the site of the tumor. PSA 4.6, CT PSMA showed no cancer at all, not even in the prostate, but biopsy and genetic study said it was there but mild. In one year, I grew a second tumor (likely due to finasteride) and had a mild abutment. Even as low grade as it was, I figured I no longer needed to be on Active Surveillance and chose the TULSA procedure in Dallas, Texas.

I saw a different Uro for a third opinion and he looked at a previous MRI and said I could probably go much longer and not do anything. But he also does DaVinci surgery so, he likely likes patients to wait and be force to have surgery.

No regrets on TULSA and if anyone have questions, do ask...I will be open with everyone about my experience.

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I am so happy for you and I think you made correct decision since "things were happening and changing" and second lesion appearing. I wish that my husband and I questioned our urologist more and went for second opinion long time ago. Urologist downplayed PSA changes as well as growing MRI PI RADS , actually never pointed to PI RADS meaning and now we are in unfavorable place. IMHO - you made great decision especially since you used TULSA method .

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surftohealth88 | @surftohealth88 | 13 hours ago
In reply to @datatech "Hmmm, OK. Well, I think that most URO's like to do DRE's and RP's. It seems..." + (show)
@datatech

Hmmm, OK. Well, I think that most URO's like to do DRE's and RP's. It seems to be in their nature. I had every offer of radiation, seeding, removal, and Active Surveillance. When you say your Gleason is 3+3(6) and a Decipher of 51 percent...that sounds a little off to me. Do you mean the Decipher was .51 percent. You need to get a physical copy of your Decipher report from the URO and look at it and tell us what the Genomic Risk is and what the 5,10,15 year risks are. What is your PSA?

Now, first it sounds like you had a trans-rectal biopsy which has a difficult time getting all the prostate sampled. A transperineal biopsy could sample the entire prostate from 18 to 30 cores and then you really would know what you have and where. You did not mention if you have any tumors and the size, that will take a MRI and frankly, IMO, a MRI should have been done prior to a biopsy.

If you have two cores positive, no tumors, Genomic Low Risk, you could probably do Active Surveillance for a number of years. However, if you do that, then you need to test PSA every 6 months and MRI every 9 to 12 months. Don't let doctors lull you into yearly PSA and MRI every two years. The problem with AS is that at some unknown time, the cancer can jump start itself and spread. Something you absolutely do not want.

You likely have more options than you know, and, if you can give the members here more information they can better help you. If you had only one small tumor you could do NanoKnife, a transperinal approach that leaves the sexual and urinary function virtually untouched. There is HIFU, a trans-rectal approach, there is TULSA, a trans-urethreal approach. But, until you have an MRI with contrast you are at a disadvantage deciding what is the best approach. And honestly, if you can find a doctor that does a transperineal biopsy, I would get one of those. They are painless afterwards, almost zero chance of infection, and you get a full sampling of the prostate.

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Can not agree more . AS should be VERY active as soon as 3+3 is discovered. I would suggest from personal experience to do biopsy every 2 years ( and MRI even more often). We had only 2 biopsies with measly 12 cores (2019 and 2025) and MRI every 2 years and 3+3 became 4+3, IDC-P with cribriform ! 🙁
BTW, my husband did not have Decipher but he did have some other genetic test and came as "low risk" in 2019. Sure ...

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1 reply
datatech | @datatech | 11 hours ago
In reply to @surftohealth88 "Can not agree more . AS should be VERY active as soon as 3+3 is discovered...." + (show)
@surftohealth88

Can not agree more . AS should be VERY active as soon as 3+3 is discovered. I would suggest from personal experience to do biopsy every 2 years ( and MRI even more often). We had only 2 biopsies with measly 12 cores (2019 and 2025) and MRI every 2 years and 3+3 became 4+3, IDC-P with cribriform ! 🙁
BTW, my husband did not have Decipher but he did have some other genetic test and came as "low risk" in 2019. Sure ...

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Yes indeed! Active Surveillance should be very ACTIVE but I am afraid many men, being how we are, don't want to face what we heard and so just follow blindly what the URO says. I have seen this quite a bit on various cancer boards where people just waited and waited, until some 'number' was met and then did something. Often times, that may be too late or it may be they are now in a grueling treatment plan.

I am a huge fan of transperineal biopsy and tell men that if your doctor does not do it, then find a doctor that will, even if you have to drive 6 hours to the doctor. Pros and cons to a 30 core saturation biopsy in that a lot of indolent cancers can be found, cancers you will die with and not from, but at least you know it is there. I had 9 cores positive and the cancer, though low grade was widespread. I did not sweat the 1 percent positive samples, though not happy about it, but the two tumors had me real concerned. Two URO's thought I should do a treatment and one did not. I think I am on URO number 5 now ... I tend to irritate them I think. Nothing they hate worse is an informed patient. 🙂

When I went on AS I told my then URO that I considered AS as a deferred treatment plan and that I would be doing something in the next 18 months. I tell anyone that will listen, if they are on AS use that time to find a definitive or at least a palatable treatment and do the treatment in 18 months or at least have a treatment plan and watch, like you say, MRI every 6 to 9 months, PSA every 3 to 6 months, and a transperineal biopsy if any of the MRI begin to look more suspicious. Really, once the MRI begins to look really suspicious, the person could probably forgo the biopsy and just go into a treatment.

Every man needs to be proactive and to have a plan. Don't let the situation get worse by 'holding out', in many cases that is not going to end well.

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