Newly diagnosed with prostate cancer and still gathering information

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.

Bruce - yes , I have been there . Its a huge shock when you hear these diagnosis words ! How old are you ? Your PSA and Gleason are not "off the scale" and actually your PSA is quite low to many pre treatment . Get that PSMA and let us know what it says . You should be able to get a good bounce off of a 4.1 PSA . I had the operation about 4 years ago in April 2021 . Healing takes some time 3-4 months , but after that I was fine . No incontinance , no pain, ED was fine after the first 6 months . I was 58 when I had it , now 62 . I would do it the same way again. God Bless and let us know how the Pet scan works . You may want to ask for a MRI WITH contrast too ! Very effective at time looking at soft tissues in prostate and seminal vesicles . James on Vancouver Island .

I'm also sorry to hear of your diagnosis. Back in October I was completely shocked when I was diagnosed with pc at 54 years old and no family history. My PSA had been gradually increasing on my annual physical exams. It became a concern to my GP when it went from a 3.09 to 3.7 in 6 months, then to 6.7, having gone from 3.9 to 6.7 in 6 months. I was sent to a Urologist who had me do a biopsy. The results showed 8 of 12 cores positive for pc. Gleason 4+3 on five of the eight and 3+3 on the other three cores. i also had an MRI and full-body scan which showed it was contained to the prostate. I met with several Urologists and Radiologists who all recommended radical prostatectomy due to my age. None had recommended active surveillance or radiation treatment. I had the DaVinci robotic assisted RP about 4 1/2 weeks ago, so I am still recovering. So far, so good. No incontinence issues...yet. I guess I can say may post-operative effects have been mild to mid. Still painful, more than I expected or was told to expect, but I treat it with Motrin or Tylenol which helps. I returned to work last week, but my job is mostly sedentary so it hasn't been too bad. For me, the worst part was having the catheter for 8 days, following surgery. Once it was removed, it hasn't been a cake-walk, but slowly getting better. Although I haven't experienced incontinence, from time to time I have a little leakage when going from sitting to standing or lifting anything over 15 lbs. I know its different for everyone, but this has been my experience.

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 ...

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.

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.

The results of your biopsy do not confirm what your doctor wants to do. You were working with a urologist it sounds like. Urologist do surgery, That is their answer to prostate cancer.

Someone with a Gleason six, and only two cores out of 10, would normally be put on active surveillance, not surgery. Yes, the decipher score shows you have a medium chance of something happening, But you could be on active surveillance for years before something actually happens. There’s been a lot of meetings lately where doctors discuss being over treated when someone has a Gleason six.

You should get a second opinion from a center of excellence or a Genito urinary oncologist, The ones that specialize in prostate cancer. Yes, at age 56 surgery may be a better option, but active surveillance may be an even better option for you.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.

Hello! I have a psa of 5.7, I had the biopsy test and 2 out of 10 cores came back positive. The 1st visit to discuss the results were let’s just monitor. He said men live a long time with this type of score. My Gleason 3+3=6 and the Dr sent the results in for a decipher test. The decipher came back at 51% and he stated that it would be best to remove the gland. At my age 56, he said it would be better to remove. He said that treatment can work and my take care of the cancer but if it comes back in years to come then surgery may not be an option. I’m stuck between a rock and a hard to make this decision. My next appointment is 5/8 and I have questions for my Dr.

Would you mind telling me your Gleason score ? Thanks in advance .