Low PSA, MRI shows likely cancer

My final Gleason was 4+4. That was in 2008. I've had 2 other cancers--kidney and melanoma plus pre cancer (colon). But I am going strong. There's always hope, especially if cancer is discovered early. I credit the doctors at UCSF ....and my being meticulous about getting tested for the things they can test for--colonoscopies, psa/digital exams, annual dermatology exams, etc. (plus several more exams for females). I urge everyone get tested as recommended. Some tests are unpleasant, but not nearly as unpleasant as having cancer. And be your own advocate. As I mentioned, the Urologist who examined me after the prostate nodule was detected said I couldn't possibly have cancer with a PSA of 1 and didn't want to do a biopsy or other follow up. I really had to insist on a biopsy which probably saved my life.

Most urologist are prostate cancer surgeons. If you want to speak to somebody who is an expert with prostate cancer, you want to work with a a Genito Urinary (GU) oncologist,

When you have a Gleason nine, you want an expert Guiding your treatment. A GU oncologist is the best Doctor to get involved with. They specialize in prostate cancer and in treating it with many different techniques. Most centers of excellence have GU oncologists.

Last week I was in a meeting with someone who had a Gleason nine. He had his surgery 30 years ago. Don’t let anybody tell him how long he’s going to live. No one knows.

I had a PSA of 5.9 and the subsequent biopsy revealed a Gleason score of 8. I opted for a prostatectomy. The pathology report after surgery increased my Gleason score to 9. That was three years ago. Two years ago I had a recurrence and underwent hormone therapy and radiation. Since that time, my PSA has been undetectable. Hopefully this will be the same outcome for your husband.
The road ahead for you and your spouse will be full of anxiety and questions. Do all the research you can and pepper your medical team with your concerns. Your upcoming decisions are major and will have long-term implications.

My Gleason and my outcome differ from many on here but I'll say that you are going to be overwhelmed with information from all over the place. Whether it's from here or from your own research online or even talking with other doctors. I suggest you keep a running list of all your questions and concerns, for me I used Apple Notes to write everything down so when I met with a doctor I could run down my ever growing list of questions. This is always been how my mind works and it served me well, I got every question answered before I made my decision on treatment.

I just opened my MRI report yesterday and have to wait a week to see my Urologist. I’ll never do that again.

59 y/o, Annual PSA test for past 15 yrs ranged from 0.5 - 1.05.

2 legions (1.9 and 2.4 cm - one right and one left)
PI RADS 5
Both lesions noted as: "Extraprostatic extension into the neurovascular bundles (one is right side, the other is left).

Only “good” info …
Lymph nodes: No pathologically enlarged lymph nodes.

Vessels: Normal appearance of the visualized vasculature.

Abdominal wall: No acute abnormality.

Musculoskeletal: No enhancing osseous lesions.

No symptoms of anything - healthy and fit. I NEVER need to urinate at night; sleep 7 hrs without needing to get up. Work out daily and eat well.

Very concerned about Neuroendocrine prostate cancer , small cell carcinoma.

Again, I must stop Googling until I meet with my Urologist in one week (a very long one week).

Biggest “gut punch” I’ve ever felt - Anxious and afraid

I appreciate all I’ve read here - thank you all!

I had a similar experience when I got my biopsy results before my doctor talked to me, by a week. I freaked out when I saw all the cancer in there and got really pissed at being sent that before my doctor could review it with me.

One thing to remember is that MRI's are imperfect and not to get too upset. My MRI showed I had a bulge, which I did, and that I would lose half my nerve bundles as a result, which I didn't.

Three things that give you as complete of a picture as you can get before treatment: Biopsy, MRI, Decipher. You could add PET scan to that but most insurance won't cover that until after treatment (my insurance did cover it, which was unusual, and then I didn't get it), but this isn't going to reveal anything about your prostate cancer so much as if it has spread.

I'm 54, nearly 5 weeks out from prostatectomy where my actual results were better than the MRI implied they would be. Take a deep breath and know that lots of folks here can help.

Early on in this journey with my spouse. A few things I have learned is looking for similar cases on the web makes my anxiety sky rocket. I had to stop. The wait for next steps is stressful, so much so that I had to start taking Xanax. Do what you need to do to maintain some level of sanity. I am learning I must take this journey one day at a time. Letting my mind think too far ahead takes my mind to dark what if scenarios. My husband had his biopsy and next step is Petscan and then consult with urologist that does nothing but prostrate cancer and then meeting with oncologist. Doctor already put my spouse on hormone meds, so far no bad side effects. At this point we have a positive attitude. Even with spread to lymph nodes it is treatable. I am praying for only localized spread. Glad to hear you do not have signs of lymph node spread. Because of lymph node spread they are telling my husband it’s treatable but not curable. He’s only 62 and will fight this with everything he has. He also is in good shape. I am angry at his PCP for not doing a digital exam over the past 10+ years. We have always went for annual physicals. Doc must of assumed since PSA was normal that digital was not needed. Not sure why docs started making that assumption.

Ziggy, my doctor did digital exams yearly, my lesions could not be felt - this was a month before lesions were found. I also had a very small prostate as a result of being on finasteride for so many years.

I think some (maybe many) men avoid the doctor when they know they a are due for a digital exam, nobody wants the finger, and perhaps with frequent PSA tests they don't feel the need to do it both because it may not be as accurate (as in with me) or to not discourage men from visiting. I don't know the reason behind it.

What is kind of funny, in retrospect, is that I also didn't want the digital exam ever but now after having gone through this process I've had more people in there and around that entire southern hemisphere area that I should start selling tickets and it just doesn't even phase me anymore.

Gut Punch is the most accurate description there is; the only thing worse was going to my father’s wake and seeing his full name on a placard outside “Chapel A”. His full name and mine are the same; I felt like Scrooge with the third spirit of things yet to be!!
Going online is emotional suicide ; we all do it and we can’t stop but your anxiety is totally normal. In fact, your MRI findings are not that bad compared to some of the men on this forum -even me, and I’m still here 6 years after that jolting biopsy read which showed a gland full of cancer, perineural invasion in every single sample(laterally) and Gleason score of 4+3 unfavorable.
As has been pointed out by @survivor, MRI’s are hints and suggestions that something needs a closer look, which your biopsy will do. No matter what is found, you are gonna be OK, you are NOT gonna die.
You might need treatment but rest assured: the treatment is a piece of cake compared to the anxiety of not knowing. I practically ran into the OR for surgery and swooned with joy 5 yrs later when I was told I needed salvage radiation and ADT. Totally f***ed up, but the 5 yrs of PSA’s, the anxiety, the fear of metastasis, the constant Googling of what everything might mean….THAT was true hell…
Just take it easy and do your homework; knowledge is key and this forum is a good place to ask questions; we’ve all been there. Best,
Phil

Perhaps the next step is PET scan. My PSA was increasing about one point a year..now at 5.67.
Had MRI and rated 5 (the same as your result). I then had a PET scan and the summation was no absolute prostate cancer. The PET scan shows calcifications that is normal and can under the MRI appear as "cancer". Both the MRI and PET scan are "read" so the result is essentially a subjective opinion. Often best to get a second opinion on issues critical to overall health. Research "calcifications within the prostate". for further information. Use Google AI by asking any question about anything..and normally the response is accurate and timely. In my case, I have scheduled a PSA test every four months to measure the velocity of any changes. Remember, the worst case for men is when the cancer has metastasized outside the prostate gland. RH/Florida