Ductal Adeno Carcinoma

Hi Louli 

Your post was not at all offensive. DAC appears to be different and you have made us aware of this, by sharing your husband’s experience it could potentially save lives.

All of the best, you are in our thoughts.

Dutchie

Hi again Dutchie

Thanks for your note. It feels like we are in similar positions, but I’m several months behind you. 
Your message lifted my spirits, but then I read the one from Louli and they fell again. I’d only found 2 other people on here with DAC, and now, sadly, we’ve lost one of them. 

Nevertheless, it’s strange … I’ve also been thinking of getting a campervan and touring round the UK. My wife is just about to stop work so we can spend some time together. She’s intrigued by the idea but I don’t think she’s convinced just yet. 

If you do make it to the UK, we should meet up - it feels like we have a few things in common (I’m also determined to enjoy whatever life I have left). 

Just a thought … if you’re going to your Europe, it might be better to get a left-hand drive van over there and possibly rent a RHD one here. 

all the best 

Paul

Hi Paul, 

I must admit, it has also played on my mind. We are fortunate that we are at Stage 3. We have a very good chance of being cured and if not I am going to make the most the really good years ahead.

My wife is pushing for the trip, which is great. I am talking myself into retirement. I will most certainly let you know when we head over. 

All of the best

Dutchie

 HappyPixel 

Let me know your PET scan goes - when is it planned for?

Hii

0.5
2022. 0.72
January 2023. Psa 3.8
Retest 3.2
March 2023. Dropped back to 0.75
A family doctor sent a urine culture, a bacterium was discovered and was treated with antibiotics
A urologist for an MRI and there was a suspicious finding of 15 mm on the right side of Freuds 4 without penetration and without further involvement, I was referred to perform a fusion biopsy, in revision. of mri in Assuta another suspicious focus was found on the left side 5 mm from Prides 3
Rectal examination before the prostate biopsy +1
right lobe prominent, slightly solid, gurgled on the left, 3/23/23 rectal fusion biopsy
Pathology: 2 out of 18 cylinders on the left side, adenocarcinoma, volume in cylinders 40/60 percent
Gleason 3+3. (Right side what was demonstrated in mri 15 from Fridays 4. It came out clean)
Genomic test oncotest gps came out 23. In the low risk area, but I should note that the medium range starts at 25 so in my opinion it is closer to medium, in consultation with a private oncologist I was advised to do pet psma. F18. At the health fund they did not confirm, they said that there is no indication and even so, the chances are that it will not show anything because of a low psa
I did the test and indeed they didn't see anything including in the prostate, they saw an absorption in one of the ribs and wrote that it was probably due to a contusion. The truth is that I don't remember being injured. You can say that I went through all of this by chance due to that single psa jump
Currently about two months after the psa 1 biopsy
I saw an oncologist and a urologist at a public hospital and they recommended active surveillance
In my opinion, I think I am in a more serious condition also because of the low psa. Maybe it's a subspecies that doesn't produce psa and also all kinds of bymptoms that I feel like a constant burning at the tip of the penis and not just that he urinates a little hesitantly in the urine. Pain in the area of ​​the right clavicle, right leg, between the ankle and the knee, and a longer pain in the left lower body
In light of all this and above all. 40/60 percent in two cores
Oncotest is close to the beginning of the medium
Maybe the lesion on the right was phosphatized in the biopsy
and the physical sensations including a complete lack of appetite
But I try to eat even if I force myself, maybe I ran to many doctors and I was just fooling around, they all told me low risk
But on the other hand, they didn't give me much to express either
Please doctor put things in order for me and what I should do to know my real situation
Note the mri was Tesla 1.5 and the decoders did not recognize the lesion on the left

At first I was looking for answers as to how prostate cancer can be with a low psa, then I found out that it is possible that there are the difficult and rare types. I still don't know what to do. All the consultants I've been to say that I'm at low risk. I'll mention again that I discovered the cancer by accident. That's why the Gleason is low. I'm afraid that the cancer will develop. Fast and the psa will stay low, please any advice is welcome

Hi Avi383

That’s a very detailed and quite technical summary. Tbh some of it is over my head, so I’ll just comment as one who has Ductal Adeno Carcinoma (DAC - one of the rare and aggressive types of Prostate Cancer). 

DAC does not present in PSA (my max PSA was 2.0 when I had my radical prostatectomy). So just looking at PSA doesn’t help … But the other tests, digital exam, MRI, Biopsy, Bone Scan, PET scan etc. seem to give the medics just enough information to decide on treatment. 

It sounds like you’ve seen so many people, with different views, I’m not sure you’re ever going to believe anyone now - which is not a good place to be. 
I’ve also suffered from the view that “it’s PC, and your PSA is low, so all we need to do is active monitoring”. I guess if it were me, I’d decided which consultant / GP I had most confidence in and then go and see them with your summary (above) and ask them the questions you need to, to satisfy yourself one way or another. 

Good luck

Hi Avi383 

Like HappyPixel, I also have Mixed DAC, with multiple other risk factors to add. From experience, at initial diagnosis I was like a "Dear" in headlights. No idea what was going on, this led me to Mr Google. Finding myself looking at the worse scenarios thinking my life was potentially over. Hearing back from other men with PC in these forums has made me realise that I do not need to panic.

After a Radical Robotic Prostatectomy, Hormonal Therapy and Salvage Radiation all in a space of 24 months, I am starting to feel myself again. Sure, I am not 100% were I was prior to all this but I am in a good place and enjoying Life. I have come to appreciate the small things in life and believe I have a long and healthy one ahead of me. 

Trust your gut, follow your Dr's advice. If you are not satisfied with it, find another as there may be something else that is making your feel all the pain. Try and request a PET Scan, not sure if you had this. I had no pain at any stage from the cancer, even though at Gleeson 8 Stage 3a. 

All of the Best

Munster

At the moment I am not diagnosed with DAC, I am only evaluating because of a very low psa, no doctor at the moment is willing to examine this possibility, everyone says that I am at low risk

My husband has Gleason 9 and ductal adenocarcinoma.

Had prostatectomy in July 2022 , no spread and clear margins. Unfortunately at each 3 months PSA check it has risen, so now almost 2.0 and in Feb will have a pet scan with probable radiotherapy to follow.

we’re in Australia.