Ductal Adeno Carcinoma

Hi,

So sorry to hear of this.  I am pretty sure there was one person on this site a few years ago who reported having this.  It may be worth your while doing a search on here and finding their posts.  All the best to you.

I think Ido  knows about rare forms of PC, hopefully when he's finished his Frosties he may well post.

Thanks. I’ll do that. 

Hi Happy Pixel,

My husband has ductaladenocarcinoma of the prostate. You are the first person to post here since I’ve been on here who has it. I’m delighted to hear from you despite the circumstances.

Firstly, don’t look at statistics just forget that. Not because it’s bad but because it’s at least 5 years out of date and they have to be 5 years old to get them! We’ve moved on leaps and bounds in recent years in terms of treatment. My hubby is 72 but was stage 4 at diagnosis coming up for 2 years ago and his PSA was 44 but is now below 0.1. He has some bone mets and two tiny lung spots but everything has been stable for most of that time and we have our ups and downs in terms of pain but his treatment is Abiraterone, Prostap injection only no surgery and it has saved his life and prolonged it. So far so good. 

The adenocarcinoma gives off PSA but the Ductal part doesn’t as far as I’m aware. So this is where your scans and regular symptom checking comes into play.  It’s so rare there is little about it However you have been treated early by the sounds of f it at an early stage and so I would think you have many years to come. 

can you tell me your Gleason score, stage etc??

much love and kind regards,

Louli

Hi Louli 

Thank you so much for getting in touch. It’s good to know there are others out there - even if we all wish the circumstances were different, as you say. 

That’s good advice about the statistics. I’ll take that!

Here are my stats:

• I’m 64 … was diagnosed at the end of last year and had my prostatectomy on 7-Feb-2023. 
• At diagnosis my PSA was 2. After my first blood test since the op it’s 0.11. 
• My MRI PiRADs score was 5. 
• Gleason was 4+4 but this was updated to 5+4 after the op. 
• I was at stage T3a. 

Hope this helps. 

Your hubby sounds like he’s dealing with it all ok, given the ups and downs. Has he had any additional tests (other than the regular PSA testing) to see what’s happening?

Many thanks … and again, it was so good to hear from you  

Paul

Hi Paul,

thank you so much for your sharing.. you’ve really been through it. I’m very interested in what you’re saying about ductaladenocarcinoma and how low your PSA was at diagnosis. I mean 2 is pretty low but the consequences of what might be going on in the background can be devastating. it just goes to show that all symptoms no matter how minimal should be reported and not ignored. My hubby wasn’t taken seriously for at least 5 years prior to diagnosis. Anyway we can’t change it so onwards we go. 
Yes he gets CT and bone scans but these will be annually I believe but we did go privately for a sigmoidoscopy for severe rectal/anal pain. Despite bleeding and two hospital admissions the nhs practically ignored his symptoms for 4 months. Anyway a private consultant Took biopsies from a large fleshy polyp and we are concerned about results. I will keep you posted. 

My advice would be to be your own dr and be vigilant and if need be go private if you can to get investigations done promptly. 

Best from Louli

Thanks for sharing that Louli. Yes, I agree … don’t ignore anything in this game. My wife is about to give up work so we can enjoy life together for a while. That means we will lose our private health insurance … but I agree, if needs must, we’ll go private and pay if it means getting things done quickly. 

it sounds like you’ve had to cope with a lot over the years. Not easy for the carer or the patient. 

Hi Grundo, Frosties aside! I haven't been on the frum as much as I keep getting logged off from the site when I open a thread on my iPad. Anyone else having this issue? It's a new one on me. I'm on my laptop just now which seems ok. 

I had intraductal prostate cancer in addition to the adenocarcinoma and the statistics are horrific. Based on my recurrence stats and the intraductal involvement the European Urology site said I had a 15% chance of surviving 10 years. I hope it's wrong, I will be 8 years post surgery July 23rd 2023. All the best.

I use phone or laptop Ido, no tablet so can't help u I'm afraid. 

 Its good that you're doing ok, think I remember seeing a previous post where your  PSA was very low, hope that continues for you.

best wishes

Steve

PS I don't think u would eat Frosties laced with all that sugar, I used to eat Weetabix then I read that Oats are good for you, perhaps better than wheat so now have Weetabix Oatibix, not bad at all