Ductal Adeno Carcinoma

Hi Louli and Paul,

I thought you may find this report AI created through Chat GTP4 interesting. I was researching my condition and asked for a medical treatment plan. It does not include meditating, diet or exercise as I have read that all of these factors can also help.

Hi Louli

Yes, I was saddened by your news, but I know this is nothing compared to what you are going through. 

i do appreciate you posting though. It’s all information that helps all of us. It’s not always  easy to know these things, but ultimately knowledge is power, and we all need every bit of that to improve our outcomes. 

Still thinking of you both

 Paul

Thanks Dutchie

This is really interesting. Probably not a lot of new news in there but definitely a useful summary - and good that you’ve followed the treatment options pretty closely. 

I think you and Louli are at opposite ends of the scale when it comes to helpful oncology support. Yours sounds very good, I think Louli has been let down badly. It feels like I’m somewhere in the middle. Lots of good words so far. I have my first oncology appointment later this month - so we’ll see. 

I’m definitely going to take this as a starting point though. 

Thanks again

 Paul

Hi again Dutchie

This is really interesting. It sounds very positive, and I’d like to read more about these therapies. It will be interesting to see what is available in the UK. I’ll do some investigation and let you know. 

It’sa great help to know there’s someone else out there with this, who is not just surviving but fighting against the odds. Keep it up!

 All the best

 Paul

Hi Dutchie 

How did it go with your Oncologist and the possibility of DNA testing? I have my first oncology appointment this evening and was going to ask about this. 

All the best

 Paul

Hi Paul,

I specifically asked my Oncologist (Professor) about Mixed Ductal Adenocarcinoma and DNA testing. His responses as I can recall it:

1. Mixed DAC in his opinion is not that rare nor is it more dangerous, he focuses on the Gleeson score and strategies for cure. He actually said this a few times.
2. He has thrown the book at me and is 70% confident that he has cured me, that is after me pushing him to put a % to it. He said that by the time my cancer comes back and if it eventually comes back at all my DNA may have changed. He will however discuss it with his colleagues that specialises in DNA mapping for me.
3. His final message was, enjoy your live, I will worry about your condition. Whilst could not say I am cured he did say that I have no signs of any cancer at this stage.

I hope this helps. I have decided to believe that I am cancer free and will remain so for many years to come.

Kind Regards

Dutchie 

Oops. I think as I was scrolling I must have hit the Flag to moderator button. Really sorry. 

Hi Dutchie

 That’s fantastic news. Really pleased to hear that. I’ve taken a turn in the other direction. At my oncology meeting yesterday, my PSA has doubled in less than 2 months. So it’s a PET scan next to see what’s happening then they’ll decide what action to take. 
i asked about DNA testing and he said he’d look into it, but now was not the time. There are more mainstream actions to take first. 

anyway, enjoy your life … it sounds like it will be a full and happy one

best

Paul

Hi Paul HappyPixel 

I am sorry to hear this Paul. If it is any consolation, it is similar to what happened to me. My PSA started climbing by month six. This then resulted in a PET scan, Hormonal Therapy and Radiation. It appears that my PSA is under control. I feel pretty good at the moment and sleeping so much better than when I was on HT.

I know, I am not out of the woods yet, but I refuse Not to live a normal life. To be honest, I do find myself often trying to understand Mixed DAC and what it means in terms of life expectancy. Not good as I have control over it. I decided to rather focus on what makes me happy. I try and occupy my mind with normal stuff. I am seriously considering retiring next Jan when I turn 60. The idea is to buy a motorhome in the UK and then hit the road around Europe for 6 to 12 months. Then after that do Canada, the US and the eventually Australia. So right now I am researching motorhomes and planning my retirement rather than reading clinical papers about PC. 

Keep the faith and know that your treatment will be over before you know it. We have keep our minds strong and believe we will be cured.

Cheers

Dutchie

Dear everyone,

it is with the deepest sorrow that I have to tell you that my dear husband passed away last week. I didn’t want to tell you but I had to tell you. His mixed ductaladenocarcinoma was found to have invaded his liver and his PSA was <0.1 at time of passing. 

I wasn’t happy since December with his level of pain and pushed his oncologist to investigate further.. he told me his prognosis was good and things were under control on Abiraterone. He gave him one blast of radiotherapy for the pain. 

I’m broken beyond repair but take it from me. DAC has a tendency not to emit PSA as in my husbands case. Do request PetCT which we were refused in January which is better than CT at picking up tiny hot spots. 

He wasn't offered chemotherapy or any other treatment ever despite asking since diagnosis at stage 4 18 months ago. He was a fit non drinking non smoker 72yr old. Please please please… be your own dr. And don’t believe a word of someone telling you DAC is less aggressive than expected. 

I am 60 and feel devastated ast the lack of cautionary investigations as time went on and his pain worsened. It was as if they had written him off because he was stage 4 at diagnosis.  We went private twice for colonoscopy as he seemed to have nerve pain in that area. He had a very large benign polyp removed so we thought it was that but Mostly it it was right abdominal pain radiating to shoulder latterly. Now we know these are signs of liver pain.

sending you much love,

Louli xx