The saddest of news…….

Dear everyone,

it is with the deepest sorrow that I have to tell you that my dear husband passed away last week. His was a very rare and aggressive pathology and I don’t want to cause concern among my dear friends here but I had to tell you. His mixed ductaladenocarcinoma was found to have quietly invaded his liver and pelvic floor 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 have all of this on email. 

I’m broken beyond repair but take it from me DAC has a tendency not to emit PSA as appears 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 at 71yrs at diagnosis. Please please please… be your own physician as much as you can and don’t believe a word of someone telling you DAC is less aggressive than research first showed. 
There is also a level of ageism going on here. If you are over 70 at stage 4 you are not offered chemotherapy. But surely at 71yrs he was borderline for his body being able to handle it. 

I am 60 and feel devastated at 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 and just over 70.  We went for private tests twice because we felt we were being ignored for colonoscopy as he seemed to have nerve pain in that area. He had a very large benign polyp biopsied so we thought it was that causing the pain.Mostly it was right abdominal pain radiating to shoulder latterly. Now we know these are signs of liver pain.

Everyone’s diagnosis is different and nobody responds to treatment in the same way but to be offered the usual first, second and third line would’ve been helpful. We were told that if things progressed he would be given other treatment but despite two hospital admissions in December and umpteen emails to his oncologist no other treatment was offered. They do know that DAC doesn’t always emit PSA so why they practically ignored us I don’t know. Awaiting liver biopsy results that I know will now be available so I’m going to ask for a copy of the report so I will update further soon. 

In the meantime I wish to thank my dear friends in this group who have supported me and been my tutors without exception in the time I’ve been a member. You’ve been wonderful and I shared everything with my husband and he benefitted greatly from the encouragement and positivity he received too. 

I’m sending you all so much love, blessings and heartfelt thanks. 

Louli xx