Prostate Cancer with Crohn's Disease

Hey thanks for reply Ade. 

Having anything outside a plain and simple cancer seems to throw things sideways. Additional disease ailments or conditions don't fit the standard treatment "template". Treatment from a small low budget trust leads me to think of the post code lottery of treatment.

I've not been staged yet. I had an MpMRI in April when PSA was 0.23 and they said the imaging from that showed no visible signs of disease. At my last phone appointment September 01 with Oncologist he said he'd order an MRI and CT scans. I've heard nothing since, PSA was then 1.3 and doubling every 40 days he called this a "mild" increase, mentioned the scans and reviewing them "towards the end of the year" I did ask about PSMA pet which resulted in him ordering a normal MRI an CT. I feel stuck with a very small low budget NHS Trust, it's very difficult to even make phone contact with them, and when I have spoken the CNS are often blunt rude and not very helpful.

It's very stressful, a "normal" post op recurrence might get RT at below PSA of 0.2 I can't have that I'm seeing my numbers climb and don't even have a treatment plan in place.  

I hope you had a better experience

Hello Paul thanks for your reply, sorry to hear you have a similar situation. I know the anxiety you must have waiting for the next PSA reading. I have read a bit on how gleason score post op has an impact on how aggressive a recurrence may be. Mine was 3+4=7 I have seen that a 4+3=7 leads to a more aggressive faster recurrence, although mine now being at a 40 day doubling Maybe the 7 is a truer tell here. I have used PALS when I've received a consultation follow up letter which in truth was totally inaccurate stating several reported symptoms which I've never even suffered let alone mention during the consultation. The result of my complaint was a phone call from a CNS asking why I'd complained to PALS and stating that they would correct their error. This has never been corrected. To get past the aggressive and rude screening from My Urology Receptionist on the phone to even speak to a CNS or get a call back from one is a stress on it's own but to then face a similar attitude from a CNS when I do get to speak to one is enough for me.

As I've said with a PSA 1.3 and doubling 40 days (quite probably over 2 by now) and a Vague follow up from Oncology stating my PSA rise and doubling as "mild" and ordering an MRI and CT for review "towards the end of the year" I've concluded that another PALS complaint which appears to get handled "in house" is the same as trying to break a closed shop.

Although I was referred to Oncology, Urology still manage my case. I did write to my Urology Surgeon last week in the hope that he might raise my case at their next MDT but to date I've had no response. I've spoken to a Macmillan nurse regarding whether a PSMA pet would be more appropriate now rather than wait for MRI and CT, she advised to chase for appointments for what they've ordered. (my last MRI wait there was 6 weeks and I don't even have an appointment yet). I have wondered if, with the cost of a PSMA pet scan, they run out the clock so to speak knowing a higher PSA gives higher probability of actually finding the cancer.

I hope your UC is holding up OK. I was on adalimumab for My crohns which kept it in remission for almost 9 years, but I had to come off it for My surgery. To date bar one month long flare last summer Mine is behaving well considering the stress levels.