We live in the Scottish Highlands.
This is B's wife. We are still in shock. B had some bladder problems towards the end of '07 but he didn't tell me. We went on a short holiday, and he later asked me to make an appt with the GP "to get my cholesterol checked again". During this appt a DRE and PSA test was done.
PSA came back at 33. I was very worried. Biopsy, MRI and bone scan quickly followed. We didn't have to wait as the medical team obviously realised there was a serious problem.
Saw the Consultant 10 days later. Advanced PC with mets on the right rib. We were due to go on a short holiday. Left the Consultants in a daze. Initial treatment - Casodex.
Since then, B has been for a Zoladex implant. We had two appointments with two National Health Society GP's and two mistakes made with prescriptions. This does not bode well.
We are in touch (have met) the local community nurse who has assured us she will help him (and me) in any way she can. The first thing she will have to do is help us to find a GP WHO WILL LISTEN!! They do not seem to listen and I feel like shouting that this is my husband's quality of life they are playing with!
I am shocked. I am angry. B is handling this extremely well. He is very positive despite the fact that he has already lost a mother, brother and sister to cancer. I don't know where he gets his strength from. There are no support groups in our part of the Highlands.
The Specialist Nurse at the hospital has been extremely helpful. Could not wish for better, but I am still in the dark as to whether we can expect any other treatment, ie radiation in the future.
Thank you for the site!
B and I went to see another local GP about ten days ago - we were not happy with mistakes and seeming lack of intestest with two others at the practice. I think we can trust this guy. He really seemed to listen, and we believe that he handles quite a few cancer patients.
He offered to take some blood while we were there (we had just gone to check him out really), and we got the results of that test last week. PSA down from 33 to 10.7. We were glad to hear that - it has only been a month on meds after all - and happy generally as we felt we had something to celebrate!
Next blood test to be done before the 2nd Zoladex implant in July, and every 3 months thereafter.
3 monthly Zoladex started end April '08 after 2 weeks on Casodex 50. Bone scan revealed mets to pelvis and rib.
July '08 - 0.08 (down from 33 to 10.7 then this)
Aug/Sept '08 - 0.09 October - 0.15
November '08 - 0.24
Dec '08 - 0.25
Jan '09 - 0.33
end Jan '09 - 0.46
Feb '09 - 0.42 - stopped Casodex, Uro didn't realise he was still on it.
March '09 - 0.56
April '09 - 0.78
May/June '09 - 0.70 - after 1st monthly Zoladex
30th Jul '09 - 0.80
3rd Sept '09 - 1.14
We will be seeing our regular Onco on 21st September, and will see what he has to say about the rising PSA.
Val mailed me and said:
My lovely Bernard died on April 14th.
Royal Marsden had just identified the particular mutation of his cancer. It was the PI3K mutation, but sadly his liver was too badly affected for him to get onto the new trial they had ready and waiting. In my own opinion, it was the loss of Zometa that made a huge difference. I could be quite wrong, but when we moved to Hampshire from Scotland, and to the Royal Marsden (thinking we were doing the right thing), they wouldn't give him Zometa. I fought for him to get it but they wouldn't budge. Co-incidence that he started going downhill from there 2 years ago.
He put up a damn good fight for 4 years but he had no resources left to fight with in the end. I think it was the liver mets that caused a drastic change in him, but he died of pneumonia. I didn't realise and that is painful for me. Others realised but didn't tell me. I didn't know he was near the end, or perhaps I was in denial, I don't know. It was friends who realised that he had pneumonia, and problems swallowing during that last week, so they knew that he didn't have long, but chose not to tell me. They were possibly trying to protect me from the truth but it was hard to come to terms with that.
In expressing my condolences to Val I said that I had always thought that I should keep some of my health related information from Anthea to shield her. Val's poignant words have made me re-think this decision.