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Need some support

Posted 27 December 2017 17:20:03(UTC)
Hi everyone. So today has felt pretty tough. Dad’s PSA has gone up again from 8 to 10 in less than two weeks. He was T3bN0M0 PSA 19 when diagnosed in February. I feel so worried. Awaiting a CT scan and he’s been put on Casodex. After RT the PSA went down to 1.6. Mum has found today really tough. The waiting is agonising. We are looking for a 4-5 week wait for the CT scan. Our lovely designated nurse (who called) tried to be reassuring and said hopefully the Casodex will give it an extra hit. Plus she reminded us that there are other treatment options. I feel so anxious in myself and am trying to put on a brave face but I’m so worried about him. My son (who’s 12) knows I’m struggling and I want to be strong for him. This new rise in PSA feels like such a blow but I don’t really know what to think. Every man seems so different. Please can someone message me xxx
Posted 27 December 2017 18:24:39(UTC)
Hi Pen
Sorry to hear your dad has to wait so long for a scan. My husband is 66 yes old. 4 years ago he was diagnosed with pc, Gleason 9 PSA 150 he was told by urologist it was too advanced for radiotherapy and incurable and beyond surgery he was put on 3 monthly prostap injections and the urologist led us to believe he may have six months of life.

4 years on it has now spread to the bone and he is on enzalutomide, his PSA has gone up and down over the years and I know how this feels to be waiting for blood test results and the hospital visits which for us are now 4 weekly are stressful but I have to say we have managed to have four years of wonderful holidays, great times with our grand children which we thought were not going to happen.

Hot flushes, fatigue and emotional moments, along with the obvious end to the physical side of our relationship have all been hard to cope with but with lots of love and support it can be done.

I come on here now and again for support myself and there are men who have lived with this for ten years or more, try and stay positive. We try and focus on the many things we can do rather than those which we can’t.

My husband has had a designated oncologist from the very beginning and she is wonderful, we stopped seeing the urologist 3 years ago as he interfered with the treatments our oncologist was giving out. She has been so positive from the word go and we have our own specialist nurse too.

Hope you can soon get some peace of mind, I’ve learned from this site that PSA fluctuations don’t always spell very bad news if that makes sense. We are waiting at moment ourselves on a possible scan as my husband has seen a rise in PSA from 7 to 13 in 8 weeks so I know how it feels with the worry.

Best wishes to you .
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Posted 27 December 2017 19:07:09(UTC)
Thank you Pretty Lady for your kind words and support. I hope one day I can offer the same support to others. Thank you for sharing your story and lifting my spirits a little. I can’t tell you how much your message means to me right now xxx
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Posted 27 December 2017 19:09:45(UTC)
Pretty Lady sorry I meant to add that I am thinking of you and your husband and hope you can get that pesky PSA down again. Sending hugs and positive vibes xxx
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Posted 27 December 2017 19:53:38(UTC)

The hormone that he is on stops almost all testosterone from being produced in his body. The casodex disguises whatever testosterone is still hanging around to trick the cancer into thinking there is none at all. That should work for a while (for some men, weeks while others find it works for months if not years). Once it stops working, dad would be described as 'hormone resistant' or castrate resistant at which point new treatments such as abiraterone or enzalutimide can be introduced, or he might be a suitable candidate for chemotherapy or other options such as radium 223 - it depends a bit on what the scans show in terms of where the spread is.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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