Hi there.
I’m new to this forum but have been reading lots of the personal stories over the last few months and I wanted to reply to Gemma’s posts about her worry and confusion over her partner’s diagnosis.
My OH was diagnosed as T4 N0 M0 Gleason7 (3+4) in July 2018. His PSA count at the start was 180. Because of the size and position of the tumour, surgery was not a practical option. Recommended treatment was HT followed by RT and/or Chemo. He’s now completed 37 days of RT and is waiting for his follow up scans to see how well it’s worked. His PSA is down to 0.1.
As I understand it, the word ‘cure’ has not been used, but the RT has been given with ‘radical intent’ which we understand means that they will try to eradicate the tumour as far as possible. In my view, that’s as good as it could be. He will continue with the HT for a few years and then, if all is still well, he may not need further treatment. As far as I’m aware, no one has suggested that the HT may only be effective for a limited period of time, but I haven’t been privy to all the discussions with the medics, so I might be wrong about that. I think that chemo will be held in reserve to use either if the RT hasn’t worked as well as hoped, or if the PCa comes back in the future.
My partner is a very fit 70 year old with no chronic medical conditions other than a bit of arthritis. He’s not overweight, exercises a lot and has a good diet. He’s coped very well with all the treatment so far; he’s been fatigued and had a bit of bowel and bladder irritation, but nothing that’s stopped him carrying on with his very active life. Only moan was that he couldn’t indulge in as much red wine as he would have liked because he was still having RT over the Christmas period!
I’m writing this because, like Gemma, I was very worried in the initial stages when the tests were being carried out and it felt as if the diagnosis was a big jigsaw puzzle that was being delivered one piece at a time and nothing fit together! It didn’t help that some of the letters were written by medics for whom English is not their first language. While factually correct, the grammar and punctuation was often poor and it mislead me into thinking the diagnosis was much worse than it turned out to be. I had to spend some time googling medical terminology to figure out what was what! The other concern was that the oncology team didn’t have a correct chronology of events, which delayed treatment. Fortunately, we did, so we were able to put them right. Annoying at the time, but with hindsight, it probably didn’t adversely affect anything.
I know Gemma was concerned that she and her partner were originally directed to a specialist nurse instead of an oncologist. I actually think that’s a good thing- these people are incredibly skilled and will, in many cases, know as much as the doctors. My OH has had excellent treatment from his specialist nurse team who have provided practical help and reassurance in ways the doctors either don’t have the time or expertise to do.
Once we were on the’treatment treadmill’, the worries we had receded a little. He managed to arrange his RT early in the mornings so it wouldn’t affect his entire day. Not easy getting up at 5.30 on dark winter mornings, but psychologically helpful in that the treatment doesn’t become the entire focus of your day. We’ve had support from friends who are going, or have gone through the same thing and have come out the other side with a renewed zest and appreciation for life. We hope we’ll also have many healthy years ahead of us.
I’m sorry that your OH also has kidney/bladder problems to contend with, Gemma: he could surely have done without that, as well as his reaction to the biopsy. But like Andy and John on this forum, I’m sure once you have a full, clear picture of will happen, it’ll be much easier to deal with. As others have said in different threads, it becomes the new normal, a challenge to be met! Good luck for the future.
S L