This is so difficult Genevieve as we don't have the insight that your onco and nurse specialist have. However, it seems on the face of it that your OH is under a hospital which is quite old-fashioned in its approach and October is a long time to wait for something to change. I wonder whether you have the stomach to ask for a referral for second opinion at another hospital?
At many hospitals now, he could be being offered any or all of the following either now or in the future:
- a testosterone test to find out whether the HT is actually working correctly
- bicalutimide to give the decapeptyl a boost
- a change from decapeptyl to another hormone injection to see if the response is better
- depending on the result of the testosterone test, a change to enzalutimide or abiraterone or the addition of a steroid
- a discussion about a more precise form of scan such as Choline PET or similar
- at least a discussion about early chemo, even if he decided not to go ahead
- a check that it was a common form of prostate cancer that was diagnosed rather than one of the rare tricky ones
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
This is an update on your post here. https://community.prostatecanceruk.org/default.aspx?g=posts&m=183261#post183261
to which you have already had responses and it would have been easier if you had continued with that one than start afresh. However, it has now been mooted that nothing will be changed until the PSA reaches 20 rather than the 50 originally stated, which I think is a step in the right direction. Unfortunately, HT for a minority of men means they become refractory in months but for others this can be years. It is important that the Testosterone is at castrate level and that this is checked when blood is taken for PSA. Supplementing or replacing present HT for one that works in another way could be an option but there are other systemic treatments which an oncologist may offer based on your husband's histology and response over the timescale. Again some of these work better for some than for others.
Thank you LynEyre and Old Barry for your replies. I will discuss the possibility of asking for a second opinion with my husband, Lyn, but, regardless of his decision, the points you have made will give us good discussion points when we see the oncologist. As you said, Barry, a PSA level of 20 before further action is taken is better than the PSA level of 50, which the oncologist had given us. However, if his PSA level is still rising in October we will be pushing for action sooner rather than later.