My husband was diagnosed in Feb T3n1Mx G8 pPSA 67. The N1 are local sidewall lymph nodes. The Mx is a suspicious lesion in his R neck of femur ( also the site of some osteo arthritis so hoping this is cause of uptake). However we were then told he had been re staged as M1b, repeatedly shown this on med notes on screen in appointments, but every after visit summary says Mx.
Med oncologist has put him on enzalutamide and said he is incurable even if bony lesion is not cancer as local lymph nodes on both sides are affected. She gave him 5-7 years life expectancy, she seemed to think this was a great outlook.
We have seen two clinical oncologists, one privately, and one in the same corridor as the medical oncologist ( who runs the department) both say if no bony lesion then he is curable. The private clin onc also thought even if single met, then 5-7 years was 'very pessimistic'.
Apparently the test is to rescan after 3 months on HT, if the lesion in hip has decreased at the same rate as PCa, then it is a met, if it is still the same then it isn't, if it has disappeared, nobody is clear.
The Med oncologist has now pushed back, the second scan, she is now saying 6 months on HT required, although original letter says 3 months, and also pushed our appointment with the clinical oncologist.
To add to the complication he has been diagnosed with severe primary hyperparathyroidism, endocrinology badly want to put him on vit D, but have warned us this will mess up the PSMA bony lesion result, so if we don't do it now we will never know.
We suspect that Med onc has deliberately over staged for elligability to enzalutamide, but this leaves us in an awful position not knowing. Looking for advice and to know if others are in the same boat?