My Prostate Cancer Journey so far…

Hello P Bach and welcome. My husband was diagnosed in July 2020 with Gleason 9 (4+5) but with a lower PSA than you and with lymph node spread. He has an aggressive variant. He was put onto Bicalutamide and Prostap, plus he had radiotherapy to the whole of the pelvic area. This treatment reduced his PSA to a low level but was never negligible so he remained on the Prostap and Bicalutamide until the PSA started to rise after 18 months. He was then taken off Bicalutamide and put onto Xtandi which rapidly reduced the PSA but it didn't reduce it to negligible. A year later the PSA started to rise again and a PSMA PET scan showed further lymph node spread 3 years after initial diagnosis so Xtandi was stopped and he had 6 cycles of Docetaxel chemotherapy. 9 months later he had to have SBRT to multiple lymph nodes and the adrenal glands. Last month the PSA started to rise again and bone mets plus other areas of metastases were found so he has just had more radiotherapy, this time to the bone mets and we are waiting to see when either more chemotherapy or Lutetium 177 (a radionuclide therapy linked to PSA) are to be started. What I am trying to demonstrate is that there are a range of treatments available even for a very aggressive form of prostate cancer.

To answer your question about how long the Xtandi is effective - this can vary from not at all to many years. You have the advantage over my husband that your PSA reduced to negligible levels after the initial radical treatment which allowed you to come off the Prostap but then restarted with the Xtandi and Prostap which gives better results than if you had not had a break from Prostap. As far as I can read, the dosage of Xtandi can have an impact on PSA so, if you can cope with the side effects, I think it should bring the PSA down because the increases you have seen are very small so far but none of us on the forum are medically trained so this is only my view. Unfortunately the cancer will eventually find a way round the hormone therapy if you are on it long term. How the recurrence or progression is treated will depend on the number of metastases found and their location. We have opted for treatments which are designed to kill the cancer such as chemotherapy and radiotherapy but still have radionuclide therapies up our sleeve. There is a treatment for multiple bone mets called Radium 223 but radiotherapy has proved to be effective when only 2 or 3 are present. The hormone therapies weaken the cancer and put it into hibernation but their effectiveness will reduce after a time. 

We all fear a rise in PSA but with the advances in treatment over recent years this allows men to live a lot longer - as our oncologists say, they have plenty of tools in the toolbox.

Thank you Alwayshope for sharing your experience. This is my first time reaching out to people in the same boat as me and there does feel like there is strength in numbers! I do hope that your husband continues to do well on his and your journey. As my urologist said “if it comes back, we’ll throw something else at it “!