Rising PSA after chemo, radiotherapy and hormone implant

Hello LHH11 

A warm welcome to the Macmillan Online Prostate Community, although I am so sorry to find you here. i am Brian one of the Community Champions here on the Prostate Community. 

I am just starting my 4th year on my personal prostate journey - like your dad I was diagnosed Gleason 9 and PSA of 182. I have had pelvic radiotherapy and completed 3 years HT/RT and like dad my PSA has started to rise after completing treatment. (you can read my journey by clicking on my name or avatar).

I can appreciate how you and dad must feel but there are "more tools in the toolbox". Once his bone scan results are known a further treatment plan will be put together. We have plenty of Community members on here who are still with us 8+ years after diagnosis and one fact I love is that 98% of men with a Prostate Cancer diagnosis die WITH it not OF it.

I am sure others will be along shortly - in the meanwhile, stick with us. If you need any extra support our support line is open to you and dad on 0808 808 00 00 (8am to 8pm 7 days a week) Feel free to ask any questions here - nothing is too trivial.

Best wishes - Brian. 

Hello LHH11 and welcome from a wife whose husband was diagnosed in July 2020 with advanced metastatic prostate cancer. He has also been on this rollercoaster and we are just going through another round of treatment as it was discovered that the cancer has progressed to the bones and multiple sites in lymph nodes, adrenal glands and upper abdomen. He has been on Prostap since initial diagnosis, Bicalutamide for 18 months plus whole pelvic radiotherapy, then Enzalutamide for 18 months. When this failed he was given 6 cycles of Docetaxel but after 5 months he needed SBRT to multiple mets. In January this year his PSA started going up again and a PSMA PET scan showed the bone progression so he has had radiotherapy to these. He has recently had a pulmonary embolism so is being stabilised before he starts low dose chemotherapy. He will also be given Relugolix (oral ADT) instead of Prostap. Docetaxel at a low dose will be tried first but if that doesn't work they will try a platinum based chemotherapy. Next will be immunotherapy. Lutetium 177 is another possibility. What I am trying to demonstrate is that there are plenty of tools in the toolbox and as long as we fight and hubby remains well enough then there are options. Quality of life is the balance we are looking at.

What will be suitable for your father will depend on what hormone therapy he has already had and where the problem is found which is causing the rise in PSA. If it is just a couple of sites (oligometastases) then radiotherapy can be successful. If it is multiple sites then a more systemic approach is needed.

Please ask any questions and we will try to help.

Hello! Your post really resonated with me although we are at the very start of this journey with my husband just about to start enzalutamide but having responded really well to the Prostap jab. He will have radiation therapy in a few months although we await results of a precautionary scan to check that it hasn't spread to any soft organs. It is in his spine and shoulder and he has responded well to HT so far. In fact he says he's feeling really well and not as tired as he was a few weeks ago so that's a win for today at least! The oncologist has mentioned (casually) that things should stay stable for some time which was music to our ears at the time but we are well aware that anything could change. What I'm trying to say is that your dad's story is exactly what we are expecting with peaks (it's as if nothing is wrong) and lows (a new challenge) but from my location of having read dozens of stories here, I am sure that we have to go through many cycles like this long before we get to the stage of saying OK enough! So from my non expert place of being a newbie I would say well done for not giving up and bring it on! You are at the start of a new phase of your journey and many (like us) are following in your wake. No advice here I'm afraid but solidarity to all adventuring in this perilous place of PC!

PS typing after my large glass of wine as it's Friday so apologies if my typing finger ran away with me......

Thank you so much for taking the time to reply and I’m so sorry you’re also on this journey. Wishing you all the best x

I couldn’t have put this better myself. Some days it’s hard to believe he’s even ‘poorly’, he’s full of energy and seems like his old self, then the next day can be completely different. Sending you and your husband lots of love and well wishes x

Thank you so much for taking the time to reply to me. As you say we are hopeful that we will get clarity and more options once the scan is complete. I guess it’s the fear of the unknown all over again!

Dad has already 

• Cyproterine acetate

• Zoladex, Bicalutamide and then  Docetaxel for chemo.

I’ll be sure to check back in once results are confirmed. Thanks again and sending you and your husband well wishes.