I am based in the UK, aged 54. In June 2020 I was diagnosed with Advanced Prostate Cancer, with a PSA of 1,311. My bone scan states, 'multifocal bone metastases in the pelvis'. My CT scan states 'destructive lesion seen in the pelvis involving the right pubic symphysis and the left acetcetabulum with a sclerotic lesion in the left ilium and also in the right ilium which is in keeping with bony metastasis small volume pelvic nodes. Further bony metastasis seen in the S1 vertebra'. I also had Deep Vein Thrombosis in my leg in May 2020, my second in the space of 4-months and it was this that led to the diagnosis.
I am currently on 3-month Lupron injections and 4 daily Enzalutamide tablets a day. My PSA has reduced to 0.14, as of this last week's blood tests, which is good news. I'm also prescribed Apixaban for the Deep Vein Thrombosis.
My question is, do I just stick with ADT and Enzalutamide and wait until I become castrate resistant or should I try and hit the PC harder. My Oncologist, who I next see in April has not offered or even mentioned any surgery such as a prostatectomy or radiation. Any recommendations gratefully received....
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lcfcpolo
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I am not a doctor and my opinions are probably worth just what you've paid for them but, well, here goes:
It looks to me like surgery and radiation are off the table. Your cancer is very widespread. To try to treat specific spots would be playing whack-a-mole, hitting your body all over the place with x-rays or scalpels and doing lots of injury for very little gain. So it would seem to me that systemic treatments are the best approach.
Your outstanding response to hormone therapy is a bright spot in your experience. Hopefully it will continue for a long time. During that time you can research other systemic treatments including docetaxel chemotherapy, Lu-177-PSMA radionuclide therapy, Ra-233 (Xofigo) therapy, and some others that are systemic treatments, treating cancer everywhere at once, and which are independent of castration resistance. Other advanced hormone therapies may also be work for some time even after the ADT and enzalutamide fail.
Hopefully, you've got a good oncologist working with you who keeps up with all of the newer therapies and can give you an intelligent plan.
In the meantime, I recommend that you check out Allen Edel's ("Tall_Allen") excellent prostate cancer blog at prostatecancer.news/ Use his list of "labels" on the right side of the screen, or his "search" box to help find relevant articles. He may also give you specific advice here on HealthUnlocked.
Twenty years ago you'd probably have been in worse shape at this point in your treatment than you are now. Your life expectancy after that diagnosis might have been around two years. But I think you'll do a lot better than that and there is some possibility of your living long enough to benefit from even newer treatments that aren't yet available.
I suggest that you do the following:
1. Learn a little about some of the other systemic treatments using the Internet (Allen's blog, and the U.S. National Cancer Institute and U.K. National Cancer Research Institute websites are good sources.)
2. Work on a list of questions to ask of the oncologist. He may say something like "let's wait and see", but (politely) try to nail him down to find out what he's waiting for, what he hopes to see, and what options does he expect to be relevant to your case. If he's totally evasive or, worse, seems unconcerned, and he doesn't seem trustworthy, look into what might be involved in trying to find a different oncologist.
3. Keep living your life and enjoying the things you enjoy. We all have a limited lifespan. Let's not squander that time, consumed with worry and dread. Whether we have two years or twenty or whatever in between, let's make them worth living.
Thank you Alan. This is really really helpful. I have only met in person my Oncologist once since diagnosis and that was in July due to Covid restrictions, so I am keen build a good and trusting personal relationship him. I will keep this all in mind when we do meet.
I don't know of any way of hitting it harder. You're doing great!
Debulking the prostate has been found to confer no benefit when there are many metastases. There is also no benefit to radiation of many metastases unless it is needed to relieve pain.
If your bone mineral density is low on a DEXA scan, you may want to add a bone strengthening agent.
Thank you Allen for your reply and thank you for all of the reports produced. I have now started to read them and they are extremely helpful, thank you so much for compiling them.
Now that you received excellent Pca advice from a couple of our resident experts, I will advise you regarding your love life. ... Since you are now divorced... get yourself a young lady for "company". Since you suffer from ED you should be able to come up with some other forms of "hanky panky" ways of having fun!!!
One other thing.... make sure you take a scribe with you to take notes when you visit your Medical Oncologist.
Note: make sure that young lady has a nice body and looks better than your ex.
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 03/02/2021 5:25 PM EST
Welcome aboard ! Good job finding this cite early on . I only wish that I had done so myself . I found HU after 3 yrs of strife with APC . We all must trust those that are helping us . It is great if you trust your oncologist? If no , find another? I was just 53 myself almost six years ago when I stopped peeing due to pc tumors blocking urethra and bladder . I too was beyond surgery . I did imrt and double adt . I went to a clear status and have stayed here for over five years next month . I did an orchiectomy in 2017 allowing me to drop Lupron shots . I’m still on a defunct test adt drug that’s stopping adrenal production of t so far . I had tubes out of my back and a foley for over a year . It was hell . I’m lucky to be alive . Save yourself any way that you want . Get on some simple bone nutrients and T_A ‘ suggestion for bone mds could help . Bone and heart issues come from Adt and no t .. the heart gets many of us if we live longer than expected . Good luck
If you have metastases, your prostate is of little concern. You have joined the stage 4 club. I would suggest doing your own research. In the UK you have Care Oncology Clinic.
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