Neuroendocrine prostate cancer

Good morning Seeker01 and welcome.

You are amongst a small, select group which NEPC so will not get many replies on this specific topic. My husband was diagnosed with it 4 years ago and has been on a rollercoaster of treatment since then but is still going strong despite the initial predictions. His is also mixed and it recently meant that he had to have treatment to the adrenal glands. Unfortunately there is no set treatment pathway but treatment is available and may be determined by the type of NEPC which you have. In my husband's case the cancer seems to be more receptive to radiotherapy but not so receptive to chemotherapy although he was only challenged with Docetaxel. If you have the small cell variant then a combination of Docetaxel and a platinum chemotherapy like Cisplatin is getting some good results. My husband was dreading chemotherapy but in reality it wasn't as bad as he had expected. In your case the first thing I would ask for is a PSMA PET CT scan if your current PSA is 0.2 (but preferably above 0.4). This would tell you 2 things - where the cancer is currently lurking as well as whether it is open to a treatment called Lutetium 177 which can specifically target the cancer cells with nuclear therapy. Lutetium 177 is not normally offered until after chemotherapy has been tried. My husband initially had EBRT to the whole of the prostate area 4 years ago which was, and remains, successful. At the time they were unable to treat an additional lesion behind the pancreas because of where it was. It had also spread to distant lymph nodes but not to the bones. He has been on Prostap since initial diagnosis and this has helped to shrink the additional lesion, as did Bicalutamide for 18 months and then Enzalutamide for 18 months. Last year he had 6 sessions of Docetaxel which killed off some of the cancer but not all, plus the continued Prostap use pushed further NEPC in the adrenal glands. April this year he had further targeted radiotherapy SBRT to all the areas identified by the PSMA PET CT scan including the adrenal glands and first indications are that it is working. The one reassurance we have is that the experts say that they still have more tools in the toolbox if necessary which include the Lutetium 177, Radium 223 if it spreads to the bones, PARP inhibitors, Olaparib, immunotherapy, additional chemotherapy, more SBRT, cryotherapy...... In preparation my husband's initial biopsy samples have been sent for genetic testing as this will give a better indication of what treatment might be most suitable in the future, so maybe this is another question to ask your experts. There are a plethora of ongoing trials which might also be a possibility for you as NEPC is an area of interest due to the prolonged use of ADT pushing the development of it.

Please come back with any questions but the one take out from my ramble is that a positive attitude helps as this prompts your own bodies healing mechanism to spring into action. We have learnt to live each day as it comes and enjoy life together whilst we can.

Good morning alwayshope

Thank you for your very thorough and most helpful response to my first posting to the PCa support group. You and your husband certainly have been down the road and made all the stops along the way. My situation is also complicated but in a different way (no surprise). My prostate was removed in 1995, but the surgeon did not get it all. In 2011, I was treated with external-beam radiation. PSA decreased, but not to zero, so they again missed something.

I embraced EBRT because the radiation oncologist said only the prostate bed would receive a strong dose. This was not true. During the last several sessions, for some reason, the techs sprayed my entire lower abdomen with radiation. This did not kill the cancer, but it did do substantial damage to my bladder, ureter, and bowel. In 2020, I developed hematuria -- blood in the urine -- and the blood clots which formed soon blocked my urethra, causing a sludge of urine, blood, and blood clots to back up into my kidney. (I have only one kidney. I gave my left one to our daughter many years ago. Her kidneys had been destroyed by lupus.) The blockage was life-threatening until the damaged ureter was supplemented with a nephrostomy tube. Two urologists have since identified the cause as "delayed onset, radiation-induced cystitis" meaning the cystitis (bladder damage) was caused by the EBRT in 2011. The damage become obvious only nine years later.

My two years of ADT did not kill the cancer, but they did promote the emergence of the NEPC. My testosterone is still below castration levels, but the tumor continues to grow. So I have achieved hormone-resistant prostate cancer. I don’t know what will come next, but I am working on it. Your experience will be very helpful as I review the options. I am giving serious consideration to having my bladder and my useless ureter removed surgically, which may seem radical but may be more productive in the long-term. I am also intrigued by Bipolar Androgen Therapy, a counter-intuitive methodology now under development at Johns Hopkins medical center. You might give it a glance.

Thanks again for your very useful response. My best wishes to you and your husband. You seem to make a formidable team.

Hello again.

You have certainly been through the wringer and it sounds as if the damage was done in the days when radiotherapy was no way near as accurate as it is now. My husband also has CKD thanks to the cancer and he had to have a pigtail inserted. He ended up losing partial functionality in one kidney so have been careful to protect what is left. I should think that you are equally careful but what a thing to do for your daughter -I am in awe.

I came across the Bipolar Androgen Therapy about 6 months ago and asked the medical oncologist if it was something which might help - he gave a wry smile and said that he had other tools at the moment. When I looked into it there was still a lot of development work going on into the dose and the side effects from it but the theory behind it makes sense in trying to turn the switch back on.

I think that what is next for you depends on where the cancer is lurking. The problem with ADT is that it doesn't kill the cancer, this is why we are looking at solutions to achieve this. We were very concerned about the effect of chemotherapy on the kidneys but the nephrologist assured us that this would not be a barrier, although they did increase the dosage of Epoetin alpha for the duration.

Keep in touch and we can bat ideas off each other.

I've found my original post on BAT if anyone is interested.

 Bipolar Androgen Therapy