Small cell neuroendocrine metastatic prostate cancer

1. Hi Richy0766 

A warm welcome to the family. We were in a similar situation to you 4 years ago with a diagnosis of small cell neuroendocrine prostate cancer but with spread to distant lymph nodes and an odd area behind the pancreas, although no bone mets. Monitoring with regular scans is the way we have kept an eye on changes and we take notice of any small increase in PSA which triggers a PSMA PET CT scan. We face more challenges compared to others with advanced prostate cancer in that hormone therapy may not be as effective against the cancer - in hubbys case it was in months rather than years. Chemotherapy with Docetaxel control was also in terms of months. The most effective treatment has been EBRT to the prostate and pelvic lymph nodes which hubby had almost 4 years ago. He has recently had SBRT to the distant mets and the first indication is that this is working - only time will tell. Our oncologists is reassuring that he has other tools in his toolbox such as Lutetium 177, gene therapy is being investigated, then immunotherapy and finally Cabazitaxel. If the cancer progresses to the bones then there is Radium 223. Because this is a very aggressive cancer then our oncologists strategy is speed to try and keep on top of it. We were told hubby possibly had 6 months initially but here we are still going strong. You have the right attitude and being positive has helped us on this bumpy ride. There are a few others on the forum with a similar diagnosis, but not many, so it is good to welcome you to the exclusive club, although I am sure you would rather not be here. Please ask any questions and join in any conversation. I am afraid we do get sidetracked sometimes and it helps if you have a good sense of humour.

Hello Richy0766 

A warm welcome to the online Prostate Community - I am so sorry to read of your diagnosis and the associated issues , not least the "terminal diagnosis".

I am a little lost for words (not usual for me)  but you have a strong and positive attitude and that's half the battle. I see you have received a great welcome from Alwayshope so all I will say is you are more than welcome here - please feel to join in any conversations and ask any questions you do have.

Best wishes - Brian.

Hi Richy0766

Welcome to the forum, it sounds like you’ve really been through the mill these last couple of years, I hope you’ve had lots of support from friends and family while you’ve been going through this. What medication are you taking now out of interest? I always think the word “terminal” is quite frightening, we were told “no cure but treatable” it feels like it has more of a future. Now you have had this extensive treatment, you must be in a better place than you were 2 years ago hopefully. I like your positive attitude and how you are prepared to soldier through. Have you got much planned for this year? My OH and I have just been on a spa break for three days, never been on one before.  it’s been a very positive experience. I can recommend if in you feel like being looked after and pampered for a bit. It’s very relaxing and soothing. All the things we thought about doing but never have we are doing now. We will be broke and old together if  “treatable”  proves to be very treatable!

Best wishes Lx

Welcome Richy0766 from a fellow terminal, which doesn't mean we are not treatable, diagnosed and told straight away, but thankfully like you i have a positive attitude and am making the most of my time, even getting married, 

Eddie

Hi Richy0766

Welcome to our prostate cancer family it's great to meet you today I do hope that you have had a good day??

I am very sorry to hear that you have joined us "Terminals" but never mind you are very welcome.

Like you I was also diagnosed with Terminal Prostate Cancer last June that had a PSA off 1000+ initially.

Since diagnosis I was put on Hormone Therapy (tablets and injections)  and my PSA is now 0.9 which is crazy.

Yes a positive attitude is key and is something that I have always been which has always put me in great stead.

Please please come back to me if there's anything that I can help/support you with???

Prostate Worrier.

I take my hat off to all you “terminals”.  But, like others, I prefer the term “treatables”.  After all, we are all “terminal”..,none of us are going to get out of this place we call earth alive    AW

Hello and welcome to the site. 

Hi Shar,

I just saw your update : “So here we are 3rd may and 12 weeks since the last PSA blood test. So happy to report that husband's PSA is now non detectable so a fabulous result for us”

I am so pleased to read this!  It just goes to substantiate what this thread here is all about : everyone is “treatable” with the fantastic research leading to today’s available medicine.  Well done to both of you!!

AW

Hi Shar,

Ive just read your profile, it’s very uplifting, brilliant result . 
Lx

Hello Ricky - welcome to this forum. I’m sorry to read your diagnosis but it sounds as if you have two big advantages - a positive attitude and a medical team prepared to throw everything they can at this darned disease! Like everybody here - I prefer ‘treatable’ rather than ‘terminal’ :) long may it be ‘treatable’ and ‘manageable’ for you before, as Alpine Warrior reminds us, the ultimate ‘terminal’  waiting for all of us, whatever cause, strikes!  The one thing prostate cancer has taught us is that we have to live for the here and now and not waste energy on the ‘what ifs?’ in the future! I wish you all the best with the treatment and it will be great if you can let us all know how you get on!