Hi Dave-J-H-71,welcome to the forum, though I am sorry to hear of your diagnosis, I was very impressed with your post, I share a lot of your journey, diagnosed 56yo T4 N2 M1a Gleason 10 metastatic spread to 9 places, though I don't know how, not to bones. though they are thinning and fracturing due to treatment. I was referred to my hospice and their palliative care team nearly a year ago which as you know are wonderful. I was in healthcare/cancer care for 15 years so knew about PSA and testing, and also like you i try to get guys to have a PSA test. I was invited by a friend to do a talk on PCa at a walking group meeting last year, almost 200 people never been so nervous, but I did ok and i think you would agree if only one guy had a PSA test due to it, it was worth it, due to the speech i have been invited to do more and have been able to do 9 so far. It would be nice to prevent even just one guy from sharing our journey with this horrible disease, my best wishes to you my friend, take care.

Eddie

Hi Eddie, thanks for your reply and welcome to this forum. I’m sorry to hear of your diagnosis, our cancer journeys sound very similar. I do think that more should be made known of PSA tests and their importance, as I said in my thread I’d never heard of it and I’m so glad I went to my GP with hip pain when I did. I dread to think how much further my cancer would’ve progressed if I’d left it any longer. A lot of my friends are now going to their GP surgery for PSA tests, which can only be a good thing. Good to hear too that you’re spreading the word about this test too. I’m sure it was very daunting standing up in front of 200 people, but well done for doing it. 
Best wishes & take care, Dave. 

Thank you Dave, doing your maiden speech in front of 200 people was terrifying, but worth it, I have since been told 11 guys had a PSA test due to it. I have learned since that the best way to get guys to have the test is by getting their partners to convince them and not talking about ED or libido issues. good to see your having success convincing people too, though i think the PSA test will be replaced by the MPS2 test which is at the trial's stage, take care.

Eddie

Getting 11 guys to go for PSA tests on the back of your talk about your prostate cancer journey is a job well done. I completely agree, persuading some men to get tested can be difficult, I’ve found that sometimes the thought of a DRE after PSA testing puts a lot of men off, but I’ve told some of my friends that a DRE isn’t always necessary, depends on the test results. But I’ve also said that having a DRE is well worth having, a minutes slight uncomfortableness to save your life or extend your life is well worth it in my eyes. You’re right too in saying that partners convincing men to get tested is a good way forward. There is certainly more awareness of prostate cancer, which is good. 
Best wishes Eddie & take care. Dave

Hi Dave, hope your having an ok day, when i have a DRE, I ask one of my lady doctors to do it, much slimmer fingers. There is a new prostate cancer test being trialled that is much more accurate and only requires a urine sample the MPS2 is going to make a difference, convincing partners about the importance of testing is so much easier than the guys and as they live together they can be persistent. Dave i am on the Macmillan community which also has a prostate forum and half the people on it are female and they put many guys to shame with their knowledge of PCa,, the only downside being their posts are often 5 x longer than needed and they wander off topic LOL. take care my friend.

Eddie

Hi Eddie, how are keeping? Hope you’re as well as you can be. I’ve heard about the new MPS2 test currently being trialled, that should be a big help in diagnosing prostate cancer. In the early days after my diagnosis my wife knew a lot more about prostate cancer and treatments available than I did. I didn’t want to read anything about it, couldn’t even bring myself to read through my own diagnosis paperwork, it was too raw and I was having trouble coming to terms with having cancer. Now though it’s a different story and I’ll actively look for information on prostate cancer and cancer in general. I’m also on the MacMillan community forum and ladies on there are way more knowledgeable than most men. I’ve only very recently read through my diagnosis paperwork properly, 2 years after my diagnosis. I was Gleason 4+5 with PSA of 53.3. My PSA dropped dramatically after starting hormone therapy and chemo, but it has started to rise again recently and we found out from a CT scan a couple of weeks ago that the cancer has spread to another vertebrae in my spine, so we’ll just wait and see what my next set of blood results are like and what my Oncologist says, take it from there. 

Hope you’re well and take care, Dave.

Hi Dave, glad to hear you like to study now, though can understand your reluctance in the beginning, I was in healthcare for 15 years and did 5 years in palliative care which was nearly all cancer, so had to know a lot about cancer, luckily I have always liked studying and never liked not knowing, I also get my full hospital notes, the ones they share with each other and not us. Sorry to hear your PSA is rising as well, mine has risen the last two times, have another PSA test on Tuesday which will probably show another rise, but hopefully not enough to stop treatment, That's great your on Macmillan as well, I have the same username, is yours the same, if it is I will post you, please take care my friend and will catch up later.

Eddie

Hi Eddie, I’ve very recently thought about asking for my full hospital notes during my appointments, I think I will when we meet with my Oncologist or Palliative Care Dr next. We only ever get the basic information and I think now I’d like to know things in more detail and know exactly what’s going on. Sorry to hear that your PSA has risen too, fingers crossed all will stay as it is for you and you can continue your treatment. My Oncologist has mentioned starting me on abiraterone together with steroids if my PSA continues to rise. I know the cancer has spread further in my spine and my lymph nodes are enlarged again in my groin area, so putting that together with the rise in my PSA makes me think I’ll be starting a new course of treatment sooner rather than later, but we’ll wait and see. That’s another thing I’ve found with cancer, you have to become proficient at ‘the waiting game’, try not to let your thoughts run wild & overthink and above all try to stay positive, but somedays that’s easier said than done, as we all know. My username on MacMillan is Hunty71, I haven’t been on that site for a while, think I’ll revisit soon. I wish you all the best for Tuesday Eddie and hope that your PSA results are favourable.

Best wishes & take care my friend, Dave. 

Morning Dave, your full hospital notes are an eye opener, you find out so many things you were never told. and thank you for the good wishes with my PSA test next week, I hope to be ok for another 3 months, Dave my cancer adapts very quickly to hormone therapy and as it's now my only treatment option we have to be careful and not start different HT drugs too soon as i only have 2 more options, my next treatment will be, the complete androgen blockade, enzalutamide + flutamide with either bicalutamide or abiraterone. Lets hope neither of us needs to start meds anytime soon, always been a relaxed and patient guy so waiting is not a problem and as i have many more health problems as well as cancer if I didn't stay positive, I would be in a dark place all the time, though I do visit that place occasionally, as you probably do also, I will look you up on Macmillan and send you a post today, Good luck to both of us.

Eddie

Morning Eddie. It’s a beautiful sunny morning here, hope it’s the same with you. I’m day out in our back garden with a coffee & reading. I’m becoming a real bookworm now, spend most of  my time reading. I’m starting to ask my Drs for more detailed reports now and a couple of weeks ago I asked for the first time to see my CT & MRI scans, that’s when I was told the cancer has spread further in my spine. I’m sorry to hear that HT is the only form of treatment available to you. Am I right in saying that you’re unable to have chemo? It sounds as though you have more medical issues to face as well as cancer, which must be difficult for you. Let’s hope that you’re able to stay on your current medication for as long as possible. I’ve been on monthly Firmagon injections for just over 2 years and I’ve read that the cancer becomes resilient to it after 18 months to 2 years, so I could be coming to the point where I may need additional treatment to work alongside the injections, hence the mention of Arbiraterone & steroids by my Oncologist. I have blood tests every 8 weeks before my Oncologist appointment and my bone infusion, so I should find out towards the end of this month what my PSA is and take it from there. I have been in very dark places since my diagnosis and still do get dragged down every now & then, but I try my very best, as we all do to remain positive. I had counselling last year and I’m coming to the end of my 2nd group of counselling sessions. I’ve found the 2nd counselling sessions better than the first, I’m having CBT counselling now which helps me to build coping techniques when I feel overwhelmed with everything that’s going on, not for everyone I know, but seems to work for me. Hope you have an enjoyable and relaxing day. 
Best wishes, Dave