Prostate Cancer: Treatment and Side Effects, a personal persperctive.

This video was inspired by my making the decision to visit a Maggie's Centre (can't recommend them highly enough) and realising that sharing experiences can be valuable. This is my prostate cancer story. Others will be different but I hope that there is something in here that someone may find useful.
Most of all, men 50+ please get tested regularly. If this cancer is caught in the early stages, it can be treated very effectively.
www.maggies.org

[@JamesonsTravels]

hang in there. i am post surgery 4 weeks. i can't imagine your struggles.

[@sherwinmoscow9455]

Thank you for sharing your story. I agree with the concept of valuing health span over lifespan--it really is about quality of life, not quantity. Best wishes for the next steps of your journey to be more positive and rewarding!!!

[@NiroPensioner]

Thank you for your comment. I think that since I made the video, I've become more convinced that I will not continue with the treatment. Even if I don't recover much strength, I need to halt the progressive decline.

[@Kalense]

Thank you so much for that video. I appreciate it all the more because I know how much it will have taken out of you. My condolences on the loss of your wife - she clearly meant a great deal to you. My experience with radiation and ADT has been very similar to yours, and like you my physically active life has rather slumped into a porridge. I wish you all the best for the future.

[@NiroPensioner]

Thank you for your comments. I wish you well with your treatment program. Personally, I am fed up of feeling like an invalid and hopethat I can recover some of my energy and strength back. I have an appointment with my consultannt

[@happysporran]

Thanks you for sharing. It's very timely for me, as tomorrow I have an appointment with my GP. I'm in my 60s, so I really should get this checked.

[@NiroPensioner]

Thanks for your comments. Yes, please do get checked regularly now. I can't help but think that if my PC had been picked up that year earlier my prognosis might be very different.

[@daleval2182]

I have had serious gut pain im 64, 3 months now 2 months ago pain was so bad mainly when i lay down , or after even small meals, anyways i went to have tested they admitted me my white cell count was very high, Dr thought a stomach or urinary infection,put me on antibiotics, i got no relief,still sharp gut pain, my PSA was 1.2. Had another blood' test in 30 days boom 74 ? They think prostate cancer, im not rushing to nothing, infections can and do raise PSA , so do viruses, im not going to let my treatment destroy my quality of life, the pain is still with me, not as often ,as i fast many hours,and eat only perfect food, 0 sugar,no carbs, keto style, healthy fats protein, nutrients dense veg, after watching many men's stories i may refuse all treatment, try control pain ,and just keep it natural, i dont fear death, i worse fear being a lump in a chair too long, i ask you when and what treatment helped the gut pain for you ?

[@NiroPensioner]

Hi, I hope that your diagnosis is not too serious. It's a personal decision, of course, when I was first diagnosed, I considered refusing treatment but my wife and daughters really wanted me to have it. As of now, like you, I feel that quality of life is as important, if not more important than length of life and therefor, I am planning to discontinue treatment when my next course is due. I too try to live a healthy life with a good diet. As for dealing with the pain, I took paracetamol and ibuprofen and I would just walk and try to distract myself from the pain until it subsided.

[@daleval2182]

@@NiroPensioner thank you bro , God protect us both

[@mrofnocnon]

@@NiroPensioner God bless you. Please let us know how things go.

[@NiroPensioner]

@@mrofnocnon Thank you. I will.

[@edchigliak2844]

Thank you for being open and sharing your experience, especially to a bunch strangers. I'll be 50 in a couple of years and will take this knowledge forwards. My deepest condolences for your loss this year. And well done for reaching the milestone of over 100 subscribers, me being one.

[@NiroPensioner]

Thanks for watching and subscribing. Do make sure that you get yourself tested regularly. If caught early PC can be treated very effectively. Personally I think there should be a screening program, much as there is for breast cancer.

[@corriecordier5565]

Many thanks for sharing your experience. Trust you will overcome.

[@RespectthePhilippines-uu1eq]

Very informative indeed, thank you for the video. Hormone treatment is brutal, I've been on it for six months, have gained 2st and 6" on my waistline, lost body hair, feet swell, ED the lot, it's pretty miserable really but it could be worse of course. I found I had PC through a routine blood test (9.2), biopsy (ouch), found to be Gleason 7 (4+3) stage T3A which means the cancer is just outside my prostate. After my test, my three older brothers had blood tests and all were found to have PC too, so you can guess on the topic when we get together. Four brothers with varying degrees of PC on various treatments. Back to ADT treatment, or let's call it what it really is, "chemical castration", I can fully understand why anyone would consider stopping hormone treatment (ADT), you have to be enduring it to fully understand. Gents, please have a regular PSA test if you are over 50, note that myself and my three older brothers had no symptoms of PC. One word of advice for people on ADT, exercise is KEY, I lift weights four times a day and walk a couple of miles each day, althouth it's getting more difficult to walk due to muscle loss, which is another side effect. Luckily I have a physical job and I'm sure that helps although I'm finding it more tiring. Apologies for the long rant

[@NiroPensioner]

Don't apologise for ranting. The whole point of my video was to try to publicise how important it is for men to get tested and catch PC at a stage where it can be dealt with effectively and you sharing the experiences of yourself and your brothers can only help. It seems that your experience of the disease and the side effects is similar to mine. I have made the decision that I have had enough. It is, as you say, chemical castration. The ED and loss of libido and stuff were not a major issue for me and my wife was very understanding. In terms of physical side effects it is the fatigue, the loss of stamina and strength that bothers me but more so, and this may be more a side effect of the Enzalutamide, feeling slightly knocked of mentally is very depressing. That's why I will not be continuing with the hormone treatment. Thanks so much for your frank sharing and I wish you well in the fight against this disease.

[@georgehiggins3103]

Thank you very much with all that information. I genuinely wish you all the luck in the world.

[@NiroPensioner]

@@georgehiggins3103 Thank you, and the same to you.

[@johndevlin5111]

I've been enjoying your e-Niro videos. Sorry to hear about your wife and your health. I see a nice guitar in the background any chance of a tune in a future video? 🎸🎷

[@Podule0]

Well done for having the courage to talk about your personal circumstances. Thank you. All the best.

[@NiroPensioner]

Thank you for your kind comments.

[@orricowp]

Thank you so much for your honesty! I’m 71…and about to start the journey. Awesome video Sir.

[@Shteev91]

Thanks so much for sharing your story. You might feel weak at times but your strength comes through on your videos. You are a natural at this and it's brilliant to see you finding a passion. Would love to follow you along on this journey and your new exciting EV journey! You should do a video on how you ended up living in France!

[@NiroPensioner]

Thanks for your kind comments. I may well do one on France sometime.

[@carlchappell6383]

Well said sir and thank you, yes maggies is so good one guy called hormone (adt) treatment advance devils treatment very effective as you say but its the quality of life thats important aswell, i to have many of your symptoms after being on it for 18 months, bless you all on the pc journey.

[@NiroPensioner]

Thanks for your comments. I hadn't heard of "advance devil's treatment" before. It's a good one. I wish you well with your treatment.

[@philipcave4303]

63 and on active survalence, had blood test done initially because I felt I had low testosterone and my doc advised I had my prostrate checked as well, testosterone came back normal but PEA was 7, had scan done and pirads came back at 4, which was red light, had biopsy, 18 taken two found to be slightly cancerous, no cancer in my family, never smoked, fitness fanatic all my life, I was scared and really really angry, got to have another PSA next month, who knows what's around the corner, sorry about your wife, you seem like a nice chap, thanks for your vid.

[@NiroPensioner]

Thanks for your comment. Sorry to hear about your diagnosis. In my experience, your biopsy results seem not too bad. I hope that you have discovered the disease early enough for it to be treated effectively.

[@scrubbwhite291]

I’m 73 and I have just had a prostrate biopsy. I am quite scared of what might come. I am starting to experience fatigue and loosing memory. Thank you for your story and kind words.

[@NiroPensioner]

Thanks for your comment. I hope that the biopsy goes well for you.I understand your concern. As I said in the video, everyone who I have spoken to with a positive diagnosis has had a slightly different experience but the vast majority have been successfully treated and are in remission. In my own case, my prostate cancer is incurable but it is treatable and I am now 8 years on from my diagnosis and my PSA is near 0. However, I am struggling with the side effects of the treatment and, in fact, I have decided to discontinue it. I am making a little update video today to explain my reasoning for that. I'm not advocating it for anyone else, this is just my decision. I wish you well.

[@koof1776]

​@@NiroPensionerSmart decision~

[@NiroPensioner]

@@koof1776 Thank you for your support.

[@Travel_Day_Dreams]

Appreciate the candid discussion, the more this happens the more likely it is that awareness will improve. My father is stage 4 so this video touched home, his current treatment is palliative (hormone therapy) and we've had 2 years or so since initial diagnosis which has been welcome, but this year his PSA has shot up (>100) and we're probably looking the final stages of this disease. Wishing you well with the channel, everyone starts with zero so congratulations on your first 100 (it's 99 when I'm typing this so only a matter of time).

[@NiroPensioner]

Thank you for your comments. I am so sorry to hear about your father. It underlines how important it is that men get tested and get this disease treated in it's early stages when it can be treated very effectively. I think there ought to be a screening program much like breast screening for women.

[@alistairhawkins9760]

I watched a couple of your posts on your Niro EV recently as I too have owned and enjoyed EV’s for nearly four years. I then noticed this post. Thank you so much for being so candid and courageous about recounting your prostate cancer history. I was diagnosed with advanced stage prostate cancer about six weeks ago and have been on hormone therapy (tablets followed by the regular injections) since then. I am due to have radiotherapy in a few month’s time. I am uncertain what will happen after that but understand it’s possible I will need to continue on the hormone treatment at least for some time. Your story was very helpful for me to hear, including about the various side effects, which I sort of knew about. It’s early days for me but I have particularly noticed the tiredness affecting me a little. However, I do thank you again for sharing your experience with everyone and wish you all the best, whichever way you decide to go with your continued treatment and also for your KZbin channel. I will definitely continue to watch your posts and have now subscribed. Thank you also for sharing details of the Maggie Centres, which I’d not heard of and I will look into further.

[@NiroPensioner]

Thanks for sharing this Alistair. I'm sorry to learn about your diagnosis. I wish you well with your treatment. It has been eight years since my diagnosis and it sounds like you will be having similar treatment to me. The combination of radiotherapy and hormone therapy has been extremely effective for me. I have spent 5 of the last 8 years on hormone therapy and while it is effective, my PSA is vitually zero, the progressive nature of the side effects, for me, has become enough. I am pretty certain that I will not continue with the hormone therapy. But everyone is different and you may well fare better under them. My Maggies Centre runs a Living Well with Prostate Cancer course. I imagine others will do similar. I found it really useful. There is advice on Diet, exercise and coping with the other many side effects. I really recommend it if you can access such a thing. Once again, wish you well with it and thanks for sharing on here.

[@alexbreton4]

Thank you so much for sharing your experience., is not easy to go through all this ordeal.

[@NiroPensioner]

Thanks for your kind comment.

[@pandklid6930]

Thanks for sharing. Good luck with your treatment and with your EV adventures. Cheers from Gippsland Australia.

[@NiroPensioner]

Thank you.

[@munro12]

Thank you ... the push I needed. I'll call the Health Centre tomorrow to ask for a test. I hope you keep well.

[@NiroPensioner]

Thanks for your comments. Yes, please get tested regularly. If caught early complete remission is probable. I believe that there should be a screening program for men much like breast and cervical screening for women.

[@peterbunker7165]

Many thanks for posting this. It is a nudge to me to get checked. You see so much conflicting information, but I think the main thing is to establish a baseline from which you can see the direction of travel. I am so sorry you didn't turn over the page on your first blood test, but we are where we are. I am surrounded by old geezers such as myself, and they all seem to know their numbers, as do my older and younger brothers. Thank you for another kick up the arse. I hope your energy levels improve. If you do come off drug therapies, I would urge you to take a look at fasting as a means of at least slowing the progress of the disease. I was an avid follower of Dr Michael Mosley (until his recent untimely demise) and he often promoted the many benefits of fasting. Keep up the channel. You touch on many interesting things, such as living in France. Perhaps you could talk about that occasionally? I am writing this from our little gaff in Portugal which we have had for ten years. We live in Sheffield, though, and that is now home. But I lived in Torphichen, near Bathgate, for six years, and love Scotland. I digress. Keep doing what you're doing, and thanks for the boot up the backside.

[@NiroPensioner]

Thanks for your comments. I think that there ought to be a screening program for prostate cancer like there is for breast and cervical cancer in women but, in the absence of that, if my video encourages even one man to get tested and diagnosed early enough, I will be happy. We loved our time in France but as happens to many expats the need to be nearer children and grandchildren brought us back in the end. I was a big fan of Dr Michael Mosley too. Such a tragedy what happened to him. I loved listening to his Just one Thing radio program and it inspired me to try a number of "Just One Things" that I have managed to keep up. Thanks again for the comments.

[@BlueSky-gu2bx]

Thank you for sharing your story, it is very beneficial to men all over the world watching your video. Best of Luck to you. I'm sorry to hear of your loss this year.

[@NiroPensioner]

Thank you for your kind comments.

[@ericb2397]

Thanks for sharing your story. I'm 4 weeks post op from having my prostate removed. I'm 65 years old, stage 2, and recovering well. I hope men get their PSA checked. Best of luck with your continued journey, and may God bless your.

[@NiroPensioner]

Thank you and best of luck with your treatment program too.

[@rogerembry4777]

Been on Lupron for 4 years and it’s awful

[@kevingreen8581]

I share your condition having been diagnosed late last year. Am doing what is called Active surveillance at the age of 67. Told best to get the prostate removed before I reach 70.

[@NiroPensioner]

Sorry to hear about your diagnosis. Active surveillance is a common "treatment". It is good that you have been diagnosed. If the cancer is contained within the prostate, I believe that a prostatectomy can be a very effective treatment and can often result in complete remission. I wish you well.

[@deansh8506]

Very brave of you to talk about this to your subscribers. But as you say if at least one person decides to get checked out and catches it sooner you have done a great job there 👍 All the best to you and your future.

[@NiroPensioner]

Thanks for your kind comments and thank you for watching.

[@koof1776]

How many spots did you have?

[@michaelureadi2884]

Thank you for sharing this video...Very informative and candid took 👏

[@stevencrawford3631]

Is your Maggie Center located in Edinburgh? We are considering moving there next year, as diplomats. I have stage 4 metastatic, have done radiation, chemo (which was bad but short and doable; great results I think) and now ADT with injections and enzalutamide. We are trying to assess if Edinburgh would have the infrastructure to support a move there. Any help would be appreciated.

[@NiroPensioner]

Hi, No, I use the Maggie's Centre attached to Forth Valley Hospital. There is one in Edinburgh, attached to the Western General Hospital. I'm sure that it would be just as good as the one that I attend. I have had a quick look and it looks like they also run the Living Well with Prostate Cancer Course which is the one that I found very useful. They can also be very good for partners and families. As I have said, I couldn't recommend them highly enough. I can't say anything about the hospitals in Edinburgh but I guess that they would be as good as anywhere else in the UK. Certainly, the treatment that I receive at Forth Valley is good. I hope that your treatment is successful at keeping the disease at bay. It was for me. My PSA was virtually zero. It is just a matter for me that since the loss of my wife, I find it difficult to cope with the side effects, the worst being the effect that Enzalutamide seemed to have on my cognitive function. One of the best lessons that I learned at the Maggie's Centre, however was that it is different for everyone. Thanks for your comments and I wish you well. There are many worse places that you could move to than Edinburgh.

[@gulshani8331]

​@@NiroPensionerhow many years u survived since? And ur geleson score plz with psa level?

[@NiroPensioner]

@@gulshani8331 it's been eight years since I was first diagnosed gleason 4+3 PSA 22.

[@gulshani8331]

@@NiroPensioner your current psa level

[@paulpayne9391]

How did you know what treatment you wanted?