Hi Neil, from someone who has gone down this road for the past 20 years. I had surgery, psa started to rise and I had radiation, psa started to rise again. Doctors were pushing me to start hormone therapy but I have delayed it as long as possible. Disappointments are common after therapy, the best way to look at this is to think of it as a chronic disease that can be successfully managed for many years. I felt like you after both treatments failed but I found a great oncologist who taught me about the glass half full way of thinking.
Cheers Greg for the comment. I'm hoping that I don't need to go down the hormone therapy route. Again i like you found out some nasty side affects etc. My latest result of 0.04 is encouraging 5 months after my 20 sessions EBRT. I think catching mine at the early stages have helped. My gleason was 3+4 but with a positive margin. Kepp well mate and thx again
Hi Neil: I've been following your journey for over a year now and I am so happy for you that the numbers are heading in the right direction! In a few days I will be starting my 39 sessions of EBRT (IMRT) to deal with a persistent and rising PSA after a radical prostatectomy last January.The latest PSMA PET scan still cannot detect any signs of cancer cells --- even though the PSA was 0.72. My medical group here in the US does not offer the more advanced proton beam technology, just the less desirable photon beam radiation therapy. For you and for all of your fellow travelers, I wish you improving health, peace of mind, and many joyous occasions to celebrate with family and friends. Neil, you have every reason to look forward to a very happy holiday season!
Such a lovely message, I really appreciate you taking the time to message me. It's messages like this that keep me positive in doing my little clogs on UA-cam. I hope your radiation goes to plan. Have you watched my video about the radiation session over here?. Where abouts in the US do you come from?. I do like watching the American football, detroit lions are my team. Again so many thanks for following my journey and have a lovely Xmas if you can. Keep in touch bud
@@neildavidson7768 I did watch the video about your radiation session and it helped to calm me down quite a bit! Hearing (and seeing) the reality of this traumatic medical situation from the standpoint of someone who is experiencing the same procedures has been more helpful than what the doctors have explained to me. Like you, I have done a lot of research and have surprised my medical team with the ~technical comments and questions. You are 100% correct about the need to find anything to help keep a positive attitude, and how the lack of preparation/compassion shown by your doctor can easily affect your mental health. I live in Southeastern Connecticut in New London where we have the Thames river and are known historically for our involvement with the whaling industry. A major player in WW2, we still have the Submarine Base, the Coast Guard Academy, General Dynamics (sub builders), and Pfizer Inc, a multinational pharmaceutical and biotechnology corporation.
@@Skwarek-wp8dc What is the reason for listing drugs that are used in animals to kill gastrointestinal parasites? Only Ivermectin was ultimately approved for use in humans (1987) and is used to treat infestations including head lice, scabies, river blindness, strongyloidiasis, trichuriasis, ascariasis and lymphatic filariasis
@@Skwarek-wp8dc What is the point of listing drugs that are used in animals to treat gastrointestinal parasites? Ivermectin is the only one of these that was approved in 1987 for human use to treat infestations including head lice, scabies, river blindness, strongyloidiasis, trichuriasis, ascariasis and lymphatic filariasis.
Hello Neil, I finished with the radiation only therapy and continued with monthly belly shots of the hormone therapy for about 18 months…Did not love the hormone process but finished as recommended by my Doctor. My recommendations: take it one day at a time, get exercise, get to a psychiatrist if depressed or angry or can’t sleep, hook up with friends. See a counselor if indicated….my biggest problem was difficulty sleeping with the hormone process, it’s still a problem…next PSA next week. Wishing you a peaceful period.
@@WalterThorne-h5k Walter many thanks for taking the time to comment. It's been a few weeks since I've done the video and although still upbeat I did have a little meltdown last week. All fine now but just popped to my local GP and she said just keep an eye on it. All good here and thanks again for watching.
100% agree with you. Doctors who respond like that do not have have cancer. My local health authority does 2 decimal places, but at key points I was using private tests as well. Don't anyone assume the number written down or being read to you is correct. Admin staff have completely jumbled the numbers on various times I've asked. When you are hanging on for a number and they miss the decimal place and read the number out wrong to you on the phone, they have no appreciation of the stress they cause.
1 million % mate, people don't seem to realise that it's us who have the Big C. Any positives i can get with the PSA results then its better for my mental health. I'm glad somebody can understand my thinking. Again its my cost doing the test not theirs. As somebody else commented they should be encouraging me doing private test to look after my wellbeing. Thanks for watching and understanding my point.
F u blank blank k hormone therapy. I am currently on radiation prostate cancer and I refused all ADT! It's a big rip off I believe! Pharmaceutical companies are making billions and billions of dollars on this thing.
Good commentary about UK Healthcare vs US Healthcare- has its issues but so does NHS in UK as we can see.....I'm being treated at Dana Farber and going through ADT therapy and getting ready for radiation - ADT brought my PSA to .02 which is great- I'm post Prostatectomy treatment so this is salvage therapy - 2nd round to get it!! Positive attitude and exercise and great hospital and docs! Good luck Neil
Cheers David, did you watch my video about the radiation stage. I filmed a session of what happens over here. It's prob pretty standard worldwide. Cheers mate for watching
In the States here. Watching your video. Appreciate your posting.I pretty much get the "see you in 6 months", on ADT, post radiation .06 PSA from a 4.7 4.7 not much but I had 21mm tumor plus some others.
Cheers Ed for watching across the pond. 6 months will be the standard NHS one but I will do privately after Xmas to keep an eye on. Cheers again for watching
I understand what you’re saying. I think the Olympian has it in the family and sounds a good idea for them to be tested. PSA isn’t very accurate? I’ve never had PSA because I’m needle phobic. MRI low but enough for me to have biopsy. They gave me a negative biopsy, with the proviso that there is a 20% chance of missing any cancer. So even the biopsy can miss 1 in 5 people who have cancer! You can see why they don’t want to test everyone’s PSA because they will end up doing loads of MRI and biopsy without being sure. How would you have coped if they told you there was a 20% chance they had missed any cancer? We have a friend who is stage 4. Take care of yourself.
Місяць тому
thanks for update Neil; I'm in similar situation before radiation. Take much care.
cheers Graham. yes happy with the private blood test but no so with Hospital, but there isn't no problem just thought they would be more professional in what they said.
You are doing ok if you are happy with what you are doing just do it. I was told i could go to ever 6months psa test after having 3 clear i said no and my last test back up to 0,20 and have to wait till i get back up to 0,40 this is after all the same as you have had . The doc said pet scan again and we will need to go and hit it hard. And get a psa test men i was fit and well had stage3tb prostate cancer at 53 . I will be 58 at xmas and this is a battle i will try my best to win.
Stage 3 tb what does 3tb stand for? My diagnosis was gleeson 8 4+4 T3a NO MO had to have 18 months of hormone treatment and 20 radiotherapy sessions. Every case is unique to the individual. Take care.
Oh I think I just understood your prognosis at the end of this video. And I made a few comments before I heard it. My bad I kind of understand. You are NOT doing poorly you're doing okay right? After radiation. And what kind of hormone treatments were you on Neil or still on.
stage 3tb means the cancer has spread from the prostate to the seminal vesicles or to nearby tissue or organs such as the rectum bladder or pelvic wall. Hope that helps
As always very informative my dear friend i agree my locum oncologist as you know had a meeting lasting no longer than 5 minutes combined furious he could not even turn on the computer thankfully i kicked off and now under a great oncologist oh by the way literally just ordered a home kit going to give it a go if no joy might book northampton then go to costco have a fab weekend buddy 🔥🔥🔥
Hi Neil. I totally agree re the need for 2 decimal places. Fortunately my health authority in Hereford provide this level of detail so I can pop the numbers on a spreadsheet to see the trend. I know it can fluctuate a little for many unknown reasons, but a trend is a trend... I am quite pee'd off by folk on the forum telling me not to bother about 'such small numbers'.
totally agree mate, it's all about the trend in the graph, as I said i'm in a better place this xmas because i can see my numbers going in the right direction. Cheers for the watch and comment
I’ve had radiation therapy for prostate cancer couple of years ago. Never heard of this decimal point talk with my oncologist! Surely anything below 1 or 2 is good!
Have that great Christmas you want Neil. Try to include a Christmas time walk video of Great Yarmouth next month. I suppose the decorations will look awesome all lit up after sundown 🎄. Greetings from Cape Coral, Florida, hurricane Capitol of the world.🌀😢
I had an advanced stage of Lymphoma before the prostate fun. The Lymphoma almost killed me. Now I see the prostate stuff as a small inconvenience. Don’t make yourself crazy..you’re more likely to have a heart attack. Keep the body in good form. Regards from New England to Old England.
@@WalterThorne-h5k cheers Walter, I used to follow your patriots for a long time, but now prob the worst team in NFL!!!. This year nobody will stop the Lions. Cheers from this side of the pond
I agree that doctors need to work on their bedside manner. Maybe what the doctor means is that the second decimal place is less reliable or statistically insignificant no matter how it’s trending. Still when you told him about your private scores, he should’ve just said “that’s encouraging.”
Look at my records I had a 3.5 when I was 53 years old now I am 70 and my PSA is 9. 9! In all these years. Good thing I didn't get treated back when I was 52 years old.
@@frederickrich7393 how are you doing now brother? With your prostate cancer after 20 radiology treatments and hormone. I am currently on Fulton radiology but I refuse the hormone treatments. That was my decision. I did a lot of research too. But how are you doing and how long ago was it your treatment.
Just relax Neil, take it easy. it is alike a chronic disease. trust your Drs and don't play a patient and therapist at the same time. Don't emphasize on little tiny changes in PSA dilemma... enjoy life man..! and yes I have Gleason 7 Ca..
totally agree mate. If it wasn't for this private test that I fund then I wouldn't be in a better place today. they need to understand the patients concern rather than just being a number. not all doctors are like this and the one I saw a few days ago was new to me. Any positive i can find i will take a cling too. WASNT HAPPY MATE!!! and believe me i don't get wound up over anything, in actual fact it strives me on to challenge them more. cheers bud
@ you are doing a real service to share both the medical facts of prostate cancer and how to advocate for yourself in the “big medical machine” that is the often faced by us in the “cold and overburdened” health service. I find your courage to confront doctors and resistent bureaucracy in a gentlemanly way very inspiring. I also think it is so beneficial to us men that you discuss the mental health aspect of dealing with the “Big C”. The fear and uncertainty can undermine our ability to heal and thrive. Keep it up. You are making a significant difference!
cheer mate for such a lovely message. I think the problem here in the UK is that people of my age (54) shy away form the facts and are scared of the medical profession. i have done a lot of research about prostate cancer and when i go to see them i'm not scared because i can talk to a good level. They arent used to this as most people who go are aged 75 and just get fobbed off. I'd hate to think of how many people have been fobbed off in the past
@ you’ve found your mission or it has found you. You are providing a unique commentary on this disease and how the medical community responds and how it effects us as patients. Thanks so much Neil. You’ve become must watch UA-cam in my book.
Okay you said they should even lower the age for PSA test? If your PSA is a little high say three or four even the doctors will want you to do a biopsy! After that the one at MRI after that they'll say you should take some hormone treat ments after that etc etc etc You're right on the dog and conveyor belt! Plastic cancer is very slow growing and I wish I could do it over again and NOT take that PSA test. 1 and 1/2 years ago. Cuz all it brought me was anxiety and distress.
@@nassermurad1885 cheers bud for watching, can I just ask where you are watching from. Just interested where my little videos are reaching to. Gleason was 3+4 with a positive margin. Psa at start was 5.6.After operation it went to undetectable
@@neildavidson7768 Thank Mr. Neil for quick reply I'm from kuwait I had the same what you got gleason 3+4 PSA 11 but thanks god after psma , ct/pet scan cancer was only in the prostate after deep thinking I choose radiation+ hormontherapy for 6 months I had some problems with rectum bleeding now I'm ok PSA after 3 months of radiation was 0.09 after 6 months 1.25 and my doctor told me any number below 2.0 you are ok because I still have the prostate your number are very good I am VERY HAPPY for you
@@neildavidson7768Hi Mr.Neil I don't know if get my reply or not yesterday as I wrote I'm 62yrs my PSA 11 IN Nov 2023 Gleason 3+4 But the cancer has not spread outside the prostate gland.After deep research and thinking, I decided on hormone therapy and radiation therapy. I started treatment in March and three months later PSA 0.09 and 0.125 in October in my situation PSA should be below 2.0 as my doc. Told me. Your PSA is great it's under control all the best to you and don't think too much
As you said imposable to get a psa test from your GP im nearly 61 only got a test two years ago as my wife asked my GP to do one as I have two brothers how have Prostate Cancer. I got a positive PSA of7 after lots of tests eventually got a biopsy and I had prostate cancer I still would not have had a test if my wife never asked for it I had no symptoms . Why is this yet they test all women for cervical cancer
100% colin, everybody thinks you get tested at 50!! load of old cobblers. I'm trying to get people to get testing via a different private test at a very affordable price of just over £20. Thanks for your comment mate
I still don't get it Neil. What is so negative that you wanted to talk about it My missing something. After radiation your PSA is 02 and you're worried? Please explain I don't quite understand why you're so concerned. Isn't it natural to have a little bit of PSA.
Dr’s won’t take care of your best interest as you will. I was diagnosed with prostrate cancer in Oct 2024. I’ve seen about 9 dr’s to date. I’m driving the bus even if it goes off the cliff.
No not at all, for me it's gone from the body hopefully with all the cancer with it. Mentally in much better pace knowing this. Appreciate you watching mate
Hi Neil, it would help me to understand why you have been undergoing radiation treatment so soon after prostatectomy if your PSA levels have been so low. Is there perhaps a video where you explain that?
@remco2777 yes exactly correct mate. They are confident that that area will capture the remaining cancerous cells. I done a video on the radiation I had, they even allowed me to film a session
I just completed 44 treatments of radiation. Just recently I have been experiencing urinary retention urge and burning sensation! Flomax seems to work at night which is the worst! I need to take two flomax's split 5 hours apart. I'm afraid to take both of them at one time. But they do seem to work I just hope and pray that the side effects won't.... Get worse! Any thoughts. You know answer treatment side effects getting worse. Which I suspect they will.
@@paulwoods84 never been on any hormone therapy Paul. I think oncologist just thinks everybody is on it after radiation. This was my argument he hadn't even looked at my notes
i think you're right mate. I've done a lots of research about Prostate Cancer and can hold my own big time with a conversation about it. I don't want to be treated as a number but as a name. He didn't even have my notes in front of him!!.The doctor could've turned round and said if it makes you feel better seeing this result to 2 decimal places then good for you, its your'e mental health. I even fund the private ones myself so it's no hassle to them. Cheers mate for your view and comment. and totally agree with your last comment about Chris hoy
The reason the doctor said that it didn't matter and that you didn't need the more sensitive test was because even if the more sensitive test began rising you wouldn't do anything until it rose above "naught .1 " , or likely somewhat higher anyway .
Don't disagree with your comment, but if I was 0.07 in July after being 0.20 in may before radiation and my October one came back 0.09 then it's on the rise again. I would be looking at the next treatment sooner rather than another 6 months time which is when my app is. Who knows what the result would be and where it's spread to in 6 months. At least 0.07 to 0.09 shows something is not quite right. Also for me as I said its my mental health which is in a better place knowing and reading that the results are going in the right direction. I don't disagree with the medical science behind the psa results but I'm trying to look after my own health and asking questions. If you can get your mental health side in the right place then you are half way from winning the battle. I pay for the test not NHS and they should be encouraging people to do this.
a 55 year old friends psa was up dr said we will check in 3mo. and again even higher wait three more mo. higher yet my friend talked to a dr friend in neighborhood and he said run to oncologist they had to remove prostate. trust your gut educate yourself and get second opinions this is your life and you have most to lose
exactly right David, thing is in the UK you are just a number not a name and there isn't many early 50yr olds who challenge the system. Well i do!!!. I think my local hospital trust is sick of me at every meeting, but as you said it's my life and I'm trying to protect myself
Hi Neil, from someone who has gone down this road for the past 20 years. I had surgery, psa started to rise and I had radiation, psa started to rise again. Doctors were pushing me to start hormone therapy but I have delayed it as long as possible. Disappointments are common after therapy, the best way to look at this is to think of it as a chronic disease that can be successfully managed for many years. I felt like you after both treatments failed but I found a great oncologist who taught me about the glass half full way of thinking.
Cheers Greg for the comment. I'm hoping that I don't need to go down the hormone therapy route. Again i like you found out some nasty side affects etc. My latest result of 0.04 is encouraging 5 months after my 20 sessions EBRT. I think catching mine at the early stages have helped. My gleason was 3+4 but with a positive margin. Kepp well mate and thx again
agree. You pretty much manage it for the rest of your life. Life brushing your teeth to keep the dentist at bay.
Hi Neil: I've been following your journey for over a year now and I am so happy for you that the numbers are heading in the right direction! In a few days I will be starting my 39 sessions of EBRT (IMRT) to deal with a persistent and rising PSA after a radical prostatectomy last January.The latest PSMA PET scan still cannot detect any signs of cancer cells --- even though the PSA was 0.72. My medical group here in the US does not offer the more advanced proton beam technology, just the less desirable photon beam radiation therapy. For you and for all of your fellow travelers, I wish you improving health, peace of mind, and many joyous occasions to celebrate with family and friends. Neil, you have every reason to look forward to a very happy holiday season!
Such a lovely message, I really appreciate you taking the time to message me. It's messages like this that keep me positive in doing my little clogs on UA-cam. I hope your radiation goes to plan. Have you watched my video about the radiation session over here?. Where abouts in the US do you come from?. I do like watching the American football, detroit lions are my team. Again so many thanks for following my journey and have a lovely Xmas if you can. Keep in touch bud
@@neildavidson7768 I did watch the video about your radiation session and it helped to calm me down quite a bit! Hearing (and seeing) the reality of this traumatic medical situation from the standpoint of someone who is experiencing the same procedures has been more helpful than what the doctors have explained to me. Like you, I have done a lot of research and have surprised my medical team with the ~technical comments and questions. You are 100% correct about the need to find anything to help keep a positive attitude, and how the lack of preparation/compassion shown by your doctor can easily affect your mental health. I live in Southeastern Connecticut in New London where we have the Thames river and are known historically for our involvement with the whaling industry. A major player in WW2, we still have the Submarine Base, the Coast Guard Academy, General Dynamics (sub builders), and Pfizer Inc, a multinational pharmaceutical and biotechnology corporation.
Fenbendazole, mebendazole ivermectin mushrooms...
@@Skwarek-wp8dc What is the reason for listing drugs that are used in animals to kill gastrointestinal parasites? Only Ivermectin was ultimately approved for use in humans (1987) and is used to treat infestations including head lice, scabies, river blindness, strongyloidiasis, trichuriasis, ascariasis and lymphatic filariasis
@@Skwarek-wp8dc What is the point of listing drugs that are used in animals to treat gastrointestinal parasites? Ivermectin is the only one of these that was approved in 1987 for human use to treat infestations including head lice, scabies, river blindness, strongyloidiasis, trichuriasis, ascariasis and lymphatic filariasis.
Hello Neil,
I finished with the radiation only therapy and continued with monthly belly shots of the hormone therapy for about 18 months…Did not love the hormone process but finished as recommended by my Doctor. My recommendations: take it one day at a time, get exercise, get to a psychiatrist if depressed or angry or can’t sleep, hook up with friends. See a counselor if indicated….my biggest problem was difficulty sleeping with the hormone process, it’s still a problem…next PSA next week. Wishing you a peaceful period.
@@WalterThorne-h5k Walter many thanks for taking the time to comment. It's been a few weeks since I've done the video and although still upbeat I did have a little meltdown last week. All fine now but just popped to my local GP and she said just keep an eye on it. All good here and thanks again for watching.
Keeping you in my thoughts and prayers, Neil. Hope the cough goes away. You most certainly don't need any other ailments. Keep the faith!
100% thx
100% agree with you. Doctors who respond like that do not have have cancer. My local health authority does 2 decimal places, but at key points I was using private tests as well. Don't anyone assume the number written down or being read to you is correct. Admin staff have completely jumbled the numbers on various times I've asked. When you are hanging on for a number and they miss the decimal place and read the number out wrong to you on the phone, they have no appreciation of the stress they cause.
1 million % mate, people don't seem to realise that it's us who have the Big C. Any positives i can get with the PSA results then its better for my mental health. I'm glad somebody can understand my thinking. Again its my cost doing the test not theirs. As somebody else commented they should be encouraging me doing private test to look after my wellbeing. Thanks for watching and understanding my point.
The direction of your PSA results is fantastic. If I had your numbers, I don't think my doctors would order hormone therapy.
F u blank blank k hormone therapy. I am currently on radiation prostate cancer and I refused all ADT! It's a big rip off I believe! Pharmaceutical companies are making billions and billions of dollars on this thing.
Cheers mate, doing my private tests certainly gives me the positivity and i can see with my own eyes that its working, it's all about mental health
Hi Neil still on for that pint in March my friend wishing you all the best from Troon my friend.You know we are all supporting you all the way
cheers mate, we will have a good talk about golf when i'm over
Good commentary about UK Healthcare vs US Healthcare- has its issues but so does NHS in UK as we can see.....I'm being treated at Dana Farber and going through ADT therapy and getting ready for radiation - ADT brought my PSA to .02 which is great- I'm post Prostatectomy treatment so this is salvage therapy - 2nd round to get it!! Positive attitude and exercise and great hospital and docs! Good luck Neil
Cheers David, did you watch my video about the radiation stage. I filmed a session of what happens over here. It's prob pretty standard worldwide. Cheers mate for watching
@neildavidson7768 I haven't Neil but I will. Wish you best on the journey to health! You will be OK! 👍
You're in my thoughts, Neil. All the VERY BEST to you!
@@c849243 cheers big bear
In the States here. Watching your video. Appreciate your posting.I pretty much get the "see you in 6 months", on ADT, post radiation .06 PSA from a 4.7 4.7 not much but I had 21mm tumor plus some others.
Cheers Ed for watching across the pond. 6 months will be the standard NHS one but I will do privately after Xmas to keep an eye on. Cheers again for watching
@@neildavidson7768 you bet. Here's to our health.
I understand what you’re saying. I think the Olympian has it in the family and sounds a good idea for them to be tested. PSA isn’t very accurate? I’ve never had PSA because I’m needle phobic. MRI low but enough for me to have biopsy. They gave me a negative biopsy, with the proviso that there is a 20% chance of missing any cancer. So even the biopsy can miss 1 in 5 people who have cancer! You can see why they don’t want to test everyone’s PSA because they will end up doing loads of MRI and biopsy without being sure. How would you have coped if they told you there was a 20% chance they had missed any cancer? We have a friend who is stage 4. Take care of yourself.
thanks for update Neil; I'm in similar situation before radiation. Take much care.
can't see ya name but anything you want to know or ask please feel free
Glad everything is going well for you. Have a good time planning xmas . Take care xx
thanks very much julie for your continued support.
Glad everything is going well another great video have a great Christmas 👍
cheers Graham. yes happy with the private blood test but no so with Hospital, but there isn't no problem just thought they would be more professional in what they said.
You are doing ok if you are happy with what you are doing just do it. I was told i could go to ever 6months psa test after having 3 clear i said no and my last test back up to 0,20 and have to wait till i get back up to 0,40 this is after all the same as you have had . The doc said pet scan again and we will need to go and hit it hard. And get a psa test men i was fit and well had stage3tb prostate cancer at 53 . I will be 58 at xmas and this is a battle i will try my best to win.
Stage 3 tb what does 3tb stand for?
My diagnosis was gleeson 8 4+4 T3a NO MO had to have 18 months of hormone treatment and 20 radiotherapy sessions.
Every case is unique to the individual. Take care.
Oh I think I just understood your prognosis at the end of this video. And I made a few comments before I heard it. My bad I kind of understand. You are NOT doing poorly you're doing okay right? After radiation. And what kind of hormone treatments were you on Neil or still on.
andrew stick in there mate. Always here for a chat
stage 3tb means the cancer has spread from the prostate to the seminal vesicles or to nearby tissue or organs such as the rectum bladder or pelvic wall. Hope that helps
Thank you.@@neildavidson7768
As always very informative my dear friend i agree my locum oncologist as you know had a meeting lasting no longer than 5 minutes combined furious he could not even turn on the computer thankfully i kicked off and now under a great oncologist oh by the way literally just ordered a home kit going to give it a go if no joy might book northampton then go to costco have a fab weekend buddy 🔥🔥🔥
Hi Graham, I will be looking in January for somewhere near to us. Maybe Bury St Edmunds or Lowestoft will do one. Keep well mate
My doctor said my PSA could go up after all the intervention and time passed.
Good new Neil, take care , ken
cheers Ken, 1st xmas for 3 yrs no stress!
Hi Neil. I totally agree re the need for 2 decimal places. Fortunately my health authority in Hereford provide this level of detail so I can pop the numbers on a spreadsheet to see the trend. I know it can fluctuate a little for many unknown reasons, but a trend is a trend...
I am quite pee'd off by folk on the forum telling me not to bother about 'such small numbers'.
totally agree mate, it's all about the trend in the graph, as I said i'm in a better place this xmas because i can see my numbers going in the right direction. Cheers for the watch and comment
I’ve had radiation therapy for prostate cancer couple of years ago. Never heard of this decimal point talk with my oncologist! Surely anything below 1 or 2 is good!
Have that great Christmas you want Neil. Try to include a Christmas time walk video of Great Yarmouth next month. I suppose the decorations will look awesome all lit up after sundown 🎄. Greetings from Cape Coral, Florida, hurricane Capitol of the world.🌀😢
General, thats a great idea about Great Yarmouth, as you said i can enjoy Xmas for the 1st time in 3 years. Thanks for your continued support
I had an advanced stage of Lymphoma before the prostate fun. The Lymphoma almost killed me. Now I see the prostate stuff as a small inconvenience. Don’t make yourself crazy..you’re more likely to have a heart attack. Keep the body in good form. Regards from New England to Old England.
@@WalterThorne-h5k cheers Walter, I used to follow your patriots for a long time, but now prob the worst team in NFL!!!. This year nobody will stop the Lions. Cheers from this side of the pond
I agree that doctors need to work on their bedside manner. Maybe what the doctor means is that the second decimal place is less reliable or statistically insignificant no matter how it’s trending. Still when you told him about your private scores, he should’ve just said “that’s encouraging.”
exactly, i'm not a medical person but for my mental health 0.07 then 0.04 shows to me its going in the right direction. their scores of
Look at my records I had a 3.5 when I was 53 years old now I am 70 and my PSA is 9. 9! In all these years. Good thing I didn't get treated back when I was 52 years old.
9.9 still sound high unless you have a large Prostate!?
My psa was 7.0 aged 69 turned out I had aggressive cancer gleeson 8 4+4 had hormone for 18 months and 20 radiotherapy sessions
@@frederickrich7393 how are you doing now brother? With your prostate cancer after 20 radiology treatments and hormone. I am currently on Fulton radiology but I refuse the hormone treatments. That was my decision. I did a lot of research too. But how are you doing and how long ago was it your treatment.
Just relax Neil, take it easy. it is alike a chronic disease. trust your Drs and don't play a patient and therapist at the same time. Don't emphasize on little tiny changes in PSA dilemma... enjoy life man..! and yes I have Gleason 7 Ca..
You are so right about the mental health aspect. Doctor sounds very non-patient focused.
totally agree mate. If it wasn't for this private test that I fund then I wouldn't be in a better place today. they need to understand the patients concern rather than just being a number. not all doctors are like this and the one I saw a few days ago was new to me. Any positive i can find i will take a cling too. WASNT HAPPY MATE!!! and believe me i don't get wound up over anything, in actual fact it strives me on to challenge them more. cheers bud
@ you are doing a real service to share both the medical facts of prostate cancer and how to advocate for yourself in the “big medical machine” that is the often faced by us in the “cold and overburdened” health service. I find your courage to confront doctors and resistent bureaucracy in a gentlemanly way very inspiring. I also think it is so beneficial to us men that you discuss the mental health aspect of dealing with the “Big C”. The fear and uncertainty can undermine our ability to heal and thrive. Keep it up. You are making a significant difference!
cheer mate for such a lovely message. I think the problem here in the UK is that people of my age (54) shy away form the facts and are scared of the medical profession. i have done a lot of research about prostate cancer and when i go to see them i'm not scared because i can talk to a good level. They arent used to this as most people who go are aged 75 and just get fobbed off. I'd hate to think of how many people have been fobbed off in the past
@ you’ve found your mission or it has found you. You are providing a unique commentary on this disease and how the medical community responds and how it effects us as patients. Thanks so much Neil. You’ve become must watch UA-cam in my book.
Okay you said they should even lower the age for PSA test? If your PSA is a little high say three or four even the doctors will want you to do a biopsy! After that the one at MRI after that they'll say you should take some hormone treat ments after that etc etc etc You're right on the dog and conveyor belt! Plastic cancer is very slow growing and I wish I could do it over again and NOT take that PSA test. 1 and 1/2 years ago. Cuz all it brought me was anxiety and distress.
Tell Sir Chris Hoy that m8 , every cancer is different, aggressive Prostate Cancer needs to be treated before it spreads to the bones and organs!!
Hi Neil wishing you all the best what was the gleason score and psa before treatment and how about pet/ ct , psma
@@nassermurad1885 cheers bud for watching, can I just ask where you are watching from. Just interested where my little videos are reaching to. Gleason was 3+4 with a positive margin. Psa at start was 5.6.After operation it went to undetectable
@@neildavidson7768 Thank Mr. Neil for quick reply I'm from kuwait I had the same what you got gleason 3+4 PSA 11 but thanks god after psma , ct/pet scan cancer was only in the prostate after deep thinking I choose radiation+ hormontherapy for 6 months I had some problems with rectum bleeding now I'm ok PSA after 3 months of radiation was 0.09 after 6 months 1.25 and my doctor told me any number below 2.0 you are ok because I still have the prostate your number are very good I am VERY HAPPY for you
@@neildavidson7768Hi Mr.Neil I don't know if get my reply or not yesterday as I wrote I'm 62yrs my PSA 11 IN Nov 2023 Gleason 3+4 But the cancer has not spread outside the prostate gland.After deep research and thinking, I decided on hormone therapy and radiation therapy. I started treatment in March and three months later PSA 0.09 and 0.125 in October in my situation PSA should be below 2.0 as my doc. Told me.
Your PSA is great it's under control all the best to you and don't think too much
Oh I am from Kuwait
@@nassermurad1885 cheers mate I think my 1st viewer from Kuwait. I think it's about time I come over and made a travel vlog from there hehe
PSA testing was not encouraged but I insisted. It’s good to bring attention about about to PC.
What is a " NOR-Point " ?
Sorry mate I'm not sure what you mean. Did I mention this word in the video?
Nought means zero🙂@@neildavidson7768
@@neildavidson7768when you say the word naught it's very unusual
People in the states would be confused not knowing you mean zero
As you said imposable to get a psa test from your GP im nearly 61 only got a test two years ago as my wife asked my GP to do one as I have two brothers how have Prostate Cancer. I got a positive PSA of7 after lots of tests eventually got a biopsy and I had prostate cancer I still would not have had a test if my wife never asked for it I had no symptoms . Why is this yet they test all women for cervical cancer
100% colin, everybody thinks you get tested at 50!! load of old cobblers. I'm trying to get people to get testing via a different private test at a very affordable price of just over £20. Thanks for your comment mate
I still don't get it Neil. What is so negative that you wanted to talk about it My missing something. After radiation your PSA is 02 and you're worried? Please explain I don't quite understand why you're so concerned. Isn't it natural to have a little bit of PSA.
Ultra sensitive psa test below .01 would be what you want
Dr’s won’t take care of your best interest as you will. I was diagnosed with prostrate cancer in Oct 2024. I’ve seen about 9 dr’s to date. I’m driving the bus even if it goes off the cliff.
@@scotthunt9653 well said buddy,
Why does it take some one famous to get things done like Chris Hoye
It seems to me that a PSA test just means money to specialists. From Australian post code 2371
All confusing to me mate, thx for watching from down under. Have a nice summer
Sorry typo , good news
There is a lot of difference between 1.1 to 1.9 or 1.9 to 2.9 psa
exactly fred that was my point of the video. I can see my psa going in the right direction with 2 decimal places. cheers mate
Do you regret your prostatectomy?
No not at all, for me it's gone from the body hopefully with all the cancer with it. Mentally in much better pace knowing this. Appreciate you watching mate
Nice video interrupted by your cough!
Hi Neil, it would help me to understand why you have been undergoing radiation treatment so soon after prostatectomy if your PSA levels have been so low. Is there perhaps a video where you explain that?
Hi there mate. I will try explain. April 23 prostatectomy. 1st psa
@ Thank you for your quick reply Neil. And is the area being targeted for radiation the area where your prostate used to be?
@remco2777 yes exactly correct mate. They are confident that that area will capture the remaining cancerous cells. I done a video on the radiation I had, they even allowed me to film a session
I just completed 44 treatments of radiation. Just recently I have been experiencing urinary retention urge and burning sensation! Flomax seems to work at night which is the worst! I need to take two flomax's split 5 hours apart. I'm afraid to take both of them at one time. But they do seem to work I just hope and pray that the side effects won't.... Get worse! Any thoughts. You know answer treatment side effects getting worse. Which I suspect they will.
Don't forgot your friend this Christmas love hannah
@@kishy70 hauxy will be OK up there on the moors. Tough ole gal she will be fine
What about the hormone therapy the oncologist mentioned?
@@paulwoods84 never been on any hormone therapy Paul. I think oncologist just thinks everybody is on it after radiation. This was my argument he hadn't even looked at my notes
Doctors dont like you telling them
i think you're right mate. I've done a lots of research about Prostate Cancer and can hold my own big time with a conversation about it. I don't want to be treated as a number but as a name. He didn't even have my notes in front of him!!.The doctor could've turned round and said if it makes you feel better seeing this result to 2 decimal places then good for you, its your'e mental health. I even fund the private ones myself so it's no hassle to them. Cheers mate for your view and comment. and totally agree with your last comment about Chris hoy
@@neildavidson7768 I had mine out 6 years ago and mine has been going up slowly since next blood test December. Good luck mate keep strong
The reason the doctor said that it didn't matter and that you didn't need the more sensitive test was because even if the more sensitive test began rising you wouldn't do anything until it rose above "naught .1 " , or likely somewhat higher anyway .
Don't disagree with your comment, but if I was 0.07 in July after being 0.20 in may before radiation and my October one came back 0.09 then it's on the rise again. I would be looking at the next treatment sooner rather than another 6 months time which is when my app is. Who knows what the result would be and where it's spread to in 6 months. At least 0.07 to 0.09 shows something is not quite right. Also for me as I said its my mental health which is in a better place knowing and reading that the results are going in the right direction. I don't disagree with the medical science behind the psa results but I'm trying to look after my own health and asking questions. If you can get your mental health side in the right place then you are half way from winning the battle. I pay for the test not NHS and they should be encouraging people to do this.
a 55 year old friends psa was up dr said we will check in 3mo. and again even higher wait three more mo. higher yet my friend talked to a dr friend in neighborhood and he said run to oncologist they had to remove prostate. trust your gut educate yourself and get second opinions this is your life and you have most to lose
exactly right David, thing is in the UK you are just a number not a name and there isn't many early 50yr olds who challenge the system. Well i do!!!. I think my local hospital trust is sick of me at every meeting, but as you said it's my life and I'm trying to protect myself
Listening to your cough Neil should should take a Covid test?
fred i got a chest infection a few weeks ago and its probably still not gone
Take care Neil@@neildavidson7768