Hi from Hong Kong. I also underwent prostatectomy last April. Pathology reported 3+4 score with positive margin on both sides. The chance of getting a recurrence is always back in my mind. It was so nervous when have PSA tested every 3 to 4 months. Fortunately so far my PSA is still undetectable. I know it is a hard and long journey. I always told myself to be positive. I eat healthy - with a lot of salads and salmon and tooth fish and tomatoes and avoid stress. Do stay strong. We will win the battle
Thank you very much for watching from Hong Kong. I think your the 1st person to comment from the far east. Seems we have roughly the same diagnosis. Have hospital app on 19th March to discuss what's next. Thx very much for watching.
First, thanks for sharing your story/journey. Hearing other peoples first hand accounts is so helpful, to , I am sure, so many people. I am 60 and was diagnosed with prostate cancer several months ago, with a Gleason 4+3 and initial PSA of 8. Was able to get a PSMA pet scan while looking at all options for treatment. Good news is the scan showed Cancer was confined to prostate, bad news the (whole body Scan) showed I had a decent sized Aortic Aneurysm on my ascending Aorta requiring surgery. Had surgery to replace a section of my aorta just over 12 weeks ago, which delayed starting any cancer treatment. Ended up choosing 4 weeks (20 sessions) of Proton Beam therapy, without ADT at Loma Linda in Southern California, which I just finished a week ago. Won’t know, definitively, if this was the best route for several months (+). I can say prostate cancer saved my life, because I would not have discovered the aneurysm otherwise, and that would likely have killed me within a year or two. I have subscribed and hope to follow you as you beat this cancer
Alan many thanks for watching and a lovely comment. Thanks for subscribing to my little channel. I do enjoy doing this as it keeps my mind of what's going on inside. Wow you were lucky finding this medical issue. I hope all be well with you. I have another video coming out next week with another update what's going on. Have app with hospital to talk about radiation etc. To my suprise they are also doing a PET-CT scan on the same day. We don't normally scan in the UK until psa gets to 0.4. But they have agreed to do. I will update all next week
Evening Neil just in so tuned in to watch this update as usual done with honesty,candidness,humanly and informative.Your positivity is heart warming and extremely humbling.Anne and I wish you all the very best and keep the faith thinking of you pal.
Alan I always appreciate your kind comments mate. So thankfully for continual watching of my channel. Very grateful for my tenerife friends connections who have helped me so much. Thanks to yourself and the boss for watching. All the best
Thanks Neil for sharing. im the same age as you (53), had the same surgery 12 months ago following the same biopsy gleeson scores (3+4). Each 3 months ive had a follow up PSA test with stable
Hi, I've been fighting Prostate Cancer for 9 years. I was Stage T3B locally advanced in September 2014.. i had 37 sessions of External Beam radiotherapy in Leicester Royal Infirmary and ADT in 2015. I'm still here, I've got a bit of recurrence but I'm still living a fairly normal life and i have a CZcams channel but it isn't monetised and i haven't mentioned cancer on it yet. I tell jokes and go to car meets and festivals etc and play a bit of keyboard on it.. I've been considering putting a prostate cancer video out but i haven't yet.. if you have a recurrence, you need a whole body treatment like ADT . Disclaimer, i have no medical knowledge apart from having prostate cancer myself.. i don't feel ill. I have a few side effects from the ADT, I'm on Decapetyl and Enzalutamide now.. i never expected to still be ok 9 years later..
Neil your head must be boiled with all this but you are amazing to keep putting your personal information out there. It will definitely help other men watching. 👏👏
Yvonne thanks very much for your continued support. It's the not knowing the whereabouts of the reoccurrence is the issue. It's just a waiting game for me. All fine here and thanks again
Hi Neil - thanks for sharing this latest chapter of your journey. As others have said - factual, candid & balanced. Great to hear your story is reaching far & wide as well - the positive side of social media!!😁 I can only imagine what it feels like for you as it does seem you are living this chapter to chapter but in a positive, always optimistic manner. Keep on keeping on mate - keep us informed. Shared this too. All the best!! Col 🙏👍
Neil, huge thanks for sharing such a useful informations. You are a wonderful person in contributing awareness to the public re prostate issues. Your honesty revealing some of your experiences that you dealing with, thanks mate. Love from Malaysia.
Larry from Malaysia ( not jealous!), thanks for your kind words words mate. I tried to be honest and truthfully and hope somebody can gain a little something from my vids. Thanks for watching again mate.
Hi Neil, just finished watching this update. I'm sorry to hear it's just a waiting game for you , stressful. Well done for doing these vlogs, I'm sure it helps others going through the same. Take care
Thx Ali B, as always thx for following my journey. Yes the not knowing is the stressful part but heh ho need to get on with it. Doing CZcams takes my mind of things. Thx for ya support
Hello Neil, Thank you for sharing this information and I'm very sorry to hear you've had a biochemical recurrence (BCR). You're being very proactive and keeping close dialogue with your doctors, so you are doing everything possible to fight this. I'm in the USA, by the way. My journey started in 2005 at 49 yrs old. My PSA was 4.1. Cancer was confirmed via biopsy. I had a robotic prostatectomy. The post-surgical prostate pathology report revealed the cancer was a Gleason 7 (3+4), with negative surgical margins. All was well for a few years until I had a BCR in 2009 (PSA was 0.2 Oct 2009). It increased very slowly, life got in the way, and then in 2016, it reached 0.6, at which time I underwent salvage radiation therapy (SRT) without adjuvant treatment. My PSA steadily decreased following the SRT hitting a lowest value (usually referred to as the Nadir in radiotherapy treatments) of 0.028 in March 2021 (5 yrs after SRT). However, in June of 2022, it began rising again with a PSA result of 0.069, then 0.080 six months later. My most recent PSA in Dec 2023 was 0.132. Technically, I have not reached BCR yet following the SRT treatment, but I would say it is definitely imminent. Next PSA is in March. Be well, my friend. I will be following your journey.
100% thanks for taking the time in replying with your long comment. I read and take in everybody's message. I hope everything will be OK for you. Please keep me informed on your continued journey. Mine will be fine. Just sit n wait until the correct time to get a scan done. Many thanks again mate. Keep well
Neil, thanks for your very good presentation. I am on my 2nd BCR since prostatectomy September 2020. Relugolix and IMRT 39 treatments Spring to Autumn 2020. CDK12, CDKN2A and FOXA1 mutations. 2 weeks ago ended up in ICU with pancytopenia. Then readmitted 4 nights discharged a week ago tomorrow. Hopefully the bone marrow test next week will help determine the diagnosis and course of treatment.
Neil, as mentioned above I am in my SECOND RELAPSE since my prostatectomy in September 2020. The US, UK/EU, China and Australia/NZ all do things a little differently, both diagnostically and treatments. My hope is that you understand that different labs can have different results of PSA testing on the SAME TUBE IF BLOOD. Additional informative tests are Decipher (recognized worldwide as being very accurate for prognosis and some early research showing guiding treatments), Tempus-xT (Next Generation Sequencing -- testing for SOMATIC MUTATIONS), and Color (saliva testing for GERMLINE MUTATIONS). There is an informative online CALCULATION that you can do using your PSA results -- the MSKCC PSADT calculator. Another thing that may be of help -- using YOUR PATIENT PORTAL. Prostate cancer in nearly all men is very indolent and something they may die WITH. Prostate cancer is something that exceedingly rarely men die FROM (the cause of death). In your current situation you could still be CURED. I just looked -- there are 85 ClinicalTrials - dot - gov that are currently "recruiting" in the UK. That may be a way to help yourself and others.
Good evening Neil,had bladder and prostate cancer in 2022,very large tumor 5cm.in the bladder, tumor advanced into the bladder wall where there the doctor said it most be removed,so they gave me a cysectomy, after surgery and in ICU. I woke up finding out it had spead to the prostate, So to be shore the doctor took it out also.The doctor told me he thought that he was 90 percent shore he did get all of the cancer.This is 2024 and feeling pretty good, still in remission.Take one day at a time Neil,eat good and stay active you'll feel better.Praying for healings.🙏🇺🇸
Cheers Joe for taking the time to comment. I hope your recovery goes well. For me I have an app at the hospital on 19th March to discuss about next step with the oncology dept. Doing the CZcams videos help me keep focused on other things rather than what's going on inside. All well bud. Cheers for watching
Thanks Neil - appreciate you sharing your adventure. At Gleason 7 = 3+4 you will be just fine. IF repeat, IF you watch your weight and exercise, your prostate cancer will never be what kills you. Do your research and be your own advocate !! Best of luck.
Cheers landrover, appreciate your comment. I have app with oncology in March so we see what happens there. Prob just a chat and thats it until psa reaches 0.4. Thanks for watching
Hi Neil first of all thank you for your videos they have been very helpful. I hope everything goes well for you. I’m having my prostrate removed by Mr Illley on Monday once again thanks for videos
Graham many thanks mate for commenting. Tell him you watch my videos he will be well chuffed. He has encouraged me to continue doing these. Mr Ilie is a great guy and really helped me after the surgery. Many thanks again for watching. You based in Norfolk?
@@neildavidson7768 Hi Neil I am based in Norfolk just outside Norwich I was so glad to know I was going to get professor Illey I will mention that I follow you once again many thanks
Neil, my story is very similar to yours. I had Robotic RP last Apr in Canada. My PSA was .08 (2 mo), .07 (3 mo) then .09 at 6 mo. Just had a 9 month and it jumped to .14 so my Dr is handing me over to a Rad Onc. My Gl 7 (3+4) , T3a due to an EPE and a pos margin but nodes and SV were OK. No LVI but extensive PNI. Stay strong.
Wicker mate it sounds very similar, I have app at local hospital in march with oncology so keep watching for updates. Many thanks for watching the videos and commenting. Cheers bud
Hi Neil The anxiety is real , The waiting for psa results is stressful to say the least My last test went from 0.01 to 0.02 , im not to worried im told a small fluctuation is possible and they will continue to monitor . The ADT treament works well I did the 6 rounds of chemo , zoladex injections , nubeqa , zometa injections monthly for bones . Side effects sex drive is a thing of the past , fatigue, sore joints at times . My mental health is actually good i stay busy and the hormone treatments work . Nothing is good about cancer , positive note the Dr's and nurses are wonderful. Your news is not bad take it as a win You have time to wait on more results and stay positive . All the best Carmie from Canada . Many cancer patients get very limited time , im encouraged by the new developments in ADT treaments . I know things can go south quickly but go outside , look around , listen to your favorite tunes and hug your family and friends often . 🙂
Really big thanks for your long comment. It's great to see people taking the time out to comment on my videos and give brief explanation of your journey. Thanks very much Carmen.
Best of luck. It’s what we all fear My brother in law was able to add 13 years to his life by removing all stress and and only having positive thoughts (eg he never watched the news etc) as well as chemo occasionally etc. Even though he had his out like you and me, he caught it too late and it had spread to major parts of the body before the operation. Praying for you 🙏🤞
sorry for late reply Shaun. I will recieve my PET-CT scan results on tuesday and will share on youtube. Appreciate your comment and watching the video mate. take care
I had a situation myself where the number that was dropping suddenly upped and then dropped. About a year ago I was PSA 525. Over 12 months with hormonal therapy I dropped consistently down to .7. Then, 6 weeks later, for the first time, it rises to .9. At the time, I'd just had food poisoning and a lot of stomach trauma. Perhaps that explained the rise. Two weeks ago I tested again and PSA is now down to .4. I'm 61, metastatic, on Nubeqa and Orgovyx. Did have Lutetium (targeted radiation) over 36 weeks, cancer has significantly reduced, and I'm still very physically active. Thanks for sharing.
I suggest your brother does some research on having biopsies. Usually they take up to 12 random biopsies. The latest approach with a raised PSA is to have a high grade MRI plus a PSMA PET scan. Read and ask about the risks of biopsies. Biopsies are not taken from lung or kidneys. When you hear that doctors themselves commonly ask their consultant how they can avoid a biopsy it gets you thinking. Ask about the risk of spreading any cancer cells outside the prostate with having biopsies. There is no rush as PC is slow growing. You may opt for active surveillance. Read other posts you can get an insight into other men's experiences.
Thank you Neil I just finished my 28 treatments of IMRT Radiation Treatments and I’ll be receiving my second Lupron Shot tomorrow ADT. I be getting my first PSA results in March 18. Love you my friend stay strong fight the good fight! Thanks for all you do.
Cheers swifty I hope all goes well for ya mate. Enjoy doing the videos and I'm sure there's more to come. Doing CZcams have kept my mind focused on my next video rather than thinking what's happening down there. 1160 subscribers now and well chuffed. Stay strong mate
Hi from NZ. Just found your video. My partner 66yrs is at the same stage as you post RP (robotic 10/2022). PSA initially zero now creeping up. Same advice from private surgeon here-wait until PSA is 0.4 before PET scan. I have been watching UK and US sites and gathering info. Diagnostics and treatments changing quickly. UK Professor from ? London Uni hospital and US site PCRI specialist now say random biopsies no longer appropriate. Should first have a high grade MRI scan plus a PSMA PET scan pre any treatment. Biopsies and RP can seed cancer cells in other parts of the body. The positives are that men have time to wait before any treatment to do a lot of research. No rush despite just wanting it removed. Need to manage your own treatment plan. Gleason score determines if active survelliance is appropriate. AS is common for 3+3, 3+4. Heaps of men on AS. I feel we were on a conveyor belt and not given an holistic approach or other options available. Even tho not all treatments available in NZ be good to know about them. I have discovered that diet is very important wrt PC as well as regular exercise-brisk walking 3 hrs/wk or resistance exs. Plus stress reduction. Real food, low sugar, no alcohol, lots of cruciferous vegetables-aka Mediterrean diet. Little red meat, lots of oily fish, no processed meats. Vit D -level should be close to 100. I recommend your do lots of research on this as Vit D so impt for so many reasons.Men with low Vit D levels and/or who are overweight have higher risk of PC. Linked to insulin resistance. Foods good for the heart and brain is good for the prostate. Some men post RP/RT their PSA level plateaus but our surgeon could not say why this happens and what these men do differently. Not researched I imagine. Online testimonials tho. Drs get very little info on nutrition in their training and so is up to each person to research the latest info for themselves. Ultraprocessed foods to be avoided. Also a Scottish professor has strong observational studies re daily aspirin (reduces inflammation ) in preventing PC and used post treatment. No increase in severe GI bleeds than not taking aspirin. Partner is to start aspirin soon. Some questions for you to ask your Dr if not already done so. Hope this of some help. Thanks for doing the videos.
I never knew about the risk of seeding until after my partner's surgery. I heard it on a couple of channels one with UK Professor Mark Emberton UCL but now can't find it. Emberton's comments were about risk/benefit ratio of biopsies and the risks being greater. I understand in the US the latest guideline is also not to do biopsies or targeted biopsies of a lesion under MRI/US conditions . Check out this Q& A Prof Emberton very enlightening. He talks about the randomness of biopsies as well how some anterior cancers are missed. Biopsies also cause damage and inflammation and only a few cancer cells need to escape into the body. Can also happen at surgery and RT. On the US PCRI channel a scan showed a single metatase at the umbilicus area. Was unusual. The guy had robotic RP and the site of a growth was exactly at the incision site where one of the robotic arms had gone through. Depends on surgeon skill level as well. With the move away from random biopsies there must be enough evidence. Maybe look at recurrence rates post different treatments. As you have found what a health service offers is not necessarily the latest best practice but the 'standard of care' and cost is a big factor into what is offered. We are seeking a second opinion and keeping updated. Latest good news is the targeting of any metastases with focal RT.(PCRI) All the best for Neil. czcams.com/video/7mOvJbmpG6A/video.html czcams.com/video/CTYvk7qkLE/video.html
If the PSA rises above 0.2 then the limitation on detection seems to be the PET scan which has a resolution of 2-3 mm. However in Melbourne Australia we have installed (2022) a Quadra High resolution PET scanner which is 10x more accurate than conventional PET/CT scanners. I can only hope that this new technology will become widely available in the future.
Cheers for your comment cranky. You said about 2-3mm which rings true why on my pet scan it wasnt detected. Mine is 17mm. Had ct scan today for suspicious activity on the kidney. Keep well mate and thanks for watching.
Hi Neil. Similar story and counts. First PSA came in at .20. I did 40 radiation treatments and a six month shot of lupron.45. It's been a challenge but I got through it. My last PSA was undetectable. Best wishes
Cheers Antony for commenting. Have an app on 19th March to discuss what's next but looks like same as you. Good news for ya recovery mate. Can I ask where you are watching from?. Cheers bud
Neil, sorry to hear about your BCR. I'm several steps ahead of you in the same predicament. I was diagnosed in November 2010 at age 52 with a positive DRE and a PSA of 5.0 ng/mL. My biopsy Gleason came back at 3+3 and I opted for a radical prostatectomy in January 2011. The surgery went well and my prostate came out cleanly, meaning negative margins and no LNI, SVI, or ECE. My pathological Gleason was upgraded to 3+4 after surgery. My PSA returned in September 2015 at 0.05 ng/mL after being undetectable for 54 months, just short of the 5-year mark. My PSA bounced up AND down for about 15 months after it became detectable, so I'm not at all surprised that yours went down slightly. (Mine went 0.05, 0.04, 0.08, 0.05, 0.06, 0.08.) Because my PSA was bouncing around and because I was extremely reluctant to start any radiation therapy without knowing where the cancer was, we agreed to monitor my PSA over time without taking any action. Yes, it was unnerving going into each PSA test, as well as frustrating no knowing where the cancer was so that we could formulate a plan of action. Because my PSA doubling time (an important measure that you'll need to track) was in the 3 to 4 year range, we continued to monitor. It took almost 6 years for my PSA to hit the BCR threshold of 0.2 ng/mL in July 2021. For me, that was six years of no additional side effects from either radiation or ADT-six years of high quality of life. Like you, I wanted to get a PSMA PET scan to determine the cancer's location before blindly zapping and had one done on 30 November 2021 when my PSA was only 0.22 ng/mL. The results were inconclusive at that low PSA level. (Your doctor is right about holding off until a higher PSA to do the PET scan.) But then in early 2022, my PSA increases began to accelerate. From 0.22 in October 2021, it went to 0.26 in January 2022 and 0.33 in March 2022. With that change in behavior, I opted to go ahead with salvage radiation therapy with concurrent ADT even though we couldn't find the cancer's location. In late April 2022, my PSA was up to 0.36 ng/mL, and I received a single six-month dose of Eligard on 3 May in hopes that it would "soften up" the cancer for the radiation about 8 weeks later. I started 35 sessions of salvage radiation therapy to the prostate bed only on 7 July 2022; therapy ended on 26 August 2022. In September and November 2022, my PSA dropped to 0.05, mostly as a result of the ADT. The radiation oncologist said that it could take 18-24 months for the radiation to kick in and do its thing. In March 2023, the Eligard had worn off and my PSA was 0.13, well below the 0.36 when we started the radiation. In May, it dropped to 0.11 which we took as a good sign that the radiation may be working. Unfortunately, when we retested six months later on 31 October 2023, my PSA nearly doubled from 0.11 to 0.21. We decided to retest for confirmation and, five weeks later on 6 December 2023 it was up to 0.33 indicating the salvage radiation therapy likely failed, too. I had a bone scan (my provider's protocol was to do a bone scan before a PSMA PET scan) that came back negative. I went for another PSA test on 19 January 2024 and my PSA was 0.37 ng/mL, which was now slightly higher than the starting point of radiation. I had a second PSMA PET scan at 0.37 on 31 January and it, too, came back with "no evidence of recurrent prostate cancer or metastases." Again, this confirms what your doctor was telling you about PSMA PET scans. I knew going into both of them that there was a 40% chance of the scan detecting anything at a PSA
Many many thanks for taking the time to write your very detailed message. It's a complicated journey for all, I thought after my undetected psa 6 weeks after the operation all would be well. But obv not. I really appreciate people who comment to try help myself with my journey which looks similar to yours. I enjoy doing the CZcams and will check your podcasts out. Again thank you for your time and hope all works out well for you mate.
The surgeons always says they got it all. So often they don’t. Fortunately now you can get the radiation and ADT you should have had in the first place, and you wouldn’t have needed to bother with the prostatectomy. I did exactly the same thing, it’s quite common unfortunately. However I remain undetectable 4 1/2 years later so there’s that. Don’t forget to lift weights and get lots of cardiovascular exercise on the ADT. Great luck to you!
I totally understand your anxiety. I feel the same way. I was recently diagnosed with cancer reoccurrence with a prostate reading of .2. However, my healthcare provider here in the USA will not order a PSMA Pet scan until the reading is .5. I've read that waiting will significantly increase the risk of metastasis. I have an appointment next week with a radiology oncologist. I will ask his opinion on waiting. What have you heard about the risk of waiting? Thanks.
Hi there thanks for watching and commenting on the video. I can't believe it but I've got a PET-CT scan booked for next Tuesday. I thought it was just going to be a consultation but got a call yesterday and they said I'm booked in for 19th March. Still 0.2 PSA
Hello Often, when the prostate is removed, some prostate tissue remains in place, and this tissue continues to secrete PSA. I am not a doctor, but you are in good condition and there is no need to be afraid. Hope everything goes well
Appreciate your comment mate, yes I spoke to oncology yesterday and they will radiate the prostate bed in the next few weeks. Nothing showed up on the pet scan with psa 0.2 but I will get 20 zaps I April /May. Thanks for watching and commenting
Hi Neil. Don't know if my story will help - I guess we are all different. Anyway, 2021 PSA 10, during Covid, nothing doing. They said it was ok to wait and watch. July 2022 PSA 21 and everything started happening, scans tests etc. November 2022 had prostatectomy. Jan 23 saw surgeon expecting one and done, nut no, PSA was at 0.12. Watch and wait PSA every three months. October 2023 PSA had doubled to 0.24. Referred to Oncology and they said suspected spread to lymph nodes, but did not show on MRI so had PSMA PET scan Novemmber 2023 which found 3 lesions in lymph nodes. December2023 started ADT and they want me on that for six months and then 33 doses of radiation. I asked Oncologist were they hoping for cure or just slow down. He said they hoped for cure, but ADT would run for 2 years. Hope that might help a bit. This seeme to be the journey.
Hello I also had prostatectomy but I had pelvic lymph nodes removed, I see you had recurrencevin lymph nodes, were your pelvic nodes removed or is it other nodes if you know? cheers
@@nelsonoliva2119 Good morning. No, as far as I know no lymph nodes were removed. It was expected that prostatectomy would be enough, but it turns out that some cancer had already spread to pelvic lymph nodes but as I said was undetectable until later on and only the PSMA PET scan provided the answer. Now on on the treatment road, but not very pleasant. Waiting radiation in due course to hopefully finish it off. Hope this assists.
To help avoid this horrible disease REMEMBER: A happy prostate is a EMPTY prostate. 💦 Thats why it hits older less active people. Imagine a lymph node or a sinus that only gets drained twice a year & all the assorted nastys that would be in that fluid. Keep tour prostate working and empty it often 🙂
Hi Neil, I’m going for a PSA test on Tuesday, and very nervous. With me being 58, as you said, something I need to do, but I’m worried. Hope all goes well for you, your videos are very inspiring. God bless.
Vic so grateful for you watching mate. 58 is young mate, hopefully will all come back OK mate. Please keep me informed mate of result. Many thanks again
74 year old from Denver Colorado USA with similar story except Gleason 9. Inside prostate only, PSA undetectable after radical prostatectomy for one year and then 0.03 slowly rising to 0.11 this week. I'm scheduling radiation treatment prostate bed and pelvic lymph nodes. PSMA was neg. Radiology oncologist feels certain I have recurrent cancer and I have a chance to get treated now rather than wait for the cancer to move on. Also he agrees I can not add ADT and avoid all those life changing issues. We can always do that later. Seems like there is a big difference between USA and UK in terms of when to start treatment for biochemical recurrence
Frank thanks for commenting. Yes I think your right there is a difference between the 2 countries. Even our neighbouring county is different to whether we get the scan at 0.2 or not. I wanted a 2 decimal place PSA but my county doesn't do that also. We fight on brother. Keep well and thx for watching.
Hi been on this trip my psa went up to 0.52 over a year after having prostate out had a pet scan which showed nothing at all and was told this can happen psa went up to 0.70 so had four weeks off rad six months off adt all this was last summer my psa is 0.03 and is stable . My doctor is happy with that told me to go and get on with my life so that is what i am doing and if psa was to go again they have a plan.
Cheers Andrew for commenting, yes looks like I will be on that journey soon. It's just the waiting game that does me. I'm still waiting to hear back from my surgeon to see if I can have a pet PSMA scan now or have to wait until 0.4. Thanks for watching and taking the time to comment. Hope you keep well mate
Hi Steve, I've got a letter through today to say I have an app at my local hospital with the oncologist dep. Not really sure whether it's just a chat or something else.
Cheers for commenting, well I have a pet-ct scan next week which I'm suprised they are doing at 0.2. Hopefully something will show up and next treatment will happen. Appreciate you watching.
Hi my husband is going through same issue feb 15 under go prostectomy .. dr suggest follow up after 3 months followed psa test will hope for good praying
My husband had RP May 2022 his Was Stage 3 High risk very aggressive. He is 53 now and his PSA is rising. It is .22 now so we are awaiting another PSMA PET scan. He had one pre surgery ......so we are very worried! His was staying at 0.01 and jumped to 0.03 and 3 months later .22 😢
Tammy thanks very much for watching and commenting. Please keep me updated with husband's journey. I hope all be good, seems very similar to me. Appreciate your time.
Hi there Fred thanks for commenting. Answer to your question was basically 2 things, yes it was my age hopefully knowing that I should recover from incontinence quicker (all find after 1 month) + I just really wanted to get that thing out of me. Mentally after out I felt a lot better. Thanks for watching mate.
I was diagnosed in Jan 2021 aged 69 psa 7.0 gleeson 4 + 4 prostate 32cc 9 core biopsy of which 8 had cancer ,told not suitable for surgery because couldn't guarantee getting all the cancer, so went down the ADT hormone treatment for 18 months, had 20 radiotherapy treatments oct/ Nov 2021 psa level in Feb 2022 was 0.01 and testosterone 0.43, after hormone treatment stopped in May 2022 my testosterone now is back to 20.2 which is normal my psa had now gone up to 0.45, I have been told at my recent telephone conversation with the nurse the rise in Psa is due to my testosterone getting back to normal and because I still have a prostate it's still producing psa from the healthy cells, just hope that's the case. Thanks for all your interesting videos hope all goes well with you.
You have very little cancer as your scores are very, very low. It seems that you will have radiation and/or ADT. Had you opted for that originally, rather than surgery, you would have had that already and not have to undergo both surgery and radiation. Surely, your urologist did not offer you the radiation option originally. You will be fine.
It's something you can't just do David. You need to be refererred by your urology consultant. Luckily tomorrow morning I have got this scan although was told oncology would reject due to not being 0.4. They say 0.2 is right on the cusp of being detected by THE PET scan.
Hi from Hong Kong. I also underwent prostatectomy last April. Pathology reported 3+4 score with positive margin on both sides. The chance of getting a recurrence is always back in my mind. It was so nervous when have PSA tested every 3 to 4 months. Fortunately so far my PSA is still undetectable. I know it is a hard and long journey. I always told myself to be positive. I eat healthy - with a lot of salads and salmon and tooth fish and tomatoes and avoid stress. Do stay strong. We will win the battle
Thank you very much for watching from Hong Kong. I think your the 1st person to comment from the far east. Seems we have roughly the same diagnosis. Have hospital app on 19th March to discuss what's next. Thx very much for watching.
Finger crossed
First, thanks for sharing your story/journey. Hearing other peoples first hand accounts is so helpful, to , I am sure, so many people. I am 60 and was diagnosed with prostate cancer several months ago, with a Gleason 4+3 and initial PSA of 8. Was able to get a PSMA pet scan while looking at all options for treatment. Good news is the scan showed Cancer was confined to prostate, bad news the (whole body Scan) showed I had a decent sized Aortic Aneurysm on my ascending Aorta requiring surgery. Had surgery to replace a section of my aorta just over 12 weeks ago, which delayed starting any cancer treatment. Ended up choosing 4 weeks (20 sessions) of Proton Beam therapy, without ADT at Loma Linda in Southern California, which I just finished a week ago. Won’t know, definitively, if this was the best route for several months (+). I can say prostate cancer saved my life, because I would not have discovered the aneurysm otherwise, and that would likely have killed me within a year or two. I have subscribed and hope to follow you as you beat this cancer
Alan many thanks for watching and a lovely comment. Thanks for subscribing to my little channel. I do enjoy doing this as it keeps my mind of what's going on inside. Wow you were lucky finding this medical issue. I hope all be well with you. I have another video coming out next week with another update what's going on. Have app with hospital to talk about radiation etc. To my suprise they are also doing a PET-CT scan on the same day. We don't normally scan in the UK until psa gets to 0.4. But they have agreed to do. I will update all next week
Evening Neil just in so tuned in to watch this update as usual done with honesty,candidness,humanly and informative.Your positivity is heart warming and extremely humbling.Anne and I wish you all the very best and keep the faith thinking of you pal.
Alan I always appreciate your kind comments mate. So thankfully for continual watching of my channel. Very grateful for my tenerife friends connections who have helped me so much. Thanks to yourself and the boss for watching. All the best
Thanks Neil for sharing. im the same age as you (53), had the same surgery 12 months ago following the same biopsy gleeson scores (3+4). Each 3 months ive had a follow up PSA test with stable
Hi, I've been fighting Prostate Cancer for 9 years. I was Stage T3B locally advanced in September 2014.. i had 37 sessions of External Beam radiotherapy in Leicester Royal Infirmary and ADT in 2015. I'm still here, I've got a bit of recurrence but I'm still living a fairly normal life and i have a CZcams channel but it isn't monetised and i haven't mentioned cancer on it yet. I tell jokes and go to car meets and festivals etc and play a bit of keyboard on it.. I've been considering putting a prostate cancer video out but i haven't yet.. if you have a recurrence, you need a whole body treatment like ADT . Disclaimer, i have no medical knowledge apart from having prostate cancer myself.. i don't feel ill. I have a few side effects from the ADT, I'm on Decapetyl and Enzalutamide now.. i never expected to still be ok 9 years later..
Neil your head must be boiled with all this but you are amazing to keep putting your personal information out there. It will definitely help other men watching. 👏👏
Yvonne thanks very much for your continued support. It's the not knowing the whereabouts of the reoccurrence is the issue. It's just a waiting game for me. All fine here and thanks again
Hi Neil - thanks for sharing this latest chapter of your journey. As others have said - factual, candid & balanced.
Great to hear your story is reaching far & wide as well - the positive side of social media!!😁
I can only imagine what it feels like for you as it does seem you are living this chapter to chapter but in a positive, always optimistic manner.
Keep on keeping on mate - keep us informed.
Shared this too.
All the best!! Col 🙏👍
Finally got round to watching this…….You got this Boss 🥰 see you next week 🌞🌞🌞
Hang in there, Neil. I'm 5 years and 3 months out from when my prostate was removed for cancer. It is a journey. We are all with you.
Cheers for positive comment Charles, appreciate your time mate for watching.
Scary times again Neil but you need to live your life and be patient xxx. Your mic was good!
Neil, huge thanks for sharing such a useful informations. You are a wonderful person in contributing awareness to the public re prostate issues. Your honesty revealing some of your experiences that you dealing with, thanks mate. Love from Malaysia.
Larry from Malaysia ( not jealous!), thanks for your kind words words mate. I tried to be honest and truthfully and hope somebody can gain a little something from my vids. Thanks for watching again mate.
@@neildavidson7768 ❤️👍👍
Hi Neil, just finished watching this update. I'm sorry to hear it's just a waiting game for you , stressful. Well done for doing these vlogs, I'm sure it helps others going through the same. Take care
Thx Ali B, as always thx for following my journey. Yes the not knowing is the stressful part but heh ho need to get on with it. Doing CZcams takes my mind of things. Thx for ya support
Hello Neil, Thank you for sharing this information and I'm very sorry to hear you've had a biochemical recurrence (BCR). You're being very proactive and keeping close dialogue with your doctors, so you are doing everything possible to fight this. I'm in the USA, by the way. My journey started in 2005 at 49 yrs old. My PSA was 4.1. Cancer was confirmed via biopsy. I had a robotic prostatectomy. The post-surgical prostate pathology report revealed the cancer was a Gleason 7 (3+4), with negative surgical margins. All was well for a few years until I had a BCR in 2009 (PSA was 0.2 Oct 2009). It increased very slowly, life got in the way, and then in 2016, it reached 0.6, at which time I underwent salvage radiation therapy (SRT) without adjuvant treatment. My PSA steadily decreased following the SRT hitting a lowest value (usually referred to as the Nadir in radiotherapy treatments) of 0.028 in March 2021 (5 yrs after SRT). However, in June of 2022, it began rising again with a PSA result of 0.069, then 0.080 six months later. My most recent PSA in Dec 2023 was 0.132. Technically, I have not reached BCR yet following the SRT treatment, but I would say it is definitely imminent. Next PSA is in March. Be well, my friend. I will be following your journey.
100% thanks for taking the time in replying with your long comment. I read and take in everybody's message. I hope everything will be OK for you. Please keep me informed on your continued journey. Mine will be fine. Just sit n wait until the correct time to get a scan done. Many thanks again mate. Keep well
Neil, thanks for your very good presentation. I am on my 2nd BCR since prostatectomy September 2020. Relugolix and IMRT 39 treatments Spring to Autumn 2020. CDK12, CDKN2A and FOXA1 mutations. 2 weeks ago ended up in ICU with pancytopenia. Then readmitted 4 nights discharged a week ago tomorrow. Hopefully the bone marrow test next week will help determine the diagnosis and course of treatment.
Neil, as mentioned above I am in my SECOND RELAPSE since my prostatectomy in September 2020. The US, UK/EU, China and Australia/NZ all do things a little differently, both diagnostically and treatments. My hope is that you understand that different labs can have different results of PSA testing on the SAME TUBE IF BLOOD. Additional informative tests are Decipher (recognized worldwide as being very accurate for prognosis and some early research showing guiding treatments), Tempus-xT (Next Generation Sequencing -- testing for SOMATIC MUTATIONS), and Color (saliva testing for GERMLINE MUTATIONS). There is an informative online CALCULATION that you can do using your PSA results -- the MSKCC PSADT calculator. Another thing that may be of help -- using YOUR PATIENT PORTAL. Prostate cancer in nearly all men is very indolent and something they may die WITH. Prostate cancer is something that exceedingly rarely men die FROM (the cause of death). In your current situation you could still be CURED. I just looked -- there are 85 ClinicalTrials - dot - gov that are currently "recruiting" in the UK. That may be a way to help yourself and others.
Prayers to you Neil
Apprecaite it x
Good luck Neil i am going through the same reoccurrence but after 5 years got an appointment in April keep positive an strong
Good luck with your forward journey mate.
@@neildavidson7768 Thanks
Good evening Neil,had bladder and prostate cancer in 2022,very large tumor 5cm.in the bladder, tumor advanced into the bladder wall where there the doctor said it most be removed,so they gave me a cysectomy, after surgery and in ICU. I woke up finding out it had spead to the prostate, So to be shore the doctor took it out also.The doctor told me he thought that he was 90 percent shore he did get all of the cancer.This is 2024 and feeling pretty good, still in remission.Take one day at a time Neil,eat good and stay active you'll feel better.Praying for healings.🙏🇺🇸
Cheers Joe for taking the time to comment. I hope your recovery goes well. For me I have an app at the hospital on 19th March to discuss about next step with the oncology dept. Doing the CZcams videos help me keep focused on other things rather than what's going on inside. All well bud. Cheers for watching
Thanks Neil - appreciate you sharing your adventure. At Gleason 7 = 3+4 you will be just fine. IF repeat, IF you watch your weight and exercise, your prostate cancer will never be what kills you. Do your research and be your own advocate !! Best of luck.
Cheers landrover, appreciate your comment. I have app with oncology in March so we see what happens there. Prob just a chat and thats it until psa reaches 0.4. Thanks for watching
Thanks
Hi Neil first of all thank you for your videos they have been very helpful. I hope everything goes well for you. I’m having my prostrate removed by Mr Illley on Monday once again thanks for videos
Graham many thanks mate for commenting. Tell him you watch my videos he will be well chuffed. He has encouraged me to continue doing these. Mr Ilie is a great guy and really helped me after the surgery. Many thanks again for watching. You based in Norfolk?
@@neildavidson7768 Hi Neil I am based in Norfolk just outside Norwich I was so glad to know I was going to get professor Illey I will mention that I follow you once again many thanks
Neil, my story is very similar to yours. I had Robotic RP last Apr in Canada. My PSA was .08 (2 mo), .07 (3 mo) then .09 at 6 mo. Just had a 9 month and it jumped to .14 so my Dr is handing me over to a Rad Onc. My Gl 7 (3+4) , T3a due to an EPE and a pos margin but nodes and SV were OK. No LVI but extensive PNI. Stay strong.
Wicker mate it sounds very similar, I have app at local hospital in march with oncology so keep watching for updates. Many thanks for watching the videos and commenting. Cheers bud
Hi Neil
The anxiety is real ,
The waiting for psa results is stressful to say the least
My last test went from 0.01 to 0.02 , im not to worried im told a small fluctuation is possible and they will continue to monitor .
The ADT treament works well
I did the 6 rounds of chemo , zoladex injections , nubeqa , zometa injections monthly for bones .
Side effects sex drive is a thing of the past , fatigue, sore joints at times .
My mental health is actually good i stay busy and the hormone treatments work .
Nothing is good about cancer , positive note the Dr's and nurses are wonderful.
Your news is not bad take it as a win
You have time to wait on more
results and stay positive .
All the best
Carmie from Canada .
Many cancer patients get very limited time , im encouraged by the new developments in ADT treaments .
I know things can go south quickly but go outside , look around , listen to your favorite tunes and hug your family and friends often .
🙂
Really big thanks for your long comment. It's great to see people taking the time out to comment on my videos and give brief explanation of your journey. Thanks very much Carmen.
Best of luck. It’s what we all fear
My brother in law was able to add 13 years to his life by removing all stress and and only having positive thoughts (eg he never watched the news etc) as well as chemo occasionally etc.
Even though he had his out like you and me, he caught it too late and it had spread to major parts of the body before the operation.
Praying for you 🙏🤞
sorry for late reply Shaun. I will recieve my PET-CT scan results on tuesday and will share on youtube. Appreciate your comment and watching the video mate. take care
I had a situation myself where the number that was dropping suddenly upped and then dropped.
About a year ago I was PSA 525. Over 12 months with hormonal therapy I dropped consistently down to .7. Then, 6 weeks later, for the first time, it rises to .9.
At the time, I'd just had food poisoning and a lot of stomach trauma. Perhaps that explained the rise.
Two weeks ago I tested again and PSA is now down to .4.
I'm 61, metastatic, on Nubeqa and Orgovyx. Did have Lutetium (targeted radiation) over 36 weeks, cancer has significantly reduced, and I'm still very physically active.
Thanks for sharing.
many thanks for watching and commenting, i read everybodies comments and respect people for taking the time. hope all well for you carla
Good man my brother has it and he has to wait ages to get a biopsy done.hope U ok in the long run..
Thx for comment Patrick. I waited about a month. Hope all fine with brother. Thx for watching
I suggest your brother does some research on having biopsies. Usually they take up to 12 random biopsies. The latest approach with a raised PSA is to have a high grade MRI plus a PSMA PET scan. Read and ask about the risks of biopsies. Biopsies are not taken from lung or kidneys. When you hear that doctors themselves commonly ask their consultant how they can avoid a biopsy it gets you thinking. Ask about the risk of spreading any cancer cells outside the prostate with having biopsies. There is no rush as PC is slow growing. You may opt for active surveillance. Read other posts you can get an insight into other men's experiences.
Thank you Neil
I just finished my 28 treatments of IMRT Radiation Treatments and I’ll be receiving my second Lupron Shot tomorrow ADT. I be getting my first PSA results in March 18.
Love you my friend stay strong fight the good fight!
Thanks for all you do.
Cheers swifty I hope all goes well for ya mate. Enjoy doing the videos and I'm sure there's more to come. Doing CZcams have kept my mind focused on my next video rather than thinking what's happening down there. 1160 subscribers now and well chuffed. Stay strong mate
Hi from NZ. Just found your video. My partner 66yrs is at the same stage as you post RP (robotic 10/2022). PSA initially zero now creeping up. Same advice from private surgeon here-wait until PSA is 0.4 before PET scan. I have been watching UK and US sites and gathering info. Diagnostics and treatments changing quickly. UK Professor from ? London Uni hospital and US site PCRI specialist now say random biopsies no longer appropriate. Should first have a high grade MRI scan plus a PSMA PET scan pre any treatment. Biopsies and RP can seed cancer cells in other parts of the body. The positives are that men have time to wait before any treatment to do a lot of research. No rush despite just wanting it removed. Need to manage your own treatment plan. Gleason score determines if active survelliance is appropriate. AS is common for 3+3, 3+4. Heaps of men on AS. I feel we were on a conveyor belt and not given an holistic approach or other options available. Even tho not all treatments available in NZ be good to know about them. I have discovered that diet is very important wrt PC as well as regular exercise-brisk walking 3 hrs/wk or resistance exs. Plus stress reduction. Real food, low sugar, no alcohol, lots of cruciferous vegetables-aka Mediterrean diet. Little red meat, lots of oily fish, no processed meats. Vit D -level should be close to 100. I recommend your do lots of research on this as Vit D so impt for so many reasons.Men with low Vit D levels and/or who are overweight have higher risk of PC. Linked to insulin resistance. Foods good for the heart and brain is good for the prostate. Some men post RP/RT their PSA level plateaus but our surgeon could not say why this happens and what these men do differently. Not researched I imagine. Online testimonials tho. Drs get very little info on nutrition in their training and so is up to each person to research the latest info for themselves. Ultraprocessed foods to be avoided. Also a Scottish professor has strong observational studies re daily aspirin (reduces inflammation ) in preventing PC and used post treatment. No increase in severe GI bleeds than not taking aspirin. Partner is to start aspirin soon. Some questions for you to ask your Dr if not already done so. Hope this of some help. Thanks for doing the videos.
Where is the evidence of seeding due to prostate biopsy?
I never knew about the risk of seeding until after my partner's surgery. I heard it on a couple of channels one with UK Professor Mark Emberton UCL but now can't find it. Emberton's comments were about risk/benefit ratio of biopsies and the risks being greater. I understand in the US the latest guideline is also not to do biopsies or targeted biopsies of a lesion under MRI/US conditions . Check out this Q& A Prof Emberton very enlightening. He talks about the randomness of biopsies as well how some anterior cancers are missed. Biopsies also cause damage and inflammation and only a few cancer cells need to escape into the body. Can also happen at surgery and RT. On the US PCRI channel a scan showed a single metatase at the umbilicus area. Was unusual. The guy had robotic RP and the site of a growth was exactly at the incision site where one of the robotic arms had gone through. Depends on surgeon skill level as well. With the move away from random biopsies there must be enough evidence. Maybe look at recurrence rates post different treatments. As you have found what a health service offers is not necessarily the latest best practice but the 'standard of care' and cost is a big factor into what is offered. We are seeking a second opinion and keeping updated. Latest good news is the targeting of any metastases with focal RT.(PCRI) All the best for Neil.
czcams.com/video/7mOvJbmpG6A/video.html
czcams.com/video/CTYvk7qkLE/video.html
Keep up a strong plant based diet and grass fed beef, keep working out , and get good sunshine . You seem on top of your care.
If the PSA rises above 0.2 then the limitation on detection seems to be the PET scan which has a resolution of 2-3 mm. However in Melbourne Australia we have installed (2022) a Quadra High resolution PET scanner which is 10x more accurate than conventional PET/CT scanners. I can only hope that this new technology will become widely available in the future.
Cheers for your comment cranky. You said about 2-3mm which rings true why on my pet scan it wasnt detected. Mine is 17mm. Had ct scan today for suspicious activity on the kidney. Keep well mate and thanks for watching.
Hi Neil. Similar story and counts. First PSA came in at
.20. I did 40 radiation treatments and a six month shot of lupron.45. It's been a challenge but I got through it. My last PSA was undetectable. Best wishes
Cheers Antony for commenting. Have an app on 19th March to discuss what's next but looks like same as you. Good news for ya recovery mate. Can I ask where you are watching from?. Cheers bud
@@neildavidson7768 I'm from NY
A lot of my viewers are from across the pond. 46%. Many thanks to your countrymen.
Neil, sorry to hear about your BCR. I'm several steps ahead of you in the same predicament.
I was diagnosed in November 2010 at age 52 with a positive DRE and a PSA of 5.0 ng/mL. My biopsy Gleason came back at 3+3 and I opted for a radical prostatectomy in January 2011. The surgery went well and my prostate came out cleanly, meaning negative margins and no LNI, SVI, or ECE. My pathological Gleason was upgraded to 3+4 after surgery.
My PSA returned in September 2015 at 0.05 ng/mL after being undetectable for 54 months, just short of the 5-year mark. My PSA bounced up AND down for about 15 months after it became detectable, so I'm not at all surprised that yours went down slightly. (Mine went 0.05, 0.04, 0.08, 0.05, 0.06, 0.08.)
Because my PSA was bouncing around and because I was extremely reluctant to start any radiation therapy without knowing where the cancer was, we agreed to monitor my PSA over time without taking any action. Yes, it was unnerving going into each PSA test, as well as frustrating no knowing where the cancer was so that we could formulate a plan of action.
Because my PSA doubling time (an important measure that you'll need to track) was in the 3 to 4 year range, we continued to monitor. It took almost 6 years for my PSA to hit the BCR threshold of 0.2 ng/mL in July 2021. For me, that was six years of no additional side effects from either radiation or ADT-six years of high quality of life.
Like you, I wanted to get a PSMA PET scan to determine the cancer's location before blindly zapping and had one done on 30 November 2021 when my PSA was only 0.22 ng/mL. The results were inconclusive at that low PSA level. (Your doctor is right about holding off until a higher PSA to do the PET scan.)
But then in early 2022, my PSA increases began to accelerate. From 0.22 in October 2021, it went to 0.26 in January 2022 and 0.33 in March 2022. With that change in behavior, I opted to go ahead with salvage radiation therapy with concurrent ADT even though we couldn't find the cancer's location.
In late April 2022, my PSA was up to 0.36 ng/mL, and I received a single six-month dose of Eligard on 3 May in hopes that it would "soften up" the cancer for the radiation about 8 weeks later. I started 35 sessions of salvage radiation therapy to the prostate bed only on 7 July 2022; therapy ended on 26 August 2022.
In September and November 2022, my PSA dropped to 0.05, mostly as a result of the ADT. The radiation oncologist said that it could take 18-24 months for the radiation to kick in and do its thing. In March 2023, the Eligard had worn off and my PSA was 0.13, well below the 0.36 when we started the radiation. In May, it dropped to 0.11 which we took as a good sign that the radiation may be working.
Unfortunately, when we retested six months later on 31 October 2023, my PSA nearly doubled from 0.11 to 0.21. We decided to retest for confirmation and, five weeks later on 6 December 2023 it was up to 0.33 indicating the salvage radiation therapy likely failed, too.
I had a bone scan (my provider's protocol was to do a bone scan before a PSMA PET scan) that came back negative. I went for another PSA test on 19 January 2024 and my PSA was 0.37 ng/mL, which was now slightly higher than the starting point of radiation. I had a second PSMA PET scan at 0.37 on 31 January and it, too, came back with "no evidence of recurrent prostate cancer or metastases."
Again, this confirms what your doctor was telling you about PSMA PET scans. I knew going into both of them that there was a 40% chance of the scan detecting anything at a PSA
Many many thanks for taking the time to write your very detailed message. It's a complicated journey for all, I thought after my undetected psa 6 weeks after the operation all would be well. But obv not. I really appreciate people who comment to try help myself with my journey which looks similar to yours. I enjoy doing the CZcams and will check your podcasts out. Again thank you for your time and hope all works out well for you mate.
The surgeons always says they got it all. So often they don’t. Fortunately now you can get the radiation and ADT you should have had in the first place, and you wouldn’t have needed to bother with the prostatectomy. I did exactly the same thing, it’s quite common unfortunately. However I remain undetectable 4 1/2 years later so there’s that. Don’t forget to lift weights and get lots of cardiovascular exercise on the ADT. Great luck to you!
Cheers for comments Jim, I read all and take on board everybody's opinion. Thx very much mate.
I totally understand your anxiety. I feel the same way. I was recently diagnosed with cancer reoccurrence with a prostate reading of .2. However, my healthcare provider here in the USA will not order a PSMA Pet scan until the reading is .5. I've read that waiting will significantly increase the risk of metastasis. I have an appointment next week with a radiology oncologist. I will ask his opinion on waiting. What have you heard about the risk of waiting? Thanks.
Hi there thanks for watching and commenting on the video. I can't believe it but I've got a PET-CT scan booked for next Tuesday. I thought it was just going to be a consultation but got a call yesterday and they said I'm booked in for 19th March. Still 0.2 PSA
Hello
Often, when the prostate is removed, some prostate tissue remains in place, and this tissue continues to secrete PSA. I am not a doctor, but you are in good condition and there is no need to be afraid.
Hope everything goes well
Appreciate your comment mate, yes I spoke to oncology yesterday and they will radiate the prostate bed in the next few weeks. Nothing showed up on the pet scan with psa 0.2 but I will get 20 zaps I April /May. Thanks for watching and commenting
Hi Neil. Don't know if my story will help - I guess we are all different. Anyway, 2021 PSA 10, during Covid, nothing doing. They said it was ok to wait and watch. July 2022 PSA 21 and everything started happening, scans tests etc. November 2022 had prostatectomy. Jan 23 saw surgeon expecting one and done, nut no, PSA was at 0.12. Watch and wait PSA every three months. October 2023 PSA had doubled to 0.24. Referred to Oncology and they said suspected spread to lymph nodes, but did not show on MRI so had PSMA PET scan Novemmber 2023 which found 3 lesions in lymph nodes. December2023 started ADT and they want me on that for six months and then 33 doses of radiation. I asked Oncologist were they hoping for cure or just slow down. He said they hoped for cure, but ADT would run for 2 years. Hope that might help a bit. This seeme to be the journey.
Hello I also had prostatectomy but I had pelvic lymph nodes removed, I see you had recurrencevin lymph nodes, were your pelvic nodes removed or is it other nodes if you know? cheers
@@nelsonoliva2119 Good morning. No, as far as I know no lymph nodes were removed. It was expected that prostatectomy would be enough, but it turns out that some cancer had already spread to pelvic lymph nodes but as I said was undetectable until later on and only the PSMA PET scan provided the answer. Now on on the treatment road, but not very pleasant. Waiting radiation in due course to hopefully finish it off. Hope this assists.
@@shadowsonthecheap8361 I pray for a cure for you sir. This is a tough journey , hang in there.
To help avoid this horrible disease REMEMBER: A happy prostate is a EMPTY prostate. 💦 Thats why it hits older less active people. Imagine a lymph node or a sinus that only gets drained twice a year & all the assorted nastys that would be in that fluid. Keep tour prostate working and empty it often 🙂
Hi Neil, I’m going for a PSA test on Tuesday, and very nervous. With me being 58, as you said, something I need to do, but I’m worried.
Hope all goes well for you, your videos are very inspiring. God bless.
Vic so grateful for you watching mate. 58 is young mate, hopefully will all come back OK mate. Please keep me informed mate of result. Many thanks again
74 year old from Denver Colorado USA with similar story except Gleason 9. Inside prostate only, PSA undetectable after radical prostatectomy for one year and then 0.03 slowly rising to 0.11 this week. I'm scheduling radiation treatment prostate bed and pelvic lymph nodes. PSMA was neg. Radiology oncologist feels certain I have recurrent cancer and I have a chance to get treated now rather than wait for the cancer to move on. Also he agrees I can not add ADT and avoid all those life changing issues. We can always do that later. Seems like there is a big difference between USA and UK in terms of when to start treatment for biochemical recurrence
Frank thanks for commenting. Yes I think your right there is a difference between the 2 countries. Even our neighbouring county is different to whether we get the scan at 0.2 or not. I wanted a 2 decimal place PSA but my county doesn't do that also. We fight on brother. Keep well and thx for watching.
Hi been on this trip my psa went up to 0.52 over a year after having prostate out had a pet scan which showed nothing at all and was told this can happen psa went up to 0.70 so had four weeks off rad six months off adt all this was last summer my psa is 0.03 and is stable . My doctor is happy with that told me to go and get on with my life so that is what i am doing and if psa was to go again they have a plan.
Cheers Andrew for commenting, yes looks like I will be on that journey soon. It's just the waiting game that does me. I'm still waiting to hear back from my surgeon to see if I can have a pet PSMA scan now or have to wait until 0.4. Thanks for watching and taking the time to comment. Hope you keep well mate
Neil...PSMA test, can you get one ?
Hi Steve, I've got a letter through today to say I have an app at my local hospital with the oncologist dep. Not really sure whether it's just a chat or something else.
Get an appointment at Dr. Datolli in Sarasota, Florida.
Cheers, might be a little to far to come from the uk
In 4 years I had rt 4+5 Gleeson 12 testosterone treatment just come off it law going up to .2 it is a very worrying time I know good luck
Cheers for commenting, well I have a pet-ct scan next week which I'm suprised they are doing at 0.2. Hopefully something will show up and next treatment will happen. Appreciate you watching.
You should try curcumin it did take down my PSA from 6.1 to 4.9 .
Cheers lars will look into it. Thx for the comment mate
Hi my husband is going through same issue feb 15 under go prostectomy .. dr suggest follow up after 3 months followed psa test will hope for good praying
Hope all goes well with operation. Stay positive and all will be good. Keep me informed please.
My husband had RP May 2022 his Was Stage 3 High risk very aggressive. He is 53 now and his PSA is rising. It is .22 now so we are awaiting another PSMA PET scan. He had one pre surgery ......so we are very worried! His was staying at 0.01 and jumped to 0.03 and 3 months later .22 😢
Tammy thanks very much for watching and commenting. Please keep me updated with husband's journey. I hope all be good, seems very similar to me. Appreciate your time.
When you say " Noor" , are you saying "point" ?
boy my friends prostate cancers returned
i hope all be well gboates
Hi Neil just wondering why you chose surgery? With gleeson 3+4 / 4+3 , and didn't chose hormone treatment + radiotherapy? Was it your age?
Hi there Fred thanks for commenting. Answer to your question was basically 2 things, yes it was my age hopefully knowing that I should recover from incontinence quicker (all find after 1 month) + I just really wanted to get that thing out of me. Mentally after out I felt a lot better. Thanks for watching mate.
I was diagnosed in Jan 2021 aged 69 psa 7.0 gleeson 4 + 4 prostate 32cc 9 core biopsy of which 8 had cancer ,told not suitable for surgery because couldn't guarantee getting all the cancer, so went down the ADT hormone treatment for 18 months, had 20 radiotherapy treatments oct/ Nov 2021 psa level in Feb 2022 was 0.01 and testosterone 0.43, after hormone treatment stopped in May 2022 my testosterone now is back to 20.2 which is normal my psa had now gone up to 0.45, I have been told at my recent telephone conversation with the nurse the rise in Psa is due to my testosterone getting back to normal and because I still have a prostate it's still producing psa from the healthy cells, just hope that's the case. Thanks for all your interesting videos hope all goes well with you.
Again Fred thanks for your comment. Can I ask where you are watching from. I hope all be OK with you mate and I'm sure it will. Thx again
Sunny Worthing [ sometimes]@@neildavidson7768
Christ my Gleason score was 9.8😂 and my psa was 80.😢
9.8?, u mean 4+5 or 5+4?. And that's before any treatment? My 0.2 is after the prostatectomy
.2 seems very low for post surgery
its still the sign for a reoccurence.
@@neildavidson7768 yes, but maybe not a serious reoccurrence, at least not yet
I hope not mate,
We or I?
We
How much to go private prostectomy
John to be honest I really couldn't answer that question. I could find out here in the UK but I'm under the NHS
Okay thanks
Get another booster, that'll do it 💉💉💉💉💉💉
You have very little cancer as your scores are very, very low. It seems that you will have radiation and/or ADT. Had you opted for that originally, rather than surgery, you would have had that already and not have to undergo both surgery and radiation. Surely, your urologist did not offer you the radiation option originally. You will be fine.
Cheers for comment and advice Robert. Appreciate it
Why not get a PSMA straight away. This is ludicrous mate!
It's something you can't just do David. You need to be refererred by your urology consultant. Luckily tomorrow morning I have got this scan although was told oncology would reject due to not being 0.4. They say 0.2 is right on the cusp of being detected by THE PET scan.