I Completed Radiation for Prostate Cancer Radiation Recurrence, and Now I Get My Mojo Back

[@Tony-d5t]

Thank you mark for all your advice and positivity for those of us going through prostate cancer!

[@MikeWonderly]

Thank you for sharing Mark. God Bless You. I hope all goes well. I had my prostate removed Feb. 2024. So far so good. Interesting you had PSA tests every 3 months. I have had PSA tests every 3 months up to this point Nov. 2024. My doctor wanted to change it to every 6 months. I said no I want to stay on every 3 months. She agreed to do it. If I have a reoccurrence I want to know sooner than later to get a handle on it.

[@dansjourneythroughprostate5665]

Congrats on completing the radiation. Our stories are similar, and I'm about 2 years ahead of you. I was diagnosed in November 2010 at age 52 with a PSA of 5.0 ng/mL and a Gleason 3+3 with a palpable tumor on the digital rectal exam. I underwent a radical prostatectomy in January 2011 that went well. The prostate came out cleanly-negative margins, no lymph node involvement, no seminal vesicle involvement, no extra capsular extension, nothing-and my Gleason was upgraded to a 3+4. I went 54 months with an undetectable PSA post-surgery, and was eagerly waiting to cross the five-year threshold, but my PSA became detectable again at 0.05 ng/mL in September 2015. Of course, that sent me on an emotional roller coaster, and we continued to monitor my PSA. It bounced around between 0.04 and 0.08 for nearly 18 months before finally beginning a steady upward climb. My PSA doubling time (PSADT) was measured in years, and it took until July 2021 for it to climb to 0.2 ng/mL, the traditional definition of biochemical recurrence. At that point, I knew that salvage radiation therapy (SRT) was in my future, but I really didn't want to zap blindly so I went for a PSMA PET scan at UCLA in November 2021 shortly after they earned their FDA approval. My PSA going into the scan was 0.23 ng/mL and the scan was inconclusive. By April 2022, my PSA increases were accelerating and my PSA was now at 0.36 ng/mL, I started a six-month dose of Eligard (Lupron) on 1 May 2022 and went through 35 IMRT sessions to the prostate bed only in July and August 2022. The Eligard knocked my PSA down to 0.05 ng/mL again. In March 2023, 7 months after the SRT ended and the Eligard had worn off, my PSA was 0.13. In May 2023 it dropped slightly to 0.11, indicating the SRT may be kicking in. Unfortunately, by October 2023, my PSA was at 0.21 and, six weeks later in December 2023 after a confirmatory test, it was up to 0.33. All of this indicated that the SRT failed, too. In January 2024, my PSA rose to 0.37 ng/mL, and we did another PSMA PET scan which was also inconclusive at that PSA level. By May 2024, my PSA was 0.52, the highest it's been since surgery or radiation. The medical oncologist and urologist were in agreement to watch it for another six months-I go for another PSA test next week-and then map out a plan from there. Interestingly, the medical oncologist said we wouldn't start ADT until my PSA hit 2.0 and the urologist said we'd wait until there was evidence metastases. I believe the urologist didn't want to start the ADT too early, fearing it might accelerate ADT resistance. I know you had proton radiation and I had IMRT, so there may be some differences. About 5 months after SRT ended for me, I had a noticeable change in my bowel patterns that lasted for about 2 months and then eased up. (I went from one BM a day to 3-5 BMs a day. Two years later, I'm back to 1-3 BMs a day.) I hope your SRT "takes root" and you don't have a second recurrence and that any delayed long-term side effects are minimal. Like you, I've been sharing my story since the beginning via a blog (link in profile) because it's important for other patients to have insights into first-hand experiences. All the best.

[@naderzekrya5238]

Thank you for your helpful story + detail. I had a prostatectomy Feb 2024, psa was at 0.04 immediately after op. By September psa rose to 0.47. Now I'll be having adt + radiation although the PET scans showed nothing! They're gonna go for the "prostate bed" area. Cheers + Happy Continuations...

[@michaelcasey6546]

Hi Mark, firstly congratulations on completing your radiation treatment and hopefully now you can move on with your life. I am embarking on my own prostate cancer journey. I'm 52 so I'd imagine our ages are not to far apart. I was diagnosed with gleason 7 (3 +4).so I'm being lined up for radical prostatectomy ( da vinci style) in the coming weeks. I have followed your journey and I just wanted to say thanks for sharing your experience with us. I'm heading into the unknown and I guess that is quiet scary but your journey has given me a great insight into the road ahead and while every patient of course is different the doctors nowadays have so many ways to treat this disease and for those even who aren't cured they can keep the disease in check for many years so there is a lot to be optimistic about. I sincerely wish you Mark and your family many more years of health and happiness.God bless you.

[@MM-sf3rl]

I’m sorry to both you, but I wonder why radiation with 3+4 when there are many types of ablation therapies available. Favorable 3+4 or Unfavorable 4+3 are successful treated with many ablation technologies. Probably a very good reason you’re going in that direction.

[@ricknowak4582]

@@michaelcasey6546 you said you had Gleason 7. How many cores? That's very important. You mentioned the one but I like to know how many more. And what was the volume on that 3 + 4? The four. That too is very important. If you had one core that was Gleason 7 with low volume you shouldn't do anything bro. That's my opinion. Don't let these doctors put you in a panic mode. I could be wrong but I sure would like to know how your biopsy actually read.

[@WhatsYourPSALevel-dn3jg]

This was great! I'm 63 years old and had a proctectomy too almost 2 years ago. PI-RADS level of 5, Gleason levels of 7 and 8. As of now my PSA is at 0.08. Its possible that I may have a reoccurrence, but I'm glad I saw this video.

[@carladerenzy3674]

Congrats on where you're at, Mark, and congrats on the last Orgovyx. My PSA was 525, which was terrifying at the time, so I went on Orgovyx, Nubeqa (both ADT's), and Lutetium (liquid targeted radiation) (6 sessions 6 weeks apart). I didn't have prostetectomy. Now, 18 months later, PSA is .1, cancer, which had metasticized, has gone, and I'll continue on ADT's for a while longer. I NEVER lost libido at all and haven't had much sexual dysfunction, either. Gained no weight. Have exercised like a maniac, eaten extremely well and carefully, and supplement with a few things. Thanks for sharing YOUR story.

[@johngrimkowski598]

yessssssssssss

[@janhertzberg1797]

Mark, Best of luck always. I so admire your tenacity and care for others.

[@PeteMartin-r6l]

Mark,thanks for your podcast ; your positivity and optimism is inspiring . Good luck for the future….. I hope I can maintain a similar approach on my own journey. Many thanks again.

[@fernandonieblas1879]

Thank you for hope!!!

[@mademoisellem3529]

Thank you for sharing your journey. My husband seems to be in the same situation. 2019 surgery and slowly creeping PSA, now 0.27. He has learned a lot from your videos, and we are grateful for your positive outlook. Greetings from Australia.

[@mt-mg7tt]

Hi Mark, it's great to hear your good news! Best of luck! As someone who went through surgery, it has been very worthwhile to watch your podcasts, which are thoughtful, careful about correct information, and interesting.

[@RonDupree-g6l]

Thanks for the info, starting this process next month now I have a idea what I’m going through

[@billyjohnson9166]

Thanks for your video. It gives me peace of mind.

[@markwatson7515]

Great to hear where you are, Mark. Here's to a long and little c free life!

[@josko42]

God bless you Mark!! Thank you for all your help from all of us!!

[@johngrimkowski598]

My boy Mark so glad you are doing well.

[@rosemary123abc]

Thank you Mark. Your spirit shines through. I'm beginning my own Journey.

[@dr8ke.k500]

You are Blessed to be able to afford and have access to good health care, many are not as fortunate.

[@economyheating]

I pray that you get a chance to access great medical care!

[@mikefarrell9163]

Thanks for sharing. I wish you the best. I appreciate all of your videos. I had the prostatectomy 2 years ago.

[@7teteio]

Congrats Mark, god bless you.

[@warrenmaralit2461]

Hi Mark , Congratulations ! 3 bell rings... 😅. I have my radiantion treatment was completed also. I've been on Endrolin as quarterly injection and 2nd Generation Apalutamide [Erleada] for daily take, however, the PSA still rising. Btw, I underwent RP last 2020 and since then I've been your your follower. Did you have the PET Scan before the Radiation? I have mine and seen the recurrence in the urethra , where the connection was done... What is your PSA Level now?

[@ss220astro]

Congrats! Thanks for sharing your experience.

[@MitchKonatsu]

Congratulations Mark!! Thanks for sharing your experience. I’m currently taking Lupron and will start my radiation treatment in early October. I hope my treatments go as smoothly as yours did!!!

[@DavidWright-sn4tu]

Welcome back!!!! All the best going forward

[@joeax61]

Hey Mark, glad to hear you are doing well after ADT and radiation. Very happy for you as you look towards a healthy future. Thank you for sharing your story, and keep up that positive attitude! (I am 5 months post surgery, GG4, GS 8, and pT3aN1from the path report. 1 clean PSA so far, next one coming up soon)

[@enniscollado202]

Good luck Mark….blessings thanks for sharing…I really hope you’re cured😊

[@Man-j4s6b]

Thanks a lot, Mark, and congrats. Your comprehensive report helped me a lot!

[@DanielLee-km9sl]

Thanks Mark for your detailed explanation of your experience. I’m lucky to live only 10 miles from MD Anderson in Phoenix, Arizona and have had excellent care during the past year. My PSA was initially very high.I had the biopsies, started on Lupron 3 month infusion and pills, PSA down to non detectable, radiation treatments, etc. I’ve had all of the side effects you mentioned and will continue for another year of 3 month follow-ups with blood tests, pills and Lupron infusions. I’m 82 years old and it’s so important to a great support group, positive attitude and remain active.

[@rickywebb5726]

Thanks mark

[@frederickbolton268]

Very informative!

[@davidheaver2854]

Great stuff Mark. I finished my radiotherapy in July using a Varian Truebeam machine. Another awesome bit of kit. Just 20 sessions for me. ADT is in it's 2nd round and I'm hoping to move to 3 month shots in January. It's true the end is bittersweet and I do miss the support from our excellent NHS staff here in the UK. Still, up and onwards. I'd show you may bell ringing video but not sure how to attach it here. Be safe. David

[@ricknowak4582]

David did you have the space -oar inserted prior to radiation? The protective gel between your .... Rectum and prostate? If so was it painful? And did you have general or local for the procedure.

[@davidheaver2854]

Hi Rick. No, none of that but then we all followed a strict protocol an hour before each radiotherapy session of ensuring the rectum was empty and the bladder comfortably full. I had a prescription of micro enemas for most of the course and inserted one as soon as I got to the cancer centre. It then did its job and after a number of toilet visits I would then move onto drinking quite a lot of water quickly to ensure bladder fullness. You have to generally ensure you are hydrated, so lots of water and I gave up alcohol and moved to decaffeinated tea. Both parts of the protocol are to ensure that both bladder and rectum are pulled away from the prostate to avoid extraneous dosing. I was pleased how many times I ace'd the protocol, but other times the ultrasound scan showed the bladder was often not full enough ( so drink more) or too full ( so wee into a cup to this level. So hard to do!). Once all that was completed then the radiotherapy could start. I twice failed from rectal gas which only shows up on the CT scan taken before each session, so off to the toilet again, but that was rare. Then the radiotherapy was just 10 mins or so on the table. Like yours, the Tru Beam machine does a couple of 360 circuits around the carbon fibre table. It uses the CT scan to match against the planning CT scan, ensuring positional alignment is correct. My doses were a standard 6Mev each session. Overall it was good. The most uncomfortable part of the whole cancer journey so far was the transperineal biopsy. It felt like being stapled and took a couple of weeks before walking discomfort passed. But that's all done now and I'm soon to start PSA tracking. I want to move to 3 month ADT to make it more agile and responsive to PSA results, so I'll see how that discussion goes. I'm not paying for this if course so probably have a little less control than US direct payment but I wouldn't swap 😀. Anyway, great video series and I hope your recovery is fast. Keep in touch if you want. All the best David

[@ricknowak4582]

@@davidheaver2854 David thank you for your reply to my comment. Question. Micro enemas? I tried three times to use a fleet enema with no success! I can't seem to get the nozzle all the way in and when I did get it in I had a hard time squeezing The liquid out! I am very stressful over this procedure. I go regularly in the morning. Three times before I leave the house. But if I only go twice I know I have some more in me which is going to cause the problem later in the day when I go to have my radiation. I'm pretty sure anyway That's when the ENEMA we'll have to be used. I'm beginning to think I need to get a different kind of enema. The fleet enema isn't cooperating. Comments? This enema thing is causing anxiety.

[@odysseasmichanetzis6545]

Hi David, thanks for sharing your story. Wish everything goes well! One question please, if you don't mind, I may need to get radiation after my prostatectomy 1.5 years ago. My urologist says that radiation will cause incompetence for sure. Can you please tell me if that is right or not? Thank you so much, wish you all the best.

[@davidheaver2854]

@@odysseasmichanetzis6545 I have had very very mild symptoms myself, but it is better to describe them as increased urgency and frequency than incontinence itself. But that said I'm getting through much more laundry than before, I've just avoided any really significant leakages.

[@swimfit57]

Congratulations

[@mafeabiodunrasheed9803]

Congrats

[@jlu72665]

Mark when you had your RRP did your pathology report any positive margins?

[@ivanatikhanoff8789]

My husband had a prostatectomy on the 3rd of March in Athens Greece where we live. Unfortunately we are struggling with urethral stenosis that is destroying us. He had an optical urethrectomy on the 26Th of July the benefits of which only lasted for 2 weeks and now we are back to square zero. It’s so discouraging and despairing. It could have been caused by the catheter. I really don’t know. I wonder if anyone knows about urethral stricture. So glad to read that you are doing well Mark. God bless you.

[@BlueFlame-q6s]

He can get pills to relax the pee tube and aid urination.

[@beobeo2344]

Mark -- thank you for the video's they are very informative and gives us questions to ask my husband's urologists. My husband had his prostate removed 4 months ago. Unfortunately, his PSA did not go to 0.0 it is 0.38. Just met with Urologist and are now being referred to a radiation oncologist for next step. Recommendation from him was 6 weeks of radiation therapy around the area where the prosate was. My husband is concerned of incontinence and involuntary bowel movements. You do not mention if you had any issues with incontinence or involuntary bowel movements during or after your radiation. Can you please advise on this. Truly grateful for your messages. Bless you.

[@burtoncarlisle4810]

Thanks Mark for sharing your story… did you get a bone density test before starting Orgovyx and did you take any of the bone lose injections such as Prolia???

[@warrenmaralit2461]

Hi Mark, hope you can provide some clarifications. 1. Are still taking up Orgovyx?

[@acklinomics]

Mark, thanks for sharing! I had radical prostatectomy surgery as well 15months ago. I was diagnosed at 43yrs old, I’m now 44yrs old. Question for you; what was your post surgery biopsy results? Was there negative margins in the capsule or was your cancer on the surface or outside the capsule (positive margin)? Thanks in advance for your response.

[@alanaldpal950]

I completed 40 treatments in 20 visits of Proton Beam surgery, earlier this year at Loma Linda Hospital in SoCal. This was done with No ADT or other meds or injections. There is some debate as whether hormone therapy is necessary with Proton Beam therapy. I guess time will tell how this goes but so far so good.

[@alanaldpal950]

Mark, I Forgot to say congratulations on getting through this and thank you for all your videos. Did you join the “brotherhood of the balloon” ? And are you going to cover that it a future video?🙃

[@dr.mickeyjones5822]

I completed 28 sessions of Proton Therapy w/o ADT...What was your PSA 3months post treatment of 40 sessions?

[@alanaldpal950]

​@@dr.mickeyjones5822 dropped from around 10 to 4. As you know with successful radiation there can be a long gradual (not straight line) decline in PSA numbers, even if all the cancer is either killed or remains but is unable to replicate. May take a year or more to get all the way down and there can be bump ups in the score that are not or may not be an issue.

[@odysseasmichanetzis6545]

Hi Mark, hope you are doing fine. Are you planning of any new video and update? Cheers!

[@Scottieboy23]

Mark I had my prostate removed yesterday. I watched your day after surgery video. You didn’t seem to be having much pain in your abdomen, but I am suffering terribly. I can hardly breathe the pain is so bad. Meds aren’t helping. This is a horrible experience!

[@ricknowak4582]

I've watched all of your videos Mark and some...TWICE!! I am going for my simulation in 3 days and treatment starts maybe in 2 weeks (radiation photon)! I just hope I don't have any regrets taking photon over proton Mark. Since I been diagnosed I have researched and I chose PHOTON radiation BUT PROTON was my number one choice. . Here near Boca Raton Florida. I guess the reasons why I chose photon was convenience. I liked the oncologist, too..Proton was not THAT much further away. That is the reason why I'm saying I hope I don't have any regrets! But I refused ADT. I did a lot of research and as you say... " Lowering testosterone is not proven". I am considered ( almost). " Unfavorable" . Gleason 7 in 5 cores. Only in capsule. I had two biopsy opinions on the original biopsy and both came back ... DIFFERENT!! One has low volume (5%) on the 3 + 4 and the other one ( John Hopkins) came back 40%!! Made things very stressful for me. One question Mark : did you have the spac-oar inserted? If so was it a general or was it done local. Can you please tell me if it was painful etc. oh wait! You had a prosectomy so maybe you didn't need it! I'm eating extremely healthy (no cereal no sugar no milk etc.) Play tennis almost everyday! Lost 15 lb.

[@MM-sf3rl]

May I please ask why you are choosing radiation with 3+4 when there are many excellent ablation therapies?

[@ricknowak4582]

@@MM-sf3rl I

[@ricknowak4582]

@@MM-sf3rl I had four cores 3 + 4 with a high volume. One core was 4 + 3 with low volume on the four. 10 samples. Perineal invasion and a pirad 5 lesion. Believe me I researched and saw four doctors trying to avoid any treatments. But all the doctors said that I.."NEED treatment".

[@MM-sf3rl]

@@ricknowak4582 I understand and agree. Thank you for your consideration in answering me. I hope everything is working out for you.

[@lokmanmerican6889]

How can a prostate-specific antigen appear in the blood after the prostate is removed? Can those antigens be produced by something else?

[@simonjusticier333]

The presence of cancer cells is what produces the PSA (antigens), not the prostate itself.

[@iggy9651]

Hi Mark how can you workout vigorously if you have low testosterone don’t you feel exhausted?

[@wasuppa]

Thanks, Mark! I'm 77 and pretty active with workouts and sports activities, and sexually as much as possible. I have a fairly high PSA and one prostate doc says we need to go in and take it out surgically. He has done (thousands) of these. I'm concerned, that if I do that, first it will be the urinary problems, and in addition, if the doc severs or removes the nerves that control urinary and sexual/erections, my sex life may be over. When you had yours removed, did they take it all out including the nerves? or did they do a nerve-sparing surgery?

[@oceandmike]

I strongly recommend you see a medical oncologist who does not do surgery. I saw a “medical oncologist “ who was a urologist and he wanted to gut me like a fish then have radiation. I then went to a radiation oncologist who said that it makes more sense to just do radiation and skip the surgery. I did the radiation and am glad I did.

[@wasuppa]

@@oceandmike Thanks! I haven't considered a radiation oncologist. I'll see if I can find one and get an appointment....

[@brettjackson7233]

Mark did you radiate the pelvic lymph nodes ?

[@andanh8]

? please tell us where did they zap.

[@R50_J0]

They radiate the “prostate bed” and pelvic lymph nodes.

[@1958zed]

​@@R50_J0 Not in all cases. I just had the prostate bed zapped; no lymph nodes.

[@handonmgt]

The effects of radiation therapy takes time to notice.

[@paulcharleshayes1835]

Hi I am a Gleason 8 T 3 A and choosing surgery in hindsight would you have chosen adt and radiation over surgery Paul

[@nelsonoliva2119]

Hi Paul I had Gleason 9 t3a disease no spread evident on psma, and negative seminal vesicle and pelvic lymph nodes. I had RP in 11/23 and Im happy to share my experience with you if it will help. Im 55 yrs old btw. Cheers

[@warrenmaralit2461]

Hi Mark, hope you can provide some clarifications. 1. Are still taking up Orgovyx?