I was diagnosed and had RP in 2019 followed by radiation treatment in 2020 and ADT for 2 years as part of the treatment. My psa was 00.1 for those two years following radiation treatment but gradually started to increase soon after the hormone treatment stopped. Last year it started creeping up to 0.34 and has continued upwards with every test. Having had surgery and also radiation treatment should I be worried the next options available to me ?
2025man: I was diagnosed and had RP in... - Advanced Prostate...
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IMhumbleO depends on what PSA you choose to rely on as indicator cancer is on move and at what PSA you will take actions.
I rely on <0.010 as best indicator. I am post RP, salvage RT to bed and salvage extended pelvic lymph node surgery which confirmed cancer as far as para-aortic lymph nodes at 0.13.
What would be next for me, which I do before 0.10, is several comparative imaging methods and liquid blood biopsy testing.
There is nothing worth doing until your PSA reaches 1.0 and your PSA doubling time gets rapid (< 9 months). You can get a PSMA PET/CT when your PSA reaches 0.5.
Au contraire! I am most grateful I acted at 0.13. Much can be gained.
PSMA is very PSA-dependent. The odds of a PSMA PET/CT of seeing anything at a PSA of 0.1 is less than 1 in 4. The odds of it seeing anything at a PSA of 0.5 is almost 9 in 10.
prostatecancer.news/2016/12...
Nothing can be gained by detecting metastases sooner in someone who has already had SRT.
Yesterday you asked me "What kind of patient advocacy do you do?". Over seven years ago I learned in Europe. where PSMA was well established whilst US medical complex was exercising trials, that they begin imaging at 0.03. I have had multiple PSMA PETs because I face mets.
I share my experiences for those who also face mets. As I have stated several times it is a shame for HealthUnlocked that Darryl recently removed the guideline to speak from experience.
The problem with anecdotes like yours is that they don't reflect the experience of thousands of patients, just you. I know numbers and peer-reviewed data are hard, but they are necessary.
I assure you I have the intellect and background.
Given the rising projections for annual death rate, number of men on ADT and subsequent CR, men reading our threads and other members comments as well, can make their own decisions.
I am neither an anecdote nor on Mt. Stupid. The doctors I work with on two continents are ahead of common restricted thinking. Allen, you speak well beyond your personal experiences and as you make clear, without formal medical training.
Let others decide!
Patients will always decide for themselves, but ignoring the data, as you do, is a recipe for disaster.
Here you are again with your judgement based on no actual knowledge as to what I know or ignore.
Allen, you certainly have a large library to reference and you have developed a style of medical writing that can impress. I can see how your selection of data is the foundation from which you expound, because as you share, your actual patient experience with this beast is limited to a singular successful focal treatment and you are not a doctor.
I do wish I had realized a cure as you did, but it was too late for me, in large part because several docs and I became complacent relying on the very type of data you cite. Fortunately, I averted a disaster.
So, let me get this straight - you want patients to emulate what you did, which has been a disaster?
Please explain what disaster you are judging I made for myself?
I never tell another man what to do.
Having read your posts for a number of years, it’s evident that you would do well to learn what empathy is and when its use would be appropriate. I respect your knowledge but not your method of communicating it at times. Best regards.
Amen. TA is the layman who has taken it upon himself to condemn HIFU as a treatment option to the point of calling men who choose that option stupid and surgeons who offer that treatment fraudsters. And this super opinionated 'advice' despite no personal experience with HIFU. My opinion on HIFU is based on personal experience. I received full gland HIFU ablation surgery more than 8 years ago and I am doing just fine. No quality of life impairment whatsoever and no disease progression.
I'm glad you are doing fine - many are not and have been duped by unscrupulous avaricious urologists.
asking again, please explain what disaster your are judging I made for myself?
The main issue as I see it is that oftentimes you make authoritative recommendations in your pithy style which some members may take as gospel, rather than following the advice of their knowledgeable healthcare team. No one should give specific recommendations for treatment on a forum/blog, as that is practicing medicine without a license, if you are not a licensed physician (my understanding is you are not; just a layman who has read literature) and if someone is giving specific medical advice as a physician, they are potentially negligent and committing malpractice. Why? Significant, pertinent medical history, laboratory tests and other medical information is unknown to you are others on this site, because no one posts their entire medical record. You aren't qualified to interpret that data if they did post it. You have not examined the patient and, again, you aren't qualified to do so. Certain treatments, although seemingly the next step by trial data, may be contraindicated in certain patients due to a myriad of medical reasons.
I believe it is a terrific service to point someone to trial data so that they may discuss that information with their actual oncologic team, that knows the patient and has years of training and experience in treating prostate cancer. You are a great resource of that data. But making specific recommendations without qualifications or complete knowledge of the patient is potentially harmful to their health.
I have repeatedd in my threads on this forum " TO NEVER ACT ON THE PRIOR EXPERIEENCES OF EXISTING OR FORMER MEMBERS . While offered in good faith they are guides for further dialogue with your " Medically Qualified Team ." As you advised " . Only a fool would diagnose a patient without meeting them in person and conducting a complete review of their personal and family medical history .
CAUTION - MEDICAL ADVICE , EVEN BY AN " MD " , SHOULD NEVER BE OFFERED ON THIS SITE .
Thank you. Precisely what I said.
This is a specious discussion. TJ is speaking and relaying information that has been derived mostly from scientists employing the scientific method, not unreliable anecdotal information, which may or may not be useful. As a method science is the disinterested pursuit of the truth. Disinterested, because it doesn't matter whether the conclusion is welcomed or not.
As I have stated before, SOC based on published trial data sometimes lags cutting edge treatment, as given by certain leaders in the field. Some experts who limit their practice to treating prostate cancer, practice at COE and do cancer research, sometimes deviate from SOC because they have data and experience, not yet published, that indicates certain treatment options are superior to current SOC. Not "pseudoscience", but information based on real patient experience and research.
When I was diagnosed 25 years ago I chose to concentrate on gut micro biome which for quite a while worked. Psa down, biopsy after two years drastically improved. You would not believe what I had to go through to get a second biopsy “because prostate cancer isn’t like the common cold, it just doesn’t go away”. I was told it was anecdotal and rudely dismissed. Two weeks ago I met with an oncologist at a research hospital who wanted to know all about my “anecdotal journey”. He told me that they now have stool donors and a lab ,the Karen Sfanos lab, that is dedicated to studying the effects of various gut bacteria on prostate cancer. Through my research I have also found that Abiraterone improves gut micro biome and have since gone from 1 tablet with food to 4 without food. You could call me stubborn but I have always been one to question everything, as you can it takes a special kind of doctor to tolerate me. I thank God that I have found that crew.
Sage advice as always . Follow the peer reviewed science .
What areas were radiated?
2025 man your thread got hijacked there. Oh well it happens. But anyway, back to you….I had a nearly identical timeline and treatment.
What was your PSA post surgery but before you began radiation? Did you ever test lower than .1? what was your Gleason score? Were there any adverse features on your pathology report (ECE, seminal vescicle invasion, positive lymph nodes etc)?
2025man asked "Having had surgery and also radiation treatment should I be worried (about) the next options available to me ?". As I have had both surgery and radiation and share the same questions he does, I replied.
I began to wonder if my 'discussion' with Tall_Allen was devolving into a hijacking (this has happened before). When my shares are challenged, attacked, I will respond, striving to hold to the OP's thread
DannyMan has come in with what I see as further step towards a hijacking, so I will not reply directly. Besides, I think my bio, posts and replies elsewhere answer his question and I am always willing to Chat. (A look at Danny's bio and his replies on other treads are the basis for my seeing his entry as the further step).
I wasn’t lodging a complaint. Occasionally when a thread gets hijacked, especially when it becomes contentious, I think it can be helpful to point it out for the benefit of the OP, who may or may not feel left behind in the discussion.
You were no doubt already quite aware of TA’s basic principle about data driven, highest levels of evidence vs personal observation. You are also no doubt aware that certain of your personal decisions, like extended lymph node dissection and pursuing imaging at .03, are not supported by highest levels of evidence, regardless of what your colleagues are doing in Europe.
Relating personal experience that lies outside hard facts and data is anyone’s prerogative. On this forum you know to expect this will be pointed out, especially if you subsequently defend it with your credentials. This isn’t your first day.
My Gleason score was 3-4=7
The PSA post opp was 0.23
The Prostrate Bed was targeted in the radiation treatment. POS radiation I was on ADT for 18 months and PSA remained undetectable until I came of. Then it went from 00.4- 0.1 up to 0.27 in my last test in October.
One major difference in our experiences is that in 2019 when I was diagnosed PSMA wasn't available to me without long travel and expense I was unwilling to do, and the likelihood of anything being seen at an undetectable PSA, which I had after surgery, was extremely low.
My trial of IMRT abiraterone and ADT was not SOC then but the hope was it would have superior benefit to waiting for a possible PSA rise. My adverse pathology of SVI and a positive node post op led me to being recommended for the trial.
However, by taking action so soon with an undetectable PSA I may well have been over treated. Studies have shown no benefit to doing this ‘true adjuvant’ approach over waiting.
I remain undetectable 5 years later and am most grateful for it, but I do carry several permanent consequences of that additional treatment I would surely like to have avoided.
Your PSA of .23 post op was unfortunately a prime adverse pathology feature. Agree that this is to be treated as a chronic disease now, but that doesn’t mean rushing to treat will do anything.
I hope you will be comfortable with waiting on the scan until your PSA rises to the point where anything is at all likely to be seen, as has been suggested. In the meantime enjoy your life! The answer to your question of ‘should I worry’ is NO!
Further treatment for you at this point will undoubtedly mean more ADT. By now you know this is life extending, very effective medicine that is also hard on the body and eventually stops working. Also, you never know what new treatments may arrive in the meantime.
Choose your path carefully from here and again, make the most of your time. This is often a very slow moving disease. Great luck to you!
Is there no concern that the cancer may be growing but no longer makes PSA or makes very little? Is there no need to look for these mets? When my PSA was 0.2, I had prostate bed and pelvic nodes involvement. I see some getting yearly bone scans and CT's. Starting with G9, I thought this was a greater risk.
To the OP, your original diagnosis? It helps, especially the pathology of tissue from the RP.
Let's ignore the chest thumping by others here for a moment shall we...
You ask should you be worried? It's a good question. But an answer requires to understand what you concerns may center around. For every patient it is different!
For some, QOL is important, and to others Survival is...
But Morbidity and Mortality are and can be mutually exclusive! And can be entirely impacted by our choices, the choices WE make as Patients!
So following along the path of thinking is to examine our choices. We treat the cancer because we want to WIN, we want to prolong the inevitable effect it can have upon us. Digressing into the statistics, or those numbers, it tells us that 2/3 of PCa patients who treat first line therapy never need additional intervention. The 1/3 who fail their first line attempt usually still have a 2nd Chance, but amazingly the numbers statistically stay the same, 2/3 find success then and another 1/3 move on to advanced stages of PCa.
So I believe your question is... Should you be worried? I'm still failing to find to Worry Button to press... Why?
10 year Survival for newly diagnosed PCa patients is still almost 100% (98%), and 15yr not far off those numbers, for most patients. Of course the exception is a small percentage of patients who graduate to the Advanced class. But even then, treatments today definitely help extend the game...
Worry? Ehhhh... I asked this of my Radiation Oncologist when finishing my 40 IMRT treatments, and what she told me has stayed with me and helped immensely. There's no need to worry about what might be. There'll be plenty of time to worry about it when it is needed.
Now I still lol, thinking about it, having moved on thru a few more treatment lines since then. But I agree, there is no WORRY! It is, just what it is. When it happens, whatever it might be, you just want to make sure you do whatever it is you can, to increase your chances at success, and mitigate any possible downsides.
Ok, now how do we do that? Well, get to a Major Cancer Center and one rated in Excellence! Any of the TOP 5 Cancer hospital's will do! Travel if you must, don't skimp! No offense, but local facilities can't compete! Get to the Best of the Best, keep pounding doors, don't settle!
Doing this will certainly help both QOL (Morbidity) and possibly Survival (Mortality). As you will have access to the very best that's out there for our situation.
Sharing my personal experiences... Well one anyways, was a time ago. My program has me getting monthly lab draws, etc, and now is just routine. But before then it was every 3 months, and like everyone I'm sure at some point, there was some anxiety going to the lab, waiting for the results and keeping the fingers crossed that the PSA meter hadn't budged... Until one day, I'm doing my routine and it didn't register with me that I was walking into my lab appointment until I was in the building checking in! I mean, I woke, showered, ate, got in the car, drove a half hour, parked, was whistling while walking into the building, and then I realized what I was doing and why I was there. Lol... No joke!
So my suggestion to you, is NOT to WORRY!
To live life, love Life!
Not get bogged down by the nonsense. Don't get too caught up in numbers, or like you can see above, it can have ruinous effect upon your thinking. I'll tell you numbers lie, and we are all different. So it doesn't matter what 10,000 patients did in a study, those numbers only help as a "guide" not a concrete definitive. The separation from Associations and Causations is very difficult, even in random control studies. Anyways...
To answer your question, about "Worry" I say no, don't be, just get to the Best you can access and take it from there!
Wishing you all the Best!
(Edited for typos)
Can someone please post what the top 5 centers of excellence are? Thank you
Ummmm, Google Search is your friend here. Cancer first, then focus on a Specialty!
But here ...
Here are U.S. News' top hospitals for cancer care:
University of Texas MD Anderson Cancer Center (Houston)
Memorial Sloan Kettering Cancer Center (New York City)
Mayo Clinic (Rochester, Minn.)
UCLA Medical Center (Los Angeles)
Dana-Farber/Brigham and Women's Cancer Center (Boston)
I think there's a more recent list, which logs a couple of changes:
U.S. News' top hospitals for cancer care:
University of Texas MD Anderson Cancer Center (Houston)
Memorial Sloan Kettering Cancer Center (New York City)
Mayo Clinic (Rochester, Minn.)
Dana-Farber/Brigham and Women's Cancer Center (Boston)
City of Hope Comprehensive Cancer Center (Duarte, CA)
UCLA dropped out of the top 5.
You can add The Princess Margaret and Sunnybrook Hospitals in Toronto, Canada .
I am not sure what I can add to what healthunlocked.com/user/Coo... said.
Medical researchers have brought about a plethora of choices in treatment, more are no doubt coming.
There is the science, take NCCN Guidelines as an example. Then there is the art, applying the science to your own particular clinica data given the heterogeneity. That is a discussion with for you with your medical team - urologist, oncologist, radiologist...
My layman's understanding is Advanced PCa is not curable, rather, it may be manageable as a chronic disease., assuming one is fortunate enough not to be in the group as a friend who passed recently in less than a year from diagnosis.
The decision to treat, when (too soon, too late), with what, for how long, is an individual one from my experience. It is challenging since there is no single "right" decision, only the best decision made in concert with your medical team based on the science and the art of applying that science to your clinical data.
I have been on this journey for 11 years, three actively in treatment, the other eight off. That's not bad given my high risk - GS 8, GG 4, 18 months to BCR, PSADT, PSAV... What has been the difference off versus in treatment in my life, none, only that I have felt better off treatment. I have While on treatment I've done the Bataan Memorial March with my sister in White Sands, NM, rode in the Garmin Unbound, a 50 mile gravel bike ride in the Flint Hills of Kansas, gone skiing in Colorado, vacationed with my wife for two weeks in Iceland travelling the Ring Road, attended concerts (I remember the Willie Nelson one, did it while going trough chemotherapy), celebrated birthdays, anniversaries, attended my daughters graduations from colleges...
I used to stress about each test, no longer. In part, because I have decision criteria in place that guides my medical team and I in making treatment decisions:
Three or more increases in PSA spaced three months apart
PSA between .5-1.0
These criteria enable my medical team and I not to react to a single data point and likely obtain clinical data from PSMA imaging to inform the treatment decision. In the last treatment cycle, we met those criteria, had a PSMA scan, then my radiologist and oncologist had discussions about treatment. My going in position was SBRT and six months ADT, my radiologist proposed Lupron, I said no, Orgovyx (she was concerned about financial toxicity of Orgovyx, not an issue for me). My oncologist advocated for the SBRT and 24 months of ADT + ARI.
After much discussion, we settled on a decision, SBRT, 12 months of Orgovyx, add the ARI if PSA did not drop to undetectable in the first three months, and at 12 months, decide whether to come off treatment or continue in three-month intervals to the 24 months.
We did not need to add the ARI, we did stop at 12 months, so far, so good. Was I right, yes, was my oncologist wrong in advocating for 24 months, no. In part, he was ok (albeit reluctant) because he knew I would actively monitor with labs and consults every three months and go back on treatment when the clinica data indicated. It's funny, in his clinical notes since, he makes clear his intention for 24 months next time, we shall see, follow the clinical data...!
You ask, "Having had surgery and also radiation treatment should I be worried the next options available to me ?" My answer, perhaps not, why, because you have a plethora of choices. First one may be when to image and with what...gather your clinical data and discuss with your medical team treatment choices - doublet or triplet therapy, SBRT, which agents, for how long, what constitutes clinical data to come off treatment, if you do, how frequent will you monitor...If the urologist or oncologist your medical team starts talking mono-therapy or lifelong ADT, or your radiologist suggests SBRT only, you may want to consider second and third opinions.
If not already, managing the side effects of treatment is generally more manageable when you control the things you can:
Diet
Exercise
Manage stress
Kevin
Clinical History
Heaven to Betsey..... I'm getting anxious that members here are going to judge me based on my humor and my meaningless remarks.
Good Luck, Good Health and Good Humor.
j-o-h-n
Just hit it with the right protocol and you'll be fine. Don't let the little numbers worry you. I work with guys that have numbers over 5 and are going strong for years now.
My Docs say don't worry about the little numbers so I go with that. Don't let them scare you into needless treatments. Educate yourself everyday you can.
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