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Advanced Prostate Cancer
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Axuium Scan

Post SRT - PSAs .19 and .25 - MO says, Axium scan ---everyone is different but the guidelines from the mfg say - 'scan at 1.78 ' and above. You put almost anyone under that kind of scan and it will show something - more meds, treatments, anxiety, and revenue for the hospital -- wonder if this $$ driven. Opinions, please.

btw - does anyone know where PCa mets mostly to? Trust PCP questions this too.

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Still learning acronyms, is SRT = stereotactic radiation therapy?

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salvage rad treatment

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Go to your home page and do a search (top right corner) for PCa Abbreviation List.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/11/2019 6:27 PM EST

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Note: SRT is not on the list ... :-)

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Did you look under "salvage rad treatment"? 🤷‍♂️🤷‍♂️🤷‍♂️

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/11/2019 10:56 PM EST

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Axumin is approved for use in recurrent men following prior treatment. If you've already had SRT, which treatment decisions are you trying to decide between?

First detectable mets are usually found in the bone, but that may change over time because of early use of Axumin and PSMA scans.

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My question is it worth taking the scan? Also based upon an SMK, Life expectancy nomogram w/o treatment. - says only a 21% of dying w/o treatment.

webcore.mskcc.org/survey/su...

I m 67 and had all this treatment up to SRT, I would think my odds would even be better after plugging in in #s... thoughts?

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As I think I mentioned, that nomogram is for men who are newly diagnosed (not recurrent) and without metastases. Your expected survival is worse, not better. With treatment it is somewhere in the range of 10-15 years.

If there is no treatment decision to be made based on the results of the scan, it is pointless. Perhaps ask your oncologist what treatment decisions he has in mind.

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I have no mets and spoke to the dr who created the nomogram at smk - He agreed with me - risk would be less the 21% at 10 yrs based on my #s. He agreed it would be in the range u suggested 10 - 15 yrs with the treatment I had, most likely better. That only makes sense.. So my point is --- since my life expectancy is about 81 yrs - why scan and look for other issues? However, I will talk to him personally ( MO ) get his opinion. We are all different - QOL and worry from test to test is a huge concern for me. The tool is not for ' recurrent ' its based on pretreatment decisions. 0.19 and 0.25 is not BCR according to SRT and what the mfg says to scan at. BCR is 3 PSAs at .2 and above - even at those levels, I question the need for the scan for me, that is a personal decision at this point for me. I have trust in my Drs but also have questions.

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Why don't you want to live to be 82? You certainly have mets - they are just too small to be detected. Any confirmed PSA ≥ 0.2 is "recurrent" by definition, so you qualify for the scan, but that is beside the point. It's true that Axumin will usually not pick up anything at your PSA, unless your PSADT is rapid. And it's only worth doing if it will make a difference in your treatment.

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Sorry I didn't realize you were a Dr and knew more then those that treat me at SMK. My apologizes, but wait, according to ur profile you are not a Dr - who are you any way? And, show me any NCI doc that says on one PSA above 0.2 means mets. You missed as u most often do, answering the question or comment made. AI and nomograms are smarter then u, me and any Dr alive. Be careful TA in giving advice based on what u think and not is not backed up by medically EB data. What I want is, again you missed in my comments was a QOL w/o testing every 3 months - you do NOT not my medical history - again, be careful of the advice you give. We all know how to google. Please outline in your profile exactly who you are and why you clinical credentials are, please do this so we can all feel more reassured to listen to you. I will look for an update on your profile tomorrow - i hope you comply.

BTW - I want to live as long as I can but with some level of quality.

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I just pointed out you are misinterpreting the nomogram because it doesn't apply to your case. A nomogram is not "smart" - in fact, it is only right about 70% of the time, and it predicts for the population, not the individual.

Here is the definition of biochemical recurrence after prostatectomy according to ASCO:

"Clinicians should define biochemical recurrence as a detectable or increasing PSA value after surgery that is > 0.2 ng/mL, with a second confirmatory level > 0.2 ng/mL."

ascopubs.org/doi/full/10.12...

If you are recurrent after SRT, and there are no detectable mets, it obviously means you have micrometastatic cancer. What else can it mean?

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TA according to the Dr. / Scientist that spoke to me ( Dr. Vickers ) - Anyone could use it despite having treatment. Having the treatment according to him would only improve the #s in someone's favor that had treatment and that makes sense. Its mostly about QOL for me --- BCR is NOT proof of METS as you previously stated - proof of METS is from imagining - not a blood test alone.

You say nomograms are only 70% correct - can u please cite me that from clinical based evidence? - accord to the Dr it was closer to 90%. I agree that its population-based, all of those tools are and they are highly used by Dr and patients in the decision-making process in treating the disease. Do you have a post SRT nomogram that could be used?

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I know Dr Vickers and think you misunderstood him. You are not newly diagnosed. In the seminal study on survival after failure of prostatectomy, median survival was 13 years:

"The median actuarial time to [bone scan detectable] metastases was 8 years from the time of PSA level elevation...Once men developed metastatic disease, the median actuarial time to death was 5 years."

jamanetwork.com/journals/ja...

I agree that BCR is not proof of mets, but after SRT, it is proof of micromets (too small to be seen). Why do you suppose your PSA is detectable?

Here's what Vickers wrote:

"On external validation, 10- and 15-year concordance indexes were 0.724 and 0.726, respectively. "

ncbi.nlm.nih.gov/pmc/articl...

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Took a quick glance at this and see Dr Vickers was involved in the study ( will read in greater detail tomorrow ) - I will also talk with him next week to clarify what he told me about the accuracy being closer to 90% in my case --- Also, saying that I could use this tool as a helpful predictor in my case, despite already having SRT - I'll mention my contact with you as well - in the meantime, if u have another tool ( not SMK ) that could be useful to me, please let me know. My point again, since I already except my mortality, I want what years I have left to be the best possible quality years as possible - going test to test, treatment to treatment MAY not be the path I take. What is ' seminal study ' ?

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JAMA article is 10 years old, this survival data is useless given advances in treatment and SOC.

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Well according to more recent data, on the whole, the duration of survival of men with metastatic castration-resistant PC (mCRPC) hasn't changed very much. Dana-Farber compared survival of men with mCRPC in 2004-2009 to 2010-2013. Median survival increased by only 6 months (2.8 yrs vs 2.2 yrs).

However, there was a 2.6-fold increase (26% vs 10%) in the percent of men who survived 5 years or more.

prostatecancerinfolink.net/...

I'm sure there will be longer survival among metastatic men treated with Zytiga and Docetaxel when they were newly-diagnosed (and while they were hormone sensitive), but those changes to standard of care are more recent, and represent a small subset of metastatic men (Most metastatic men in the US are not newly diagnosed).

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I don’t believe your original article specifies MCRP only metastatic PCa. And although it is anecdotal I still run into a substantial number of men who are newly dx with metastatic PCa and my wife is active on a caregiver support group site where it is fairly common place.

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Actually, they are saying that from recurrence to detectable metastases was 8 years, and from detectable mets to death was another 5 years. As you say, your experience is only anecdotal. In fact, about 97% of men in the US are detected in a pre-metastatic stage: "Of the 767 550 men with prostate cancer included in our study, 3% had metastases at diagnosis."

nature.com/articles/pcan201630

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Again this is more old data prior to today’s more sensitive scans, I suspect these numbers will be higher in the coming years with more widespread use of more sensitive scans that are now FDA approved.

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I hope so!

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Hello Ken

Like you, I've had recurrence after a prostatectomy - but am at an earlier stage, only part-way through the SRT (and, in my case, concurrent ADT) treatment. I mention this only to convey that I understand it can be very stressful to discover that a step you have taken, and that has reduced your QoL, has not achieved the results you were hoping for.

And also, I have found nomograms kind of hard to negotiate my way through - I don't think too many of us really "get" the probability space that these things operate in.

But to be crystal clear - while you can still draw inferences from the nomogram you're quoting, the numbers it spits out no longer apply to you because they are all quoted from the vantage point of an untreated man, looking forwad to what lies ahead. You, however, have been treated - twice in fact, by RT and SRT, so the outcomes you have experienced have marched you down several arms of the "outcome probability" tables that make up the nomogram as a whole. You can't re-set the dial and claim the same overall % outcome as would a man who hasn't had the treatments and outcomes you've already experienced - by comparison with you, he has the upside that these tteatments may be successful, and that gives his overall position a more positive outlook.

And on the issue of whether or not you have mets - since you have a PSA and no prostate, you clearly do have PCa somewhere. Whether it can be seen on one type of a scan or another, whether it exists at one location, several or many, is unkown - and at your current PSA level, these issues may well be unkowable. But you do have PCa present in some form of met(s) - you can put a "micro" in front of the word or not, as you wish.

As to is an Axumin scan worthwhile - I would say not, for two reasons. Firstly, it is extremely unlikely to image anything at your currenmt PSA. And secondly, you don't yet have the outcome tied to any clear plan of action e.g. a plan to seek stereotactic radiation to the met if it was imaged.

An important piece of information that is missing is your PSA doubling time (PSADT). This is straightforward to calculate from the two PSA measurements you already have and will give you a much better idea of what you're dealing with and how urgent it is to make a decision.

All the best

Stuart

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Thanks, Stuart --- best of luck to you ---- The tool I used, did not say anything about what treatment if any would be done --- perhaps, the tool makes the assumption that a man would go on to have treatment - I did not interpret it that way - but I could have been wrong and the tool ' bakes ' in treatment would be done. If the tool does what I think you are saying, it can be misleading, at least to me it was. You are not the only one asking, ' why do the scan at these levels? " Getting confirmation from them today. Ken

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Allen,

Just want to let you know that 99.9% of the folks on this forum truly appreciate your dedication and help. Few people would ever devote the time that you do...especially for free!

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Thanks! I know that most people who find value in my posts would ignore threads like this. I usually ignore such posts, but was appalled that anyone would prescribe poisons with no known value.

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I only wish that I had known you prior to my decision to go down to Melbourne, AU for the 68Ga PSMA scan and the subsequent LN surgery in CA. The cost of those was close to $80,000 US and I now question the validity of having either of them done. Thank you for all of the help that you have afforded my friend Brian...he is so happy that he listened to you instead of his 'trigger happy' doctor.

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Thank you Tall Allen for your knowledge. Your responses are appreciated. I always look for you and can retrieve something from it. Brilliant

Carol

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I’m with you ronron. I really appreciate all of the information I have received from Tall_Allen since I joined this forum. I don’t always totally agree with him (most of the time he is spot on) or with any of our group “experts” for that matter, but I totally respect TA’s devotion to the men in this group and the amount of research and knowledge he provides to us. My standpoint is, if you don’t want your preconceived notions to be challenged don’t post the question.

Coincidentally, I just had an Axumin PET scan done last week at the Mayo Clinic in Jax. I don’t consider it to be a waste of time or money in spite of my low numbers and single (and dormant) bone lesion on my inferior pubic ramus. In fact, I welcomed getting the results and the good news from my report. And, having a scan that is able to detect micro metastases at a much early point than the old 18F fluoride scans I have had in the past, is a positive, not a negative. If the Axumin scan shows any relevant changes earlier than they could previously be detected, I would want to know so we could alter my treatment plan. Having the Axumin scan does not always mean that a PCa patient will require additional treatment. My Mayo M.O. said I should just continue doing what I’m doing for now and use the results of the Axumin scan as a baseline for future treatment decisions.

I kind of cringe at the use of statistics as a predictor of how long I’m going to live, or worse yet, to predict what my quality of life will be...way too subjective. Statistics, especially related to PCa, are usually out of date by the time they are published since they rely on the evaluation of a past period where current drugs and therapy modalities were not available. They can’t be relied on for us as individuals since our cancers and the course of them is largely dependent on our unique biologies.

So, thanks to Tall_Allen for his contributions. And as a reminder to anyone who reads this, let’s remember to be civil and respectful in our posts here. We’re all in this together.

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Agreed!!

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TA - you were correct and I was wrong - that nomogram does NOT apply to me now! This was not the impression the Dr. left me with last week, but he just confirmed it with me moments ago - it's for men to help them make a decision for treatment - my apologies. I will listen to my MO, my PCP and own research to reach decisions. Now, that I can't use this tool ( tool/nomograms) do you or anyone else have a such a tool/nomogram that might be useful to me - post SRT? The one I was incorrectly using is:

webcore.mskcc.org/survey/su...

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That was totally out of line. Please try to be more civil and respectful in your responses. We don’t always agree in here, but we are all fighting the same battle. You don’t have to agree with TA...I don’t always agree with him...but he is in good faith trying to help us. When you don’t agree with him (or anyone in here) I am asking you to please tone down the attacks on him or his qualifications. We are all just trying to survive the best way we know how.

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I asked a question - not a diagnosis - and did not consider asking for his credentials to be disrespectful.

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In defense of ken12491, I've been reading these forums (here and at healingwell) for a few years and I have read many a post from TallAllen. He certainly has access to a lot of research and gives considered advice that obviously many find extremely helpful. However, when I read something like "You certainly have mets - they are just too small to be detected" I am immediately put off. An opinion, no matter how well reasoned or considered, should not be stated as fact. While it MAY be true, it is not a fact and shouldn't be written as such. After reading something like that in TallAllen's response, if it were to MY post, I'd find it hard to continue reading his response and it would spark a defensiveness that considering the vulnerable place many of us find ourselves or our spouses in might cause a response like ken12491's.

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Hello SuppWife - thanks for your comment and understanding what I saw in his response - however, perhaps after a nights sleep I could/might have taken a softer, but still direct response to TA - having that ( METS ) being told to me by someone other than my Dr was a bit difficult to hear - I have an RO, a new MO, PCP, and urologist, none have come to that conclusion just yet - might be true but it's more factual when it comes from my providers, backed up by more than a blood test - best to u and your spouse. Ken

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There is an unavoidable natural history of prostate cancer progression. How do you suppose PSA can rise to detectable levels after prostatectomy and SRT? The prostate is gone, so there is no longer any significant source of benign prostate cells that can put out PSA. The prostate bed has been irradiated, so that eliminates any non-metastatic tumor tumor growing there. There are no non-prostatic sources of PSA that contribute more than 0.01 ng/ml. That only leaves metastatic sources. Most metastases are too small to be detected.

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I stand by my comment. It's your delivery I question, not your logic or expertise or the odds or likelihood. My husband's doctors use the language "no known metastases." I don't know why they would use that language and you would not. If his physicians don't say he "certainly has mets" why should you? I'm trying to tell you sometimes the way you present information can be off putting. I've seen it and felt it on multiple occasions. Do with that opinion what you will. Considering the amount of conflict I see on the boards between you and other members I think it's reasonable to assume it might be partially due to your delivery.

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Well, I'll stand by my way of putting it, which I've heard used by some top oncologists. I don't believe in deluding patients - I treat them with respect - we can handle bad news - in fact, pretending something is not what it actually is leads to confusion and sub-optimal decisions. "No known metastases" or "no detectable metastases" may mislead the patient into thinking that there are no metastases, when, in fact, there certainly are. "Too small to see using current imaging methods" does not mean that there are none. And if you are misled by the language into thinking there are none, you may see no reason to undertake systemic therapy, which may improve survival. I'm sorry that your husband has micrometastases, but he is better off acknowledging the fact than pretending that they aren't there.

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All I am suggesting is softening your language since you are NOT A DOCTOR. More people are likely to listen to you if you're not throwing absolutes at them.

It's so rude of you to say if my husband's doctors use the language they use they're attempting to mislead him or that we believe if we don't see them they're not there. If you believe your matter of fact language will save people you're the one who is deluded.

I will continue to avoid your posts as I have tried to do for months. Any information you may have that I would find valuable is lost in your arrogance.

Thank you for proving my point.

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My PCa journey is a prime example of your conviction. After undergoing a robotic RP in 2004, no adjuvant therapy of any kind and a PSA that remained well below 0.2, my PSA finally reached the 'widely accepted' BCF level of ~ 0.2 in July of 2013. Four PCa specialists (UCI, Baylor, MD Anderson, and Loyola), all whom I have the ultimate respect for assumed for years that I was 'out of the woods'. I recall hearing the words, "No known metastases" or "no detectable metastases" numerous times. Bone scans, MRI's, and CT/PET scans identified nothing. Prior to my PSA reaching 0.21 one of the doctors even suggested that perhaps benign prostatic tissue 'could' be involved. It wasn't until 2017 when my PSA rose above 1.0 that a 68Ga PSMA-11-PET/CT scan identified ONLY three sacral LN's when post-op pathology found five out of eight that were removed to be involved. Obviously I had the 'formula' for metastases for years.

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No problem. Best wishes to you.

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I hope you don't give his doctors the same impression that you don't want to hear truth. Micrometastatic means that it is too small to be seen by current technology, but there is evidence, as with PSA rising, that there have to be metastases. It is not opinion - a definition is a fact.

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We've been following my husband's doctors' recommendations ever since he was diagnosed. He has not had any sensitive scans, yet. He had only a bone scan after his biopsy which we showed no bone mets, but we are fully aware that is a basic screening and doesn't exclude bone mets which may there but too small to see. So while he has not been fully examined by the most sensitive current technology we are fully aware of the potential existence of micrometastases, and we are following the recommendations of his doctors. I am an advocate for my husband and am determined to help him in getting the best most appropriate treatment in as timely a manner as possible.

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The axumin scan is recommended at 1.78 and above--did mine at 3.... The gallium PSMA is a better scan at lower numbers and there's a clinical trial for this at NCI--I believe the cutoff is 0.5,... look on the link below:

cancer.gov/about-cancer/tre...

It would be free if still enrolling, and I believe at JHU...

Find it and kill it all, Ken...

Best of luck,

Fish

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thanks, Fish - i m still only at .25 PSA ...look at the nomogram. ... is it really worth it at age 67?...it says, only 21 out of 100 would succumb from PCa at 10 yrs if they did nothing at all..and I did all the way up to SRT. would think my odds would be better...

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Please note....the website and study from TA with Dr. Vickers was from 1999----current??-if this is me, I wait till I'm near .5 and see if they can get me in the study....if they can find the disease, then treat it...initial metastasis is usually bone...if they find nothing, I would ask them at MSK what is most appropriate treatment for micrometastasis, but that's up to you...According to the American Cancer Society, I have a 30% chance at 5 years survival, and 4% at 10 years.. I never listen to the odds makers...

Best of luck, Ken...let's get together and fish this summer and forget all this Pca stuff...

Fish

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Sounds good Fish - we ll stay in touch.

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Wow.. you ask for suggestions and then go off on some one who is very knowledgeable. I am 64 had a low PSA for 2 years after surgery . At UCSF it was multiple nodules to both lungs. TA has given me excellent answers to questions... When if you research advanced prostate cancer metastasis to the lungs you find nothing.. virtually rare. Be thankful for anything .. use what you need.

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Thanks Michael for your comment regarding his rude reply to TA. I was just getting ready to make a similar comment when I noticed yours. I believe that TA knows as much and perhaps more than most doctors do regarding this nasty disease. If I tried to help someone as TA always does, and they reacted the way this guy did, I wouldn't waste my time typing another word!

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I was not asking for a diagnosis - just stating my situation - If you were responding to my comment to TA - I'm missing your point?

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Decision-making under conditions of personal or medical uncertainty is never easy. In my own experience, I have had fears, doubts, second-guessing, and other forms of accumulative suffering that, in hindsight, I might have avoided via some "loosening up" of the urge to constantly be so closely on top of everything. But, my experience is only anecdotal. Others have disease that quickly takes off like persistent wildfire. We will all face these turning points in our advanced prostate cancer journeys. Good Luck to you as you continue to consult with experts of all kinds, and settle into a decision that's best for you and any constraints you may have for what may be available to you.

Charles

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Thanks Charles - good advice, esp about "loosening up" -- my PCP said almost the same thing last week to me - being kind of an ' OCD ' guy is's hard but I'll try harder. My best to you as well. ken

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As others have said, Tall Allen is very knowledgeable and chooses not to share his background on this forum, as this an anonymous forum. However, he has good information that has helped many. Whether or not you choose to follow-up to investigate anything further is your choice.

The most valuable metrics for diagnosis and prognosis are post-primary treatment gleason score and staging, PSADTt and time to BCR following primary treatment. You can do your research, if you haven't already and discuss the specifics of your condition with your MO. I think that Tall Allen is trying to put your situation into a context that fits your situation, not diagnose you. No two PCa patients are identical. Each patient's conditon has to be thoroughly researched. Nonograms, Partin tables and all the rest are basic guidelines and markers for finding your way (ballpark). Your condition is unique to you and simply going by the PSA level is not a reliable metric to base any major treatment decisions on, without more information.

I had a gleason of 5+4 post sugery in May 2016 with one lymph node positive, then did taxotere and lupron for six months. My post-treatment nadir was undetectable. Seven months later, I was BCR. My PSDT was less than three months. At the time, the Axumin scan was not widely accepted, though I believe FDA approved. I wanted the scan to see if I was at "ground zero" or more advanced.

Instead, I went back on Lupron for six more months (which lowered my PSA levels again and made the scan unusable) and later fought the insurance company tooth and nail to get the Axumin scan, as which point my PSA was 2.1 (during break from Lurpon) and my PSADT was less than two months. They found a 1.8 cm x 1.3 cm tumor near my bladder and a small lesion (that hurt like hell) on my left femur. I am now on Zytiga (which reduced the pain substantially) and am going to OHSU to start EBRT in the next two weeks for the lesion. I believe that they might have found the tumor sooner, had I been able to have the scan sooner, maybe not.

Bottom line for me, is that I most certainly think that the Axumin scan or PSMA scan is very useful and totally worth having done (whether or not they find anything) because it provides a snapshot in time that you can use to help determine your timeline of progression. The scan identified both a soft tissue tumor and bone mets. I would have gone much longer and been in far worse condition, had it been put off any longer. Finding mets sooner is considered a big advantage.

My recommendation is for you to make your decisions from now on and going forward, based on your MO's advice, your own solid research and your own intuition (gut feeling). That's all you have. No one really knows, not the MO, not the nonograms, research studies or PSA levels. We do know when the mets are found sooner, this is an OS advantage.

Good luck. May you find peace and the answers that are best for you.

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Thanks and agree in total with your last paragraph - that was my plan all along - never to rely on a tool, one dr opinion, etc --- I will listen very carefully to my MO. My best wishes for you as well. Ken

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I’m not an expert but thought I would tell you about my experience. I’ve just had a F18-PSMA-PET-CT in Heidelberg, Germany. My understanding is that the type of PSMA being done in Germany has a better chance of detecting cancer at lower levels of PSA. My PSA was 0.063 when I booked the scan and 0.123 on the day it was done. It has picked up one met in a lymph node in the left lilac area. Cost me €1900 plus flight & overnight. While I note that 0.2 is the threshold for a biochemical we reoccurrence in some countries in Ireland I have been told by the Multi disciplinary team treating me that it is two PSA tests above 0.05. They don’t however commence treatment however until it’s above .1 and then they generally guess where the cancer is and apply External beam radiation to the prostate bed. (My view) The purpose of me getting the test done is the possibility of directing the radiation at the cancer specifically. I have gained two benefits from having the test done. Firstly it’s put my mind at rest to know it’s only in a lymph node. I did not trust the PSA test as it has never been above 4.04 while I have aggressive cancer that was locally spread prior to surgery. I now have more trust in the PSA test. Secondly it gives me a chance of getting directed treatment or at least know we are not guessing on the basis of the majority of cases as it may not be restricted to the one node at least I will know it is included. I have and continue to gain a lot from this forum however our journey is individual as is our cancer progression and at the end of the day I will choose the treatment I will have following listening to the experience of others on a similar path and the professional advice I get from my medical team. That choice will be based on the benefit to me not just my length of life but also the quality of it. Prediction tools don’t work for everyone and didn’t for me as I was told on the basis of it I had a 50% chance of making it to 5 years before reoccurrence and I didn’t get 5 months. Perhaps you will consider if it’s a benefit to you to know and figure out if you have more detailed knowledge of where is is will it benefit you treatment options.

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Hi

Seems on a similar path just had PSMA at London Clinic cost £2588, so Germany seems better deal. My PSA 0.9 with doubling time of 3 months. Had docetaxal last year. PSMA showed mets to one node on pelvic area and slight up take higher in pelvic area. Seeing Oncologist today not sure to go for removal of node, SRT or Lu177 PSMA.

Have you had any advice.

Regards

Ian

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No there is a major national nurses strike here which is delaying things and I haven’t had any advice yet.

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Although the Prof in Germany did say he thought external beam radiation to both left and right lilac areas would be a good idea and in the circumstances he would not necessarily just radiate the one node.

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I had two iliac nodes suspicious for PCa and had RT to all pelvic nodes . No recurrence. Imho it makes no sense to hit two mets in an area with dozens which are probably microscopic.

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A lot of my pelvic nodes were taken out during surgery I didn’t mean he suggested it should be restricted to two nodes. He felt it would be better to do all the remaining pelvic nodes including both lilac areas.

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Got it. I had 10 removed at RP all negative but two years later I had mets there.

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I had 23 taken at least and haven’t got six months. Only had surgery last May and the first PSA at three months although low wasn’t undetectable. All margins were clear and according to PSMA prostate bed is still clear.

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I have also been told here in Ireland that they won’t operate to remove any more nodes.

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I would take the scan in a heart beat. Not going to sit around analyzing if big business is setting the parameters so they make money or justifying the nomograms.... all they are are stats on someone else’s body.... my husband already been through treatment, extensive in the lymphs, none in bone... that PSA starts going within range and if doc recommends scan, yep... there might be a chance for false positive, greater chance it isn’t. We aren’t afraid to face the beast again.

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One of our peers recently had an axumin scan at near 2.0 which was negative and then had a dcfypl scan which found lymph node mets.

Perhaps axumin is better at bone mets? It found mine at 1.2. Psa

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Micro-metastates. It’s a term which I suggest most in this forum research and then discuss with their Medical Oncologist. Allen is certainly correct.

It’s a term I learned in 2004 from my research Medical Oncologist. The context, in my case, was that it mattered not what primary treatment I had; it was too late as unseen metastatic cells had escaped prior in initial diagnosis traveling the highways and byways of my lymphatic and vascular systems. The cells continue to migrate looking for a place to land and colonize. The time could be less than a year or greater than 10 years. However, they are there none the less.

This is why, I advocate for early aggressive systemic treatment. Yet, if one does not buy into this concept, then please discuss with your Medical Oncologist.

BTW, I am not one for predictive algorithms. I have based by treatment on available facts and the best guess of specialists trained in PCa. I wish all good luck in fighting this terrible bastard.

Note. My written words and six bits might get you a cup of coffee at the local diner; 24 bits at a designer coffee boutique. :)

Gourd Dancer

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Java in bits (and bytes).....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/11/2019 6:39 PM EST

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Holy chit....61 replies? (Record?)

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/11/2019 6:19 PM EST

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Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/11/2019 6:41 PM EST

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