Should I be panicking over a new reading of .031 up from <.014? When the pa for my oncologist called with the result I asked it there was the less than sign and she said yes. Well she was wrong. Anyway have a call into Oncologist and hope to hear from her before end of the day. I have had pelvic pain but have been busy with my wife so not sure if it’s that or after my rp they said my lymph node in left pelvic area had cells which shrunk after put on adt. Now my pain is on right side of pelvic area. Please advise as I am now a bundle of nerves. I am getting a ct scan since it’s been 18 months so that will add more stress but I guess if there’s an issue should jump back on adt. Thanks All for you guidance.
Mike
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Oncologist said the adt was effective at reducing lymph node and got me to undetectable. I had a radiation oncologist lined up and they both agreed it wasn’t needed.
You are not thinking about metastases correctly. There are millions of cancer cells floating around in your body. Hopefully, they haven't moved beyond the pelvic lymph nodes. If not, they may still be eradicated. PSA is NOT cancer - it only tells you that the tumors are large enough to have grown a blood supply. Similarly, scans can only tell you about tumors that are at least 10,000,000 cells big - most are far smaller than that. Waiting for tumors to grow big enough to see is a self-fulfilling prophecy. You already know it is out there in your pelvic lymph nodes. To have any chance of a cure, you have to treat with whole-pelvic radiation and 2-3 years of ADT.
I did two years of adt and had the scans and we took that as it hadn’t gone to other organs or bones. I thought being on adt was to kill off testosterone which kills off the supply to cancer cells. I have been off adt since August 2018 and here we are. So even with .031 psa then cells are still sitting there and may be still in my pelvic area waiting to grow?
ADT kills some cancer cells - radiation kills most of them. ADT alone only slows progression. RT+ADT may be curative. Your PSA only reflects tumors large enough to have their own significant blood supply.
The best info we have in described in this article:
So if I recently have been having pelvic pain then it’s possible the cells are there and thus the rise in my psa to .031? I guess the ct may show it or not but I can do srt even now? Thanks for the info and wish I researched that to push for srt in addition to the adt. I asked the oncologist since the lymph node shrunk were there still cells there as she said they died off due to adt. I guess that may not have been the best answer. Thanks again. I’ll stay hopeful that this will work out.
I have trouble believing that ADT combined with EBRT to PG ever killed many of my Pca cells. My reading taught me that theoretically, ADT + 70 Grey to PG within2 year period was a good way to cure Pca, and some docs wanted m to believe that and a man once told be he had same 70 Grey EBRT + ADT for 2 years, and had undetectable Psa 10 years later. So he did get a fix, and probably there are just no Pca cells floating around in his blood. But he has Gleason < 5, and probably a non aggressive Pca cell type.
Well I had a Gleason 9, aggressive cells back in 2009, and had 70Grey BRT + ADT for 2 years and I could not have RP because far too much Pca was all around outside of PG. I quit ADT after 2 years in 2012, and within 6 months Psa shot up from 0.08 to 8.8 and I was back at square 1. No mets could be found with scans at that time.
So just how many Pca cells were killed by EBRT + ADT. IMHO, not many.
I went back on ADT, and Pca cells mostly went back to sleep and Psa nose dived to 0.22, but then slowly began to rise fast in 2016 as the ADT failed to work. Pca cells woke up, and were alive and kicking me.
I had salvation IMRT in 2016 to PG and to 2 mets 2mm dia that showed up in 2 lymph nodes beside my esophagus. But the real status of my Psa was indicated better by PsMa Ga68 PET+CT scan which had just arrived in Australia in 2015.
By then, I realized I could indeed have millions of Pca cells floating around, and all the docs could do was to try to use additional hormone manipulation drugs added to ADT to slow down rate of growth of Pca. Cosadex and Zytiga gave 14 months of Psa suppression, but scans showed increase in number of lymph node mets and increase in size, and then bone mets. All the drugs stopped working so I went to chemo, which failed badly, with Psa going from 12 to 50 after 5 doses.
If only I had a Psa of 0.03 ! It would not be a big worry. The doubling rate would be, if Psa doubled from 0.03 to 0.06 in say 1 month, because in 12 months Psa might be 8,192 times higher at 245.
Anyway, my Psa has never exceeded 50 since awful diagnosis in 2009, and Psa has been up and down like a yo-yo with all these various treatments which worked a bit but then failed, I I have no idea now just how many bone mets I have.
But during last 11 years of living with Pca, I have cycled 200km + a week, lived independently without a wife, done house and yard work, and in fact had a darn good QOL, even though some bone mets got up to pea sized in pelvis and femur.
I had my 6th dose of Lu177 on last 2 October, and Psa is falling again it probably will go low then rise, then I get more Lu177, and so on until I can't have any more then maybe have Ra223, because PsMa scans now show no soft tissue mets, and only bone mets. FDG PET scan was negative. DNA analysis showed no defective genes that made me likely to get Pca, I am not Brca1+2 positive, so I won't get PARP inhibitors. So slowly but surely, I am running out of options, and could be dead in 2 years. But here I am at 73, doing OK, and who knows what treatment may become available in same manner as Lu177 has.
I could end up with thousands of mets in bones, all very small, and all theoretically zappable by Lu177, but like all radiation, there are survivor cells, and from little things, big things grow. But right now, I am not worried, because I am having best possible treatment, I feel well, and it all I can expect. Sooner or later, Pca may win, and it kills me by overwhelming any known treatment.
Many men have a rosy view of just how many mets there are, and they tend to underestimate met numbers and size because scans just cannot yet see all mets.
Psa is about 5 now, and I do feel well. I get blood tests next Monday to see exactly what Psa is, and see the other blood numbers. I am cycling 200km with good speed so I know these other blood numbers must be OK. But I did get bone density scan 2 weeks ago and maybe doc will give me one shot of Xgeva. ADT tends to accelerate bone density loss because I have lived without any testosterone for last 10 years.
Thanks Patrick. I am concerned cause the last scan I had was 18 months ago. Dr had me doing them yearly but missed with the covid going on so I pray with .031 that there is no change such as lymph node met in pelvic area. I guess if there is then maybe they can hit it with radiation. Sounds like you have been through a lot so I am glad you are living your best!
"So just how many Pca cells were killed by EBRT + ADT. IMHO, not many."
The reason you were categorized as "high risk" was that there was a high risk that your cancer had already escaped your prostate and that local radical treatment (RT+ADT or RP) would not be curative. To thoroughly kill all the cancer cells in the prostate requires (1) a very heavy dose of radiation to the prostate itself and (2) at least 18 months of adjuvant ADT.
To get an adequate dose to the prostate requires brachy boost therapy. (Normal IMRT is no more effective than surgery). It also requires that the seminal vesicles be treated and that a large margin be treated. In this manner, over 80% of the cases are cured with about 10 years of f/u. Of the remaining 20%, biopsies have shown that most of them are not local recurrences. This shows that EBRT+ADT can kill all the cancer cells, but only if all the cancer is still in the prostate.
The cure rates can get even higher if the pelvic lymph nodes are targeted with radiation as well.
I did indeed have "high risk Pca" at diagnosis and when docs opened me to remove PG they could not proceed because too much Pca was outside capsule and adhering to it, so they cut away seminal vesicles and took quite a few biopsies and a couple of lymph nodes for examination under microscope and found no spread. No spread was found in scans before the attempted RP.
I read pages at St Vincents Sydney hospital which had a table to show success rates for Gleason scores with any kind of beam radiation and failure rates for standard 70Grey EBRT for Gleason 9 ( as I had ) were 90%. Failure rates for Gleason 5 were far less, and comparable to successful RP, with little risk of spread.
I also had additional 31 Grey IMRT to PG and two small mets via Calypso in 2016, with continuing ADT and added Cosadex. Psa went down, then up, and following yearly PsMa scans showed Pca still present at PG plus the increasing presence of soft tissue and bone mets, so it sure did not seem that ADT had done anything to stop my Pca from spreading, or killing many Pca cells. Maybe Brachy Therapy for my PG may have worked, because 150 Grey can be delivered to PG without side effects to bowels or bladder. But then the 150Grey is a bother to all nerves around PG and to prostatic urethra.
Lu177 was just not around in 2010 at time of my failed RP. But it is now given at Peter Mac in Melbourne and is known as a Lutectomy, where circumstances and scans show it might be more effective than RP. For any Pca spread that lives on, ADT can still be used to slow down its growth. So there are more options now, but a man still has the long fight.
Back in 2009, either RP or RT were both considered as a possible fix for Pca but maybe only if all circumstances are most favorable, including having slow growing Pca that makes a large amount of Psa and does not spread soon after it starts in PG.
The high Psa > 5 for a low volume of Pca in PG means men get diagnosed early enough, so RP or RT has high chance of ridding Pca totally, so the men avoid the long fight.
But when my Psa reached 5, I had standard biopsy which gave me Gleason 9 which was later found to be inoperable, and with huge chance that spread had already occurred and was continuing.
The St Vincent page on Pca prognosies was removed from their website was removed soon after I read the page. Too contentious. Not good for Internet savvy worriers.
I had yearly blood tests for general health checks including Psa for 10years+ before diagnosis. I thought that would protect me from having the long fight. The Psa was most important blood number. I'd watched 3 neighbors die from Pca before age of Psa tests and all were diagnosed way too late. Unlike the deniers and avoiders, I was very aware of getting Pca, and it didn't help me much because the Psa threshold of 5 is way too high for many men; it should be 3, and I read many stories by men in a couple of old chat groups which existed around my diagnosis time and found some men had had routine yearly biopsies to search for Pca until it was found, and sure enough it was, and Psa was much less than 5, but they got a successful RP.
The old chat groups died because blokes running websites died of Pca and viruses ruined the website working, and no archives were kept.
If I had biopsy in 2004 with Psa < 5 instead of 2009, A Gleason 5 might have been found, and I'd have no reason to post anything here. An RP costing $,5000 would have fixed me, but instead the long fight due to system failure of not detecting Pca early enough has cost Medicare and myself about $150,000 at least.
The medical system lets too many men drift into high risk territory.
Back in 2009, there was only open RP, or by new robot assisted RP. Effectiveness of both depended in surgeon skills, and margins, so if Pca had intruded site of operation, it then continued growing. Getting 100% of Pca out by surgery is not always achievable. One little speck of Pca left behind in an RP is never going to die, and its the one to be huge bother years later.
ADT had been around for a long time, often by cutting balls out which was far cheaper than many years on ADT drugs. When ADT failed, there was only Taxotere, chemo, and that was considered palliative care because it failed so often, so 5 year survival after diagnosis was going well for many men. The outcomes were worse for men whose Pca made little Psa, or whose Pca rapidly mutated and was untreatable by anything.
So it ain't a bad idea for a man to have his PG cut out when he's 50, and done with having kids, and does not need to have sex. I know one man who was so terrified at diagnosis he paid the big $$$$ price to have bladder and PG removed and urethra cut off short as possible, and then have his two ureters from kidneys joined to a stoma on side of lower abdomen, and he wears a bag for pee collection, like 50,000 other ppl in Australia. He never had any "recurrence" of Pca.
My older sister had double mastectomy as soon as one small lump was found. She's OK at 75 because she accepted the most drastic solution at 64.
Patrick Turner.
My PSA history:
RP 12/2018
PSA < 0.01 until early 2020. Went up to 0.06. Then back down to und. Then up to 0.06, then back to und. Then up, then down.
Latest measurements 0.05 then 0.04 then 0.028.
My point is don't panic. Talk to your doctor.
I'm Gleason 9 and my MO is dead set that I shouldn't have radiation at this time. She's also against ADT for me. Wants me to continue with my unapproved per SOC treatments.
No problem with the questions. I have lots of answers. They might be all wrong but...
I did RP in 12/2018. Yup, SOC is standard if care.
My PSA is detectable but has gone down the last 2 measurements. So low though that I don't know if it really means anything yet.
I'm an ex engineer so I always like more data rather than less. For me the uPSA test is good. But I tend to take things in stride and don't stress if a short term issue comes up. My MO is exactly the same. Before she knew me she was afraid I'd freak out if my PSA went up.
I do non approved treatments. SPT. Risky but something has gone very good for me and my cancer has been held in check for 2 years (orig predictions were that it wouldn't hibernate for more than 3 months).
SPT is supraphysiologic testosterone. I did an estrogen based ADT for 5 months so I guess my SPT is really BAT. I have plans for potentially entering ADT in the future. Just hope I never have to go there. Misery for me and my wife. Doctors state various things to me: amazed, shocked, incredible, lucky, and one "I'm not surprised".
Thanks a bunch. You have a positive way of looking at it. I am coming up on 5 years since rp and was doing great until this bump so I will ride through it. Fortunately I became eligible to retire so I am happy about that but my wife wants me to work a bit longer. Talk to you soon!
Forgot to ask have you been getting scans and how often. Also we’re you clear? I was getting them yearly but now 18 months out so I hope that isn’t a bad thing with .031.
I had scans a month ago. Clean. I had them in preparation for radiation (required scans). But my onc talked me out of radiation. She doesn't want me to do any scans either. Her thought is that I'd just be getting more radiation and therefore more likelihood of secondary cancers.
Ok so even with .04 it was clean. Great I was thinking that with .031 my scans can be good. I had rp and they didn’t do any radiation even with a lymph node in pelvic area that shrunk with adt. In retrospect I should have asked for them to radiate the pelvic bed. But sounds like you can radiate later still. Thanks
My PSA was up to 0.06 but has dropped. I was never concerned.
Same as you I had RP. Lymph node positive. No radiation. I did a short course of estrogen ADT.
My MO is very unconcerned right now. Even when it was 0.06 she told me that I had nothing to worry about and felt that there was no chance that it had spread.
Everyone is different though so of course talk to your doctor. But I'm petty sure that if I were in your shoes I'd be living life with no worries.
Worry interferes with your sleep and immune system.
And you definitely can do salvage radiation therapy later (SRT). My MO thinks that doing it earlier has not been proven to be superior to waiting until your PSA goes above 0.2. Some might disagree but studies and trials support her professional opinion. If you would benefit by doing it early I would assume that your doctor would have told you.
What unapproved are you doing. I may be down for that vice adt. I have been having rib bone pain so I feel like it’s maybe psychosomatic and stress but you are right to not worry cause that doesn’t help. Just wonder if you ever get bone pain?
I had pain in my bones for the first few weeks after diagnoses. I believe it was psychosomatic. Almost without a doubt, it wasn't cancer.
Sometimes I feel pains in my abdomen, occasionally muscle pain in various places, there is a knot in my back that sometimes acts up. I'm pretty much 100% certain that none of these are due to cancer. Just muscle aches, minor cartilage tears, tendon strains, etc. Ab pain might be from the surgery. While I don't know the cause, it isn't severe and doesn't impede my life in any way at all. I sound like a broken record, but I don't worry about them. There's plenty of real stuff that comes our way without devoting time and energy to worrying about hypotheticals.
I'm doing SPT. I did 5 months of estrogen patches for ADT. Neither are SOC today (although for decades estrogen was used for ADT - been replaced with Lupron for reasons that may or may not be valid today - but that's another discussion).
SPT certainly isn't mainstream. And it can go awry with some people. Some apparently have genetics that react well with SPT. If you ever tried SPT you'd need to monitor your PSA closely. That's the best way that I know of today to determine if SPT works for you or doesn't. As of today, I've gone about 8 times longer than predicted without cancer symptoms. I attribute that to SPT. My MO and I haven't discussed it. I don't want to get her into a potential legal or ethical bind. I can't think of any positives coming out of that; certainly isn't actionable for me.
Wow you sound like me. I was exercising in May and had changed my diet and was having these ab pains too. Mostly stabbing pains and to right of belly button so I thought appendicitis but it turns out a hernia I had fixed a year ago May have popped loose so my upcoming ct will look at that. Sounds like you have the not worrying part down. I am a worry wart so i have to work on that. I was 52 at diagnosis and just hit 56 and I am eligible to retire now but we will see maybe one more year out. I’ll check out your history. How old were you at diagnosis? Crazy to think most people think it’s an old guys cancer.
Your blog is impressive. Very thorough and informative too. Thanks for helping me get through this weekend. You have helped to ease my worries for now for sure. I’ll keep you posted.
Managed to get in today for a scan. Since I was a same day add they said they would look it over and if abnormal they would hold me over so 20 minutes later they said let’s take out that Iv and let you go so I guess nothing abnormal but they said they fax the dr so wait for her to call with results . Anyway praying it’s all good. Talk to you soon and Happy Monday!
Well I haven’t heard anything and not wanting to call. My wife says the old no news is good news. I would think the radiologist would have called mo if bad.
I would think they would clue me in by now. Anyway I’ll see if I hear anything by tomorrow. I was looking over my blood work and it all looks good but also noted my total protein popped and read that can cause bone pain so that made me feel good because since June I started adding protein to my veggie smoothies so I may have too much protein for my own good. Says it can also cause weight loss. Amazing what your blood can tell you. I feel confident that probably not bone Mets because my psa would have to be much higher. Just a thought. Hope you are having a great week.
So dr called me to talk about psa of .031 and she said since the less than sign dropped that it was now measurable and that we would test in 3 months basically to monitor. She did say .2 is biochemical recurrent but we aren’t there of course. I said well did the ct tell anything and she said she hasn’t been in the office and I said the receptionist said it was on her desk and she would read it Monday. But she said with .031 symptoms wouldn’t be reflective of a problem and to not jump to conclusions. I said wouldn’t the radiologist have called if there was a problem and she said yes. But she did say the cancer can be floating anywhere in my body but until a scan shows where can’t do much but monitor. She also said the hope is the lab had an error. So we will see. If pelvic node does show growth Then that may explain my pelvic pain and then I will push for radiation of pelvic bed. My wife is worried going back on hormone treatment will ruin my bones. Talk to you soon.
Pretty much what I've learned from my MO. My PSA is 0.032. She dismisses it as nothing to worry about. I won't be concerned until it gets above 0.059. At that point, I'll try a 2-week cycle of keto. I doubt it will do anything but for the fact that my PSA has gone up to 0.06 3 times in the last year. Each time I did a 1-2 week bout of keto and it dropped. If that doesn't work, then I'll change a hormone. If it still goes up I'll change another. If it still goes up I might be forced to go low t (ADT for all intents and purposes but without some of the sides from conventional ADT). If it goes down, back to high t. If it still goes up I'll need to come up with something else (maybe even radiation as a last-ditch).
But 0.031 is so low I wouldn't worry. SOC therapy typically cuts in at 0.2-0.3. NIH has studies that show earlier better than waiting until it gets that high. Hence my lower thresholds.
PSADT is important also. If the time it takes to double is 10 years then even a 0.3 PSA is no reason for worry.
Overall I'd say that was great news! Good luck and let me know what comes up next.
Thanks Russ. Can you send me some keto info. So you wouldn’t worry about waiting until Monday for her to read ct right? My doc says if there is nothing retest in 3 months but if there was something she will get me going on something and not wait. But good thing she said they would have called her if really bad so based on that don’t worry right? You are the person with the closest path to mine it sounds like. Nice to meet you Russ! V/r mike. For got to ask as I’m 56 so how old are you?
Keto is a high-fat diet. Very low carbs. I found that I dropped out of ketosis if I went over 50-60 grams of carbs a day (a state you get in where your body burns fat preferentially).
My foods on keto were lots of olive oil, olives, walnuts, and salmon. I struggled to get to 2500 calls (my normal average is about 3800). So I can do it for 1-2 weeks and that's about it. Call me weak
I have some reservations about the diet. PCa is supposedly lipid driven in it's "youth". As it becomes more advanced it eventually uses sugar per the Warburg effect.
Also, you don't get many veggies, fruits, and whole grains and all the good things they bring to the table.
But, like I said, my PSA went up to 0.06 3 times and each time after keto for 1-2 weeks it dropped (twice to undetectable levels and once to 0.018). So I might man up and try it again sometime soon.
Please don't worry. You almost certainly have nothing to worry about. My MO thinks I'm doing great and beating the cancer and my PSA is higher than yours (well, about the same). Just take it one step at a time Mike. I live my life and do things I enjoy. I hated low T so I took a risk on the SPT. I like wrestling, working out, hiking, and I love my wife so I decided if I died after a year of SPT I'd at least enjoy the year.
I'm certainly not trying to talk you into SPT. No way is that risk for everyone and no way do most people value the things I value.
What I am getting at is this: do what you enjoy. Do not stress because that just takes time and energy and sucks the enjoyment out of your life. I know, I've been there. When I got the news of Gleason 9, T3b PCa I vegged for two weeks. I wasted two weeks of my life. Don't waste a day Mike.
And try to look at the bright side. I believe PCa was a wake-up call for me. My diet was good before but now it's impeccable. I always exercised a lot but now I have to tone it down or I'll go into the "too much exercise" zone. My inflammation has never been lower. My cholesterol has never been even as close to as low as it is today. My BP went up for a bit but now has come down and is about as low as it has ever been. My body fat hasn't been this low since my 20s. My energy level is incredible. I worked out 3 times today. Tomorrow I'll do 4 short workouts. I've always struggled with insomnia. Still not great but I've averaged 7.2 hours a night for the last year.
Be the best YOU can be. And do what YOU enjoy (unless of course, that means eating lots of ice cream sundaes
Thanks i really appreciate all the advice and positivity. We really are thankful to not be in the same boat as others. Okay I’ll talk to you soon Russ and have a wonderful weekend with the wife! I know I will do that too.
Got my ct and it’s all good. Even my fatty liver is now normal. So I asked if I can run a psa in 2 months vice 3 so waiting to hear if dr is good with that. Anyway thanks for the prayer and positive thinking.
Hey buddy. Well my latest psa went up to .053 from .031 so not quite a double. Anyway Dr gave me option to go back on adt for 1 year or 2 so I’m going for it. I want my < symbol back. Anyway thought I would let you know. How are you doing and have you had a psa check since we last spoke?
Hi Mike, your PSA is still quite low. Lab had multiple snafus but hopefully in the next two weeks. My latest was 0.042. I'm still feeling good.
ADT should drop the PSA and slow down the cancer. You might want to do what you need to prevent CRPC. I was on ADT for 6 months and I'm planning on using it only as part of a BAT program. I'm on the high testosterone part now and have been high t for 16 months.
Ok thanks Russ. I was on adt from august 2016 to august 2018. We didn’t even talk on radiation so that isn’t a concern at this point. What’s bat again?
Intermittent ADT delays CRPC. Intermittent ADT is more conventional than BAT. BAT might become standard in the near future since many medical doctors and NIH researchers have been looking into it and conducting trials.
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