I was diagnosed back in 2017 with 3+3, later upgraded to 3+4, but with less then 5% of G4. Epstein reviewed and said he would go against Johns Hopkins policy to automatically treat ANY amount of G4 and stick with AS, at least in my situation. Before and since my diagnosis, my PSA score has remained stable hovering around 0.5 to 0.7. I had a test at the end of last October showing 0.7.
Since then, I had to change my insurance company (OSCAR left CA) and, unfortunately all of my doctors. I switched to Kaiser and had a PSA test done a few days ago which showed 1.4. So, if it's accurate, it's a doubling in about 4 months.
Most people shrug it off saying my PSA score is so low and it doesn't really matter. But, the fact is that I have a tiny prostate (less than 19cc) and have been on 1mg finasteride for close to 30 years. So, my prostate is not going to ever generate a lot of PSA on an absolute scale. However, a doubling of PSA at any level is concerning when cancer is already diagnosed in the patient.
The only variables I can imagine that would cause this sudden doubling would be that I'm now using a different blood lab and a reading error occurred, or somehow I irritated my prostate coincidentally before the test, or the cancer is actually growing/spreading.
Does anyone have any experience with switching blood labs and receiving an errant result, esp one that is double the value?
Any other thoughts about this?
I don't have a new urologist yet... I'm in process for a referral and of course I'll discuss the issue with them then. In the meantime, I am definitely concerned.
Thanks!
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I had two incidents of lab erroneous readings : One was 600% more, the other was 200% less. My rule, as I use 2 labs for error detection, is that up to +/- 30% on the anticipated value is acceptable. More, either way, calls for verification re-testing by the other lab (usually the next day). Also, for a no-nonsense PSADT you need 5-6 monotonously advancing samples. PSADT derived by less samples, not to mention two (2), is a joke.
PSA is not a good indicator for AS. PSADT is not defined for values less than 0.1, but any rise while taking finasteride may be real. It is a good idea to get an mpMRI and a repeat biopsy.
Tall_Allen, did you mean to say values less than 1.0 rather than 0.1?
I take less than 1mg of finasteride per day and I also skip one day per week. I basically cut a 5mg tablet into 6 pieces to last one full week. My previous uro didn't seem to think it would have much, if any, effect on my PSA score. It's hard to know, I suppose.
No worries... I'm due for an MRI soon and that'll ultimately give me a clearer picture. The PSA doubling is scary and emotional.... It's not real evidence of anything yet.
And just to follow up on finasteride being cumulative... From what I understand, it stays in the body for about two weeks, so once you're on it regularly, it maintains a certain level. Is that not correct? I'm not clear on how it would be cumulative in term of PSA levels.
What I meant by cumulative is it slowly but inexorably shrinks the prostate, even at the 1 mg dose. So if you have been on it for a long time, it would still cut your PSA in half, and, more to the point, any increase in PSA cannot be attributed to BPH.
My understanding is that finasteride doesn't actually shrink the prostate. Instead, it blocks DHT which causes the prostate to enlarge thereby allowing the prostate to shrink. My prostate has never been enlarged. I started taking it at the advice of my doctor when I was 30 years old for hair loss. He told me I would thank him for the "hidden" health benefits later in life. (One huge benefit was that doctors were easily able to spot VERY early PCa. My prostate is about 19cc's.
Either way, I do know that any increase in PSA is not a good sign in my situation which is exactly why I'm concerned.
I couldn't tolerate 5 mg finisteride. It caused dental problems; very sensitive and painful teeth top and bottom on one side. I decided to stop the finesteride. I wonder if 1 mg dose would be tolerable and helpful. I only got to talk to a physician's assistant and not the urologist at my last recent visit so the discussion about finesteride wasn't productive.
There are a few Kaiser Permanente facilities near me, which is the San Fernando Valley in Los Angeles. Are you in the LA area? If so, I'm going to Porter Ranch and Mission Hills depending on if I'm seeing a GP or uro. My previous uro says he knows some good ones at Kaiser and I'm waiting for his recommendation(s).
Not moderator, but sick of hearing Kaiser bashers, like you, that have not been there to make an informed statement.
Baseless comments in a thread, where the OP mentioned he is going there.
In the last mont at Kaiser, I had a video appointment resulting in a _complete_ blood/urine panel. full body CT scan, PSMA PET Scan, and DEXA scan. So my appts with Uro, MO, and RO in the next 2 weeks will be productive .
Gentlemen, we're all here for the same reason: to beat the hell out of this thing. There are obviously top-notch doctors at Kaiser. My previous uro, UCLA trained, recommended several that work at Kaiser and that he knows personally. He STRONGLY recommended the facility on Sunset. Now I was with Kaiser a bunch of years ago and had some complaints about them, esp concerning billing practices. Some of those practices and confusing wording about billing still exist. I've been with Kaiser barely two months and already had two billing issues with them, both of which were corrected in my favor. OTOH, the medical staff has so far been excellent.
The truth is that our medical system, for the most part, is broken especially with regard to finances, but also some shady practices by certain physicians and other staff. I ran into some of those problems at my last facility which is part of Providence network. They routinely get top marks for patient satisfaction, but at least on 3 occasions, I had to dispute questionable charges. Those were adjusted in my favor, but I shouldn't have to do that.
My point is, all of the medical systems have good and bad. Blanket statements about them don't help, however, there are issues and it is helpful to bring those up.
For now, though, let's stay on topic. I have no choice except to be with Kaiser. My only other option was to pay close to $1000/month with a $7000 deductible in order to keep my previous doctors. I'm not happy about it. But, I'll find my way through Kaiser.
Of course there can be lab errors.....so simply retest!!!!! There is NO reason to panic my friend!!! It doesn't matter whether someone here had an errant lab test!!! You have basically been on active surveillance? Since 2017? Have you had any additional biopsies since 2017. Generally, repeat biopsies are done on some schedule when doing AS....though some urologists might agree to schedule you for an MRI and look for something concerning..if nothing seen, skip another biopsy. I don't think most insurance would cover a PSMA PET for your situation?
So, 1sst hook up with an experienced urologist at Kaiser..go from there.
I've had 2 biopsies: the original one that found cancer and a follow-up much more invasive targeted biopsy. I've had 5 MRI's. So basically, I either have an MRI or biopsy once a year. I'm due for another MRI soon. It's been super stable the whole time. In fact, after I switched to a plant-based diet, some of the cancer no longer showed on the next MRI and my doctor was really shocked. I can't say 100% it was due to the diet or maybe the MRI just didn't quite pick it up.... who knows?
But, I agree with you - don't panic, get a new uro, get more tests.
Not sure about the PSMA PET scan coverage. I have a super high deductible anyway, so if I need it, I'd do a cash thing potentially.
That's very interesting. One of my PCa buddies told me his uro thinks finasteride might be helping fight his cancer. I'm skeptical, but if what you're saying is true, maybe it is
The other worry for me is that since my prostate is so small, it is potentially easier for the cancer to escape and metastasize. I don't really know if there's truth that or not. I hope not....
I've had moderate gynecomastia my entire life due to having naturally high estradiol. Taking Dutasteride has increased my breast size a small amount because Dutasteride increases testosterone (and estradiol) by about 20%, since less T is being converted to DHT.
The enzyme "5-alpha aromatase" converts T to dihydrotestosterone (DHT). PCa cells and their androgen receptors (ARs) do not respond to testosterone directly...they only respond to DHT. So, when people talk about "reducing testosterone to stop PCa growth by ADT", they really mean "reducing DHT to stop PCa growth by ADT". It's implied that they are really talking about DHT, not testosterone. But, it's more common to report testosterone levels, because that's what everyone measures.
Dutasteride is somewhat similar to the 2nd generation anti-androgens (enzalutamide, darolutamide), in that it interferes with AR activity by directly reducing the amount of DHT "fuel "available to feed PCa. The reduction of DHT by Dutasteride is on the order of about 90%.
The anti-androgens work a little differently by filling up and blocking the AR sites, thereby preventing DHT from binding to the ARs on the PCa cell. Of course, it's more complicated than that, but that's as best as I understand it.
Yes, there are lots of papers about finasteride. You may want to switch to the newer drug, Dutasteride (Avodart), though. If you private chat me your email address, I'll send you 10 papers on Dutasteride and PCa.
Physicians can use these results to counsel men regarding the use of finasteride. It is important to stress that finasteride reduced the risk of prostate cancer in a clinical trial marked by frequent monitoring for disease and was associated with an increased risk of diagnosis of high-grade prostate cancer. For a man considering using this medication, the greater absolute reduction in the risk of prostate cancer must be weighed against the smaller absolute increase in the risk of high-grade disease.
My understanding of studies that show an increased risk of high-grade disease isn't that it potentially causes it, but that it exposes it. My previous urologist told me that these studies have been shown to not be totally accurate regarding finasteride and high-grade disease. It's hard to know for sure about any of it, though.
Did you just change insurers or did you change labs. Tests use assays and they can produce different results. My tests state up to a 20% difference.Never heard about prostate size relative to PsA but mine was 21cc and my PSA was 156 at dx.
Both because I went for a PPO plan to an HMO plan (Kaiser) and they have their own system. It's suspicious that I changed systems and suddenly my PSA is double. Obviously, cancer is tricky and it can definitely start spreading, so I must fully investigate. I'm over the initial shock and now I'm fully engaged in finding out what's going on. I do have an upcoming MRI, but I'll have more PSA tests run and meet with whoever my new uro will be.
True, but I'd rather this last score just behave and stay where it belongs! LOL I won't lie, it was a gut punch.... I've accepted it now and only time and investigating will tell. I knew what I was getting into when I signed up to have prostate cancer. Oh wait.... I didn't sign up for this crap!!!! haha
Not to get too philosophical and esoteric, but I'm in MUCH better physical condition since I was diagnosed because I made several major lifestyle changes. Who knows if they in actuality are helping me with the cancer, but there's no doubt my body is in MUCH better shape now. I'm 59 and I feel 30.... When I was 30, I started having joint problems, started gaining too much weight, was getting a little depressed, etc... The cancer diagnosis slapped me in the face and made me sit up straight. For that, I'm grateful. For the rest, cancer can go F*** itself.
I hear that. I am stage 4 so many a gut punch over the last almost 5 years now. I also made many changes and in many ways and I am much more fit than when I was 40. My mother in law asked if I was healthy in ref to my cancer yesterday. I said "I am very healthy right now based on what my blood tests, scans and doctors say, I just have a ticking time bomb inside my body that could go off at any minute to live with".
I'm really sorry to hear that. I hope the blood tests and scans continue to show that you're stable and that you're able to beat this thing. I guess we're all in different places with this curse, but it all sucks no matter what stage we're each in.
My GP did an optional prostate exam (DRE) and felt a bump. She sent me to the uro. He checked it out and said it was calcification most likely. However, he said the left side of my prostate felt firm and the concerned him, so he ordered a biopsy. My PSA score at that time was 0.5. I've been on finasteride for nearly 30 years, so at that time, it was 23 years of 1mg daily dosage of finasteride - for hair loss basically. The finasteride may have prevented me from having a big surprise 10-20 years later since it kept my prostate very small and made it very easy for any physical abnormalities to be felt in-office. My uro told me it was likely that my cancer wouldn't have been discovered for 10, 15 or even 20 years later if I hadn't been on it. By then, it might have been a much worse problem.
That makes sense. I confess at this point I don't have much confidence in the usefulness of the DRE, though I'm glad it worked the way it's supposed to for you. My cancer was bigger, I went to a urologist when my PSA went over 5. Urologist did a DRE and said, "nice small prostate, no lumps or bumps". So a good pickup on your GPs part. Of course had you not been on finasteride your PSA likely would have been higher.
I was really lucky. My GP at the time was a younger doctor... and female. It was my first appointment with her. She asked if I wanted the optional DRE and I'm sure she was hoping I'd say no. haha I could tell she was slightly uncomfortable. I've never stopped letting her know how much I appreciated what she did for me because, lucky as it may have been, she really came through. And it was very lucky....
Definitely not--if one were to depend on DRE, I would have been considered a "false negative". Of course there was already suspicion of PC in my case based on my elevated PSA.
Looking in your throat is a little different, because you have direct observation. Some appearances are sufficient to make a diagnosis. You can also easily culture or biopsy.
Former Medical Technologist here. 0.5 to 0,7 is within the range of the same number. Could be hydration, lab equipment, or a number of none medical reason. 0.5 to 1.0 would be concerning to me. Not a lab error but rather expected lab variation.
And what about a score going from 0.7 to 1.4? Would that possibly be a lab variation? FYI: my prostate is approx 16cc in size. Also, I've been on 1mg of finasteride for over 25 years.
Ah, that of course is a larger difference. I would certainly prompt an inquiry to your physician.
He/she may ask for a second general PSA or a fractionated PSA. Fractionated PSA would look at free versus protein-bound PSA. If tests indicate further investigation maybe a PSMA pet scan?
Yes, that what I was thinking, too. I have yet to secure a new urologist, but will do so hopefully today. I'll keep you and everyone on this thread posted.
Be a team member with your urologist. With so many options now be open and curious about your treatment plan. Unless metastasis is involved PCa evolves as fast as glaciers flow. I am going to get a genetic survey, prolaris, as soon as i have my biopsy done. Good luck!
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