After hours amd hours of reading about the rise in PSA post a Radical Prostatectomy, not one article or person has explained why 0.1 or 0.2 is (or three consecutive rises within a within a specified period) is considered biological recurrence. Is it simply it's a nice round number or it was the threshold prior to the introduction of ultra sensitive PSA test ? How many who test 0.06 thru 0.09 don't progress to recurrence? Evidence?
Anyone care to tackle this one?
Thanks
I progressed to BCR and had SRT at .07 and still failed the SRT after the RP.
Sorry to hear that! What was your PSA before the RP?
Thanks. Psa was 4.0
Based on what you knew, I imagine you had high expectations for a cure after SRT.
Sounds like .1 or .2 is somewhat arbitrary. How's your health otherwise?
Yes ofcourse but unfortunately it didn’t work. I have heard on another web site that a guy had his psa leveled off at around .2 for years after RP. Only this guy though, not a lot. But I didn’t want to wait and went ahead with the SRT at .07
That sounds anecdotal or second hand. I guess I'm begging the question.
same exact situation over here. SRT at .07 (plus casodex mono therapy). we thought for sure we got it.
Since my failing situation with SRT, I REALY don’t believe in it. At this point, the only thing I know it will stop psa from rising is ADT.
yeah we’re bummed about it too. my husband only had one undetectable afterward & now we’re on our way to lupron/zytiga. at least that’s what we think- one more PSA test soon to confirm the rise. what did you decide to do? doing ok?
I feel very good. I am very active. If it wasn’t for my dr telling me I am very sick, I wouldn’t know I am sick. My psa now as of two days ago is 1.23. I was so upset when got the results. I will do a psma scan in a week and based on the results of the scan, I will decide what to do but to me ADT should start very soon and may be SBRT if the scan shows Mets. Very frustrating and nervous situation.
good luck with the psma scan. wish we could get one, but we don’t have one nearby. frustrating & nerve wracking indeed. all the best to you ❤️
When my post RRP PSA reached 1.3 I had eight sacral lymph nodes (identified via 68Ga scan) excised robotically which lower my PSA to 0.54. My PSA continued to rise until I started applying Oestrogel (tE2) as suggested by Richard Wassersug. I have been applying the gel for 28 months and my last PSA was 0.003. I strongly recommend reading some of Richard's research/papers/books before you subject yourself to the expensive and commonly nasty ADT injections.
May I ask where you had surgery?
I had my RRP performed 15 1/2 years ago by Dr. Thomas Ahlering at UCI in Orange. He also did my LN excision. I have no regrets. One night in the hospital and on my waverunner in San Diego Bay three days later. NO adjuvant therapy for twelve years and still no indication that I have a disease.
No Persistent Stress Anxiety (PSA)
Congratulations: PSA now?
Thank you - do you know if he’s still practicing
Yes. His number is: 714-456-7890.
Thank you ronronHU
Do you have any article references you can cite for this therapy? Thanks.
Unfortunately, until the PATCH trial is completed sometime next year there is not a lot of recent information supporting the use of parenteral estrogens for PCa. These may be of some help if you can find links on the Net:
Smith K, Galazi M, Openshaw MR, et al. (2020) The Use of Transdermal Estrogen in Castrate-resistant, Steroid-refractory Prostate Cancer. Clin Genitourin Cancer. 18(3):e217-e223
This is the classic review article that was the set up for the PATCH study:
British Journal of Cancer (2008) Parenteral estrogen in the treatment of prostate cancer; a systematic review
Thank you ronronHU,
I had been reading your posts for many months now and looking at the patch trial and have not decided yet. I am just scared to try something that is not the SOC. I will definitely take an action right after my psma scan. I can’t wait any longer with a treatment. Thanks again, stay safe.
No reason to be "scared" to try estradiol therapy. It is a natural occurring hormone in both men and women. If it doesn't work for you just discontinue its use. Many transgenders here in Thailand have been using it for years and I have never heard of any problems. DES (an oral synthetic estrogen) was used for many years until it was discontinued in the mid 80s due to increased CV events. Transdermal estradiol (tE2) avoids the first pass hepatic metabolism phenomenon which was a problem with oral estrogens. Quite frankly, I feel much safer smearing an inexpensive estradiol gel on my thighs that has only boobs as a side effect (Tall_Allen recommends Tamoxifen to prevent breast enlargement) as opposed to subjecting myself to expensive drug injections that typically cause numerous unpleasant and debilitating side effects.
Hey Ronron.. You look awesome today !😎
Thank you bro...luv ya too!
Until then ! Dreams of driving in your pick up through the countryside live. Love to the lovers❤️🌵
Do you know what your estradiol levels are over the past two years?
E2 levels:
6/19/2018 - 31
8/3/2018 - 123
10/30/2018-258
1/22/2019 - 380
4/23/2019 - 145
8/10/2019 - 174
11/06/2019 - 47
2/11/2020 - 255
5/14/2020 - 146
Where are you getting the PSMA scan? I am having a hard time getting into a trial anywhere
I did one last year at NIH and am getting this one at Coulmbia/NY
It seems most of the trials I can find are either in NY or CA. Im have been hoping to find something more in the middle of the country since I am in the Tulsa area, but I havent had any luck so far. With all the Corona wonderfulness, I am trying to avoid airplanes. What have the cost for your scans been?
A MO told me that the FDA might approve it this year. It will make it easier so you don’t have to travel.
How did the PSMA scan go for you? Where did you have it done? Did you have to pay for it?
Thanks
It’s in Columbia NY. I have not done it yet. They require a lot of other scans to be done before the psma.
It is for historical reasons. When the definition of biochemical recurrence (BCR)was being discussed, the most widely available PSA test only went as low as 0.1. So the consensus was that anything over that, which is 0.2, would be deemed a BCR. With the widespread availability of ultrasensitive PSA tests, that merited a second look.
However, a new randomized clinical trial, called RADICALS-RT, found that outcomes for men with adverse pathology were the same whether they were treated immediately, or whether they waited for 3 consecutive PSA rises or PSA reached 0.1.
prostatecancer.news/2019/09...
So does it not still beg the question? Do we any good data about the numbers of men who do or don't progress from .02 to 0.1 over a period of time?
It tells you that if you have adverse pathology and you don't have 3 successive increases or have not reached 0.1, then you can wait for those events to occur, and results will be just as good as if you were treated earlier.
I want to know because a decision is time sensitive.
I'm in Doha and I intend to resign and leave here In 11 months So I'm cogitating over whether or not to request to have SRT now. It's top tier American oncology here .... and free. At 62, I can't get health insurance in the USA and my understanding is it would cost between 40 and 65k USD.
I get it. But you only had a focal positive margin- were they able to get a Gleason pattern at that margin? I've seen a study that shows that a first PSA ≥ 0.03 is predictive of BCR in men with adverse pathology. But your first PSA was lower, and your pathology was only marginally adverse.
That's right! Pathology indicated one focal PM and 90% G3 and 10% G4. PSA 0.01 for first 10.5 months.
The RADICALS-RT study was one of 3 studies in a meta analysis. The three randomized clinical trials were RADICALS-RT (UK & Canada), GETUG-AFU-17 (France), and RAVES (Australia & NZ). The meta-analysis, is called "ARTISTIC". There have been 5 years of follow-up so far. ARTISTIC analyzed the early data based on "event-free survival," which for the most part meant freedom from a PSA-defined recurrence after radiation. At 5 years, BioChemical Re-occurrence-free (BCR-free) survival was 85% for ART (Adjuvant Radiation Treatment) and 88% for SRT (Salvage Radiation Treatment = wait for RT until a BCR occurs). These findings were not statistically different. So, if one waits for SRT instead of getting ART one does not have significantly different outcomes at 5 year follow-up and there are side effect risks with ART including Urinary Incontinence & Uretheral Stricture.
The 5 year window of the study presents a problem which divides some top MO's (Medical Oncologists). Some believe practice should be switched in a case like yours & SRT at BCR and not ART should be done. Others believe 5 years for prostate cancer, which has a significant re-occurrence at greater than 5 years time, is not yet adequate to change practice and ART should be offered.
I had microscopic EPE (Extra Prostatic Extension) & microscopic Positive Surgical Margins (PSM) with a Gleason of 3 + 4 = 7 of which 85% was Gleason 3 & 15% was Gleason 4. My pre-surgical PSA was 9.7. Lymph Nodes & Seminal Vesicles were cancer free. I relate this as my Pathology was similar to yours ... yours is a little better than mine. My Medical Oncologist is a Dr. Vogelzang who is a prominent Prostate Cancer Treatment Researcher.
Dr. Vogelzang recommended and I got ART beginning 90 days after surgery (RP). After RT he told me he favored ART at this time over SRT since the ARTISTIC meta-analysis only covered the 1st 5 years & he wanted to see more longer term data as "....mistakes have been made in the past". Additionally, as far as I know Insurance still pays for ART & if SRT were the standard of care it would not. So, there are some differences of opinion here.
The problems I see with this decision for you are:
#1---are you willing to wait the few years you have before Medicare in hopes you will not get a BCR (BioChemical Re-occurrence) during the window of time after you get back but before Medicare?
#2---are you willing to take the low risks of RT complications? These might be even lower for you if some has passed since surgery .... you would need to ask (maybe your Urologist but this might require a Radiation Oncologist) to be sure about this.
#3---Do you trust the data from the 5 year ARTISTIC meta-analysis will hold for longer periods than the 5 years which has been studied?
I reacted well to the RT and was able to train for an IRONMAN triathlon (2.4 mi. swim + 112 mi. bike + 26.2 mi. Marathon run = 140.6 miles) during RT & I did this race about 4 weeks after RT ended.
IMO with your known window of "un-insurance" coming up I would seriously consider getting RT now as a BCR during your "un-insurance" period would be devastating financially, the RT complication risks are low and there is some difference of opinion among top MO researchers as to whether or not ART should be performed or one should wait and get SRT after BCR ..... so the entire story and standard of care is not yet completely settled. My MO (a prominent Prostate Cancer Treatment Researcher) told me, "I am happy you chose to get RT(ART)".
Whatever you decide GOOD LUCK,
Rick
I've put away some Greenbacks. Perhaps I want to investigate choices elsewhere if it comes to that.
The fact that you are intensely physical bodes well for your good outcome. My colleague's father runs marathons at 70 and 1 year ago learned he had Stage 4 PCa with multiple Mets. He feels fine and is responding well to treatment but gave long running a rest.
I vigorously walk 4 miles 6 days a week or go to the gym and eat pretty well. I've worked out most of adult life and intuitively know this is an important part of my good health.
Thanks for your feedback.
Precisely in my case!
what is the $40-65k?
40k to 65k American dollars is what I am guessing is the cost out-of- pocket in the USA if I were to need Salvage Radiation Therapy? That's a guess!
I'm 61.5 and don't qualify for Medicare. Don't know if I qualify for the Affordable Care Act in NE where I am from and have a house and family. For the last 8 years, I've lived and worked in Doha, Qatar. Their medical care for prostate cancer is considered excellent and it's FREE. They bring in Oncologists and Urologist from all over the world. Dr. Shah, head of Robotic surgery, at Piedmont Medical Center in Atlanta did my surgery. I had no side effects at all after surgery. However, one Positive margin was found at the posterior of the prostate area in the final pathology.
Free? Go for it . Get it done and get back to living .
Steve some links for ACA coverage........
from the 1st link....
" If you’re considered a “resident” of the United States for tax purposes, you’re eligible to use the Marketplace."
I'm a US citizen but no one will cover me due to 'preexisting Conditions'. Let me check out the links. Thx
well, as you know , that is a big deal with ACA.........pre-existing conditions do NOT exclude you! Thus, of course, ACA premiums have been higher than pre-ACA premiums. The mandate was supposed to help alleviate thisby including a lot of healthy persons in the insurance pool.....but many young folks said no to the offer, since young are indestructible!
I had an insurance license for many years.
are you considered a US resident for tax purposes?
TA This youtube answers some psa questions post RP: is there a best to available 😊 TY
If you have 11 months do you need to make a decision today? Radiation takes 7 weeks. So I would think you could check your PSA in three months and have more data to make a decision.
My original post has morphed into a social chat among several members? How does one politely discourage this?
Not a big deal but my email box is filling with chit chat.
Thanks
This link has some intriguing information. This pilot study done at JHopkins indicate than about 1/3 of patients with PSA <0.1 after RP will progress to BCR. They found with the AccuPSA test that only patients reaching a PSA < 0.003 three months after RP never develop BCR..
hopkinsmedicine.org/brady-u....
I remember reading that.
In my personal experience if PSA around 0.05 start going up slowly, sooner or later will be above 0.2.
What was was yourn history? Nadir at 0.01? After prostatectomy or radiation? How long till you got to 0.2?
It was in 2002, things were different at that time. After RP I think my PSA was 0.04 for a while then when to 0.06 and stayed there for a while, then to 0.07 etc. I was concern and the doctors said it was ""noise"" from the tests.
Eventually the PSA increased to 0.2, 16 months after the RP. At that time it was declared a BCR and radiation and ADT was recommended.
After radiation and ADT my PSA went down around 0.05 but then it went to 0.07-0,09 etc . Fourteen months later it was 0.4 and I started an immunotherapy clinical trial.
How did the trial go?
It went well, PSA remained stable for 7 years without any other treatment and normal testosterone values.
Is the drug on the market? Name?
The vaccine is called Prostvac. Very complex thing developed at NIH. They modified the variola virus to express PSA, then they infected the patients with this modified virus so the immune system could detect and attack PSA producing cells (PC cells in my situation).
Then to activate the killer T cells they modified a fowl pox virus (no pathogenic to humans) to produce 3 proteins which could stimulate the T cells. They administered this virus every month for 3 months and then every 3 months for 2 years.
It is not available. The phase 3 clinical trial done in advanced mCRPC did not show an advantage in overall survival.
When I was treated my cancer was castration sensitive non metastatic. Many patients in this phase II trial have a positive response to the vaccine. I can not understand why they have not done a phase III trial with BCR patients.
ncbi.nlm.nih.gov/pmc/articl...
There are some clinical trials with this vaccine:
I totally agree. Mine kept rising and reached .07. The recommendations now is to do the SRT at .05 for better results. Based on my results, I would have not done the SRT at all. It only stopped the rising for 6 months and now I have to deal with the side effects of it. It’s a hard call. I would have regret not doing it if I didn’t.
0.05 at 14 months after RP. Nadir was 0.02. PSMA PET CT before SRT for me non-negotiable. Blind SRT is a crooked coin toss. It is not 50-50. Some papers report 40-60.
They're relevant. thanks!
In Australia, Psa is measured down to 0.01. After a successful RP, Psa goes to < 0.01, and never rises later.
But 3 consecutive rises to 0.02 would indicate there could be Pca that is growing in PG, or at one or more distant met sites. If the surgeon doing RP did not remove all PG material the little remaining PG cells with no Pca may cause continuing detectable Psa, but chances are that in time that small amount of PG material could become cancerous and cause Psa to rise. Many men do not get 100% success after RP and Pca continues upward after maybe months or years from date of RP, and then they have a long battle with Pca that could go on for many years, with a variety of treatments, with nothing that gives a cure.
RP success depends on surgeon skill. I've known a few men who thought RP was the end of their Pca troubles, but it most certainly was not. I had men tell me they had the same primary treatment I had with EBRT and 2 years of ADT and they got a permanent fix with no Psa rise for 10 years, so they said I'd be OK. Oh how WRONG they were, and cost of my treatment since diagnosis in 2009 might now total aud $200,000 and ongoing. Most of that was paid by Australia's good Medicare.
Patrick Turner.
I am 72 yrs old. Yearly check ups with GP and PSA where normal. Approximately 2yrs ago, my PSA jumped from 0.2 to 38.7. Had biopsy done- Gleason scores 8's and 9's. Imaging showed had already metastasized to bone. Had Eligard injections and Casodex. PSA lowered to 1.0. Eight months later PSA started rising and Imaging showed more growth. August 2019, contacted by APCC. Oct to early Nov. received Immunotherapy treatment Provenge. Dec 2019 started Xtandi. April of 2020 PSA doubled then re-doubled and was switched to Zytiga in June. After 1 month no improvement. PSA in the 70's and imaging shows more bone involvement. Doctor recommends staying on Zytiga for another month. My weight is down at least 20lbs since diagnosis. Except for extreme fatigue, (side effect) I remain fairly active. Have appointment with radiology oncologist. At my age and weakened condition, I'm not sure I'll do well with radiology or chemo (Taxatere). Any thoughts greatly appreciated.
Just my thoughts. They are probably worthless, but I hope you appreciate them. Since your weight is down to 117 lbs, and imaging keeps showing more bone involvement, sounds like it is chemo time. They can't radiate your whole body. Try a few cycles of chemo. Most of us had very manageable side effects. You can quit if you don't like them. Gain some weight! Cheese and crackers has a huge amount of calories. I also eat fruit pies at night when I do my trips to the bathroom. Chocolate chip ice cream (3 scoops). Eat whatever you like, whatever that will get you to at least 140 lbs. Don't worry about dairy maybe causing cancer, you already have cancer. You can go on the Mediterranean diet later. Radiologist will prescribe radiation. Medical Oncologist will prescribe chemo. I would talk to both before I made a decision. It's your decision, so listen to your doctors carefully. Of course I'm leaning to chemo, but I'm not a doctor and I don't know the details. I am wishing you the very best.
Has your doctor mentioned a DECIPHER test?
What's that?
Google decipher post prostatectomy test. It’s a genomic test that measures how aggressive your tumor is and risk of metastasis. They’ll use your tissue from your surgery.
Got it! have my pathology specimen. Why isn't it used as a matter of course? Cost again?
Yes, very expensive. Insurance covers it for certain grades. I believe you’d be covered but your urologist could clarify.
I had the decipher test done. I had the cost locked in at 100 dollars by talking to a company representative. When I paid the bill he sent documentation reflecting they were changing to a pay scale base on income and family size.
How did you make contact with a company representative?
My doctors office contacted him then I called him directly. My score came back low risk so I put off srt for now but it is a risk waitng. One of my friends came back high risk so he immediately did srt.
When I finally paid, I made the payment by calling the company, they first wanted to charge me around 3000 dollars. I asked them to check the notes on my account then they changed it to 100 dollars.
It is my opinion that if months after prostatectomy and PSA is still detectable, then the “beast” is already systemic. If CT/MRI/BONE scans cannot see it, then SRT (salvage radiation) of the prostate bed is just a shot in the dark (shotgun approach, as radiation beams are tiny). My (RIP) Oncologist was a maverick. He believed that at that point, the next step should be chemo+hormonal therapy, and not wait until you are too weak to sustain chemo assault. I did that after it was confirmed that my SBRT has failed. technically it did not fail, it was just that I already had non-detected systemic by the time the prostate was radiated. To answer your questions, I’ve never been subjected to high precision PSA tests until 11 years from diagnosis. When my previous Onc passed away I found a new Onc and his lab uses high precision PSA test. But so far Zytiga has helped to keep the beast at bay. So, the keyword to consider is “confirmed” doubling time of rising PSA before doing the next treatment, meaning 3 or more PSA tests.
You're a veteran! Congrats on undetectable status. Each story is unique. Out of 10, how do you rate your quality of life?
My QoL have been excellent and very little limitation. I have been able to travel, hike, help with disaster relief activities (whenever there is one), and also have been able to play tennis at least once a week. When I was on 8 months of chemo (2010-2011) I was able to work half a day, Some weeks wearing a 24-hour pump for doxorubicin. Other days for infusion of docetaxel/Taxotere. I am 74 now and still felling great physically, although I do loose some muscle strength and stamina. AND hot flashes.
Best wishes Steve507. My Psa tests only go to <0.1 so I have no answer.
Why 0.1 or 0.2? That's what my ex-wife asked me on our honeymoon night...
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 07/31/2020 6:20 PM DST
turn off notifications? 😂 just the nature of the site ❤️
Test
Can you recommend a place in Germany that does the genomic Decipher test? Do you know what the cost is?
<0.1 to 0.1
Three months after RP to test PSA?
Docetaxel or not?
Biochemical Recurrence after Radiation
