This is my 1st post here. Like many I searched for Tall Allen and found him here. I miss his insightful and knowledgable posts.
This month will be my 6th anniversary of completing Proton Therapy at UFPTI. If my signature is automatically included at the bottom of this post you'll see that my PSA has never fallen below 0.8. I've had some bounces along the way too. I'm having my annual PSA in the next few days and am hoping for a number below 0.8. I had another bout of protatitis and am finishing 6 weeks of Doxyclycline and Diclofenac anti inflammatory.
With such a relatively high nadir my connern is that my prognosis is not as good as it would be with a lower nadir.
All comments welcome.
Age 69 DX 06/14 1 of 24 cores positive, 5% involved, (3+4), psa 6.2
2nd opinion from JH (3+3)
3rd opinion from UFPTI (3+4)
mpMRI Duke: 50% chance of SV spread
SV fusion biopsy Duke 10/2014 negative
proton at UFPTI 11/14-01/15
PSA:
07/15 2.5
01/16 1.3
07/16 2.6
01/17 .8
01/18 1.4
04/18 .8
07/18 .9
01/19 .8
01/20 .9
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hwrjr
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Statistics never predict for the individual. And with your history of prostatitis, your nadir will probably always be elevated. But that is due to a known benign cause. All you can do is monitor it annually. If it ever goes over 2.8, you can get an Axium or PSMA PET scan to see if there is any residual cancer.
TA, Is there a specific reason you picked PSA 2.8 as upper set point. Please provide rationale for picking an upper number for people who are on ADT and have intact prostate (with h/o prostatitis.)
Biochemical recurrence (BCR) after radiation is defined as nadir+2. (Phoenix definition). His nadir is 0.9, so BCR is 2.9. He is not on ADT. That is the point at which clinical recurrence should be investigated.
Thanks for clarifying this point.Does the same formula apply to someone who never had Radiation or Chemo ? Or is there any other formula which gives an upper point for men who only had ADT for a year and whose prostate is 100% untouched ?
That is only for men who had radiation for localized prostate cancer.
For men with advanced prostate cancer, who are metastatic and hormone sensitive, there is no standard definition of biochemical failure. Trials define it in their protocols. STAMPEDE of docetaxel, for example, used this definition:
"The lowest PSA value within the first 24 weeks after enrolment was used to define a nadir, from which an increase of 50% and to a minimum level of 4 ng/ml indicated biochemical progression."
Most clinical trials started after 2008 use the PCWG3 definition of biochemical failure:
"After decline from baseline: record time from start of therapy to first PSA increase that is ≥ 25% and ≥ 2 ng/mL above the nadir, and which is confirmed by a second value ≥ 3 weeks later "
I have no idea why he is saying such things. Why does he believe your prostate was not completely covered? I assume your ROs were competent. I also don't know what he means by "prostate androgens." PSA does not come from the andrenals, androgens do.
Perhaps you caused confusion by posting on a site for advanced prostate cancer patients. There is a separate site for patients in your situation:
No worries. I reply there as well. Remember they are both public forums and people are trying their best to be helpful, even when they don't really understand. No one here is a doctor. I used to get upset by all the misinformation I saw posted. But we are all adults and responsible for our own decisions. I read The Washington Post every day, but some folks believe Breitbart News. I started a policy of not reading others' posts unless someone asks me to, or they reply to me specifically. It cuts down considerably on the time I spend here, and on my anxiety
Not a doctor but I want to make a couple of points. First of all, it appears that you had radiation therapy but so far no hormone therapy. There is always the possibility that rad therapy did not cover the entire prostate. Thus, some prostate androgens continue, and it does appear that perhaps a quarter of prostate was not covered radiologically. Hence PSA 0.8. Second, some PSA comes from adrenals, so that is another possible source. Unless there is a significant rise in PSA over 2 you are probably safe from further prostate cancer. If that occurs then you should go to hormone therapy. Just my opinion or comments; follow your doctor's advice.
Your suspicion that some part of the prostate wasn’t radiated, “thus some prostate androgens continue, and it does appear that perhaps a quarter of prostate was not covered radiologically”, doesn’t make sense to me. First, doesn’t a healthy prostate, one in which all of it was radiated and all cancer killed, still have androgens? Second, how did you arrive at 25% of the prostate not being covered?
+In my case there was attempt to radiate the prostate totally, and uniformly, but it was over forty sessions, with differing angles of irradiation each time. They go to great eforts to try not to radiate outside of the prostate and so they may miss portions of it on the perimeter or outer edges. The cumulative effect may leave portions that are not irradiated completely and equally, and thus may continue to excrete PSAs. In my case I had a small low level of PSA for a few years after RT, in the neighborhood of 0.6-0,8. I always thought it was due to a portion of the prostate that was not killed by the radiation. I could be wrong, if so, let me know. So what would explain it? So I was okay for three years then eventually my PSA climbed to 10 after almost four years so the RO judged metastatic PC when it crossed 4. The way I understand it, radiation kills not only the cancer cells but the good cells as well, unless the rad onc purposely tries to minimize the damage, for example if there is one-sided cancer. or if it is all localized. In my case it was uniform throughout.
If a radical prostatectomy is used to remove the prostate surgically, it is my understanding that at times there is small peripheral portions which may not be removed, which is similar. Radiation therapy is similar, I believe, it may inadvertently miss some of the pprostate, particularly on the perimeter. A complete normal prostate has PSA 4 normally. After RT if it nadirs at .8 I would think it was around 1/4 still there.
The guidelines are that if it stays below 0.2ng/mL, it is unlikely to be cancerous, (but that is for surgical removal, not radiation therapy). So that allows for a small portion of non-kill or non-removal of prostate. I suppose. My Gleason was similar to yours but a bit worse, like 5 of 24 positive. 4+3.
Based on what I've read over the years, POST radiation nadir may be around 1. There may also be some bounces to keep in mind. For reasons beyond my knowledge (I'm no doctor) that number 1.0 has been repeated many times in different comments and posts and studies I've encountered.
Seeing as you are not on 'ADT' you aren't supposed to go to '0', in theory. You aren't expected to be 'undetectable' because YOUR treatments haven't been DESIGNED to do that.
I'm not suggesting you are in permanent remission - ongoing monitoring is a must, but things look pretty good for you, all things being considered
At least you are not riding a run-away train .....
Hi hwr,Your situation to some degree is like mine...Difference is, it’s been almost 16 years since my last treatment. Also, i had the radiation that was available back then. Some conformal 3-D and IMRT...
I have been told by my docs (and Tall_Allen) the same about 2ng/ml above nadir...my nadir is .6...(I think about the same in having a high nadir)...Otherwise, my health is good!
Initial PSA 6.9 and Gl 6 . T2a...Had external beam at age 54. Have never had ADT Hormonal therapy...
There seems to be some confusion on radiation treatment for Prostate Cancer. Some think that the whole prostate is radiated. Image Guided Radiation Therapy focuses on known tumors. These tumors are located before the treatment for planning.The same is true for Proton treatment I am told.
If the whole prostate is treated then Yes there should be less prostate left but some.
With focused treatments lots of tissue will be left.
Now add in HDR Brachytherapy- that treats only the perceived tumors not the whole prostate.
Low dose Brachytherapy implants seeds that stay and radiate slowly. Again not the entire prostate but mostly.
I have had the focused external radiation nd two HDR Brachytherapy treatments.
Plus 24 months of Lupron.
Lowest psa while on Lupron was 0.16.
18 months after ceasing lupron psa rose to 3.7 and back on ADT. PSA now after 7 months is 0 6.
Proton therapy at UFPTI treats the entire prostate gland and several mm of the margins and about 1cm of the seminal vesicles. I can’t imagine UFPTI missing the target area by 25%. Could some of the cancer cell have been radiation resistant? Absolutely.
With radiation, my PSA will never become undetectable – because the prostate is still there. The size of my prostate is 15-20 grams according to my most recent exam in early January. The Uro said it appeared to be a healthy cancer-free prostate. The goal of most post-radiation patients is for the PSA to be < 0.5 and stay there forever. However, PSA values under 1.0 are also considered completely acceptable. I would love for my PSA to be ~0.5, but with chronic prostatitis I may never see that.
I'm having two PSA tests this week. One official from my primary lab at Wake Forest and another from Lab Corp which I pay for out of pocket as a comparison. I'm keeping my fingers crossed for 0.9 or lower.
BTW hwrjr, For entering the wrong room you must pay me a fine of $83.47 (tax and handling and shipping are included, does not include batteries). Only US cash, no checks, no money orders, no US or foreign stamps, no S &H green stamps., no bartering no Pay Pal and no kids.
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