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The more I read the more un-educated I feel. Yes, Lenny was right. I should not be a slave to my PSA, but at the same time it is the only measurement of the success of the treatment. After reading Lenny's story here, it's obvious that he has found life outside this disease and should be applauded both for his success and his efforts to help others.
I did not realize there was that much inaccuracy in the testing procedures. I also did not realize that PSA was produced by glands other than the prostate. One of the questions I asked my surgeon prior to the biopsey was can PSA's can fluxuate according to diet or activity. The question was never really answered, but the results of the biospy pretty much blew that theory out of the water anyway. This whole thing has been a learning experience and it seems it has only just begun.
I know there is more to life than waiting on the next PSA test, it's the uncertainty that bothers me the most. As Lenny says, "Tomorrow will be as good as today". I hope I can achieve that certainty.
The entire process of diagnosis and treatment for prostate cancer is uncertain and that is something we all have to come to grips with. I don’t know how long it will take you, but I was diagnosed about the same time as Lenny and I can assure you that after 12 years, I’m OK – pretty relaxed, even though I have to have an important PSA next week which MAY tell me if it was a good idea to stop ADT (Androgen Deprivation Therapy) :- )
It seems to me that you haven’t been through the Yana website because some of the issues you touch on are pretty well covered in the site. Can I suggest you go along to the piece I called PSA 101 because there are more issues that might be of interest to you there, including those activities that can affect a PSA reading.
There is also a link to an experiment I ran several years ago when I had daily PSA test to see what ‘natural’ fluctuation if any was thrown up. My PSA numbers varied considerably, at one stage increasingby 35% in three days, dropping back to its previous level three days later – imagine how I would have felt if, by chance I had my PSA taken when it hit this peak!!
There is no excuse for your doctor not to have given this information to you. It is easily accessible.
When I read about the adrenal producing PSA I looked on the web and could find nothing. Could you give me any info about this subject. The reason is that when my PSA started rising after surgery they performed another series of radiographic tests to see if cancer had spread. The tests were negative but they did discover a large cyst on one of the adrenal glands. My urologist said not to worry about it. Do you suppose the rise was due to this adrenal irregularity? Thanks Terry.
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If you have indeed become a slave to your PSA (and I can understand why that might be) and therefore find it difficult to accept Lenny’s very sound advice, perhaps you need to know a little more about PSA tests in general, because there are some pretty substantial misunderstandings.
Here are three facts about the PSA test:
1. It is an inaccurate test. No laboratory will guarantee an accuracy higher than 80% so they should really quote a range of about 25% each way when giving results. So your first result would have been between 0.04 and 0.06 with a median of 0.05 and the second a range of 0.05 to 0.08 with a median of 0.06. If this were done you would see clearly that both test fall within the same range.
2. It is NOT> prostate cancer specific. An elevated PSA result is not always directly related to prostate cancer activity. In the substantial majority of cases – more than 65% - it is NOT related to prostate cancer activity.
3. It is NOT> prostate gland specific, despite it’s name [PSA is an acronym for Prostate Specific Antigen] . There are other glands in the human body that excrete the substance labeled PSA, notably the adrenal glands. The quantities are very small and normally would not figure in any concern, UNLESS you are using ultra-sensitive tests, as indeed you are. Then it becomes important because these other glands can and do increase their output for not apparent reason. This ‘background’ PSA as it is known can cause men to take unnecessary action instead of observing the PSA levels over time to see what is happening.
As I say I understand completely why you are concerned, but perhaps a little more knowledge may help you?
My filing system is a mess and I can't find the article I am looking for but here are a couple of references for you:
Prostate-specific antigen messenger RNA is expressed in non-prostate cells: implications for detection of micrometastases. Smith MR, Biggar S, Hussain M. Department of Medical Oncology, Fox Chase Cancer Center, Philadelphia, Pennsylvania 19111, USA.
Prostate specific antigen (PSA) is generally believed to be expressed only by prostate epithelium. If this were true of PSA, RNA, then detecting PSA RNA in cells outside of the prostate would indicate metastasis. PCR can detect rare prostate cancer cells. To enhance sensitivity, we developed "nested primer" PCR to detect PSA RNA. With this method, PSA RNA is present in several non-prostate cell lines, including BG-1 (ovarian), SK-MES-1 (lung), and HL-60 (myeloid leukemia), and some normal blood. A low level of PSA RNA detectable by nested primer PCR is present in some cells of non-prostate origin and may interfere with sensitive methods to detect micrometastases.
Extract from Journal of the National Cancer Institute, Vol. 88, No. 21, November 6, 1996: Ralf Junker., Burkhard Brandt, Axel Semjonow, Gerd Assmann
At a low level, PSA is expressed in the periurethral and perirectal glands, peripheral blood cells, and other tissues Furthermore, the structural homology of PSA with other kallikreins can lead to immunologic cross-reactions in the analytic system. Moreover, residual prostatic tissue cannot be completely excluded, even after radical cystoprostatectomy.
I came across another piece on PSA, which demonstrates the wide variety of sources of the protein:
When PSA was discovered, it was thought to be prostate tissue-specific. As more sensitive PSA assays were developed, PSA was traced to various sources not prostate-tissue related. The fact that PSA is not prostate cancer-specific makes it a less than ideal PCa marker. The notion that some PSA could be produced by other tissues certainly complicates the matrix. Here is a list of possible sources (not necessarily a complete list):
1. Female paraurethral glands (Skene's Glands): The Skene's glands are under androgen regulation and are the female equivalent of a prostate gland. These glands do not fully develop but have been known to stain positive for PSA.
2. Breast tissue in women:
a. Breast cancer tissue:Using a PSA assay with a detection limit of 0.01 ng/ml researchers found PSA levels of 0.03 ng/ml or higher in 30 % of the tissues sampled. PSA is produced by breast cancer cells that are positive for ER and not in those that are negative.
b. Other breast tissues. 30% of women subjected to breast reduction express PSA in normal tissue.60% of women with benign breast disease express PSA in their breast tissue.
3. Breast fluids: PSA is detectable in all breast fluids tested. Milk, cyst fluid and nipple aspirate demonstrate detectable PSA. The concentration of PSA in these fluids vary from undetectable to 5000 ng/ml.
4. Amniotic fluid: PSA is present in amniotic fluid. Concentration is highest at 14 to 21 weeks of gestation. The prevalent form is free-PSA and the concentration of PSA in amniotic fluid correlates with the serum PSA of these women. PSA secretion is not related to the gender of the fetus.
5. Female serum:Using a PSA assay with a 0.1 ng/ml detection limit, about 10% of females express PSA in serum.Using a PSA assay with a 0.001 ng/ml detection limit, about 100% express PSA in blood sera. The predominant molecular form is PSA-ACT
6. Ovary, Endometrium and Other tissues:PSA is detectable in about 3% of ovarian cancer cytosols.PSA mRNA was detected in endometrial tissues by Clemens et al in 1994.PSA immunoreactivity has been reported in kidney tissue, pituitary tissue, axillary and apocrine sweat glands. This is using polyclonal antibodies. The results are not reproducible using monoclonal antibodies.
7. Other Cancers: PSA has been detected in trace amounts in lung, adrenal, colon and salivary gland cancers.
The presence of PSA in all these tissues detracts from the specificity accorded to PSA at the time it was discovered. In spite of this, PSA is a useful marker to identify the presence of an abnormal condition in the prostate. Seminal plasma is the richest source of PSA at 1,000,000 ng/ml.
Your situation is similar to mine, and I got very clear advice from my surgeon. (I'm not on the mentor list here.) I had a single small positive margin from surgery in July 07. And the pathology was definite that some cancer had escaped the capsule. My PSA at 5 weeks post op was 0.1, and the same at 9 weeks post op. I didn't have the extra sensitive PSA test results that you have.
A week after surgery when my surgeon and I discussed the pathology report he suggested that I consider adjuvant radiation, and discuss it with my urologist. After the PSA of 0.1 report he reiterated his suggestion, saying that 0.1 was fine, but not the 0.0 that we most wanted. He also said not to start radiation until my continence was fully restored. My local urologist suggested I start the radiation as soon as I felt ready, not to wait. The urologist seemed concerned about the extensive perineural invasion but my surgeon didn't seem bothered by that. Both surgeon and urologist are very experienced.
I cannot address the location of your positive margins, but likely you should understand the implications of the location, if there are any. Mine was different.
I started a 60Gy course of radiation 13 weeks after surgery, and it went smoothly, 30 sessions. I've had three PSA tests since then, all at 0.0. I feel great and I'm happy with the course I have taken.
I suppose that you would do well to get adjuvant radiation also, given your situation. I don't think it is urgent, given your very low PSA. I think you should read up on it more and be ready to talk turkey with your doc at your december appointment. There may be other reasons why radiation is not appropriate for you. But if you do radiation it is most valuable to do it while your PSA is still quite low. Don't wait for it to get up to 0.50 or higher.
In summary, I dont think the rise from 0.05 to 0.06 is of consequence. But with the positive margin as well as some sign of remaining PSA I do think you probably need additional treatment, and sooner is better. But there is of course a chance that you will find yourself disease free over time without any further treatment. And getting radiation like I did may be unnecessary. But I think the odds are against you on that bet, given the info you have supplied.
It's obvious from reading the comments to my post in this forum that I still have a lot to learn. I seem to have read more of the mentor stories than studying the actual disease. So, it's back to the books and late night cramming sessions!
One thing I have definately noticed is the wide variety of treatment options and yet no single treatment seems to offer the "magic potion".
Like everyone else, I'll continue on and hope for the best.
You could do worse than start with my guide, or even following all the links on the Yana site - especially the Resources page. If you want a hard copy of my booklet, drop me an e-mail giving me your snail mail address I'll get one off to you, hot off the press. Or you will be able to download a copy as soon as I get it on the site - but since it is 42 pages long, you might not want to print it yourself.