Medical Forum / Diseases and Disorders / Prostate Cancer / June 2004
PSA ANXIETY
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charlie roemer - 25 May 2004 02:11 GMT PSA ANXIETY
By Dr. Paul Schellhammer
PSA, the acronym for prostate specific antigen, is a test familiar to many men whose acquaintance with it has been an emotionally charged experience. That's because PSA is a marker of prostate cancer: In fact it is the best cancer marker available in today's practice of medicine. Since half of all American men over 60 and more than three-quarters of those over 80 harbor some cancer cells in their prostate gland, it's easy to understand the impact PSA may have. But, as important as it is as a tumor marker in the detection and treatment assess?ment of prostate cancer, PSA reading can create problems if not kept in perspective. First, the PSA level does not reflect all the factors which affect the course of prostate cancer.
Furthermore the PSA number is a constant reminder of disease status that can work on the minds of prostate cancer patients. Men who have low PSA's after treatment and high hopes for a cure can crash psychologi?cally when the number begins to increase because a PSA rise points to recurrence of disease. Those with high PSA levels, although they feel physically well, must endure the dark clouds and distress generated by the threat of progressing cancer.
Simply stated, prostate cancer patients tend to evaluate their quality of life, even life expectancy, on the PSA number. It tends to become a Holy ? or Satanic ? Grail rather than just one component of the diagnosis and evaluation of treatment of prostate cancer. Over the years, I have learned that most patients tend to place great importance on their PSA levels. When I visit such a patient, introducing myself with "How are you?" the inevitable rejoinder was "How's my PSA?" If I was able to provide a good number ? zero or low and stable ? there was an obvious sigh of relief. If the number was not what would be considered a safe range, extensive reassurance and explanation became necessary. It was clear that the patient's attitude and assess?ment of his treatment was overwhelmingly influenced by his PSA number. I did not truly realize how much this was the case until PSA numbers became part of my life.
Some background information about PSA is in order. PSA is used to identify men at risk for prostate cancer; after diagnosis and treatment it is used to identify the success or failure of the treatment applied. I believe strongly that the routine assessment of PSA during periodic health checks called PSA screening, will identify cases of prostate can?cer earlier so that treatment can decrease prostate cancer mortality. This opinion is not yet supported by the necessary clinical stud?ies, however. (Such investigations are cur?rently underway in both Europe and America.) Despite this opinion that I hold that PSA screening is beneficial, I also recognize that many patients will receive the diagnosis of prostate cancer and be treated in order to rescue only some from death from disease. Indeed, treatment is not necessary for certain patients, specifically those who harbor a slow?ly growing tumor that will not cause problems for the remainder of their lifespan. This may seem counterintuitive, but prostate cancer is a disease of many stripes akin to a barnyard analogy of turtles (slow moving) and birds (fast flying) and other animals in between.
There's a saying that many men don't die of prostate cancer, they die with it. In other words, it's quite possible for cases of prostate cancer to be so slow in developing that patients live to advanced years before suc?cumbing to other diseases. When urologists are sure that a patient has this type of problem they can adopt the `if it ain't broke, don't fix it' approach. The problem, of course, is to determine if a case of prostate cancer really is of the slow-growing type. Is it really a "tur?tle", or is it more "birdlike"?
Research efforts are currently directed towards identifying with greater certainty those patients whose cancer may behave like a bird and for whom treatment and cure is nec?essary because of the aggressive nature of their disease. In our laboratory, we are ana?lyzing serum and tissue from men with and without prostate cancer to measure the protein constitution of each. The science and method?ology is termed Proteomics and has been dis?cussed in prior newsletters. It is hoped that these characteristic protein signatures or pro-files will be able to separate turtles and birds, and other animals, and also provide added value to PSA in the diagnostic process.
In the meantime, we work with the tools at hand, prominent among them that PSA reading. The most common treatment for PSA diagnosed cancers, is surgery or radiation therapy. Physicians directing treatment will tell the patient and his family that the measure of success of his treatment will be determined by examination, but especially the quarterly, semiannual, or annual PSA level. The desired objectives would be an undetectable PSA in the case of surgery and very low, stable PSA if radiation therapy is employed.
After surgery, which removes the entire prostate, it is anticipated that the PSA level will become undetectable. If this occurs the patient is, of course, overjoyed, and the physi?cian will reinforce the patient's sense of pleas?ure and satisfaction especially against the background of disruptive changes in urinary and sexual function that the patient is likely to experience immediately after surgery. The bottom line is that his zero PSA is a significant reward for his pain, discomfort and dysfunc?tion. Buttressed by a zero PSA, the postoper?ative patient's physical and mental forces become concentrated in recovering, healing, and recuperating. These are energy-consum?ing processes and the patient can still be con?sidered under treatment. Being under treat?ment is actually quite comforting; a patient draws strength from andfinds security in the support provided by his physician and medical staff. When recovery nears completion and the discomfort and dysfunction begin to resolve, the `under treatment' umbrella is removed which, in many patients, triggers a sense of insecurity. The patient is no longer moored closely to the pier of active therapy but finds himself adrift in a sea of some uncer?tainty. His only anchors are his visit to his sur?geon and, more critically, a periodic PSA read?ing ? and he awaits that PSA number with a great deal of apprehension.
Patients who undergo radiation therapy rather than surgery face a different problem with respect to their PSA readings. Successful therapy will ultimately lower the PSA to unde?tectable or only slightly detectable levels. Unfortunately, the fall to low numbers may take several years and, to make matters worse, the decline will not be in a straight line. It will have a sawtooth pattern, up one time, down another. Understandably, this will produce anxiety in the patient. He will worry that the decline in his PSA is too slow, or if it seems to be rising, that he needs more treatment, and so on. A physician has to exercise great patience and provide adequate counseling to allay those fears.
Studies have shown that most prostate cancer patients indicate they do not mind being otherwise sick as long as their PSA readings are good. In other words, their PSA number has become more important to them than their quality of life. This should not be the case. Physicians recognize that a rise in the PSA level, though it likely indicates disease activity, does not necessarily mean that imme?diate treatment is necessary. It may take months, even years, for the disease to cause symptoms, and indeed symptoms or problems may never appear! This is a difficult situation with which most prostate cancer patients feel uncomfortable, and understandably so. While we all face a ticking clock and know in the back of our minds that someday death will arrive, a rising PSA is a forceful reminder that the clock is ticking ? and why it's ticking. This is disturbing and unsettling. Almost everyone has had the experience of being sick and then recovering. But this is not the same as facing a rising PSA. The increasing num?ber places a known impediment to the quality and perceived duration of life. The clock is no longer remote. The enemy has entered the gates and there is an overwhelming desire to do something to block the PSA rise, and thrust the enemy aside. n
jhlms - 25 May 2004 02:42 GMT Good post, is spite of mine 6 minutes later..... I think, as one, recognize most of what you are saying....that the PSA level has become the benchmark for how one perceives his future. This is true so many times....including mine. The bottom line, however, is that it seems the PSA is the only defense to the greater offence. One can not fault another for casting his faith in the only signature available to determine "what's going on".
Respectfully, Jeff
> PSA ANXIETY > [quoted text clipped - 126 lines] > overwhelming desire to do something to block the PSA rise, and thrust the > enemy aside. n ButtercupsDad@dog.net - 25 May 2004 13:27 GMT >PSA ANXIETY > [quoted text clipped - 3 lines] >patient draws strength from andfinds security in the support provided by his >physician and medical staff. That's odd, I found comfort and support here.
nospam@please.com - 02 Jun 2004 09:46 GMT Should I be anxious? Just turned 50. Got a PSA test and result was 180. (One hundred eighty!!) I don't see anything here in this group anywhere near this level. I didn't realize I should have been tested earlier, but then had no insurance so didn't occur to me to get any medical tests.
Have been unemployed since my dot com went dot gone 2 years ago, so have no insurance. The day before my wife became eligible for some crappy insurance and a modest amount of life insurance for me, she was fired (funny, was day after state inspector interviewed her about conditions at the nursing home she was working for.)
Saw several good job prospects last week, but doctor told me to not bother looking for work as I had more important things to worry about.
Biopsy isn't for 2 more weeks, so I am wondering now what to do?
Name withheld in case if effects potential wrongful termination lawsuit for my wife.
The only medicine I am currently taking is anti-depression and some sleeping pills or anti-anxiety pills to help me sleep, but they are not enough to sleep well.
Guess I will know more in a few weeks when the biopsy results come in.
Thanks to all who post in this group :-)
MH - 02 Jun 2004 11:25 GMT Hi, guy..... There have been some others with PSAs higher than yours. Generally, it's not a good sign. But you will have to wait for the biopsy to be sure. Doctor will want to do bone scans as well.. to check for any spread. I would refer you to two main sources of information right now: Patrick Walsh's *Guide to Surviving Prostate Cancer*, which can be found in most bookstores..... and www.phoenix5.org , a fantastic Web site full of information related to the prostate, especially prostate cancer. Read all you can.... jot down questions to ask the doctor. And call and tell the doctor to let you know if there are any cancellations for biopsies so they can work you in ASAP.
In all likelihood, you will need to use hormone therapy to bring your PSA back down.... and hopefully keep it down for a long time. I know it's a lot to take in.... but don't give up hope!
And *DO* keep us posted.....please!
MikeH
> Should I be anxious? Just turned 50. Got a PSA test and result was > 180. (One hundred eighty!!) I don't see anything here in this group [quoted text clipped - 28 lines] > http://www.newsfeeds.com - The #1 Newsgroup Service in the World! > -----== Over 100,000 Newsgroups - 19 Different Servers! =----- c palmer - 02 Jun 2004 11:33 GMT hi no name :)
in a nutshell, a psa of 180 means that there's a strong chance that it has spread outside the prostate gland. that is what your doctor meant by more important things to worry about.
i know how the no insurance path is and boy is it bumpy........
are you a vet by any chance? you can get health care from the v.a.
i'll let the others chime in.
~ curtis
knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so."
Steve Kramer - 02 Jun 2004 12:07 GMT 180 is very high, but it is certainly nowhere near the highest of all the posters here. As a matter of fact, as an initial PSA, it's not even in the top five of those who have posted here since I've been here. But it is damned serious. And, if you already had your biopsy, then your doctor already knows the results. Were I you, I'd call and ask for a sooner appointment.
With a 180, you have a high potential that you have cancer. I'm not sure how high PSA goes if you have benign prostate problems, but 180 seems awful high for that.
Let us know what the doctor says.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .07 .05 Lupron 7/03, 8/03, 12/03, 4/04
> Should I be anxious? Just turned 50. Got a PSA test and result was > 180. (One hundred eighty!!) I don't see anything here in this group [quoted text clipped - 28 lines] > http://www.newsfeeds.com - The #1 Newsgroup Service in the World! > -----== Over 100,000 Newsgroups - 19 Different Servers! =----- Steve Kramer - 02 Jun 2004 12:09 GMT BTW, is your name "Steve" and have you posted here before?
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .07 .05 Lupron 7/03, 8/03, 12/03, 4/04
> Should I be anxious? Just turned 50. Got a PSA test and result was > 180. (One hundred eighty!!) I don't see anything here in this group [quoted text clipped - 28 lines] > http://www.newsfeeds.com - The #1 Newsgroup Service in the World! > -----== Over 100,000 Newsgroups - 19 Different Servers! =----- olfart - 02 Jun 2004 13:49 GMT > BTW, is your name "Steve" and have you posted here before? > [quoted text clipped - 19 lines] > > http://www.newsfeeds.com - The #1 Newsgroup Service in the World! > > -----== Over 100,000 Newsgroups - 19 Different Servers! =----- He hasn't had a biopsy yet and he would like to remain anonymous. Maybe we should honor his request so we don't scare him away
nospam@please.com - 05 Jun 2004 01:11 GMT >BTW, is your name "Steve" and have you posted here before? No, actually it is Chris, and this is my second post, regarding what to do when faced with a PSA of close to two hundred.
I would have had the biopsy scheduled sooner, except the only doc locally (under 100 miles) does this on Monday's only, and with Memorial day, and the doc taking a vacation, June 14 was pretty much the soonest I could get in for. This specialist didn't think waiting another 2 weeks was going to make much difference.
It didn't occur to me to get a PSA test 2 years ago although hindsight is wonderful. I am going to recommend a younger brother get tested now. When I was first unemployed (right after the 9/11 fiasco) I thought I would get a job in a few months, and get back on benefits and then worry about annual physical and all that. But the job market for me, when from bad to worse to non-existant
It looks like I am going to get some state paid medical benefits as my family income is now so low, what with unemployment running out and such, so that is one big worry off my mind.
I normally am not afraid to post my name, which allows most people to find out my home address, etc.....but have been wondering what happens when you go to apply for a job and they google for postings. Of course, I am gong to have to explain not working for years anyway, and am close to unemployable now, and if I have bad cancer, it may be a moot point. Trouble is, if I get a good job with good health benefits, I will immediately drop from state paid benefits, but have months or longer to go before employer paid benefits kick-in, depending on how they cover pre-existing conditions.
A grandfather had prostrate cancer and went the estrogen treatment way, because he was in 70s. However, he had lots of side effects and regretted it. He started getting strokes which eventually killed him, and some of his immediate family wondered (or strongly suspected) if it was related to his treatment.
This makes me a little afraid of hormone treatment. Sounds like I may be in for lots of surgery, radiation, chemo and anything else they can think of. At some point your quality of life deteriorates and you wonder if it is worth the trouble. In my grandfathers case, he would have been better off doing nothing (but he was in 70s and I just turned 50.) I also wonder if running up large medical bills and then dying anyway is worth it.
A local doctor at the hospital was explaining why hospital costs were so high: He showed the bill (without name of course) for a 2 week stay for someone who came in with terminal cancer. It was around half a million dollars. The doc said had he been white he would have been given strong pain killers and told to go home and die. But because he was a minority the hospital feared bad press, lawsuits, etc. and did everything possible, even though they knew there was no chance. So the man spent the last 2 weeks of his life being worked over by the medical system instead of going home and spending last days with his family (assume there was one, but know nothing of actual circumstances.) Doesn't sound like a good use of resources to me.
So the question remains, how bad does it get before you give up? Clearly if a little treatment will get you another year of life it is worth it....but what if it takes massive treatment to give you another month or two, and those months are not very fun months? Even is the state is paying, is it right for me to burn up money that could be spent on something better, like maybe helping children?
At least you fellow posters here tell it like it is, and I certainly appreciate the honesty. The docs are trying to keep me from getting too depressed (too late!) so haven't given me any kind of prognosis at all or discussed how things might go. I guess they will tell me more in a month or so when more tests have been run, but my anxiety level now is pretty high and not going down :-(
Thanks for all the info you good people put out, I appreciate it!!
MH - 05 Jun 2004 01:55 GMT > At least you fellow posters here tell it like it is, and I certainly > appreciate the honesty. The docs are trying to keep me from getting [quoted text clipped - 4 lines] > > Thanks for all the info you good people put out, I appreciate it!! Hi, Chris... Welcome to the club nobody wants to join. The anxiety, of course, is normal... if it were not there, we would wonder about you. You make some good points on quality vs. quantity of life in your post.
Take good care! And please.... keep us posted. I wish you well! MikeH
Steve Kramer - 05 Jun 2004 21:19 GMT > I would have had the biopsy scheduled sooner, except the only doc > locally (under 100 miles) does this on Monday's only, and with > Memorial day, and the doc taking a vacation, June 14 was pretty much > the soonest I could get in for. This specialist didn't think waiting > another 2 weeks was going to make much difference. 2 weeks for a biopsy isn't a terrible problem. My PSA came back on the 17th of October and my biopsy was November 1.
> It didn't occur to me to get a PSA test 2 years ago although hindsight > is wonderful. I am going to recommend a younger brother get tested > now. How old is your brother? If you are less than 50 and he is greater than 35, he should get tested. In any case, many people are being diagnosed early in their 40s, so if he is older than 40, he should get tested. If nothing else, it provide for a baseline that might be very important later.
> I normally am not afraid to post my name, which allows most people to > find out my home address, etc. I would not recommend posting your real name. You will note that very few people here do.
> A grandfather had prostrate cancer and went the estrogen treatment > way, because he was in 70s. However, he had lots of side effects and > regretted it. The good news is, they don't use estrogen anymore. The bad news is, every type of treatment has side effects. Some causing impotence and/or incontinence or worse.
> In my grandfathers case, he would > have been better off doing nothing (but he was in 70s and I just > turned 50.) I also wonder if running up large medical bills and then > dying anyway is worth it. You have just stumbled onto a basic truism of PCa. This is not your grandfather's case. He had to go the estrogen or death route. You probably do not have a surgery option (we'll see), but you have lots of other options and hormones are not nearly as bad as they were then. Neither is, for that matter chemo.
> Even is the > state is paying, is it right for me to burn up money that could be > spent on something better, like maybe helping children? No. But that is a senseless argument. Those kids will get theirs.
> At least you fellow posters here tell it like it is, and I certainly > appreciate the honesty. The docs are trying to keep me from getting > too depressed (too late!) so haven't given me any kind of prognosis at > all or discussed how things might go. I guess they will tell me more > in a month or so when more tests have been run, but my anxiety level > now is pretty high and not going down :-( I have no problem telling it like it is. But, the fact is, your doc does not yet know enought to give you a prognosis. Best case: You have BHP and not cancer. I consider it unlikely, but it has to be allowed until we know more. Worst case: You have inoperable cancer spread thoughout your body. Your only choices are hormone therapy then chemo or hormone and chemo or chemo. I'm going way out on a limb to say with your PSA, worst case is 6-8 more years. But, even at that, we may have a cure in 8 years. Probable Case: Somewhere in between.
Get your biopsy. Get your bone and CAT scans. Then ask the doc (and/or us) for a prognosis.
nospam@please.com - 27 Jun 2004 11:00 GMT >I have no problem telling it like it is. But, the fact is, your doc does >not yet know enought to give you a prognosis. Best case: You have BHP and [quoted text clipped - 7 lines] >Get your biopsy. Get your bone and CAT scans. Then ask the doc (and/or us) >for a prognosis. Got the biopsy results. They said all samples were 90% cancerous. They gave me a gleason of 4+3, but didn't provide any additional information. I had to ask a nurse for the results as the doctor didn't volunteer any info. He just gave me a shot of Lupron right then, and scheduled the bone scan. I don't know if they are going to ask for a CAT scan but I don't think I can afford it right now anyway.
The official bone scan results get discussed next Tuesday. The doc doing the scan did show me a little picture on the monitor, and said he didn't see anything too bad, but did suggest the back pain I have was arthritis! I am not sure if there is a more detailed scan that a doc looks at to make his official report, so I don't know how far things have progressed.
Is is unusual to get a shot of Lupron so soon in the process? I don't seem to have any other tests scheduled. My follow-up meeting is in 2 days, and I have no idea what happens then. So far the urologist has had little info for me. I guess that will be the time to ask lots of questions but the doctors seem to be in a real hurry to get me in and out, so am not sure how much time I will get to talk to them. The urologist is considered quite good from those I have talked to, but the alternative is to drive 100 miles to the Seattle area to find another one, assuming I can find one taking new patients.
My insurance runs out this month (June) so I am not sure what to do next. I may get some state aid in a month or two, so may have to wait for further tests of treatment.
What kind of things should I be asking my doctor at this time?
How long will I live given no treatment? How long given treatment A, or treatment B, or both? Stuff like that?
Guess I should know more in a few days :-)
Beverley - 27 Jun 2004 15:29 GMT Next step might be a good dose of radiation. Right now they are trying to determine if the cancer is still in the prostate. If they think it is then they will probably remove the prostate and then radiate the pelvic area later.
You might check with social services and see what you can do about getting aid if your insurance runs out. Or it might be worthwhile to try to keep the insurance going by paying the premiums yourself. Spend some time on the phone Monday and get some answers. Bev
> >I have no problem telling it like it is. But, the fact is, your doc does > >not yet know enought to give you a prognosis. Best case: You have BHP and [quoted text clipped - 46 lines] > http://www.newsfeeds.com - The #1 Newsgroup Service in the World! > -----== Over 100,000 Newsgroups - 19 Different Servers! =----- Bill Denton - 28 Jun 2004 17:26 GMT "Is is unusual to get a shot of Lupron so soon in the process? ... How long will I live given no treatment?"
It sounds to me like your uro has concluded that it is most likely that you do not have organ confined disease and is proceeding under the premise that you will not have an RP. Hormone treatment IS treatment so you are not going untreated. A short course of HT often precedes RT so he has both those bases covered by starting you on Lupron. From what I understand most surgeons would prefer not to have had HT prior to surgery. The radiologist gets a larger image than the one on the screen. Don't be surprised to learn about degenerative joint disease or old fractures you never knew you had. W/ a PSA of 180 I would think that any mets would be large enough to show, so a clean bone scan would be an encouraging indication of local disease. Good luck.
Bill Denton RP 2/12/02 Memphis
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