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How often are PSA scores 'wrong'

worriedabouthubby
Posts: 37
Joined: Aug 2012

My husband had some bloodwork done to get an insurance policy. His PSA came back as 73.76. He is 57 years old and in bascially good health. He had Rocky Mt. Spotted Feaver about 10 years ago and lost about 70% of his hearing and has trouble maintaining his body temp sometimes (he feels cold alot). He has not been to a doctor in years and has never had this test before. I did get him in to see my doctor, and they have repeated the test. However, it will be a few days before we get the results I suspect. Are PSAs 'wrong' sometimes? What are the odds that this is just some sort of abnormal test result- not a real problem? If it is correct, what are the chances it is due to a non-cancer cause? I'm a bit of an info geek and have done alot of reading the past 24 hours. I am the primary caregiver for my mother-in-law who has had strokes and heart problems and broke her hip last year. I also help my mom who has knee, back and other issues. I want to be prepared to help my husband, but and feeling rather overwhelmed right now. It's th NOT KNOWING that drives me crazy. I can cope with just about anything- I just find out everything I can and plow into taking care of people and being their advocate. But I can't stand not knowing.
Thanks for any help.

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

PSA numbers are misleading, my numbers were 2.25 and I was in stage T2C PC. I had a doctor visit yesterday and had a long conversation about this. The doctor informed that these numbers can be misleading. The real indicator of cancer is the biopsy, also the DRE. This needs to be looked into and followed up on. There are other medical problems that can cause psa numbers to go up. For now I would take it easy, but do not let this go

mrspjd
Posts: 693
Joined: Apr 2010

“The real indicator of cancer is the biopsy and DRE?”

Not the Gleason Score? Or perhaps that's what laser meant by "biopsy."

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Worried,

As laserlight indicated, PSA scores can be both misleading and confusing and your husband is pursuing an appropriate course to have his test redone to ensure that there is not a laboratory or human error in his reading.

Most healthy men have PSA levels below 4 but prostate cancer can be present even with low PSA readings such as the example laserlight gave in his own case. Several things can cause an elevated PSA reading such as sex before the blood test, manipulation of the prostate, BPH, some OTC medications, and some types of exercise like bicycle riding. PSA scores above 10 are highly suspicious indicators of prostate cancer.

The American Cancer Society indicates that PSA scores above 10 have at least a 50% chance of prostate cancer being present. A PSA score in the 70s is very, very high. While there may be other potential causes for such a high reading, prostate cancer is probably the most likely.

When your husband went to your doctor I hope they gave him a digital rectal exam (DRE) after they did the blood draw. In this simple exam, the doctor is feeling for unusual bumps or hardness on the prostate which they can feel through the wall of the rectum. If the DRE is abnormal they will want to do a biopsy. Even if the DRE is normal, such a high PSA reading will certainly be justification for a biopsy. The only sure way to diagnose prostate cancer is with a biopsy.

If the second PSA test comes back anywhere near what the first test showed, your husband needs to see a urologist to undergo the biopsy to determine exactly what is going on.

I hope everything comes out fine for you both. It sounds like you already have your hands full.

Here's an information link you may find useful:

http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-detection

Best

Beau2
Posts: 246
Joined: Sep 2010

Oops

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Beau (Eagle Eye)

My initial post mistakenly wrote DRE BEFORE the blood draw, which of course is wrong as the DRE massages the prostate and can elevate the PSA score. I corrected it to read AFTER the blood draw and I think our posts hit almost simultaneously. Sharp eye.

Beau2
Posts: 246
Joined: Sep 2010

After I posted I reread your post and it said "after" and not "before" ... thought maybe the scotch was a bit strong and I'd miss read, so I "opposed" my reply. Then I saw your reply ... I'm sure this will make little sense to any one reading the thread. Think I'll have another.

hopeful and opt...
Posts: 1363
Joined: Apr 2009

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hopeful and opt...
Posts: 1363
Joined: Apr 2009

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hopeful and opt...
Posts: 1363
Joined: Apr 2009

You are wise to research and seek knowledge.

I hope that your husband will take an active roll as you are.

We are here for you and will help as much as we can.

As usual Kongo gave good advice.

He mentioned, "When your husband went to your doctor I hope they gave him a digital rectal exam (DRE) after they did the blood draw" Basically when the prostate is massaged, the psa rises , so if the digital rectal was first this will account for the very high psa number.

If your husband did get a digital rectal examine (which means that the doctor uses a finger to feel the prostate for abnormalities) what were the results?

There is a new test called a PCA3 which is a urine assay test, and is an indicator of prostate cancer. When you see a urologist you might want to discuss this test with him before getting a biopsy. Basically, it is an indicator of prostate cancer, and a useful test in deciding or not deciding to have a biopsy. Please click my name for details of this test.

Keep on posting here, research; read books, internet, find out about prostate cancer support groups in your area, which are great for contacts and information.

worriedabouthubby
Posts: 37
Joined: Aug 2012

Yes- he did have a DRE and then a blood draw (2 vials). the doctor said that his prostrate did not seem significantly enlarged and that it was 'firm but not rigid'. It's the waiting for the second results that is driving me crazy. I want to go ahead and get to 'part 2'- and have him be seen by a urologist. We both feel in our gut that it is probably cancer. We are unaware of any family history of this problem. I will ask for the PCA3 test- thanks for that heads up. Hubby has been doing some internet research, but he has lots to do at work (he mamages the family business, along with my brother-in-law for my mom). I retired about 5 years ago, after 30 years as a teacher and assistant principal in middle schools, to help my mom care for my dad and to care for my mother-in-law. Seems like that is what I do best- take care of others. Thanks for the encouragement. We are optomistic that even if it is cancer, things will be well and very well. He has no symptoms, and I'm going to think of that as a good sign. One thing that may have contributed to the high score that I forgot to mention- he passed a kidney stone in June. Doctor did say that could have elevated the PSA score- but it probably not to 74.

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

If the doctor is going to do a psa test, ask them to Have a FREE or TOTAL psa test ran, my doctor runs this on me all of the time. This test tends to be a more accurate indicator of Prostate cancer from the way I understand. You can do research on this test and it will explain the test and results. Hope this helps. By the way my Wife is a retired teacher, glad you are on this site

hopeful and opt...
Posts: 1363
Joined: Apr 2009

No matter what the results of the next psa, I think that it is a good idea for you to find and see an experienced urologist, hopefully with prostate cancer.

My opinion is that urologist will be more experienced on doing a dre , is a specialist and will be ore informed about this than a GP.

There are different degrees of prostate cancer depending on the gleason score.....many cases can be indolent, meaning not likely to spread.......it is good that you are proactive.

Caregiving is hard, you are under a lot of pressure, so try to relax a little...hopefully others can help you with this....

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Worried,

We all have gifts. Yours seems to be the gift of service and that's a very good thing although I can only imagine the stress it must put on you personally. You've been given some good advice and I hope the numbers come out good for you. In any case it would be smart for your husband to see a urologist I get the impression that is is not a frequent visitor to the doctor and he's at the age where he needs to be tuned in to what is going on inside.

No symptoms is a good sign but frankly, most men with prostate cancer don't have symptoms. The kidney stone certainly could have increased the PSA but as your doctor suggested, it would be unusual for it to spike up to 74 although in your situation I do hope that is the case.

Please keep us informed of what you find out and I would encourage your husband to join the forum so he has the opportunity to interact with other men who have gone through similar situations.

K

worriedabouthubby
Posts: 37
Joined: Aug 2012

Thank you all for the quick, positive responses. We are still waiting for the second PSA results. I am hopeful that they will include the free/attached ratio results also. As soon as we have those results, the GP will be doing a referral to a urologist. Unless, of course, we are very lucky and this was just some sort of fluke reading. But somehow, I doubt that. I will ask the urologist about the PCA3 urine test. Hubby has a good attitude right now. I hope he can hold on to it. I don't think he'll consider joining this board. He is very private and probably wouldn't even understand about me sharing here. but I need a place like this. I can't talk with my mom, or his or our kids until we know more. And besides, I'm the one that everyone always looks to to be calm, strong, knowledgable, etc. He jsut booked another (overnight) trip for us. Since we had to stop our twice yearly international travel when his mom had her stroke 5 years ago, we've been trying to recapture his youth by going to classic rock concerts around the country 8-10 times a year. We have trip in Sept. to San Diego to see Olvia Newton John, one in Oct. to see Madonna, one in Nov. to see Styx, and he just booked one for Dec to see Moody Blues. And he got special seats and passes- we will get to go backstage and meet them! Maybe these will give him some continutity and comfort to hold onto during this time. He LOVES his music. If he has to have some 'difficult' treatments, I know the concerts would help him 'bear up'- if he can travel. Fingers Crossed!!!!!

EDIT-
Posted this about 20 min. too soon. Hubby just called. 2nd test is back. PSA is now 81. I did the math and that is more than a 10% increase in about 2 weeks. That means it would double in just over a month I think. Hubby didn't know to ask about the free vs. attached ratio. He has an appointment with a Dr. Watson, urologist on Tuesday. Hope my heart holds out to then.
Thanks again for all the support.

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

When you visit the urologist, make sure that they run the Free or Total psa test. I would think they would do that anyway. Hang in there. When you visit the urologist start asking questions, have them explain everything. The urologist will most likely perform the DRE. The next step will be another psa test and the DRE. That is the way the doctor did mine. Take it easy, I know waiting is hard. Try and keep a clear head on this. If you donot understand something talk to the doctor donot let them off the hook. Again sorry to hear about this. I forgot another item start requesting a copy of all medical records and lab tests. This will aid you and help to keep all of the information correct, the doctors have to supply it to you, all that has to be done is sign a release with the doctor office

hopeful and opt...
Posts: 1363
Joined: Apr 2009

This news is problematic, and is a challenge.

Research that you can do now is find out what a Gleason score is, and the meaning of different
scores that range from 2 to 5. I think that you husband will have to have a biopsy of the prostate. You might mention the PCA3, which is an indicator, which would be appropriate if your husbands other medical conditions affected the PSA, however I as a layman think that that is unlikely. The PCA3 will still be a good piece of information to define your husbands case, but my opinion is that he will still need to have a biopsy to find out what is happening.

As has been mentioned to you the definitive test is the biopsy which will show the Gleason Score, and the amount of involvement in each core. Make sure that the urologist does at least 12 cores in the biopsy.

I strongly recommend that you and your husband seek out local support groups, this is one way of finding experts in the field that do different treatments. Start looking for a medical oncologist, surgeon and radiation oncologist that you can interview. You want an expert. A good idea is to connect with a major medical center of excellence where there is generally better technology and better doctors

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Worried,

I'm sorry that your husband's PSA remains high but that really isn't too surprising given the overall situation you described. You also write earlier that they did the DRE before drawing blood. That is not the procedure your doctor should have followed since massaging the prostate during the DRE will cause the PSA to go up temporarily. That may be what has caused the 10% rise over the last reading.

The absolute number of the PSA level is less important at this point. It is way too high for most common explanations for an elevated PSA.

I am sure the urologist will want to do a biopsy so you're waiting is not over yet. He will first schedule a biopsy in the near future and your husband will need to follow the directions about taking antibiotics before and after the biopsy. The doctor will also have him take a Fleet enema to clear his bowel system prior to doing the biopsy.

After the biopsy the samples will be sent off to be read by a pathologist who will determine if prostate cancer is present and if it is he will assign a Gleason score. I suggest you do some research on the Gleason grading system before the biopsy so that you can understand what the doctor is telling you when the results come back.

It is a good idea to accompany your husband during the first visit after the biopsy comes back because if it is cancer, many men blank our after the C word and don't remember what else the doctor says. I know that happened with me. Having two sets of ears is smart.

If there is cancer present they will also want to schedule your husband for some imaging and bone scans to see if they can detect whether or not the cancer has spread to other parts of his body.

I hope everything turns out well for you both.

K

worriedabouthubby
Posts: 37
Joined: Aug 2012

Sorry if I implied or said they did the DRE prior to the blood draw- they did things in the right order. I am hopeful that the biopsy will be scheduled quickly. Maybe within a day or two of the first urologist appointment (next Tuesday). I had already been reading about Gleason scores. And possible treatments, side effects. etc. Thanks again!

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Follow the input, the biopsy is very important. Kongo is right. I had mine done on a tuesday and had results on friday, doctor visit on the following wednesday. You really need to be with your husband. My wife was with me and she was able to keep things straight. I went thru the blank out phase. I am glad that she was there. At this point in time try and keep a focused outlook. Please follow all of the instructions provided by the doctor. This needs to be done correctly. There are going to be after effects from the biopsy the doctor will explain these. Hang in there.

worriedabouthubby
Posts: 37
Joined: Aug 2012

Oh- I most definitely plan on being with him for every appointment from this point on. I'm going with him Tuesday. When I told him that he said "Why? I can go by myself." I said "But I have questions- and I want to hear exactly what the doctor says". He has always relied on me to be the one with the answers, so I don't think he will object at all. The main problem will be dealing with his fear of needles. A doctor broke one off in his arm as a child. Just thinking about getting blood drawn shoots his blood pressure up WAY HIGH! Like 180 / 90 range. scares the doctors!!! I really hate the wait. I wish we could go tomorrow.

He told his brother and my borhter-in-law today. We figure his brother might want to get tested soon- I don't think he's ever had the test before either and he is 55. He told my brother-in-law because they are running our family business and I felt that he deserved to know why hubby was having to leave work so often and so he could help him make plans about his 'duties' in the near future. Hubby is CFO- lots of banking, check writing, meetings, etc. Brother-in-law is COO. I may have to step in and help there too. We are going to hold of on telling our 2 kids (ages 25 and 33) and our moms until we know a bit more. Probably after the appointment Tuesday.

Thanks for listening and letting me ramble on. No one else to talk to. Thanks for the suggesstion about the support groups- but hubby will nix that- he is SOOOOO private.

Now- a question. If we see the doctor on Tuesday, is it possible to have the biopsy done before the end of the week? Is that done in a doctor's office or outpatient at a hospital? I know it done through the rectum so I see the need for the antibiotics and a fleet enema someone mentioned- I assume that means at least 1-2 days "prep" time? If I could, I'd have him start that stuff NOW!! Just so I wouldn't have to wait so long.

hopeful and opt...
Posts: 1363
Joined: Apr 2009

It all depends on what medications are being taken..some of them need to be stopped in advance. The doctor will discuss this with you. The urologist needs to first examine your husband, and then make a decision to do one...it will be based on the urologist schedule. Prostate cancer is very slow growing so it is not urgent.

The biopsy is generally done in the urologist office. However, if your husband has other major medical issues a hospital can be considered

If, and I say if he is diagnosed, you need to contact blood relatives since they are also more likely to be diagnosed...this will hold true for breast cancer as well since I believe that there is a correlation.

support group: my opinion, not going, less knowledge and worse outcome, or going, better outcome....your decision.

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

my biopsy was done out paitent in the doctors office, I was fully awake, now I had 19 needles and this will be a bit on the side of pain. I can see that you need information and this helps. The biopsy is done using ultrasound, the doctor will enter thru the rectrum wall and locate the prostate with ultra sound and then will insert the needles into the prostate and extract the samples. This process is for the most part very uncomfortable. The first needle sample is a pain killer. Keep in mind that the more sample taken will help in determing the type of cancer and the stage. The main focus here is to get a very good accurate sample. Now the next step in the process will be the Gleason score and the amount of cancer cells present in each sample. This is very important information, as this will for the most part set the stage for treatment options. My advice is to go with it and just work thur it. I did not like it, but it was needed, so enough said. Right now you are in the drivers seat on this, input, put your self back in a classroom of 20 third graders and I tihnk that you will understand. Stay with you husband and follow thru, good luck

Kurt

worriedabouthubby
Posts: 37
Joined: Aug 2012

He told his brother today so he can go ahead and get a PSA. We will tell our kids next week after seeing the urologist. Son is 25 daughter is 34. He mother had a mastectomy in 1995. My sister had double mastecomy (her choice for the double) about 4 years ago (she died from an accident 2 years ago)- so they get it from both sides- God help and bless them. We even had a breast cancer scare with my mom this past spring- but it turned out ok.

As to hubby's biopsy- he isn't on any prescription meds. He stopped the zinc,DHEA and L-arginine immediately and only takes omeprazole and a multi-vitamin each night. He usually has one drink each night. Easy to stop that if needed. How long will he most likely be taking the antibiotics before the biopsy (and how long after)? He is allergic to penicillin and can't tolerate mycins and cyclens for too long or he gets mouth and throat ulcers. Is the enema like the stuff you drink before a colonoscopy? Or more like a "regular" enema?

Oh- and I didn't work with elementary (except for 2 years teaching 4,5,6th grade behaviorally disturbed)- I worked with middle schoolers. I was a mmiddle school (7,8,9)Learning Disabled teacher for about 17 years and a middle school (6,7,8)assistant principal (vice principal) for almost 15. I don't twitch too often anymore (LOL). I've been retired for almost 5 years. Seems my full time job now is taking care of others who had/have major medical problems. I've actually goteen pretty good at it. I am even in the process of writing a book to help cargivers! Maybe this experience will help me in that. Always have been a 'life-long learner'.

Hubby doesn't handle pain too well. I will have to encourage the doc to give him something that will help with that during the biopsy. He broke his ankle about 12 years ago and was begging me to take out the staples a few hours after the surgery! I've tried to teach him some deep relaxation techniques (I use those and self-hypnosis for my own pain) but he just can't seem to do it. He is also allergic to codine! So that limits things somewhat, too.
Oh well, I'm rambling..... time to stop for now.......

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

The doctor needs to know about drug reactions, this is important. If he has brothers they need to know about this. As far as pain goes it will be there, you have to work thru it. Keep us posted all of the men on this site with PC have went thru the same stuff you are going thru, we know where you are comming from and are here to help. Right now for the most part the doctors are in control and will know what to do, but keep asking questions and donot let them off the hook, PC is slow growing for the most part. But stay on top of this. Your hubby is entering the Phase out stage and it is important to stay one step ahead. Good luck we are all behind you.

hunter49
Posts: 204
Joined: Oct 2011

Sorry to hear about your husbands situation. A few things to know stop any asprin , fish oil now to prevent bleeding. You will probably need to get clearence from health care for the biopsy and that can take a day or two. He will need to start an antibiotic a day before surgery. Most important ask for sedation which thay can do. It will take anywhere from 3 to 5 days to get a result back and be ther with him in the doctors office. He wil need to take it easy a day or twio after the procedure. Good luck and keep the faith.

VascodaGama's picture
VascodaGama
Posts: 1594
Joined: Nov 2010

Worriedabouthubby

Though it is premature to say it but Hubby’s biopsy may be positive for prostate cancer (PCa) because of the high PSA. In any case patient positive for Benign Prostatic Hyperplasia (BPH) can also present high PSAs in the 100th. However, you have mentioned that your husband is symptomless which may rule out such disease. Wikipedia described well about the matter here;
http://en.wikipedia.org/wiki/Benign_prostatic_hyperplasia

I see from your posts that you are already prepared to confront a positive result. Even though, the news will still fell hard on you both. Knowing how to deal with the situation in advance can provide you some relief from this stressful occasion and so I would recommend you to get a book on PCa with complete details on the biopsy/diagnosing procedure and how to treat cancer. A list of questions to the doctors will be helpful when consulting.
Here is a link of some questions you may adapt to your list;
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

A compendium on Prostate cancer and care;
http://www.lef.org/protocols/prtcl-138.shtml

High PSA is indicative of voluminous tumour, if BPH is ruled out. This is not a good diagnosis so that you may add to the list an item regarding the size of the prostate gland. The doctor performing the biopsy can do the measurement and such information will help you in decisions for future prognosis.

I know it dificult to accept but I still think you should go ahead with your plans for the rock concerts. It will be good for both of you.

I wish you the best of lucks.

VGama

mrspjd
Posts: 693
Joined: Apr 2010

WAH,

Welcome here. I noticed you mentioned that your husband was taking DHEA. DHEA and similar type over the counter (OTC) endogenous type hormone “supplements” have many dangers. We know from personal experience: my husband took OTC DHEA supplements for several yrs prior to his T3 PCa dx in 2010. He discontinued DHEA use immediately after dx. We may never know for certain if they contributed to his high risk dx but, as far as we’re concerned, they may have. Doctors we asked, just didn’t know. It is what it is. Like most things, hindsight is often 20/20. Unlike Rx drugs, OTC supplements are not subject to strict FDA review, regulations and approval.

Source: http://www.mayoclinic.com/health/dhea/ns_patient-dhea "DHEA (dehydroepiandrosterone) is an endogenous hormone (made in the human body), and secreted by the adrenal gland. DHEA serves as precursor to male and female sex hormones (androgens [testosterone] and estrogens). No studies on the long-term effects of DHEA [supplements] have been conducted. DHEA can cause higher than normal levels of androgens and estrogens in the body, AND THEORETICALLY MAY INCREASE THE RISK OF PROSTATE, BREAST, OVARIAN, AND OTHER HORMONE-SENSITIVE CANCERS. Therefore, it is not recommended for regular use without supervision by a licensed health professional."

"Dehydroepiandrosterone, or DHEA, is a steroid hormone, a chemical cousin of testosterone and estrogen. It is made from cholesterol by the adrenal glands, which sit atop each kidney." "In men, the increased levels of testosterone seen with daily DHEA pills could stimulate the growth of a tiny prostate tumor that would otherwise have remained dormant. Excess testosterone could also cause the prostate to enlarge, making urination difficult."

IF YOU KNOW ANY MEN, YOUNG OR OLD, TAKING OTC DHEA SUPPLEMENTS, OR IN OTHER FORMS SUCH AS STEROID INJECTIONS, PED's, ETC., PLEASE WARN THEM OF THE RISKS THEY ARE TAKING IN REGARD TO PROSTATE CANCER!

WAH...Worried About Hubby, as a wife, I am too. As a mother of three and a care manager for my 95 yr old mother (who recently was admitted to Hospice care), I also empathize and understand all too well your worry/concern for your children and parents. My husband and I have three grown sons whose risk for PCa is higher than most young men their age due to our combined familial risk factors (my brother has PCa & family history of hormone sensitive cancers). As a teacher, no doubt you are already aware that knowledge is power and can be empowering. This holds true for a PCa education also. You and your husband will be your own best advocates as an informed educated PCa patient and wife team.

Best wishes and good luck on your PCa journey together.

mrs pjd
wife of a PCa survivor, T3 stage

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