As for PSA screening, there is this article that is of interest:

http://www.nytimes.com/2010/03/10/opinion/10Ablin.html

So, more evidence that just a moderately high PSA level alone may not be a good reason for a biopsy without other factors!

For the whole story of my adventure in prostate fun, start at the very bottom and read upward.  I wish you the best of health and good luck in your diagnosis and treatment.

In terms of time, I spent the morning of  Christmas Eve getting a prostate massage that was necessary for a PCA3 urine test.  I spent a night and two days in New York City for a power doppler ultrasound.  I spent 5 nights and the better part of 6 days on a trip to Washington D.C. for an MRI and a targeted fusion biopsy at the National Institutes of Health.  Granted, I got to visit with some friends on those trips, so it wasn’t a waste of time outside of the medical procedures.

In terms of cost, my PCA3 test was covered by insurance.  My portion was $9.60.  The visit to the NIH was free and they even paid a good part of my travel related expenses.  The big cost was the $950 for my power doppler ultrasound with Dr. Robert L. Bard in New York City.  I had to pay all of it up front, being told that at least part would be covered by most insurance plans as an out of network expense.  Ultimately, my insurance plan (Anthem Blue Cross) did consider the full amount as a covered expense.  Unfortunately, we have a high deductible plan and since it was the beginning of the year, I was not directly reimbursed by insurance for any of the amount.  On the plus side, it will count toward my deductible and out-of-pocket maximum limits for later in the year and will also be paid in pre-tax dollars once we are repaid from our HSA.

In terms of effort and risk, only the trip to the NIH was a big hassle.  I wish it could have been done in just a few nights, rather than 5.  Being sedated is always a risk, as are the risks of an invasive procedure like a biopsy and even just a hospital stay in general.

The trade off for the time, cost and hassle?  I now have peace of mind in that it is quite unlikely I have an undiagnosed prostate cancer.  I had hoped to avoid a biopsy, but ultimately my relatively high PSA and a couple areas identified as “very low risk” on my 3T MRI led me to decide that I should go ahead with the biopsy I had hoped to avoid.  At least the biopsy was targeted, presumably reducing the chances of a false negative.

So, was it worth it?  Would I do it all again?  Knowing what I do now, I probably would not have done the power doppler ultrasound.  At the very least, I would have tried to find a different physician to do it; preferably one who had published, peer-reviewed results, wasn’t so “commercial” in terms of hawking books and supplements and one who clearly agreed to provide a full copy of all images to me for future reference.   The PCA3 test is non-invasive and relatively low cost and effort.  The fusion MRI and biopsy was a bit of a hassle, but offset by zero cost and a nice weekend in Washington D.C.  If I have indications of risk in the future, I would strongly consider these two diagnostics again, depending on what other options are available at the time.

Obviously, my situation is unique.  Everyone else has different circumstances and different preferences on treatment.  In that I’m not a doctor and have no medical training, my opinions are not valid for anyone else.  What I do know is that everyone should question their doctor if they think they aren’t getting enough information to make an informed choice, especially if that decision involves cancer or another serious condition.  The internet is a powerful tool for research and if you find your physician was too busy to answer your questions or perhaps even underinformed about options, you should definitely seek out another physician or specialist for a second or third opinion.

If you find yourself in a similar situation as mine, I wish you the best of luck in your research, diagnosis and treatment.  Peace, and good health!

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If you happen to be interested in sponsoring my blog in exchange for a banner advertisement, please send an email to webmaster “at” prostatebiopsyblog “dot” com .  I’d love to recoup the costs for that ultrasound and donate some more money to related charities, like the PCF.   Prostatebiopsyblog.com now gets reasonable google search placement on relevant terms.

You’ll find them on a search, too.  There are books that tout special diets.  There are websites that claim their secret bio cleansing method will help.  Of course, there are herbal cures and patented mystery pills that promote prostate health.  I’m sure someone has treated prostate issues with magnets, acupuncture, chiro and almost any other therapy you can name.  For patients without prostate cancer proven by a biopsy, these remedies will work like a charm, of course, and they will proclaim they have been cured.  That’s because most of these men had only fear, not prostate cancer.  Prostate cancer usually grows very slowly and is not often very aggressive, so the purveyors of snake oil don’t take a lot of risk hawking their products without any scientific study measuring their outcomes.  Of course, those who ignore the signs and avoid proven diagnostics and treatment will only have themselves to blame if they wait too long and have their options limited as a result.

Patents, testimonials and obscure foreign studies are one thing.  Having statistically significant findings published in a peer reviewed journal are another.  That patent may prevent someone else from selling the same thing, but it doesn’t mean your product works.  That obscure study was not only flawed, it was probably financed by the those who made the product.  Do you really want to risk your life, based on the testamonial of someone who wrote something on the internet?

That’s not to say there is nothing you can do.  There have been studies showing certain dietary supplements may help.  Selenium, Vitamin E and Saw Palmetto are among them, and even have a following among some urologists.  The studies don’t seem conclusive, though, and one recent study even concluded that Selenium and Vitamin E probably had little benefit if any.  Soy, lycopene, zinc and various anti-oxidants are also offered as preventatives or cures for prostate issues, much as they are for other cancers and diseases.

One other hopeful remedy has appeared in the last year or two.  Finasteride (Propecia, Proscar).  There was a conflicting study a while back, but the most recent study dispelled some concerns.  Now, it appears some major organizations will be making guidelines that suggest certain men consider taking the drug to prevent prostate cancer.  This is the same drug that has been used for some time to treat symptoms of BPH.  As a bonus, it can help offset male pattern baldness!  It turns out not to be a coincidence.  The same substance that is involved with male pattern baldness, DHT, may also be responsible for changes in the prostate as men get older.  I’ll definitely be asking about it at my next appointment.  Two birds with one stone is always appealing.

I’m not saying that alternative treatments are useless.  Power of mind and the placebo effect can work wonders for treatments that have no proven clinical value.  Of course, the trick is avoiding treatments that have side effects, even if they don’t actually treat prostate issues.  One insidious side effect is from supplements that artificially mask your PSA level, making it impossible to track changes critical to early treatment.  Hopefully, you’re only out money if  an alternative treatment doesn’t work.  Better than snake oil, a healthy lifestyle is a good preventative for almost everything.  Eating a variety of fruits and vegetables is a good idea anyway, and may help prevent various types of cancer and other ailments.  I need to work on that, too.

This isn’t to say open RP is the best treatment for everyone.  There’s a robotic procedure (RRP or DaVinci) that is gaining popularity.  It’s too new for long term results, but it looks to be similar to that of the open procedure if you can find a very experienced surgeon.  Again, from my research, the choice of an experienced surgeon appears to be at least as important as the choice of which surgery to have.  A surgeon that has done hundreds, if not thousands, of the same procedure is ideal.  Even better is one who has published results or at least one who will share detailed  statistics on their results with you.  Another thing to ask is for referrals to patients who have had a “trifecta”.  That’s the term for a long term cure of prostate cancer with no long term urinary or sexual issues (be careful on how a surgeon defines incontinence and impotence).  If you’d ask for referrals on home contractors, you should absolutely do the same for someone about to cut you open!

Radical prostatectomy, open or robotic, is a major surgery.  They don’t just remove the prostate.  In the process, they have to cut and remove part of the urethra and the neck of the bladder, along with the internal sphincter that helps control urination.  If the cancer is not widespread, many surgeons are able to spare the nerves associated with sexual function, but there can still be trauma.  You’re almost guaranteed a hospital stay of a couple days or more, a catheter for maybe a week or so and some degree of incontinence and impotence for at least some time (perhaps months, a year or forever).

There are also radiation, hormone and other treatments like high intensity focused ultrasound (HIFU) and cryoablation.  Being younger and more likely to tolerate surgery with good results, I didn’t really consider these more than learning about them.  Some of these are recommended in specific situations, while others have much lower proven cure rates.  Being 40,I did look into radiation treatments, but almost none seemed to have the proven track record as open RP surgery.  I did find one exception, dubbed “ProstRcision” by the center in Atlanta that does this combination of radiation seed therapy and external beam therapy.  They not only have a long term track record, but they claim their results are on par with the best surgeons, probably better in terms of incontinence and impotence.  It’s definitely worth a look if you can spend 6 weeks in the area for treatments.

I really don’t want to promote or attack any particular form of therapy.  In fact, some very interesting new techniques are on the way, such as “cyberknife” or improved mapping that will allow a less invasive “male lumpectomy”, rather than complete prostate removal.   This would be like having a breast lumpectomy for a localized, less aggressive tumor, rather than a total mastectomy.  These newer procedures may also offer reduced incidence or severity of side effects, but their long term cancer cure rates are unknown.  For the patient, the problem is that most urologists only specialize in one form of treatment, so they will each have a bias.  Certainly, all these therapies are valid and some situations may make one a much better choice than the others.  My main point is that regardless of what treatment you choose, the surgeon or oncologist is probably the most important aspect.  Find one you trust, who is experienced, has proven long term results and is willing to put you in touch with other patients.

From the New York Times-

The PSA blood test, used to screen for prostate cancer, saves few lives and leads to risky and unnecessary treatments for large numbers of men, two large studies have found.  

The findings, the first based on rigorous, randomized studies, confirm some longstanding concerns about the wisdom of widespread prostate cancer screening. Although the studies are continuing, results so far are considered significant and the most definitive to date.

Dr. Peter B. Bach, a physician and epidemiologist at Memorial Sloan-Kettering Cancer Center, says one way to think of the data is to suppose he has a PSA test today. It leads to a biopsy that reveals he has prostate cancer, and he is treated for it. There is a one in 50 chance that, in 2019 or later, he will be spared death from a cancer that would otherwise have killed him. And there is a 49 in 50 chance that he will have been treated unnecessarily for a cancer that was never a threat to his life.

Prostate cancer treatment can result in impotence and incontinence when surgery is used to destroy the prostate, and, at times, painful defecation or chronic diarrhea when the treatment is radiation.

I think it’s clear we need more accurate diagnostics, especially ones that are less invasive than a biopsy.  There is an obvious need to know how large and aggressive a cancer is before deciding if radical treatment is necessary.

Update: The New York Times added this article today

Fortunately, there are newer techniques for prostate biopsies other than the random 6 or 12 sample method done in in a typical urologist’s office.  Like the targeted MRI/TRUS fusion biopsy I had, there are also saturation and ”mapping” biopsies that use more samples or some type of specialized imaging to improve the coverage and reduce the chance of a false negative.  Some of these are transperineal, meaning they are done through the skin, rather than through the rectum.  A biopsy like these might be considered by higher risk patients who have had a negative biopsy in the past. 

Because I had two other negative tests, I hope that I am in a lower risk situation than most men with a negative biopsy and relatively high PSA level.  My PCA3 test score was negative and also quite low overall.  I had an advanced “3 Tesla” MRI with 4 different types of scans and that showed nothing of significant clinical interest, either.  All together, it’s unlikely that I have an undetected cancer.  On the other hand, something is clearly abnormal, because my PSA is high for my age.  Most men in their early 40s have a PSA below 1.0, whereas mine has been between 2.4 and 2.7 for at least a year and a half, over 4 different PSA tests.  Also, my prostate is slightly enlarged, about 30cc.  Finally, my MRI indicated a pattern consistent with prostatitis and my biopsy did show a couple areas of atypia; both of these might be a precursor to cancer.

So, I do intend to keep a pretty close check on it.  I’ll probably have my PSA checked every 6 months with or so along with a DRE and perhaps get a PCA3 test each year.  I also plan to keep my appointment with Dr. Catalona.  I had scheduled this a while back, just in case my biopsy pathology showed cancer.  He’s pretty much THE expert on prostate issues in the Chicago area.  I want to get his input on what I should do in terms of checkups, health, diet and possibly even future studies that might be relevant to me.  My appointment isn’t for a couple weeks, but I’ll report on it at the end of this month.

I temper my relief a little bit, because I know that there are a lot of false negatives with prostate biopsies.  This was one of my main concerns about having a biopsy in the first place.  While a biopsy can confirm the presence of cancer, it cannot rule it out completely.  In fact, a single, standard biopsy may not be all that much better than a PCA3 test or a 3T MRI for ruling out small, less aggressive tumors of the prostate.  Also tempering my great relief was a finding of an “atypical gland” in 2 of the 16 core samples.  This is basically a warning to keep close check on my PSA and have a regular DRE.  I’ve had a handful of suspicious moles removed in the past.  While none have turned out to be cancer, a couple did come back as “atypical”.  So, I also have a dermatologist check my skin at least once a year, too.

I am still very relieved.  Combined with my PCA 3 test and my 3T MRI results, the negative biopsy hopefully means I do not have prostate cancer at all and almost certainly means I don’t have any large or aggressive tumors.  Amen.

The best part?  A custom labeled DVD with almost 1400 images from my MRI exam, complete with an included viewer.  This is what I expected from my $950 ultrasound, but ended up with 5 still photos that almost completely failed to document the “3D/4D” ultrasound I was supposedly given.

I can’t interpret the MRI images any more than I could interpret the ultrasound images, but at least I have them for reference if I ever need them.  As I expected, the limited ultrasound images were not very helpful to the urologist or radiologist at the NIH.  So, for anyone considering any type of prostate ultrasound (colorflow, color doppler, power doppler, 3D, 4D etc) or  MRI (MRSI, MRIS, spectroscopy, diffusion weighted, contrast enhanced, T2-weighted, 3T, etc), be absolutely sure to ask what types of images you will receive.  If you aren’t happy with the response, you should probably look for another physician, especially if you are paying for the service up front.

Anyay, for as much flak most government agencies get in regards to efficiency and customer service, I am pretty impressed with the NIH.