Despite nearly being stuck at O’Hare airport in Chicago due to thunderstorms, my flight managed to depart for Reagan Washington National. For anyone looking for a hotel near the NIH, I’m staying at the Hyatt Regency Bethesda until I’m admitted on Sunday. The Hyatt is very conveniently located right atop a metro station. One transfer between the airport and hotel, very handy.
My next day started at 8AM. The NIH was one stop away on the metro. After checking in through security, I walked to the main building, #10. Registration was relatively quick, with fewer forms than a typical office visit. The nurse who had been corresponding with me via email (Celene) then met me to show me where I’d be going throughout the day. My next stop was at the lab for blood and urine samples. Then to radiology for a chest X-ray. Then to have an EKG. Everything was very efficient, so much so that I finished over an hour earlier than scheduled and had time to take in a light breakfast. The staff has also been very professional all around.
My 3T MRI with spectroscopy was delayed a little, but went without a hitch. It was quite an extensive scan, taking about 1 hour and 10 minutes in the tube. Even with earplugs and headphones, it was fairly noisy. I also had the displeasure to experience the “Endorectal Coil” used to enhance the images. Getting it into place wasn’t very pleasant, but it was tolerable for the rest of the exam. Another set of enhancement coils was set on top of me. Near the end of the scan, they injected me with gadolinium to enhance the last set of images. They also took additional images at without the coils before I was finished. Continue reading First Day at the NIH
I don’t plan to be racing anytime soon in order to raise funds for worthy charities related to supporting prostate cancer research. Instead, I’d like to give credit to another Darren who is my age and is now racing for a cure:
If you are considering a charitible contribution for medical research, please take a look. Prostate Cancer is among the most common and most deadly of all cancers. Also, if you have the time, take a look at Darren’s blog. It’s a compelling journal of his experiences.
I’m off for my trip to the National Institutes of Health this week for my 3T MRI, possibly followed by a biopsy. I’ll have more to write this weekend and next week.
$950 later, I finally got a whopping five ultrasound images. This was from my prostate ultrasound test in New York City last month by Dr. Robert Bard. The lure of the “3-D/4-D” power doppler sonogram was the promise of hundreds or thousands of color enhanced images that could be turned into a three dimensional view that would also show motion in real time. What I actually received after my appointment was a single, 1990s fetal-ultrasound-quality, black and white polaroid-sized image.
Prior to the appointment, I specifically asked if the images would be available to me in some format for a second opinion, if necessary. In reviewing the cryptic response from the Dr. Bard, it seems it might have even been intentionally vague or even dodged the question altogether. I guess that should have been a red flag. Nonetheless, after the ultrasound, he said a partial set of images would be available and referred me to his staff. I was sent a single black and white digital image, though it was at least more detailed than the polaroid. I repeated my request and got no reply. After a couple weeks, with my next consultation looming for the MRI, I sent another request. A few more exchanges resulted in five images being sent to me, as the previous email with the first image must have been corrupted. Apparently, five images were all they kept! For all the promise of this technology, they claim to have kept only five 2-dimensional images out of thousands, with zero benefit of 3D or 4D available to me for future reference or a second opinion! Continue reading Ultrasound Images At Last
It’s OK to be fearful of an invasive procedure. A little fear can lead to a second opinion, maybe a better one. On the other hand, a little fear shouldn’t keep you from getting checked at all. Since I have no medical training, I can’t give specific advice on what someone else should do, once they find out there is a medical concern. I can give advice on what you should do if you don’t think you have a problem, though.
If you’re 40 or older, have your physician add PSA level to your blood test at your routine checkup. Have him do a DRE. These simple things could catch a disease before it becomes life threatening.
If you’re in a high risk group, have this done before you’re 40. If you haven’t had a routine physical in a while, schedule one today!
Prostate Cancer isn’t some rare disease that happens to that other guy. It’s the second most common cancer in men and also the second leading cause of cancer death for men. In fact, one man in six will be diagnosed with prostate cancer in their lifetime. I had no idea I had an enlarged prostate or high PSA level. I still have no physical symptoms whatsoever. Prostate cancer may not cause any symptoms, until it’s too late. Don’t leave it to chance.
That’s pretty much all I have for now. I’ve caught up on most everything I’ve learned in the last few months. I won’t know much more about my situation until early March. I will blog here and there as I find interesting websites or research, but probably not on a daily basis. For now, I have not been diagnosed with cancer and I hope I can report the same in future blogs. Thank you for reading and for your support!
The time and expense involved in having all these tests may seem like a lot of effort in order to avoid a biopsy. Based on what I’ve learned so far, an invasive “random” biopsy (with its associated risks) still doesn’t seem like the best course of action for me, given my results so far. Alone, PSA levels, DRE, a PCA3 test, a power doppler ultrasound or a 3T MRI scan may not be any better than a biopsy as a method to rule out cancer. Combined, I suspect they could indeed be enough to detect cancer with a reasonable degree of sensitivity. Plus, in the case of the ultrasound and MRI, they may also even be able to help guide a biopsy to a suspicious location.
There’s another reason all these tests may come in handy. Even if I don’t have cancer, I know something is up with my prostate. It might be prostatitis, it might be BPH, it might just be the way I was born. Years from now, I may start to have another prostate issue. In fact, a large number of men do get prostate cancer at some point in their lifetime. What I will have now is a baseline for PSA, PCA3 and MRI results to compare to any lab results in the future. I had hoped to have the same for ultrasound results, but that has been a disappointment so far, but I’m not sure if that is related to the physician, the ultrasound technology itself or both. Anyway, these results can also help detect changes that might be important and rule out anything that may not be of concern because it hasn’t changed much over time.
At the very least, I’ll probably have my PSA level checked every 6 months to a year. If PCA3 testing becomes more widely accepted, perhaps I will do that annually, also. If one or both of them go up significantly, then it might be time for some other action. Of course, this all depends on the results of my MRI/biopsy next month.
I was a bit discouraged about the cost of having a new, high resolution prostate MRI. $5000 is a lot of money, especially in the current economy where it could pay bills for a couple months, as layoffs are looming everywhere. There had to be something similar and less expensive in the Chicago area. With major universities like the University of Chicago, Northwestern, Loyola and the University of Illinois at Chicago, someone had to be doing it. That’s not even including the dozens of private hospitals and clinics in the area and other nearby universities like Iowa, Purdue, Wisconsin and Illinois. Still, I could find nothing on almost every kind of search I tried.
What I did find was research. Names and email addresses of urologists, radiologists and others who were doing work in prostate imaging. One of them might know someone else doing this kind of diagnostic for patients, maybe even in the Chicago area. I also contacted some local people who came up on a search of seminars in the local area, some through a great organization called UsToo. Still, nothing I could find anywhere in the midwest. The major institutions doing this type of research seem to be in Boston, New York City, San Fransisco, Houston and Maryland. Continue reading Another Bit of Good Fortune: The Frugal MRI
My philosophy is that you should always seek a second opinion if it involves major surgery, maybe a third one if the first two opinions disagree or if it’s something life threatening, like cancer. I did this for a reconstructive knee surgery back in 1994. I ended up seeing one of the premier orthopedic surgeons in the country. In retrospect, it may or may not have been worth it. My knee is fine and my recovery was quicker than the other patients doing physical therapy for the same surgery, at the same time. On the other hand, the trips to and from the University of Chicago hospital were a bit of a hassle for me and my family. Plus, it was an arthroscopic surgery that was pretty standard. I may well have gotten the same result with a local surgeon at a nearby hospital. We have done the same for my wife for a surgery on a pituitary tumor and a on herniated disc, mostly because we were not reassured at all by the first opinion. In the case of the tumor (which was benign), our trip to Northwestern University’s hospital was one of the best decisions we ever made. Going to all this work to find out if a biopsy is necessary is probably a bit extreme, but I also have in mind what the next step might be.
You can’t really get a second opinion on the internet. I suspect the legal ramifications are too great for physicians to give specific advice without a personal consultation. You can, however, get more general advice and possibly learn whether or not another professional opinion is needed. I did just this. One such resource is AllExperts.com. You can ask questions anonymously and then determine if you need to see a specialist or get another opinion. Dr. Leslie gave me some very sound advice that was very helpful to me. Medhelp is another similar resource. I’m sure there are a number of other “Ask a Urologist” or “Ask an Oncologist” type of websites on the internet that may be also helpful to men with prostate issues. You can also search for studies, research and articles by physicians. If you find an expert who has knowledge specific to your situation, you can always call their office or email them (or their assistant) to see if you can schedule a consultation or get additional information.
There’s also the old fashioned method. Continue reading Second Opinions: Trusting Your Prostate to One Physician
Last night, I had a telephone consultation with a physician I mentioned previously. He was very skeptical of my ultrasound results, having concerns with both the physician and the claimed sensitivity of the test. He believes that based on a current consensus of experts, this ultrasound technology alone is only around 20% likely to detect prostate cancer, rather than the >90% claimed by the radiologist that did the ultrasound. From what I understand, his preferred method of detecting prostate cancer is a “3 Tesla” high resolution MRI, followed (if necessary) by a biopsy guided by the MRI and ultrasound results.
He also suggests that in patients who do not exhibit cancer, he is able to diagnose prostatitis with his procedure. He has a diet and dietary supplements that can help treat prostatitis and possibly lower PSA levels if they are the result of prostatitis.
I don’t have the expertise to determine who is right or who is wrong. In all liklihood, both philosophies may have merit to some degree. It may not be unlike how there are a number of different treatments for prostate cancer, and various well-regarded urologists, oncologists and surgeons will have their own preference as to which of them is the best option. All of them have pros and cons which should be considered by the patient as carefully as possible. Ultimately, it may even come down to which opinion you trust and respect the most.
As for now, I still have some options to consider. I’m still awaiting the “partial set” of ultrasound images. I received one small, greyscale 2D image via email this morning. For $950, I sure hope there are more showing the areas of interest for future use. Any benefit of having “3D”, “4D” or “Doppler” enhancement with color are completely lost with the images I received so far.
I had my ultrasound yesterday. I flew to New York City to get it. The only physican that I could find who was closer and used similar technology for my situation was near Detroit, but they wanted to do a biopsy at the same time. There are a number of other places doing these sonograms across the country. New York had the advantage that I would get to visit a few good friends on my overnight visit.
I didn’t know much about the physician, Dr. Robert L. Bard, beyond a few brief email exchanges, some Google searches, and a quick check at the New York state health department to make sure he was a currently licensed physician (he was indeed a licensed radiologist with no complaints listed). Probably a little extreme to check this, but if I’m flying out-of-state to see someone for a medical procedure, I want to at least make sure I know they are legitimate and not just a website scam or something! Continue reading My Super(?) Ultrasound
Tests like the PCA3, Power Doppler Ultrasound and 3T MRI are all very promising and based on a lot of research. There are a few other tests I’ve found that might be of interest. I haven’t found much research on them, and they are probably not yet available in the USA outside of trials or studies.
http://www.clarientinc.com/Default.aspx?tabid=403 (post biopsy test)
I’m off to New York City for a power doppler ultrasound. More next week.