Sep 06, 2013 - 7:11 pm
Hello to anyone out there who may be up to tackling this verbose post that has to do with diagnosing prostate cancer.
My husband, almost 58 years old, was diagnosed with BPH in 2004. He was having the usual, bothersome/degrading symptoms associated with an enlarged prostate at the age of 49 . . . too young, in our opinion, for a man to be sentenced to years of the same symptoms progressing to the level of what most men experience at a much older age. Our fears at that time that it could be cancer were dismissed with the explanation that his total PSA was too low for the possibility of cancer (at about 2.0). After first measured, it fluctuated a little but it has only risen year after year to just over 3.5 this past January, then a few weeks later it was 4.0 and then when sampled again this past July, it had gone up to 4.85. In January, the urologist also ran a "free" PSA that came back at only 14.0 and when measured again this past July, it dropped to 11.0. He had a TRUS biopsy about 2 1/2 weeks ago, that (of course) came back negative. He has, unfortunately, a very significant health history that I shall reserve for later discussion. Suffice to say, he was misdiagnosed with a serious kidney disease that actually was due to Hepatitis C that they had missed. He almost lost his life on at least three occasions, one of which was due to a rectus sheath hematoma only one week before our youngest daughter's wedding. He suffered a PE in 2008, and another in 2009, just before the hematoma. Misdiagnoses and underestimations that equate to the doctors playing Russian Roulette with his life.
History seems to be repeating itself in that they expect us to dismiss his symptoms and his blood tests that indicate there may very well be something more serious going on. All we are asking for them to do is to run monthly blood tests to monitor him during the six months they are asking us to sit back and just wait for things to change. We feel our request is not unreasonable, given his history and the way were treated. They're telling us to simply repeat everything in six months and live life as though nothing were hanging over our heads again, which is not only irresponsible but heartless. We've read that the limits of a TRUS biopsy can (in a large number of cases) miss malignancy, especially if it is early. If after six months the blood tests don't show a significant change, we could live with their suggestion to only check them once or twice a year. We're just fearful that if these results aren't monitored more closely so soon after the drop from 14 to 11 in free PSA, they will be dismissing the possibility that he could have something very serious, based on the negative result from the TRUS.
We've read, recently, about a newer more thorough biopsy that uses MRI mapping. Has anyone ever had one of these and what sort of dog and pony show did you have to go through to get it? We live just outside Madison, WI but are under the limits of an HMO.
We wouldn't be as concerned if he weren't experiencing symptoms and if his health hadn't been as compromised in the past. We're only all too familiar with the doctors in this area sticking up for each other and denying even the smallest of things (like the monthly blood draws we're hoping for) to alleviate this watch and do nothing approach that we have first-hand experience with that led to some extremely deadly consequences.
Sorry this post is as long as it is, but I believe in pouring out my heart to anyone/everyone who will listen; since, that was what saved him from the gamble they took the last time, waiting for him to cross whatever threshhold they were waiting for before actually seriously trying to figure out what was wrong.
Can anyone help in trying to get us ANYTHING that would support our concerns in asking for a more thorough biopsy than the TRUS and/or anything that would support our suspicions that a steadily decreasing level of the free PSA can indicate a more aggressive type of cancer?