A buildup of worry – on hold

This week I was supposed to be traveling to Richmond to have an advanced MRI of my prostate and then maybe a biopsy the next day depending on what the MRI showed. This has been the plan for a month. A month of research and thinking and planning and worrying. Phone calls with nurses to make appointments and get instructions. Plans concerning taking off work and getting my daughter to all her activities on those days. Thinking about the possibility of bad news. Thinking about the possibility of good news. Then it all gets cancelled at the last moment – because of the complete incompetence of my doctor’s office.

A few months ago I had a physical and the lab work that goes along with it. In this lab work a PSA test was ordered to screen for prostate cancer. I didn’t know my doctor was going to order this test. She never had before. When getting a PSA test you are not supposed to have sex within 48 hours of the test or the score could be inflated. I had not abstained and my score was high. I had been to the urologist in the past due to prostatitis symptoms and was found to have a slightly high PSA score. Back then was given a non PSA test called a PCA3 – which came back normal. I was told then that this was good news and was in the clear. That was many years ago and I hadn’t been back. I thought it was time to revisit this issue and, therefore, made an appointment. The earliest appointment I could get was for three weeks and about ten days before the appointment I got bronchitis. My appointment was two days after I had finished my antibiotics and steroid prescriptions to clear up the bronchitis. Now before I got the PSA test and before I got bronchitis I had been suffering with the prostatitis symptoms again. It’s been an on again off again chronic thing for a while and can make your PSA score high. After taking the meds for my bronchitis I started to notice that my prostatitis symptoms were a lot better – to the point where I almost feel like my old self now a couple months later. So, when I went for my urologist appointment he didn’t want to retake the PSA test. He wanted me to take a new non PSA test called Apifiny – which is supposed to give a score of autoantibodies in your blood that are associated with prostate cancer. This test is new and I was told that my insurance may not cover it and I may have to pay for it myself at a cost of $399. I agreed. The doctor said it would take about a week to get the results and then they made me an appointment for a follow up on their next available date – six weeks away. Of course I fully expected to get a call or get something in the mail in a week giving me the results of this test. A week went by – nothing. Two weeks went by – nothing, so I called them. Oh, the doctor doesn’t give results over the phone. You will have to wait until your appointment. We can put you a cancelation list if you would like. So I got put on the list and I waited some more. In my research of this test I found out that if you score less than a 59 then you have a 90% chance of not having prostate cancer. If you score higher than a 59 you have a 1 in 3 chance of having prostate cancer. I found one review from someone who said he had read deeper into their clinical tests and he said that the chances of not having cancer if you score high were actually somewhere in the 70’s percent. So the test was pretty good at determining if you didn’t have cancer, but not so good at determining if you did. Well I continued to wait and agonize over what my score was until finally they called me and told me I could come in – and I was told that my score was a 78. The doctor told me this put me in the higher risk for prostate cancer and he wanted to send me up to Richmond to take advantage of what was the newest thing in diagnosing prostate cancer – an advanced MRI targeting the prostate. They would be able to determine from this MRI whether I was clear of cancer or whether there was something suspicious that required a biopsy. If I needed a biopsy, they would know exactly where to target based on the MRI. I was weary about getting a biopsy without retaking the PSA test a few times to get a better idea of what it’s score really was, but I thought – well, this MRI could tell me for sure what was going on, so I might as well do it. So I agreed and the ball started rolling. I made appointments to go to Richmond. I got an approval from my insurance company for a biopsy. I was concerned that it didn’t say anything about an MRI, but the approval did mention the center where the MRI’s are done at. I was told by my doctor’s office that they had approved everything and my plan was to make sure in Richmond that everything was ok. While waiting the month for the appointments to get here, I did more research – and started to doubt whether I should have been allowed to take that Apifiny test just days after finishing the meds for bronchitis. The steroid I had been on was on the list of meds you shouldn’t be on when taking the test. Also, the test is measuring autoantibodies in your blood stream that are there based on your immune system and what these antibodies are fighting – and I was taking antibiotic meds and recovering from bronchitis right at that moment! Medical procedures and decisions were being made based on a PSA test that could be inflated due to not abstaining from sex and a non PSA test that could be inflated due to having bronchitis and taking a bunch of meds. Still, having the MRI would be a good thing and would tell me what is going on in there.

Cut to five days before I was to go to Richmond to have this MRI. I get a call from my urologist office to tell me that my insurance isn’t going to pay for the MRI. It seems that when the MRI people filed with the insurance company they were told it wasn’t covered and they called my doctor’s office. The doctor then did a peer to peer discussion with the insurance company to try to get them to cover it – but they wouldn’t change their mind. So basically my doctor’s office messed up when they called in to get the approval and only got an approval for the biopsy. Then instead of giving me the option of paying for the MRI – or better yet, offering to help pay for it since they messed up – they instead cancelled my appointments and told me I needed to schedule to come into the doctor’s office and have the biopsy there. This after being told how great today’s technology is and how much better having this MRI done is over just blindly going in and taking random samples the old way. Also in Richmond, if needed, I was going to be getting the biopsy with sedation and antibiotics and a waiting period after to make sure I can pee and everything was ok. In the doctor’s office I would be in and out – with no sedation and the higher risk of infection after. Not optimal – and maybe not necessary – since we never did any PSA followups and don’t really know for sure what is going on. The blind biopsies have as much as a 6% infection rate bad enough to hospitalize you and they don’t catch cancer when it’s actually there 30% of the time. I don’t want to have it done without a second opinion or maybe going through with the MRI and just paying for it. Well, the doctor’s office put me on hold to schedule the biopsy and while I was waiting I decided I was done with this doctor and hung up. I was tired of the way I had been treated so far. I felt like I was being rushed into things and I was really not happy being strung out for weeks waiting for results. In today’s world we are all used to quick communication and there is no excuse to not providing modern customer service. The doctor’s office is the epitome of not being modern – old wood paneled offices with faded posters on the wall, old patient medical folders instead of computers, no website or email to communicate, rude receptionists and nurses. The only thing I liked was the attitude of the doctor to trying the newest methods – which ironically was counter to everything else he did. I’ve given up, though, and today asked for help from my family doctor as to what to do next. I asked through email from her website and should get an answer tomorrow. I may go back in and retake the PSA, or she may recommend me to a new urologist – and that might lead to a series of tests to see what might be going on. Or it might lead me back to the option of Richmond and this MRI – but hopefully with a more competent doctor…