I've been wanting to vent on my personal story but I didn't want to create yet another topic thread focused on my problems. But then I decided my story may help someone else, so here it goes...
Let me begin by saying I'm in my late 50s and I smoke cigarettes. (I was once a pack a day smoker but for the last 15 years or so I have reduced it to about a half a pack a day.)
I first urinated blood in September of 2015. I knew that that wasn't good. It wasn't just a trace amount, my urine was fire engine red! I called my doctor (general practitioner) immediately and made an appointment. I saw my doctor the next day or so and he sent me to have my urine tested (I suppose to see if there was blood in it, maybe other numbers?)
I never heard back from my doctor about my test results. I started researching my condition and most reputable websites (Mayo Clinic, etc.) all said (paraphrasing) that in most cases blood in urine in not cancer and often times doctors cannot determine the exact cause.
I never heard back from my doctor about my test and so I figured I was okay. I continued to have blood in my urine intermittingly and then it went away.
I saw my doctor again for a regular appointment in February, 2016. I asked him how my test went and he said everything looked okay. I told him what I read on the Internet and said something like, "I guess we just don't know why I had blood in my urine" and he agreed. That was the end of that.
The blood in my urine returned (and, again, it was often times fire engine red). I was a little concerned but since my doctor said I was okay, I didn't worry about it. Finally a huge clot came out while I was urinating and soon the blood in urine stopped. I figured that I must have had some kind of kidney stone or infection or something and that was the problem all along.
The blood returned in late spring of 2016. I knew this was something despite what my doctor's test showed. I had a regular appointment with my doctor scheduled so I brought it up to him then. I said that I was still urinating blood and he got a very concerned look on his face and said "what?" I reminded him that I came to him with the same problem in the past and he said he didn't remember it. He said (exact words), "I am sending you to a urologist to have that checked. I don't want to scare you but it could be cancer". And, low and behold, it was cancer (two tumors, one very large T1HG - 6 cm x 6 cm x 1.5 cm).
I have to say that I feel a little bit like a fool and like I was fooled by my doctor. I know I should have called him again when I began urinating blood the second time. But I figured the test results from the first episode showed no problems so this was just one of those things that had no explanation.
But I also think my doctor was lackadaisical about my condition. He was presented with a man in his late 50's who was a smoker and had gross hematuria (visible blood in urine) and he never told me come back if it returns or anything like that after the initial test.
I went back to my doctor after I was diagnosed to tell him that I had cancer (he already knew since the urologist sent him my x-ray results). We reviewed my case. He said that he did everything right when he sent me to have my urine tested. I think, legally speaking, he did. But, again, I think he was negligent (maybe not legally speaking) for not sending me to a urologist or, at the least, telling me to return to him if the blood returned.
I don't know if my tumor would have been smaller had we found it sooner (I am guessing it would have been) and thank goodness my cancer hadn't spread farther than it did, but, as you all know I am not out of the woods by a long shot. So, I have to admit that I harbor some resentment against myself and my doctor. I am going a little easy on myself because I was operating on the knowledge I had at the time (i.e., test results showed no problems and doc confirmed that sometimes they don't know why there is blood in urine). And, while I don't think I have any grounds to sue my doctor (he did send me to have my urine tested), needless to say, I think I will be looking for a new general practitioner.
p.s. I have stopped smoking. It may be a little late but I know it's never too late and, besides, research shows that continuing smoking after being diagnosed could mean a great chance of recurrence.
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