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I thought I might post a line or two to perhaps provide some insight for newbies on some aspects of medicine as practised today.
As some of you might know, I have a kidney problem. The most likely cause is the expansion of the untreated tumour from the prostate gland to the junction of what is termed the VUJ - vesico-ureteral junction of the left kidney. The right kidney is fine. This VUJ is where the ‘pipe’ draining the left kidney enters the bladder and because it is blocked, the kidney is essentially waterlogged – or should that be urine logged. Anyway it is swollen and not functioning. I am to be admitted to hospital on August 13 – coincidentally almost 17 years to the day since I was diagnosed with prostate cancer - for a short stay – probably not more than 24 hours for the resection of the urteric orifice. In other words the “reaming out” of the material causing the blockage which will then be sent to the pathology lab for analysis and to confirm the diagnosis of cancer. A stent will be placed in the reamed out area and this should enhance the flow and allow the kidney to recover most, if not all its function. The stent may need replacing in 6 – 12 months as apparently it ‘furs up’ over time.
So that is the news, here are some observations that may be relevant for the newbies:
1. The attitude to numbers decreasing differs from the attitude to numbers increasing. My kidney diagnosis came about because of an elevated reading in creatinine levels in a blood panel. I had four readings:
May 24 157 ng/ml
June 11: 146 ng/ml
June 26: 138 ng/ml
July 24: 159 ng/ml
When I saw my cardiologist and my GP after the third reading, I asked if the reduction in levels might have anything to do with a spontaneous remission of the problem (which had not been fully diagnosed at that time). No they each said – those readings are within normal error tolerances. But said the urologist when he saw the last of the readings – you’d better have the procedure sooner rather than later with that rising number! So a change from 157 ng/ml to 159 ng/ml is material while a drop from 157 ng/ml to 138 ng/ml is error margin. Hmmm….. I mention this because there is precisely the same issue with fluctuating PSA results. Those which are lower are generally speaking ignored: any that are higher are treated as a warning siren. I’m not saying that a rising PSA should be ignored. I am saying it should be treated as an item to be considered within the overall results.
2. PSA is not prostate cancer specific. I asked the urologist if he thought that the latest upward movements in my PSA levels could have been associated with the kidney problem. His answer was an unequivocal “No, PSA is prostate specific.” Yet it is not. Aware of my good wife’s strict instructions not to be confrontational with this new doctor, I bit my tongue but merely asked how bladder infections and UTIs (Urinary Tract Infections) could elevate PSA if that was the case. He acknowledged that this was so, but said my PSA was elevated because I had metastasised disease. See below….. and at PSA 101 if you are interested in the basics
3. A negative scan does not trump a positive scan. As I said above one of the reasons my good urologist suggested that my PSA was on the way up was because I had metastasised disease. Trying not to sound confrontational I asked where the evidence was for this statement – apart from the elevated PSA. He referred to the nuclear bone scan in 2007 which had identified a lesion and labelled that metastasis. But, I said, non confrontationally as I could, the two subsequent nuclear bone scans, the last of which was done in July this year could find no trace of that lesion or indeed of any sign of metastasis. Well, it turns out that the medical belief is unchanged - positive scans are most likely correct while negative scans are incorrect, having missed the target.
4. I have no regrets. Both my oncologist and my urologist confess that they have never had a patient quite like me. I like to think they are not referring to my attitude, but to the fact that most of their patients are either newly diagnosed in the case of the urologist or terminal, in the case of the oncologist – and possibly newly diagnosed too. They simply have never dealt with anyone with a sixteen year history of AS (Active Surveillance). The urologist asked me if I had any regrets in not having surgery in 1996 when I was diagnosed, adding that if I had done so, I would not be in the position I now find myself. Fortunately my wife’s presence kept a lid on my reaction. My thought was one of annoyance, anger, disappointment, that after all these years and after all the studies that show that surgery is not necessarily the “best” option for some diagnoses, here was a perfectly nice, very helpful doctor still holding on to the surgeon’s belief that cutting solves all problems and causes none. I gave him the link to my piece at Why I Did Not Choose Surgery I doubt that he will read that, or change his views but it made me feel better.
Terry,
I have been completly amazed at how most doctors react to a patient whose illness doesn't behave how they expect. They will simply deny seeing what they are seeing. I am actually surprized that he didn't claim you were dead and refused you treatment on that basis.
So far I've gotten excellent treatment and results for my textbook case diseases I've had but I can't imagine what will happen if I get a disease where the lab results don't match what the textbook says.
