This is a diary of events surrounding the discovery that I have haematuria, blood in the pee, first noted sometime towards the end of February, 2008. (See Archive)

Initially, having undergone all ’standard’ non-invasive procedures, bladder cancer was not be ruled out as I did not submit to a cystoscopy examination.

My efforts since have largely been on discovering any bladder anomalies and minimising the symptoms. A cytology examination that discovered a small group of epithelial cells in a urine test is the now the focal point. The results were described as highly suspicious of ‘Transitional Cell Carcinoma’

October-November
Shelly has shown the pictures to colleagues at Exeter, but has urgent family issues to deal with. So I’ll be waiting a while.

October
Have had a quick look at the reports and pictures with Shelly, and she intends to take them to her work colleagues for further views. Thence we will look at the slides.

September 19th
Spoke to Shelly and will call her when I get the piccies.

September 17th
Spoke to Laura and she said the loan of the slides is to avoid them lending me the microscope etc.

September 16th
Yesterday I paid to have pictures taken of the dodgy cells in my June tests.

The option will be to:

• Take more pictures of the slides: Must check my compact flash cards are viable.
• Take the slides to Exeter for further analysis.
• Do another cytology test. Have to chase up the staining procedure.

20th June 09:30
Yesterday I spoke to Dr M as I gathered she had the results of the cytology tests. Two of the three ’showed indications of transitional cell carcinoma’.

Draft ideas to present to ‘Statutory Health Professionals’

How significant is the indication is that either the haematuria has stopped or just about so?

The first issue is that I wasn’t able to monitor events earlier as a) I wasn’t aware that there could have been a problem for possibly six months prior to the obvious; b) once there was a visual indication I thought the first two instances could just be anomalies from strain; and c) when I did approach the GP she was against my self-monitoring.

I see no reason why people should be discouraged from self monitoring, and the cost of 10p per week can hardly be a legitimate reason not to object. Urine testing can expose a substantial range of metabolic imbalances or abnormalities. Once a person finds an anomaly they could then monitor daily. On approaching a GP for assistance then everything possible should be done to help the ‘patient’ (bad word) investigate and or monitor their condition.

As far as my personal condition goes, I’m waiting at least until the end of the month so I can show a months results of little or no haematuria. That there is some, is only notable as I have testing sticks indicating that, which would otherwise go unnoticed to the unaided eye.

Without the test sticks I would have no idea of what is going on.

My ‘worry’ now is not that I may have any obvious haematuria indicating a continued or increased physiological damage, but that even a few cells could indicate an unwanted turn of events. I haven’t found data on urine samples in either a haematuric or a ‘clean urine’ situation.

At least the data I am gathering may be of some use even if the situation deteriorates.

I have created a graph, spanning 3 months with a backward projection indicating the level of haematuria for fortnightly periods. Both exponential and logarithmic trends are optimistic.

However I can see the reluctance of any GP to be unimpressed, and for their professional standing would like to have further information via cystoscopy. Their requirement to maintain a professional standing does not necessarily equate to the best procedure, just the commonly accepted one.

I am not a slave to the health professionals and their insistence on an invasive procedure is largely authoritarian. Until their desire to investigate equates to mine their use of “we need to get to the bottom of this'’ or “this doesn’t help us” is just bullying. There is no ‘we’ or ‘us’ in present situation. I am gathering information so I can acquaint myself with my body. Without a satisfactory and common knowledge there can be no agreement on what action would enhance this diagnosis.

Statistical evidence is the method by which common procedure are agreed, and yet I see no evidence that my analysis is spurious to the investigation. Only further monitoring and evidence would provide enough statistics to show that such an investigative method would be useful in diagnosis.

On the graph below, apart from the obvious and substantially progressive decline, the notable points are:

1. The red horizontal line indicates the theoretical maximum that the urine testing sticks can define, at approx 200 cells/µlt
2. At 300 cells/µlt the blood may be visible??
3. The blue mark and blue hatched area is an estimate of the average for the two week period before I acquired the testing sticks. The figure if anything is more likely to be on the low side.
4. Exponential projections would never reach zero, and the logarithmic projection indicates complete cessation at the beginning of June, which is much the case.

 

 

Subject: Haematuria and Cytology
From: Roger Lovejoy
Date: Fri, 06 Jun 2008 13:16:34 +0100
To: martina.hornby@phnt.swest.nhs.uk
User-Agent: Thunderbird 2.0.0.14 (Windows/20080421)

Dear Martina Hornby

Thank you for the time you spent helping me with my cytology queries regarding haematuria.

Re: Recommended Procedure for samples
You mentioned the recommended procedure is for three samples be taken, mid-morning, on consecutive days.
As the local surgery has samples collected at 11am I’m wondering what
condition the samples need to be in when they arrive at Derriford. Do
they have to arrive separately each day, so they are ‘fresh’ or can
they be stored locally, refrigerated or otherwise and then sent as a
batch?

On the subject of ’screening’ for types of red blood cells
I can refer you to two web site pages. I have emailed the second and am about to call the first:

On reading the first again, I note doesn’t specifically say that the cytology is the method for assessing the source of blood, its just the way its written in the same paragraph. It was very useful talking to you as it became clearer that using cytology to find the source of
haematuria may be a red-herring

1. From: http://www.carepathonline.com/Topic.aspx?Nav=0&Rel=166

“Your doctor may order urine cytology if you have blood in
your urine and a definite cause of the bleeding has not been identified. The medical name for blood in the urine is hematuria. It has many causes, including strenuous exercise, too much stress, infection, kidney and bladder stones, and even cancer. When there is blood in your urine, it is important to identify what part of your urinary tract the blood is coming from so any problems can be properly diagnosed and treated.”

2. From: http://www.wisegeek.com/what-is-cytology.htm

“Another important aspect in the discipline of
cytology is
examining
cell interaction. By studying how cells relate to other cells or to the
environment, cytologists can predict problems or examine environmental
dangers to cells, such as toxic or cancer-causing substances. In humans
and other multi-cellular structures, cytology can examine the presence
of too many of one kind of cell, or the lack of enough of a certain
kind of cell. In a simple test like a complete blood count, a
laboratory can look at white blood cells and identify the presence of
an infection, or it may examine a low level of certain types
of red blood cells and diagnose anemia.”

All the best

Roger Lovejoy

Well I’ve pretty much decided to have the cytology as I am now in a position to find out what I want rather than being a mindless consumer of the NHS.

I have just, 13:00, been talking to Martina Hornby, Chief Bio-technician at Derriford Cytology. She was not aware of cytology being used to test for blood cells as a way of finding the source of haematuria. This made me read the info I had more carefully. See my email to her, which also queries the procedure for supply samples of urine.

However I have just revisited the site where I thought cytology was mentioned in relation to types of blood cells, thinking I was mistaken only to find this.
From: CarePathOnLine.com

If There Is Blood in Your Urine
If red blood cells are present in your urine sample, the pathologist will examine them closely with a high-powered microscope to observe their shape. The shape of the cells tells the pathologist whether they came from the kidney or from another part of your urinary tract. The pathologist also will study the physical appearance, acidity (pH), and chemical makeup of your urine and determine whether any casts are present in your urine (see below). All this will be helpful in identifying the nature of your problem.

So I hardly need to call to confirm, but will. They may be my best option. CarePath Online is the support feature for ‘Dianon’. a Labcorp Company. 200 Watson Boulevard Stratford, CT 06615 Phone: 001-203-381-4000

-:- 14:20 Have just called Dianon and had to leave a message for Matthew Plamkoodin. I have also email him there via plamkom@labcore.com

-:- 17:05 have just emailed Dr Mccormick with my latest findings re: assessing red blood cell origin and the three shots procedure for the cytology at Derriford as per Martina’s reference. About to call Dianon again.

-:- 17:20 Have just spoken to Matthew Plamkoodin and he has confirmed that they can tell if blood source in the urine is from the kidney, urinary tract or bladder. He will get back to me on how its done and how to get them to do it for me if its not available in the UK. -:- 17:38 Just sent email.

-:- 17:39 Have also just received a reply from wisegeek.com, which directs me to leave a message for other users. Not going to follow this up, as the issue is resolved in communications with Matthew Plamkoodin.

27th June 14:50
I’ve just about given up on Plamkoodin and co. I’ve sent yet another email and have no reply. I’m thinking they can only differentiate between blood from the kidneys as the cells are somewhat squashed together other than any other part of the urinary system.

Summary: Overall not too bad a week and have decided to have the cytology test, although I am waiting on a few issues. See Cytology Option.

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