As I explained in a previous post, the department at Charing Cross Hospital (CXH) monitor women post molar pregnancy and treat them should the condition develop into cancer.
I'll explain the first stage of monitoring, or follow up.
Once a woman has been diagnosed she is followed up with fortnightly blood and urine tests. You are sent a cardboard test kit which looks like this:
It's very slim and fits through a standard letter box. They thoughtfully come in unmarked brown enveloples. Of course, you very quickly know what's come through the door.
This is what they contain:
Two aliquot tubes marked with your name, date of birth and tumour reference number and what they should contain; a plastic bag, and an information sheet. This is what you fill out with details such as your telephone number, date of last menstrual period and any changes to your GP or address. Every other week you have to send them your urine and blood. Of course, this involves a visit each time to a blood clinic or GP's phlebotomist. I became very friendly with the practice nurse!
The samples are then sent to Charing Cross Hospital to be tested on their super-duper HCG testing machine. Four days after your samples are posted from the local lab, you can telephone for your results. Each test, you are looking for your HCG count to have gone down. Preferably by a huge amount, but any amount is fine as long as it's down.
These is my schedule of results:
16 Jan 408672 - day of the evacuation. These levels are nearly double those of a normal pregnancy.
1 Feb 1334 - from the local GP
9 Feb 672 - first test from CXH
22 Feb 297
7 Mar 492 - A rise
19 Mar 116
5 Apr 99
19 Apr 74
2 May 36
16 May 2 - WOW! - normal is under 5
Each one of those dates represents a cardboard box. Counting up the six monthly tests I had after my results came to normal equals 16 boxes. The postal cost for each box is about £6 so in total I cost the department £96, let's round that up to £100. I'll need to check how many women are "on the books" at any one time but I think it's a few hundred per year. It soon adds. up. I'd like to help ease that pressure.
However, the main project that we're fundraising for is the research.
Once a molar pregnancy is diagnosed, unless there are clear signs shortly after diagnosis (heavy and persistant bleeding, HCG levels continuing to rise after evacuation) no one can tell whether the tumour will develop into a chroricarcinoma - a cancer requiring treatment.
If you look at my levels above, you'll see that on 7 March 2012 the result from that day showed that my levels had risen. If levels rise twice or stay the same twice, this means the tumour requires chemotherapy treatment at Charing Cross. There was no way of knowing if this was needed. I just had to wait until the next test to see what was going on. Women who have had a molar pregnancy become very good at waiting.
As there is currently no way of knowing whether a tumour will develop into cancer, it really is just waiting to see what happens with the HCG levels and any other symptoms. This is a desperately difficult time, with no possibility for the patient to do anything that will resolve the problem. There is no medication, no activity, no nothing that anyone can take or do to reduce the molar tissue. It's excruciating. The research that the Cancer Treatment and Research Trust at Charing Cross hope to develop a test at the point of diagnosis that will tell us whether a tumour require treatment at that point, not weeks or months into follow-up. It will make such a difference. And mean fewer cardboard boxes.
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