Ten years ago I was invited to give a talk at one of the monthly socials run by the Amersham & Chesham branch of the MS Society. Since then I have been asked back half a dozen times and fortunately I have found half a dozen other topics to talk about. Therefore when I spotted an Article by BBC reporter Caroline Wyatt titled How I’m feeling after my MS ‘body reboot’ I thought I would read it.
It is a well written (as you would expect) and thought provoking piece. With hindsight she realised that her first symptoms appeared in 1992 and more serious symptoms appeared ten years later. However diagnosis of MS wasn’t made until 2015 (MS is multiple sclerosis an auto-immune disease where the immune system goes wrong and attacks the body’s own tissues as is the case with ITP) . I hesitate to say that her symptoms were mis-diagnosed in 2002 because that may be a little harsh – so often symptoms can indicate several different possibilities and of course we know so much more now than we did in 2002 let alone 1992. A broken leg, for example, is easy to identify and the remedy is obvious. Not so with many diseases including prostate cancer and MS.
There has been a bit in the press recently about faster and more effective diagnosis of prostate cancer. Nothing earth shattering, just developments in technology, availability of resources and better organisation. Improved technology means more detailed information from a multi-parametric MRI scan which allows a more focused biopsy. Under the “rapid pathway” approach this takes place on the same day (if it is required) instead of a couple of weeks later. Of course this requires the equipment and technicians to be available to undertake (and analyse) the tests. The result is that it reduces the time for diagnosis from six weeks to one day. In addition the high quality mpMRI means that more unnecessary biopsies can be avoided and infection risk is reduced. It is also possible that mpMRI along with other developments could lead to a test regime which would make screening for prostate cancer as viable as screening for breast cancer.
Presumably the six weeks referred to is the time from the first scan to diagnosis and ignores the run up to the first scan. In my case the timescale was substantially better than six weeks. It was two weeks between the MRI scan and the prostate biopsy (which included Christmas and New Year!) and four weeks from my first scan to being given a diagnosis. In addition it had been four weeks to my first scan from the point when I first raised my concerns with my GP, making a total of eight weeks from GP to diagnosis. This is my timeline from suspicions of a problem to treatment starting with Hormone Therapy (Androgen Deprivation Therapy) and then chemotherapy.
Two weeks could have been knocked off my timeline if I had had a blood test before my prostate was examined rather than waiting a couple of weeks for it. (The prostate examination would have caused a false PSA reading if blood had been taken immediately afterwards – it needed time to get back to normal before I could have the blood test).
Where else could time have been saved? The obvious one is where I have put a question mark on the timeline because the suspicion of a problem creeps up on you. In August 2015 I was not aware of any problems, by mid-October I had an inkling that something was not right and so mentioned it when I had my annual check up with the diabetes nurse and then discussed it with my GP towards the end of November at a scheduled consultation.
Knowing what I know now I could have raised it with my GP weeks if not months earlier. So theoretically awareness of the implication of my symptoms leading to an early discussion with my GP followed by a blood test before a prostate examination, then tests on the “Rapid Pathway” could have meant a diagnosis in November 2015 instead of late January 2016. All hypothetical of course. What else could be done? Before I retired I was able to have regular check-ups which included a PSA test. This rumbled along slowly increasing from 0.4 in 1998 to 1.0 in 2006. It was not checked again until 2015 when it had reached 17. If I had had regular PSA tests between 2006 and 2015 warning bells might have been sounded earlier. Or maybe not.
But back to Caroline Wyatt who had a thirteen year gap between significant symptoms and diagnosis. Unfortunately the early symptoms of MS are easily mistaken for the symptoms of several different diseases so diagnosis usually is not made until the MS is relatively advanced.
Having got a diagnosis, the drugs she was put on were ineffective and various problems caused by the MS meant that she had to give up her job as a special correspondent for the BBC. What next?
She had seen a Panorama programme about stem cell transplants vastly improving the lives of some people with MS. Unfortunately her condition didn’t qualify her to take part in a trial in the UK so she paid for it herself going to Mexico for the treatment. This involved wiping out her faulty immune system with a course of chemotherapy and then rebuilding the immune system with transplants of her own stem cells which had been harvested earlier. Hopefully her body would then reboot and rebuild her immune system.
This was not without risk. Neutropenic sepsis could be fatal, as could the monoclonal antibodies (Rituximab) she was given before her stem cells were harvested. One of the risks of chemotherapy is that one’s immunity to infection bottoms out making you vulnerable to infections, such as neutropenic sepsis, (as happened to me when my mature white blood cell level dropped to zero following my first round of chemo – see Beetroot is not my colour .) However Caroline Wyatt felt that the small risk of death was infinitely preferable to the certainty of further silent decline.
A year on from her treatment she has been able to write about her experience and remains optimistic while her immune system continues to rebuild itself. It seems that this treatment can “freeze” the disease for five years but what the long term impact is remains to be seen. Let’s hope for the best outcome for this brave and positive lady. You can read her story here.