OKAY – Time for another rant. The NHS is so dreadfully, awfully terrible! (This statement was a lot longer in my head, but since this is online I though it would be better to delete all expletives. Then the statement was a bit short, so I had to add a few decent words, which really do not come close to expressing my thoughts and feelings) The NHS seems to not know what BRCA1 is, nor care for those affected, nor interested in providing real support like other countries do. It seems more fun and interesting to them to let those affected get cancer first and then offer any and all help necessary. Not really a good strategy in my opinion.
For those not in the know: BRCA1 is a cancer gene that makes the female carriers risk to get breast cancer somewhere in the area of 56-85% (as opposed to 10-12% for non-carriers). Now admittedly breast cancer is not the worst one out there: there are fairly good screening possibilities and, when caught early, good survivability. Most countries advise therefore that carriers of the BRCA1 gene in the age group of 30-40 get a clinical exam twice a year, an MRI once every year and a mammography once every two years. On top of that the carriers of this gene also have a larger risk to get ovarian cancer – 15-40% (as opposed to 1.4% for non-carriers – btw yes there is a decimal point in 1.4%). Screening for ovarian cancer is considerably more difficult, so I was advised (while still in the Netherlands) to get prophylactic surgery.
In discussion with the genetics team here – who deal with screening etc surrounding this sort of cancer risk – I was told that there was a very good alternative here to the prophylactic surgery: Something to really consider if I’d rather not have surgery. Of course I’d rather not have any unnecessary surgery, so for a moment there my heart made a happy jump. The alternative? To get blood tests done about 6 times a year “and then when you have cancer we’ll know what we should have been looking for”. I kid you not: that was given as an alternative. If you don’t want surgery to prevent cancer that is most likely going to kill you because it is so hard to spot in time: just get the cancer. I realise that technically speaking the woman was right: to opt for doing nothing to reduce your chances is indeed an alternative to trying to reduce them. I wouldn’t really call it a winning strategy though. So having established that she is not concerned with my best health and wellbeing, I decided to decline her kind offer to stick my head in the sand and instead go for the surgery anyway. Haven’t regretted it since.
In 2009 the research said that it would be risky to have too many mammographies, but instead MRI should be used to help early detection. This should be done on a yearly base. The Scottish government and NHS officials put it on their to-do list in the recommendation to have this in place as soon as possible. It is now 2011 and there is still no progress made whatsoever. MRIs are still not offered or even planned.
And now the team have come up with a wonderful new gem: lets cut the clinical exams. “They have never been solely responsible for a cancer diagnosis” and “they’re only there to make some older women feel a bit better”. (yes they are actual quotes)
I’m not sure which offends me more: the fact that they are stupid enough to think that because it has never been solely responsible for a diagnoses equals that they are not contributing or helpful; the fact that I’m now being called “an older woman” or the fact that they imply that I’m a nervously whining wimp.
I am sure that I’m severely pissed off at the total lack of understanding and care for this issue. I will now be elegible for 1 test every 2 years. I’d love to see the research that says that that is a good idea. I’d love to see the researcher and see how many breasts he/she has (or how many their closest loved ones have).
I want to bet that they’re similar to the guy who heads the breast cancer screening centre. I’ve had one run in with him when I had cause for concern. A doctor who went over my family history with me and seemed perked up by every person who had this sort of cancer (even uttering the occasional “oh okay”) and disappointed by everyone who didn’t – clearly repeating “oh not yet” for every single person. Not yet? What sort of a heartless comment is that? Even my then 6 year old niece was put off as “not yet”. Without the use of expletives I’m at a loss to say anything about that sorry excuse for a person. He then tried to explain that BRCA1 was really not that big a deal, quoting percentages that were even less than the general population. After saying “not yet” that seemed a bit odd, but I was far too upset to care and simply told him he better brush up on his statistics as they were rubbish.
No Help Service – that’s what they should be called.
Well pox on them all. They’ve not heard the last of me.