Hey chicas. I've spent a lot of time researching the past two years and watched my own disease progression. I feel comfortable enough with the disease to tell you to do this:
GET YOUR BRAIN SCANNED
HER2 disease (and also triple negative) have a propensity to spread to the central nervous system, more than other types of breast cancer. It will often be the first site of mets. They say if you can go three years without it coming back then the risk of it coming back is really low, like less than 5%. It reminds me of early pregnancy, if you can get to 9, 12, 14 weeks then each benchmark passed increases the likelihood of a good outcome.
It turns out that HER2 will show up in the central nervous system within the first two years -- it grows that quickly. Yet, the standard of care was developed years ago for all breast cancer types (we are individuals dammit!) and the rule is that they don't do brain scans without symptoms of nervous system disease. The problem is that:
1) their observational and assessment skills of brain mets are really poor, even amongst the most skilled
2) the brain has no nerve endings so unless you have tumor developing in a critical area you are unlikely to feel anything
Caught early though the options are much greater and the treatments less harsh than having open brain surgery (hello, yes I could have done without throwing up for weeks and being close to death in spite of seeing the doc).
The only part of the brain that has feeling is the dura and maybe your tumor will irritate it? That seems like a hell of a lot of chance that something won't go right at all.
Some patients have told me that their docs did regular brain scans of their HER2 BC and were like sh!t when it showed up. But they got monitored and it buys time. You can get cyberknife, gamma knife or proton therapy to tiny lesions -- they are treating up to 30 lesions in melanoma patients, for breast cancer they freak out after 4 and say "whole brain radiation!" But push back and protect your brain.
If you are HER2+ central nervous system disease will show up in the first couple of years but your doc won't offer it. It is not your fault that they treat everyone the same and that the standard of care that was developed by professionals is entirely inappropriate for HER2+ disease given the hard science and facts. So, here is what you are going to do to get around insurance companies willingness to pay for appropriate treatment: LIE
I'm sure others can pitch in ideas too but feel that you have absolute permission from your HER2 sisters to lie your a$$ off in order to get scans. Tell them you feel dizzy, that you have ringing in one ear, that you feel nauseous in the morning only -- I have a whole other thread about
brain mets symptoms, feel free to memorize the list. If you get a clean scan then you are one step closer to true NED. Keep going for 2-3 years and then you can be pretty sure that you are good to go.
With love,
Ann
PSA: Get your brain scanned
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