Nov 09, 2012 - 5:09 am
I have been NED for about a year, now. I have been having severe migraines. I had them before the cancer, but the hysterectomy seemed to take care of them. Now they are back in full force and worse.
I normally don't think twice about them. The past couple of weeks, my extremities have started shaking. Not a major shake, just enough that when I hold my husband he can feel it. Otherwise it is not visible. So, that has got me worried.
All my CT's have been of my trunk have and they have been clear. My CA 125 is in the single digits. I have been getting concerned about the headaches, so I called the ONC department here. I described the headaches and got condescended to.....over the phone no less.
"OVC never/rarely ever goes to the brain. I can tell you now this is not cancer related." ARGH, I thought that is a general statement that does not do justice to the different OVCs.
I went into my "My OVC is only classified OVC because it was found in the ovaries. It is a rare subset of small cell lung cancer, yadda yadda yadda." A doctor called me back and decided to schedule a brain CT. I will get a letter with the date.
It maybe nothing. My doctors in the US told me to have a low threshold for anything out of the norm. My particular cancer goes everywhere, especially the brain. In the US, I would have been scanned ASAP. I miss my old clinic...they were the bomb.
Still what worried me about the conversation was the stereotyping. Not all OVCs are the same. Some are really really aggressive. Some are not that aggressive. Most of our symptoms were ignored or downplayed early on. I resent that even now we still have to fight.