I am a teacher and trying to decide whether to apply for disability retirement. I was first dx. with IDC in 4/08. Had lumpectomy, axillary node dissection with 2/8 nodes positive, AC x 4, 12 weekly Taxol with concurrent Herceptin and then 30 rads tx. During my radiation, I presented with symptoms of IBC but all my doctors said it had to be side effects from radiation. It was debated from about 3/09-6/09 when I finally convinced them to biopsy it, and it was IBC. So, all my chemo and rads had been totally ineffective.
I was referred to MD Anderson and my onc there stopped the Herceptin (which I had been on for 9 months at that point) and switched me to Tykerb and Xeloda which immediately began working. A month later my IBC rash was gone and all the other syptoms abating. I stayed on both T and X for 6 months and stopped the Xeloda in 1/10 right before my uni-mx and another node dissection. Pathology on all of that shows NED. But, I remain on Tykerb to this day --- 27 months so far. My local onc wants me to stay on Tykerb for 5 full years, but that is not definite. Going to see what my MDA onc thinks. I go back there in January.
Although I have taken off at various times during this so far 3-1/2 year time period since my original dx, I am currently teaching (140 middle school kids). I come home totally exhausted. I feel weak a lot of the time and have the typical chronic diarrhea (from Tykerb) every day. The fatigue is hard and working is just wearing me out, but I am torn about what to do.
My local dr says that because of it being recurrent, he considers me stage IV. I know that an IBC dx is a pretty poor prognosis. Everything I read (and I read a lot) says that only 25-50% of IBC patients will still be alive after 5 years. I hope to be one of the lucky ones but only God knows.
I am struggling with whether or not I want to apply for disability retirement or not. I don't want to work up until the point that I am maybe really sick again and have no time to enjoy retirement but I also feel guilty considering doing this.
Anybody else go through anything like this and have any advice for me? I'd especially be interested in hearing from women who also take Tykerb but replies from any and all will be appreciated. Anybody know how likely it is to get a disability retirement with a Stage IV IBC dx who is currently -- we *think* --- NED? (Of course we are all just a scan away from that changing aren't we?)
(Applying for it requires me to stop working for 6 months which would mean long term disability again and then possibly being denied. If denied and have to go back to work, it would put me that much further from my 30 years to be eligible for retirement. I currently have about 28 years in. 28 years seems so close to 30 when you read those numbers but the fact is that teaching for the rest of this year plus two more years is a lot of time. I am ready to not work but just not sure what to do. Feel guilty if I quit but also don't want to regret not quitting sooner if I have a third recurrence.)
Sorry for so long. Thanks for taking the time to read.
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