May 30, 2013 - 10:12 am
So I'm still in limbo, kind of. The CT scan was compared with my PET scan from Feb and all of the nodes that were "hypermetabolic & likely malignant in nature" are still enlarged. They haven't grown, so that's a good thing right? But they haven't gone away, so whatever's going on is less likely some random unknown virus since it's been almost 4 months. I assume anyway.
There are a few new things in the report that concern me, & he didn't tell me about them so I couldn't ask him to explain. (I had to read it online in my "see your chart" account) First, it says "there is bilateral hilar soft tissue thickening seen". What the heck does that mean? Then it says that my right ovary is still "prominent" (the one that was hypermetabolic on my PET but that the ultrasound said was ok). There's a right external iliac lymph node that's enlarged now, that wasn't mentioned on my previous scans. And there's a subpleural left lobe nodule that wasn't seen in February. (the spots in Feb were on my right lung) Several aorticopulmonary nodes too, another thing not mentioned on my PET results. Seems like a lot to me, but I'm no doctor.
At first he said we'd just wait 4 months & do the scan again to see if they've changed. Be careful what you wish for right? I didn't want to hear him say wait 3 months & he didn't lol. I asked him if we should be concerned about all of the "stuff" that's going on around my lungs since my 38 year old brother died less than a year ago from lung cancer. He said no, but I was thinking maybe I should see a pulmonologist if for no other reason than to ease my mind. My brother's symptoms were misdiagnosed for 4 months, by the time they figured it out it had spread to his brain & he was gone 6 months later. I know my risk factors are low (he was a smoker, I've never smoked once) but it's still a lot to have on my mind regardless. Not to mention how much I worry about my parents who already lost their son. I want answers for them just as much as I want them for myself.
I asked him how I'm supposed to deal with this fatigue for another 4 months, so he decided to order a bunch of bloodwork (10 vials of blood!) & we're going to review the results next Friday. He also said we could do a bone marrow biopsy. So I feel better knowing we're doing something, kind of, but it's sad that I'm hoping something shows up so that I don't have to wait til September. I feel like my life is on hold in the meantime, at least parts of it. Can't exactly go out on a date with someone when my health is up in the air, so to speak. I know this sounds dumb to those of you going through hell right now, I'm the type of person that likes to deal with something head on, take care of it, and move on from it. Limbo does not work well for me.
Thank you ALL for all of the advice & support you have given so far. I try to reply back to every comment, but if it gets busy here at work I don't get the chance to. I promise that if I get a clean bill of health I won't disappear without letting everyone know first. I don't post a lot yet because I'm still so new to this & I don't feel like I have much to contribute. I do keep up with everyone's posts & watch to see how everyone is doing. You guys are all awesome & I'm thankful to have found you on here :)
I'm sorry this is so long, and if it jumps around blame it on my job since I was multitasking while I wrote this :)