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Mar 15, 2016 08:12PM
Hi Shetland Pony,
Your symptoms sound so much like my own. By the end of last week, I was incredibly uncomfortable, and looked to be quite pregnant. I couldn't sit with my back against anything or lie down on my back - it hurt in a weird way. I said all this to my oncologist when I told her my treatment decision, and she ordered a therapeutic paracentesis last Friday. They were able to give me an appointment for Monday (good grief, was that only yesterday???), and I spent a truly miserable weekend, lying on my side, mostly dozing.
So, baby had her first para. I won't relate the details because they sound scary (the nurse's recitation of what was to happen pretty much freaked me out), but it was completely bearable. And the relief was incredible and instantaneous. I could feel my belly going down as the ascites was sucked out. For some reason, they only took 3 liters, saying it was "because it's your first time." What's that got to do with it? Just get it ALL OUT!!!
My appointment was for 9AM, and I had some idea that I'd go in, have the procedure, and then go back to work. (I work at the hospital where the procedure was done) Yeah, right. That might be possible for some folks, but not me. Somewhere in the weekend my husband insisted that he'd drive me in and take me home after, and I decided to take a sick day. Good decision. Mostly I needed to catch up on sleep and let my body take its time in healing. I worked from home today, took it quite easy, and am feeling so much more like myself! Tomorrow, I'll go in to work. There's still more ascites there, but presumably the taxol, which I start next week, will begin to take care of it. I'm hoping that my experience will be like Hummingbird's!
Anyway, here are my thoughts. I'm going to be very up front and state my opinions boldly. Please remember that these are only my opinions, so be sure to read and compare and talk to your doctors.
1. CT scan is what found my peritoneal involvement - the PET/CT did not. So CT with contrast is my hero.
2. Sounds like ascites to me - CT scan showed it in my case, and is why my oncologist ordered the paracentesis.
3. Ibrance/letrozole didn't really work for me, and I started having ascites for the first time while on that regimen
Ascites is lousy, but probably better than more mets. The CTs have shown the disease and its progression in my case. The readings are very subjective because, as Stephanie wrote, lobular doesn't make tumors. The reports read like "more hazing and stranding than last time." Does it say how much more? Not really. My oncologist always looks at the scans herself.
I haven't had any retroperitoneal involvement, but the CT report always mentions that the retroperitoneal and mesenteric nodes, whatever and wherever they may be, were examined.
So, Shetland Pony, I hope this helps and doesn't just frighten you more. I like Stephanie's recommendations for self-diagnosis. What I found is that I had a lot of pain in the belly, but it felt more like muscle pain than gas pains. Bending over to change socks was uncomfortable. And at the height of it, my sides ballooned out, too
OK, I will stop nattering now.
Hope you find relief soon.
6/6/2012, ILC/IDC, Left, 1cm, Stage IV, metastasized to other, Grade 1, 2/2 nodes, ER+/PR+, HER2-