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Angela Wright said:So, we're looking at breast cancer with metastases here. If I were in your shoes, I’d be pushing for a bone scan to see if anything has hitched a ride on the bones—especially the spine, because that's where the devil loves to hide, and you really want to get radiation on that immediately if it is there.
The mom is likely going to need a mastectomy, maybe even bilateral depending on what the doctors find, right after she finishes some chemo. She'll probably get Herceptin down the line.
How old is she?
To be totally blunt, right now it's a holding pattern, mostly because of that effusion; as soon as you puncture it, it just refills even bigger, and that can really mess with the heart and lungs. I'm crossing my fingers that the tumor stops growing and starts shrinking under the chemo so the fluid buildup finally quits.
Having metastatic disease definitely isn't winning any prizes, and being HER-2 positive doesn't help matters either, but despite all that, she still has a fighting chance—especially if the targets are just the lymph nodes.
Look at it this way: she’s actually lucky they caught the primary source. So many people don't even realize where it started and never even get the chance for a real fight; they're basically just shooting in the dark.
Mom is 59. Wouldn't a PET CT already pick up changes in the bones, or is a bone scan really necessary?
Hey everyone, sending much love to you all—huge respect for how brave you guys are and for looking out for one another.
Honestly, my mom’s diagnosis has been such a gut punch that it drove me straight to these forums, and I’m really hoping you can help me navigate this. I’m especially looking toward Angela Wright, because it looks like she knows her stuff and has walked through this same kind of hell with her own mother.
So, here’s the deal: about two and a half months ago, my mom ended up in the ER at the pulmonary clinic because of a pleural effusion. After testing, it came back negative, but she spent three weeks stuck in the hospital practically flying blind without a solid diagnosis. In the meantime, they ran every test under the sun, including draining a pericardial effusion (which was about 700 ml of bloody fluid) and doing a lymph node biopsy, which, unfortunately, came back positive. Then they did a PET scan, which showed changes in the lymph nodes, so they sent her in to have those nodes removed. But then things went south fast—she had complications from a recurring pericardial effusion, and this one was way worse than the first. It forced them to combine the surgery for the lymph nodes with the procedure for the effusion. Just to be clear, they found metastases in the lymph nodes, but they haven't pinpointed the primary tumor yet. To make matters worse, things took a turn for the absolute worst after the effusion was treated; she ended up in the ICU, where she was in a coma for eight days. The doctors were basically preparing us for the worst-case scenario, but somehow, against the odds, she woke up and started making contact again. We finally got the results, and they look roughly like this:
CARCINOMA MAMME METASTATICUM
HER-2: POSITIVE (SCORE +3)
Ki67: 62.4%
TUMOR IMMUNOPHENOTYPE: Luminal B, HER-2 positive
Estrogen receptors: 90%
Progesterone: 25%
This sample is from both the pericardial tissue and the lymph node; turns out they’re the same thing.
She just had her first round of chemo yesterday, and once the insurance/Medicare approval clears, she’ll start on targeted therapy.
I know deep down that these results aren't good and the prognosis looks grim, but please, if anyone can break down what this actually means or offer any advice, I would be so incredibly grateful.