last week--high-grade serous carcinoma--this week adding in a high-grade sarcoma

AnneC

Hi, folks, last week, a couple of the seniors here suggested I take a deep breath. I needed it--this week saw a respected gyn/onc here in the Philadelphia area. Very smart. Runs his shop like a clock, and is highly placed in the health system I am now going to.

He said I had Stage IVB (because it had spread to the inguinal node) uterine cancer, but that it was curable, with a combo of surgery (assume he could remove the uterus), chemo, and (later, if needed) radiation. Recall the lymph node I'd had tested last week said high-grade serous carcinoma. I am due to have robotic (though open if he has to) surgery next Wednesday to remove everything, including cancerous nodes and potentially risky nodes if left in.

He did a D&C Tuesday of what is now my 7.5 cm uterus (at its widest) on Tuesday. He was happy in that he could "move" the uterus--meaning it had not glommed onto my pelvic wall. He called me Wednesday to say the pathologist was seeing just a bunch of polyps and not finding cancer yet, so the cancer might be in the ovaries or the fallopian tubes, but said we'd need to wait a bit more. Had a PET scan yesterday--that was interesting. That showed the tumor and spread to (as we knew) a couple of inguinal nodes, an iliac node, and (as I'd learned from the CT scan about 2 weeks ago) a pelvic wall node. No pelvic aortic node spread. No lung spread.

I have yet to talk with the doctor about the PET--or the D&C biopsy, which came back late today. The report says I have a "biphasic" neosplasm with a "prominent spindle cell" component and "rhabdomyoblasic" differentiation. 80% of the sample looked at is "high-grade sarcoma," and 20% serous carcinoma (presumably what they saw in the node). I am not a doctor or a pathologist but can look up stuff....and it sounds like I am screwed--appears I have the two most aggressive types. Then again, what do I know....

My doctor has done this ride lots of times, though, and will likely still say it is "curable"-- though I wonder if that's what he says to all the girls. I expect to hear from him early next week; given his impromptu call to me Wednesday (he called me from his car, letting me know the pathologist's first take and checking on a minor side effect I had post D&C), I would not be surprised if I heard from him sooner. He responded to me via email at 620 this morning about what my CA 125 was (95), so he is very engaged.... At minimum, I am due to see him before the surgery. So I am confident I have the right local team here.

My brother from Pittsburgh spent the week with me, ferrying me around with help from a local friend for the first leg (the initial consult), and we are getting ready for the Pittsburgh move I mentioned, which the doctor is OK with (he can recommend specialists he knows there) once I get past the surgery. I have already rented a duplex ACROSS THE STREET from my brother, so hope to move in late August, if things fall into place and I don't get hit with a massive curve ball.... It was nice not to be so alone this week--but he left yesterday, so I am back to obsessing, as you can tell.

Any thoughts on all of this?