New Here

[sauciehall78]

I’ve been lurking on this board regularly ever since my mom was diagnosed January of last year. Yesterday marks her 1 year anniversary of her sigmoid resection. Her ct last February (right before surgery) was clear aside from some small things in her liver that the radiologist and onc were pretty sure were cysts. Too small to biopsy.

Backtrack: my mom has an hmo (Kaiser) and we have been happy with her standard of care and her oncologist. But reading about others’ experiences with the specialized centers (mskcc, sloan) and the extensive tests they get, I wonder if we could have done extra. Her blood work doesn’t check ca19, etc. the onc never really discussed cea unless I brought it up. Her liver panels are bilirubin (which fluctuates 1.0-1.9, they think she just has naturally elevated levels), alp & alt have always been well below the limit. They got slightly elevated (still within normal range) mid-chemo but went back down, so the onc said he wasn’t concerned with her liver and treated her as standard stage 3. He didn’t do scans during treatment. He does a colonoscopy and ct scan 1 year from the initial procedures.

She finished chemo end of August and it was rough, she still has really bad fatigue & neuropathy. We haven’t seen her onc since then as he went on leave. We met the temporary onc last month for her 1st blood test since chemo. She said it looked good (aside from the slightly high bilirubin). Her cea is < 1.0 (I guess Kaiser doesn’t give an exact number below that). Pre-surgery was 30, right after 2.2, then during chemo it just kept getting lower so she said cea is a pretty good indicator for her.

She had a ct scan last week. The onc called yesterday with good and bad news. Good news is that she’s NED, the scans were clear. Bad news is the liver lesions from the 1st scan aren’t there so she thinks she may have started off with liver mets and is now “incurable.” She said the only real “cure” is to wait for the lesions to show up again and to see if they can remove with surgery. She said it’s unlikely those lesions would have just gone away if they were benign cysts. I’m absolutely devastated. I don’t have a copy of the scan and she just went through it really quickly over the phone. In the back of my head, I’m hoping she misread the scans or didn’t interpret the 1st one correctly; but I also have to face reality. We’re meeting with her regular onc when he returns 1st week of March, and we’ll discuss next course of action then. In the meantime, we’re grateful for her current NED status.

I find solace and comfort in reading about everyone’s experiences knowing that I’m not going through this alone.

btw - if there's a moderator around, I got locked out of my old account and had to create this new one.

[CRguy]

btw - if there's a moderator around, I got locked out of my old account and had to create this new one.

Welcome BACK ! this is your lucky day ....
I need your old account name which you can send me once I have sent you an email and a PM to reply to.

Best wishes and glad Mom is NED !

Cheers
CRguy

[Cowgirl918]

Welcome back to the group. I am sorry to hear your news. Have you asked for copies of the radiologists reports from both scans? It might be a good idea to take those with you when you meet with your regular onc. In the mean time make your list of questions and congrats on NED.We will always take whatever good news is available. Take Care.

[DarknessEmbraced]

Good luck with the meeting with her oncologist!*hugs* I hope everything goes well!

[sauciehall78]

I don't have a copy of the new scan, only the first scan pre-surgery. Everything is integrated at kaiser so the onc would have all records. I might just hold off on asking to see it though until when we see him in a few weeks. Just enjoying my mom's health right now. Thanks everyone for your kind words and thoughts.