Looking for answers
I don't mean to be a damper on anyone else's battle with colorectal cancer, but I've just lost my wife to it and I'm looking for support groups... and answers.
She was diagnosed stage IV in July 2017. It was a "right-sided" cancer, with the primary tumor in her transverse colon. By July 2018 they stopped trying to treat the primary cancer, especially after brain mets were discovered. The AANS calls treating brain mets while the primary cancer is not under control a "futile endeavor" - hers was never under control.
The disease progressed while she was on mFOLFOX6+Avastin, 6 cycles, it was known that the disease was progressing after the 3rd cycle but she was kept on it anyway. Then she had an adverse reaction to the oxaliplatin component on the 7th cycle and was switched to FOLFIRI+Avastin, it was known that the disease was progressing after the 3rd cycle but she was kept on it for 5 more cycles anyway. There were also a couple of medically-unnecessary delays, 6 extra days between the 1st and 2nd FOLFOX cycles, then 8 extra days between the 1st and 2nd FOLFIRI cycles. Did that allow the tumor microenvironments opportunities to develop or increase resistance?
Changeup to a different, larger treatment clinic, where she was put back on FOLFOX, 3 cycles, then Lonsurf, 3.5 days into a 2nd cycle when she was told to stop for clinical trial screening. Then, as I said, all control efforts were stopped after discovering brain mets while screening for the trial in July 2018. She slipped away in October 2018.
Given the diagnosis (stage IV) she had about a 13 in 100 chance of surviving to 5 years, median survival is about 30 months from diagnosis IIRC, she was gone in less than 15. I think that medical errors reduced her chances to 0 or less than that. But where to find a doctor who will go to bat against another doctor? It's like there's a thin white labcoat line, to compare with the thin blue police line.
I have a lot more questions, here are a few:
- Given that CEA kept going up, that scans consistently showed new and growth of existing tumors but her treatment regimen was not altered to find something more efficacious in a timely fashion, I'm wondering how long until failure to act becomes deliberate withholding and an actionable medical error.
- What exactly is CEA? A tumor marker, but how reliable is it as a progression indicator? Is suddenly not testing it, repeatedly, after testing it for months, an oversight or a novel attempt to dodge the withholding & concealing liability?
- She was tested for CA 125 after mets to her ovaries caused light menstruation-like bleeding, she had been menopausal for 5 years. CA 125 was high, that was followed up with a HER2 genomic mutation test - negative.
- Before that, after cycle 3 when FOLFOX was discovered to be ineffective at the first treatment venue, genomic testing was ordered: KRAS-positive, BRAF-negative. Shouldn't that have been tested before or when she began chemo?
- She was tested for micro-satellite instability at diagnosis, PMS2, MLH1, MSH2 and MSH6 were tested and found to be normal so MSI-stable.
- She was not tested for any of the other mutations that predispose to Lynch Syndrome or for PIK3CA. What else should she have been tested for?
- Given her stage at diagnosis, when she began reporting new and chronic back pain shouldn't failure to thoroughly investigate and monitor that also be thought of as a medical error?
- How about if once finally agreeing to order an MRI, the order doesn't include contrast, the patient experiences claustrophobia in the MRI machine and the scan isn't finished?
Here, the oncologist diagnosed early-onset arthritis with no evidence of metastatis to the spine... even though an earlier scan with contrast observed unusual focal uptake in the region where she was reporting the chronic back pain and recommended following up?
How about if that same earlier scan also revealed unusual focal uptake at the base of her skull, but that wasn't "diagnosed" until a year later while screening for the clinical trial?
Does any of that sound like a medical error?
I've been doing a lot of reading this past 168 days. We were told that colon cancer mets to brain and spine were unusual, practically unheard of... my reading exposes that as a lie. While mets to those locations do not happen in a majority of cases, they still do happen often-enough in advanced cases that oncologists should be mindful and watchful, especially where patients report new, chronic pain involving bone.
One more question:
- When she was put back on an oxaliplatin-containing treatment at the second clinic, it was a smaller dose and delivered with Benadryl. Does Benadryl interfere with oxaliplatin or either of the other two ingredients in FOLFOX?
I miss her. 19 years together, our story wasn't supposed to end like this.
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