Cancer surprise x 2 and in 18 years, no change in testing

Posted by Jane Mc @jane, Dec 30, 2024

In 2008 I woke up to a surprised surgeon who had assured me the lump on my ovary was likely benign but was cancer. The CA-125 was marginally elevated, and the CT was very inconclusive, however, I was assured before the procedure that I had no risk factors for it to be CA. Five years of continued symptoms, but inconclusive reports and I was given the go(-away) that the continued symptoms were just after-effects of having abdominal surgery. Fast forward to 2017, following a divorce the symptoms seemed more extreme, and my GP decided to do another CA-125 and CT scan. The CA-125 was only slightly elevated and the CT, again, showed abnormality they were likening to scar tissue. An ultrasound, and an MRI later, they decided something was constricting my ureter, artery and vein and was stuck to my bladder, so surgery was scheduled with the assurance that it was, again, likely NOT CA. I woke up to another surprised surgeon as I was told I had an endometrioid carcinoma. It's now 8 years later, and they still run the same CA-125 and CT for annual re-checks. With all the bragging that's done about advancements in CA detection, why are the same tests repeated that were done 18 years ago and that were not conclusive at all to begin with? Getting discouraged and a bit put-off that even though symptoms continue to get worse, the same tests are the ONLY tests offered as annual screening. To be continually told that it's just the scar tissue causing the problems despite the two surprise diagnoses, makes it seem like a crapshoot that I was diagnosed at all in the first place. Where's all this new breakthrough stuff that research has been talking about and why isn't it implemented into patient care after 17 years. Thoughts...?

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val64 | @val64 | Dec 30, 2024

That does sound really frustrating. I'm not a doctor, but have some thoughts. Cost/insurance could be an issue for all, and it is also possible that they aren't realistic for your cancer type (which seems to be slow-growing).

One is trying to ask for a PET scan. I don't know if the type of cancer you have had is likely to show up on a PET scan, but sometimes a PET scan can distinguish between a cancer and scar tissue. I've been told that insurance tends not to approve PET scans, at least for endometrial cancers (what I have).

Another is the Signatera test from the company Natera. They would need a sample of your 2017 tumor so that they can sequence its DNA. They then develop a personalized blood test that looks for DNA mutations found in your tumor. Sometimes DNA released from the tumor circulates in your blood. Being able to detect the cancer mutation suggests the cancer is still there. But a slow-growing tumor may not release much DNA, so this test might not detect it. I doubt insurance would pay.

If you're really worried, another conceivable possibility would be a CT-guided needle biopsy of the "scar tissue." It would have to be in a place that's accessible. And insurance would probably balk.

There have been lots of cancer breakthroughs in the last 17 years, but unfortunately they have not been in detecting very low levels of cancer cells. People are trying, but it's actually really hard. Tests either have significant levels of false negatives (like Signatera) or they have false positives, which would lead to unnecessary worry and treatment.

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