Early cancer detection Galleri test: Anybody using it?

I had the Galleri test recently. I came up negative. I have since had an endoscopy EUS Ultrasound to test for an Insulinoma. They did a biopsy. It came up positive for a neuroendocrine tumor. I go for a PET scan this week.

It's important to mention that Galleri is not a "test" but a "screening." False positives are not uncommon with screening technologies. Mammograms are similarly a "screening" tool. It's why so many of us need follow-up sonograms or MRI, but then do not have cancer. Choosing to use a screening instrument I have to accept that it comes with that temporary anxiety as I wait for the results. Those 2 weeks or so of worry are nothing compared with having a longer, healthier life.

I had the Galleri test last spring and got a negative result. I have not had cancer but had some symptoms that could have signaled the presence of cancer. I also had a CT scan which showed nothing but noted a couple of nodules that bear watching.
The Galleri test results were very reassuring.
As a Canadian I had to seek out both tests in the USA and pay out of pocket, as in our healthcare system my symptoms were not ‘serious’ enough to warrant anything further than an ultrasound, for which I had to wait four weeks.

I took a GRAIL test in April 2023. It came back positive for ovarian cancer. My GP ordered both an MRI and a ROMA test. MRI was clean but the CA-125 of the ROMA was just a few points high out of range at 42.
I opted for a complete hysterectomy/oophorectomy which was clean, no cancer found, except for some abnormal cells in the pelvic wash.
My CA-125 did drop to 20 after surgery.
Because no cancer was found, Grail offered a complimentary retest in July, three months after the first test. That one also came back positive for ovarian cancer.
My GP ordered a pet scan and a gastric and pelvic lymph node were noted but of no concern.
By November my CA 125 was 26, still in range, and GRAIL offered yet a third re test, which also came back positive for ovarian cancer. My CA 125 continued to rise and was out of range to 56 by February this year. The fourth complimentary GRAIL was still positive.
By then I had classic symptoms of gas and digestion issues.
Another pet scan was ordered and 8 months since the last scan, the same two lymph nodes were now deemed suspicious for metastatic disease and as well as two more.
I flew to MD Anderson and when the doctor heard GRAIL, sent me home.
I found a local gyno/oncologist who agreed to go in laparoscopically and he removed the suspicious nodes as well as my appendix, omentum and part of the peritoneum. Only two of the lymph nodes had cancer, high grade serous carcinoma stage 3a, (probably originated in a fallopian tube, but wasn’t discovered in any of the three pathologies that were performed from my earlier oophorectomy by John Muir, UCSF and Stanford) My appendix, omentum, peritoneum were all clean, the pelvic wash showed cancer.
I started frontline chemo in July and finished up in October.
I’m brca negative, hrd inconclusive and no maintenance drugs planned.
GRAIL worked for me.
The company said that I’m the only one who has taken their test this many times before finding their cancer. Doctors don’t want to believe the test. Throughout this, I visited doctors at MD Anderson, Mayo, Stanford, City of Hope, Duarte, UCSF as well as my local John Muir and no one believed me or GRAIL.
If doctors believed in GRAIL, maybe they would have taken me seriously and found my cancer before it became advanced?

@debraae
A couple of comments. Thanks for sharing. Undoubtedly, your experience will give others much to think about. Kudos to you for persisting until received an unambiguously clear cancer result in the face of doctors who were skeptics. It is so much easier to want to believe that we don’t have a health issue than to go through all of the procedures that you did …just in case. Today you are alive and well, a wonderful outcome.

A few details about Grail. It is the company that makes the Galleri test. They are pretty much one and the same. The Galleri test is one of a number of new screening tests known as liquid biopsies. These are drawing greater attention from the medical community. It went through independent medical trials at Mayo Clinic (Rochester), so by no means a fly by night, back alley concept to waste your money. It is offered through a number of regional health care systems, most prominently in the west coast states, as well as through a number of functional medical/wellness clinics throughout the USA and now also in Toronto, Canada.

I would not trust anything Grail says about the Galleri test. I have Stage IV non-Hodgkin lymphoma. My oncologist ordered the Galleri test, and it came back negative for all cancers. Let that sink in: a patient with Stage IV cancer received a clean result.

My oncologist and I were so concerned by the result that he contacted Grail and requested a retest because he believed there may have been an error in the testing process. He specifically instructed that I should not be charged for the retest. Because I was traveling, the retest was not performed until five months later. This time, the Galleri test detected my lymphoma. So according to Grail, I apparently went from having no detectable cancer to having detectable Stage IV lymphoma. The far more obvious question is why the first test failed to identify cancer that was already present.

What happened next was even worse. Despite the retest being requested because of concerns about the original result, Grail’s billing department billed me anyway and claimed too much time had passed since the first test. A company whose test misses a known Stage IV cancer should be bending over backward to investigate what went wrong. Instead, Grail’s response was to send a bill. A false negative in a Stage IV cancer patient is alarming. Refusing to stand behind the test afterward is inexcusable. Based on my experience, I would never recommend the Galleri test and would strongly question both the reliability of the product and the standards of the company behind it.