Looking for recent experience with the Galleri early detection test
I am looking for anyone who has had experience with early detection tests. I have a nodule that currently does not meet the size criteria for biopsy although I meet two other criteria. The advice is to wait 12 months and have another CT scan. I do not feel at all comfortable with this approach. Was wondering if anyone had a Galleri test in the past year. Allegedly the technology was developed with support from the Mayo Clinic. Thanks.
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My dr sent my biopsy to the castle bioscience and the results were accurate so you can ask ur dr about that and see and the risk of development
I am mid-70’s and had galleri blood test in late dec 2024. In feb 2023, I advised GI doctor administering colonoscopy that I was concerned about numerous strange “fuzzy” pencil thin bowel movements daily with a strange orange hue. GI doctor diagnosed hemorrhoids and benign polyps and pushed my next colonoscopy out 5 years. I was stilled concerned that bowel movements were not normal. I have since learned that strange recurring bowel movements are the primary symptom for colon, esophageal rectal and anal cancers which frequently go undiagnosed until later stages (especially in young people).
I gave myself Xmas gifts of full body MRI and galleri blood test in late 2024. MRI didn’t reveal any cancer. In late January 2025 galleri medical affiliates informed me that my blood was positive for anal squamous cell cancer (ascc) and hpv16 and forwarded info to my health plan doctor. Galleri diagnosis means cancer cells are sluffed into bloodstream so it may not accurately diagnose very early cancer stages. Nearly everyone is exposed to many types of HPV in their lifetime. Most people’s immune system clears virus…Mine did not clear virus. Surprisingly, anal cancer is rare but becoming more common, especially in senior women. HPV can also cause extremely painful head, neck, throat and tonsil cancers. Thankfully HPV vaccine is now available for younger people.
My health plan started biopsies, ct scans, mri’s, pet scan and biopsies in march 2025 that confirmed galleri blood test diagnosis. Unfortunately cancer progressed to regional lymph nodes (likely between feb 2023 and early 2025). I started radiation (30 rounds over 6 weeks) and 2 rounds of 5fu chemo that were completed 6/10/25. Treatment is not fun, but I will be forever grateful for galleri diagnosis while cancer is still curable.
Two year delay in diagnosis allowed local cancer to grow/spread into lymph nodes and reduced odds of full recovery with NED (no evidence of disease). Lymph node spread appears to increase risk of developing other cancers. I will get a PET Scan soon followed by periodic ct scans through my Medicare advantage health plan. I also plan to self pay for periodic galleri tests, just in case.
Regardless of my longer term outcome, I am a galleri blood test success story.
I am a Galleri failure story 🙁
The Galleri test's sensitivity is different for different types of cancer, but for pancreatic cancer (PDAC) I hear it's not the best. If positive, you probably have cancer; if not, it doesn't mean you don't.
After Whipple surgery to remove a tumor from the head of my pancreas (and also remove gall bladder and duodenum and lymph nodes), the surgeon declared me clean. Less than 4 months later, MRI and rising tumor marker (CA19-9) suggested the main tumor was coming back fast. Biopsy couldn't find it and Galleri didn't detect it. Tumor board decided to do another MRI in 6 weeks, by which time it was too late -- confirmed metastatic.
I have zero medical training, but waiting 12 months for another CT is crazy. I'd ask for 3-month intervals until you see how much the nodules are changing in that interval, to establish a "rate of change" baseline for future scans. If there's no change after two 3-month intervals, then it's probably a very slow-grower -- maybe not as big an issue to expand the watch interval after that.
But similarly, depending on where the nodules are (what type of cancer it might be), see if you can find out what tumor markers would identify it, and try to get regular blood tests for them. Example markers for different cancers are PSA, CEA, CA19-9, CA125, CA72, etc. These are usually pretty cheap, and you could repeat them every month to get your current baseline and identify changes in the future.
Thank you so much for your help! I will definitely follow your advice.
Thank you for sharing your experience. Wishing you strength and resilience. Your information was very informative. I was skeptical of Galleri. Apparently, your providers took the results seriously - thankfully.
I’ve just found out that I have the KRAS G12v and TP53 v157f biomarkers. I have stage IV mNSCLC. Read that the TP53 may be hereditary. Should I get my adult children tested?
@dave56pa
The TP53 mutations found in cancers are almost always only in the cancer (aka "somatic mutations"), not in every cell in your body where they can be passed down to your children (aka "germline mutations"). Somatic TP53 mutations are extremely common in cancers, while germline TP53 mutations are very rare. The people who interpret the DNA sequence from your tumor can often tell if there's a likelihood of a germline mutations and if so would suggest that you see a genetic counselor.
One way you might be able to tell yourself is from the "variant allele fraction (VAF)" of the mutation, which should be on the report that shows the KRAS and TP53 mutations. Often the VAF of somatic mutations, which are only in the cancer, is between 5 and 40%. This is because the specimen usually has both cancer and normal cells in it, and the mutation is only in the cancer cells. A germline mutation will usually be present at very close to 50%, or sometimes higher. So if the TP53 and KRAS mutations VAFs are both 30%, the TP53 is almost certainly only in the cancer, and you don't need to worry about your kids. If the KRAS mutations is there at 10% and the TP53 mutation at 50%, then you should go see the genetic counselor.
@val64 Thank you for the info. My oncologist was on vacation last visit so I asked the PA for a copy of the report: I’m learning as I just diagnosed in late July. mNSCLC in the lung, liver, clavicle, hips, pelvis, spine. Biopsies tissue & liquid then Radiation now Chemo.
Anyway the biomarkers are
KRAS G12V 21%
TP53 V157F 22%
TP53 R213Q 1%
ARID1A G1460Wfs31 20%
ARID1A P1583Lfs29 .1%
CCNE1 amplification Med++
“patient is free of biomarkers associated with FDA approved therapies”
So I should probably have a genetic counselor explain what all those nbrs mean in terms of my kids? As I’m well aware of what they mean to me.
No, you don't need to worry about your kids based on that report. Those percentages show that those mutations are all somatic, only in the cancer. Any mutation that you could pass down would be detected at at least 50%.