I was wondering if anyone in the OCF user base has had any results with the experimental and clinical trial Multi Cancer Early Detection blood test ("liquid biopsy")?
They are not yet FDA approved and are available for some folks in trial form, the one trial I was almost enrolled in, requires that you be no evidence of disease for three years before you can participate, and I am only two years out. So I was disqualified by the study coordinator. I asked if I could just pay to have it done, and they referred me to another clinic in the same CCC that does it as a new kind of program they are investigating, apart from the formal clinical trial.
I've had some concerns with recurrence with small little spots and what not that my surgeon can't feel, some weird stuff on my PET/CT, kind of moderately FDG uptake on a cluster of nodes in my armpit, needle biopsy came back clean.
Recently Have some same right side neck "fullness", without any palpable lymph nodes at all in my neck, but the asymmetry was noticed by the MCED research oncologist I saw just before doing the blood draw.
There are MANY problems that are yet to be worked out with these types of test, but I am a BIG supporter of pushing the envelope of new technologies for early detection and early intervention. So a big part of doing this was the oncologist giving a big fat disclaimer on how useful these currently are. Although for head and neck cancers they show some good promise for the future. She was the first oncologist I've ever met with, as my treatment, thus far, has been completely surgical.
If I recall correctly from what she told me there are other studies that military Veterans can enroll in with regard to these kinds of trials, and get free results (there are insurance implications for some of the genetic testing and liquid biopsy testings-just have to do your homework, I am already a cancer patient, with established life insurance, if someone's life/health insurance status was "fluid" or uncertain you'd want to be aware of those considerations before genetic testing for mutations like BRCA. I should clarify too, the liquid biopsy type testing isn't looking at your genetics to see if you have mutations that make you pre-disposed to develop cancer, it's looking for actual fragments of tumor DNA. Two different kinds of testing. I had both types done during my blood draw yesterday. The personal DNA genetic mutation screening for family inherited propensities to develop cancer, that one I think maybe is FDA validated, and many insurance companies will pay for it if clinically indicated based on family history etc...
She did think follow up imagery regardless of if any cancer DNA signal is found in the "liquid biopsy" (looking for fragments of tumor DNA circulation in the blood, much more likely to be found with invasive and tumors that are just about to go metastatic then micro invasive tumors like mine, IF that was the actually root primary and I didn't have an occult primary somewhere else, highly unlikely.)
So in about three weeks, before my next surgical follow up, we should have results. If there is any concerning "signal" detected, that's going to prompt a "no stone left un-turned" kind of approach, not that I or my doctors have really left any stones un-turned thus far anyway.
We did forgo any neck dissection as my tumor was microinvasive and small. Looking at past literature there was differing opinions on doing a neck dissection for sentinal lymph node biopsy, with such small early cancers. I agreed with my surgeon that the cost/risk/benefit ratio of doing that in my case was not indicating that at all, and I think the consensus of surgeons are shifting towards that approach, with the recognition sometimes occult lymph node metastasis can occur even with small tumors caught early, albeit with increasing rarity the earlier in the progression to actual cancer.
If no "signal" is detected, still standard of care follow up appointments, now of decreasing frequency so long as the tiny little bump stays the same, and whatever is going on with my right neck muscle area goes away, and probably one final CT to see if those lymph nodes that lit on the PET have shrunk back down or at least not gotten larger, or new nodes.
So this test I agreed to pay out of pocket, as its of research interest to me, and I want to kind of push the envelope forward for emerging technologies to find cancer earlier.
Hopefully some day in the future, this technology will be perfected and people could get a wide range of cancers screened, affordably, accurately with a blood test.
If my surgeon is ever able to feel and appreciate the tiny little bump I can feel, below my tumor scar about 1 cm, and smaller than the original tumor "zit" essentially, then I'd say for sure lets get that biopsied. Or if it gets persistantly painful, or changes in any other way.
Right now there is no reference point, no target for him to excise really. Would not want to go under another surgery only to have the bump still be there, which I am sure is why my surgeon is like we'll keep an eye on this but it's not alarming to him at all.
He thinks it may just be deformation from the tongue re-shaping after scar tissue, to me it seems too far beneath the scar, but explained the internal "tissue" below the "skin" of the scar was disturbed in a wider field in larger dimensions than the resulting scar, drawing a diagram of the football shape excision and explaining internal stitches a bit. So we are watching it very closely, normally by now I'd probably only see him twice a year maybe annually soon.
No further cancer was found during the partial glossectomy, just more, mild grade this time, dysplasia. That dysplasia was also found on the surgical margins. (I wonder how often with tongue tumors dysplastic margins are found, more than half the time?)
It's just crazy as I was dotting all my i's and crossing all my t's all these years, and my brother thinks he had a recurrent torn rotator cuff in his shoulder from a work injury this past fall.
Jan 2026 he gets diagnosed small cell lung cancer, extensive stage, with bone metastasis and liver, two rounds of chemo, palliative radiation to his shoulder and spine, and in less the three months he is gone.
So feel like I am spoiled to have the level of early intervention, and diagnosis and follow up, and had all those fears of progression, and he was already in way advanced stage small cell lung cancer (one of the worst, I now know a lot more about that cancer than I did before...ugh...) when he was first diagnosed. Even from the start the therapy was not curative but intended to hopefully prolong his life and quality of life. Some form of survivor guilt or whatever. I am very fortunate.
Such is life.
Keep up the good fight folks, and lets keep pushing the envelope for new early detection, interventions, treatments, technologies and the like forward.