NavDX positive test

JohnVon
JohnVon Member Posts: 25 Member
edited February 2 in Head and Neck Cancer #1

Hello, I have HPV related head and neck cancer. I've had three surgeries....a biopsy, radical tonsillectomy and a full neck dissection. I'm currently undergoing radiation treatments. I was told after removing the tumor from my tonsil that the margins were good and the cancer was removed. I recently had a NavDX test done which detects DNA from HPV related tumors and it came back positive. This test result is post removal of the tumor from my tonsil. My surgeon and Oncologist are telling me they don't know what to do with the NavDX test result. Even though the tests are 95% accurate. I find it totally unacceptable that my doctors aren't taking that test result seriously. Does anyone have experience with the NavDX test? Thank you

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Comments

  • Quiet
    Quiet Member Posts: 4 Member

    I took the test and had a negative result after radiation/chemo.

    Some docs questioned what I would do with info, but it is nice to get some piece of mind even if not 100%. Personally, it made me less paranoid when my neck was hurting and thought I felt a bump or swollen lymph node in my neck. Even after treatment you may find yourself spiral a bit with worry on occasion.

    Maybe your docs are using it as a baseline to compare with after you complete radiation. Sometimes surgery doesn’t catch everything. Nothing is guaranteed.

    I am guessing they will continue monitoring you after your treatment is completed. You most likely will have more blood test and scans.

  • Chillg8r
    Chillg8r Member Posts: 55 Member

    I would also find it unacceptable assuming that your specific cancer is what NavDX is designed to detect. I’ve now had 4 tests done and they have tracked with what is showing up on my Pet and now Cat scans show. You know you can call NavDX and talk to the people there? Do NOT ignore it. Just my opinion……

  • LuvnTN
    LuvnTN Member Posts: 43 Member
    edited January 12 #5

    So, I had it all as well... TORS left tonsil removed (along with part of tongue base) and radical neck dissection left side in Oct of 2021. Followed by 30 radiation and 7 weekly cisplatin infusions. I have had "all clear" CT's and 3-month check ups since. Back in August of last year, I had a NavDX test done at the request of my doctor... according to him, the results were "negative". I just had my unofficial one-year check up (since completing treatments - actual date would be the 19th of Jan). That check-up went fine... scoped the back of throat, felt around... all looked good. I did, however, request another NavDX test to be done at same visit (was told recommendation is to do every 6 months). The ENT gave me an "unofficial" congrats on one year cancer free, and moved me to every 4 months for check-ups..... but, he said, let's wait for test results to make sure. Just got the call that the blood test is "positive".. the result came back an "8.0"? Don't know anything about the number. Now, I am scheduled to head back in a week for a CT w/ contrast. Here we go again! On the positive side... without the NavDX, I would be waiting around for my next 4-month check up thinking everything was hunky dory.

  • Chillg8r
    Chillg8r Member Posts: 55 Member

    My understanding is that 8 would be a very low volume of cancer so it’s great that they caught it so early. I started out just after my initial diagnosis with a score of 240 and was told before I hit that blood test result that they had caught my “cancer relatively early”. After my radiation and chemo I was tested and I had a score of 58, which made sense since my PET showed it had metastasized into my lungs. 8 months later after immunotherapy my score was 11 indicating progress matching what was showing up on the CT scans. Then 6 months later I got a score of “negative “ and then 3 months later a score of 4. ( a rollercoaster for sure) 4 is the lowest score you can get and be considered positive. 1,2 or 3 is considered indeterminate. So you, like me, have received, imo, good news but not the news we hoped for….I hope that helps. FWIW, Pembro has worked very well for me with minimal to no side effects. Great Luck!!!!

  • LuvnTN
    LuvnTN Member Posts: 43 Member

    Okay, I just got ahold of my lab results... and, according to the data:

    A NavDX score of <2 is considered "negative", 2 - 3 is "intermediate, and anything greater than 3 is "positive". A "positive" result = "greater than 95% risk of having a clinically and/or radiographically-detected recurrence".

    My first test back in August looks like it was right between a less than one... but, it not exactly zero.

  • LuvnTN
    LuvnTN Member Posts: 43 Member

    Thanks! It is indeed a roller coaster... and I never liked roller coasters as a kid. We are in the trenches, my brother. I will check out the Pembro. I'll be praying for you.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 45 Member
    edited January 13 #9

    I took this test after my first biopsy/ lymph node removal came back positive for HPV 16 squamous cell carcinoma. Pre treatment value was 95. After modified left neck dissection and TORS to remove left tonsil primary tumor I’m supposed to have it done again. I’m assuming they mean after radiation. Thanks for sharing your info.

  • JohnVon
    JohnVon Member Posts: 25 Member

    Hi Smitty. Sounds like we have the exact kind of cancer. I had the initial biopsy that came back with p16 then and neck dissection and TORS. they gave me the NavDX after surgery and it came back positive. I’m hoping that the radiation treatments I’m undergoing treat any remaining cancer. Can I ask what hospital you’re being treated? How did they explain the 95 value? I’m not familiar with that. Hope your treatments go well

  • Chillg8r
    Chillg8r Member Posts: 55 Member

    Did they see the cancer on any PET scans? My understanding is that Most of the time the radiation and chemo takes care of H/N cancers. Sometimes, as in my case, it metastasizes.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 45 Member

    JohnVon, I was not told what the initial 95 value meant. Due to the minimal extra capsular spread being less than 1mm in the one lymph node that was positive (they took 31) I was told I am a candidate for a low dose radiation de-escalation trail for neck only and not throat. After that if NavDX test comes back negative I would not need chemo. I’m being treated at the cancer center at university of Pennsylvania. Getting discharged tomorrow day 5 after TORS. and not sure when my Rads will be scheduled.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 45 Member

    For me it was worked up a positive level 2a lymph node with unknown primary tumor. A top of head to knees Pet scan after the first biopsy showed a hot spot in left tonsil and no other Mets. It was confirmed by a left tonsil biopsy done during the left neck dissection. So my surgeon recommended TORS since it was identified.

  • JohnVon
    JohnVon Member Posts: 25 Member

    Hello. It seems so many others here have been given way more info about their NavDX test results than I have from my doctors. I'm not even aware of the score or range of the test result. My doctors told me my test came back positive but they don't know what to do with the positive result. Since then they really haven't been willing to discuss the test any further. My ENT surgeon told me he actually regrets giving me the test.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 45 Member

    I have my follow up appointment on the 25th and I’ll ask more questions about it and what the numbers mean.

  • Chillg8r
    Chillg8r Member Posts: 55 Member

    I don’t know what to tell you. I’ve seen 2 teams of doctors, one from UNC Chapel Hill, and one from MUSC in Charleston, SC. Like many here I “believe” I have received state of the art care from two different NCI designated Comprehensive Cancer Centers. All of the doctors from both of my teams trust NavDX and see it as an indispensable tool. Not necessarily “the be all and end all” , but a very reliable and trustworthy test. It certainly has tracked very closely with all of my scans and the analysis derived from them. Personally, and I’m just a guy with cancer and a keyboard, I trust the NavDX test more than scans because it gets its I formation at the cellular level from our blood which goes everywhere. Scans only reveal what is significant enough that it can be seen. But both tools work in tandem as NavDX doesn’t tell you where the cancer is, just whether it exists or not and scans tell you where it is.

    Your doctor’s comments would concern me. JMO.

  • wbcgaruss
    wbcgaruss Member Posts: 1,650 Member

    I think this is fairly new technology and I can't find any info on what the test results numbers mean and I am not sure the docs know what to do with it yet. It was not available until just a few years ago. I did find interesting articles on it that you folks may want to take a look at. Always good to have info.

    Nav DX Articles


    Here's another--


    And one more--


    Wishing You All the Best

    Take Care God Bless-Russ

  • LuvnTN
    LuvnTN Member Posts: 43 Member

    I'll let you know my results since after I get my CT scan w/ contrast this Saturday. IF they do spot anything on the scan, I would say this test is pretty reliable... since I just had an "one-year-all-clear, contingent on the blood test results" ENT checkup two weeks ago.

  • big G
    big G Member Posts: 151 Member


    Hello all, thanks for the info on NavDX. This is the first I have heard of the test. I am post 4 yrs. treatments. At my 3rd year my scopes went to every 6 months instead of 3. At my April scope this year I will ask my ent/surgeon about the test. It looks like it is clinically proven but it is not FDA approved yet. Does your insurance pay for this test?

    I would for sure like to have the test. I think 95% is pretty dang reliable and will aid in early detection for sure. Thanks again.

  • huffakrl
    huffakrl Member Posts: 1 *

    My oncologist had shared that one of the difficulties with NavDX is that it picks up the recurrence quicker than their other tools can find it. To me, I’d rather know and be vigilant with my ENT and Oncologist than assuming I’m all clear. My best to you.

  • Chillg8r
    Chillg8r Member Posts: 55 Member

    That’s not a difficulty, it’s the reason it is an invaluable tool. The idea that we should be relying on trying to see a cancer cell on a scan is, frankly, primitive.