NavDx test

verito0210

I am aware of for a lot of people NavDx test is a great help but unfortunately my husband has not been lucky enough to be one of them.

He got diagnosed with HPV+ T2N1M0 squamous cell carcinoma(SCC) on his left tonsil in June 2023. He went through surgeries, 33 sessions of radiation plus 6 sessions of low dose cisplatin. He had peg tube and lost 50lbs. 

All treatment was over early October. His post treatment follow up was January this year. They found a new nodule on his left lung through PET scan but since his NavDx test result was 0, (before treatment it was 27) his doctors believed it would be just an inflammation. 

He took follow up CT early March, the nodule increased from 4mm to 7mm but his NavDx result was still negative(0). We saw two pulmonologists and all doctors said it still looked like just an inflammation.

We waited till late May and took another CT. It increased from 7mm to 1.4cm. They said it was big enough to be able to do a biopsy. He finally could undergo a needle biopsy and the result came back as P16+ SCC. It is metastasis or recurrence.

His doctors were shocked. They said they had never seen wrong results from NavDx test before. 

He didn’t do the test again in May but obviously with an active HPV+ cancer his NavDx test result still has been negative.

Kazsmiles74

This is what is happening to my husband as well. They’re monitoring. It has grown some but not enough to biopsy. A second small nodule appeared last scan… small. FNavDx has been negative. We have chalked it up to this… medicine has become so advanced and occasionally it can be more stressful waiting for them to do something about it, but they stay on top of it and catch it early and that leads to a better outcome typically. His next scan is August, we shall see if either of the nodules have increased in size.
Did your husband have any shortness of breath or other symptom that he noticed relating to the lung nodule as it increased in size? Please keep us posted.

I truly wish him and your family the best outcome. Thanks for sharing.

verito0210

https://csn.cancer.org/discussion/comment/1716183#Comment_1716183

My husband’s nodule increased 1cm in 4 months. At that point his oncologists believed it should be cancer but as they trusted NavDx they still thought it could be a primary lung cancer. Unfortunately with a biopsy turned out it is the same one with his tonsil cancer. We are devastated.

He doesn’t have any specific symptoms. Actually he says he can’t feel any better than this.

Hope your husbands nodules don’t grow.

wbcgaruss

I am praying both your husband's care team can stay ahead of their situation in every way possible and keep their cancer at bay and eventually eradicated.

I also have a small nodule on my lung and liver which are monitored and have not changed over time yet.

My sister who did not have H&N cancer but had a small nodule on her lung found during another scan was also being monitored every 6 months. It was stable and not changing for a number of years. Finally, it started growing and they decided ity was time to take action so she got radiation treatments with the CyberKnife, and that eliminated the nodule.

I have had my druthers about the NavDx test since it came out but have through research and discussion on this forum largely come to accept it as a good workable tool in this cancer fight. These examples show it is good but not perfect and cannot be overly depended on as a sole indicator of one's cancer status of treatment and I believe shows the benefits of the standard tests and scans continuing to be used as part of the whole toolbox to win this war.

Take Care, God Bless,

Russ

(NEGU) Never Ever Give Up

Kazsmiles74

https://csn.cancer.org/discussion/comment/1716192#Comment_1716192

Yes, another tool in the belt does certainly give a peace of mind. Learning to live after the whirlwind is a challenge at first. It’s definitely not like taking an antibiotic and bam boom you are good to go. It takes time to learn that even though treatment is over your body and mind needs time to recover and possibly have other long term problems/side affects or worse other potential cancers. However, you are alive and you need to make the most of each day while you can no matter the outcome. And that sometimes takes a while to find that grove. I am hoping we find that grove soon. It’s been tough to not take a full breath(sigh of relief) in almost a year.

wbcgaruss

I agree Kaz this is quite a ride emotionally and physically.

This treatment shakes you to your core. It tests you with days of radiation and chemo and ravages your body to kill the cancer inside. And as you say it is not take this or do that and you are done. Not only is the treatment brutal with many applications but then the recovery is also many days long and drawn out by the very severity and longevity of it.

For many of us this stays with you the rest of your life. Maybe not a big thing, although some have very big things to deal with. Usually, it is just small things or a combination of a few small things such as lack of saliva or some trismus or maybe some neuropathy. There are some that are greatly impacted and I want to say here I feel greatly for you people, the ones that have some of the worst of it and are left with a permanent feeding tube or trach or obturator to deal with or a severe problem with swallowing or some other problem my heart goes out to you. One thing about H&N cancer is nobody gets away free there is always some little or large leftover we carry.

This treatment and recovery will take up to a year or more including treatment and physical recovery but the emotional and psychological recovery stretches beyond that. I personally came out and recovered well or at least I thought I did but I realized I lost confidence in myself to do anything complicated. I used to be a mechanic but tackling a job of taking apart and fixing things I would normally have done seemed too challenging to me for a long time afterward but io slowly got past it a little at a time. This was my challenge but I am sure there are many other stories out there of challenges faced that we can't imagine. If you have been through the mill and faced challenges feel free to share them with the group it helps to know what others go through and we can find strength in numbers through it.

Whatever you do folks stay strong, support one another, and here's what helped me a lot, trust in God, pray a lot, and even when you are down find someone else who needs a kind word of reassurance that everything is going to work out alright because there is always someone else who is worse off than you.

Wishing You The Very Best

(NEGU) Never Ever Give Up

Take Care, God Bless,

https://www.youtube.com/watch?v=3fwYG32g5mo

Kazsmiles74

https://csn.cancer.org/discussion/comment/1716184#Comment_1716184

Thank you for your reply. I am so sorry. I hope they can get him NED soon. I know you are so busy, and if it’s not possible right now I get it. However, if you can find the time to explain and pave the way for those also(or might be) dealing with this too, It would be so appreciated. Please take your time and decide if sharing is the right thing for you and your family.

tbret

I know that my $0.02 isn't really necessary, but I am waiting for the results of my first NavDx test (sample taken 9/18). The doctors I talked to about it are, as others have said, unsure what they would do with a positive result.

Okay, so let me assure everyone here that ___I___ am completely sure what we would do with a positive result. I would find someone who would do a PET and find that stuff while it is tiny. When they say, "NavDx can indicate cancer <4 months> before it could be found by radiological exam…" Okay, fine. Great. …and? Which radiological exam is that? PETs are pretty sensitive. Or are we saying that we don't want to spend the money because we "don't want to know?"

I have no idea, none, zero, if NavDx is suitable for the initial NED call and twice a year for five years. I'm not trying to practice medicine. BUT - once that last CT or PET scan is done for the 5 year "Your cured! Go home!" visit, nobody looks anymore. My Internist doesn't even use a tongue depressor on me. The ENT asked, "What are you here for?" The answer was the oncologist wanted me followed, but as I was "cured" they didn't want to do it.

BUT BUT BUT - because I was a heavy smoker until 8 years ago, each year, regular as clockwork, I get a low-dose CT lung cancer screening. So… we can screen me for a large tumor caused by smoking, but we aren't going to look for THE most likely thing to show-up in my lungs (a recurrence of the HPV 16+ SCC)? Forgive me for my confusion, docs.

Fine, doctors… swell. Simple logic would lead one to the conclusion that either my annual lung cancer screening needs to be a bit more intensive than a low dose CT because of my prior cancer history, or we might want to see if I have any HPV+ SCC modified DNA running around in there, somewhere.

Even if the NavDx proves to be only slightly more effective than not-looking, at least there is a chance something would lead us to find the SCC while it was tiny-enough to be found. And that's the basis for my asking, repeatedly, for the NavDx test before someone finally said, "FINE! We'll do it to shut you up!"

Back in 2016 the time between my initial diagnosis and my first treatment was more than a month. I'm guessing if my NavDx test comes back positive they'll get me a PET or a CT with contrast or something trying to find a tumor with more enthusiasm than an annual lung cancer screening .

Frankly, I'd like to skip all radiation from now-on.

Anyhow, that's my thinking even if it is flawed. If there's anything to report, I'll report. I really expect the test to be negative because I have no reason to believe anything else.

Good luck to everyone. I've had seven super years since my diagnosis eight years ago. (that first year was pretty good, but not super)

Like the joke:

"My wife and I have had five wonderful years together."

"But, you've been married twelve years haven't you?"

"Yes, we have."

<it just seems unfair that COVID robbed me of a couple of them!!>

wbcgaruss

tbret, thanks for the update and commentary on medical stuff like scans and NavDx test and life in general you are very insightful.

Wishing You The Very Best

Take Care, God Bless,

Russ

goffrey

https://csn.cancer.org/discussion/comment/1718107#Comment_1718107

The NavDx test is actually more accurate than a PET scan. IF there were to be a positive result after treatment the benefit is that scans can be done more frequently to pick up where the cancer is. Just watched an interview with some top head and neck specialists that say this will eventually replace the need for PET scans for the most part. I have NO faith in PET scans. Too many false positives, too many radiologist don't read them well, too many "bad" pictures.