| | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | I too fell into the non-smoker, casual drinker, HPV- category. My RO at Beth Israel did say that there are false negatives and he thought there was a good posibility that I fell into that. I also had a false negative result from my fine needle aspiration from my (malignant) lymph node. I don't have great trust in lab-work results.
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | FNB's are not a good thing to go on just by themselves, as you are taking a guess in that big lymph node if you are actually sucking up cells from the actual malignant area. That's why they like to poke you so many times with the needle to gather from as many spots as possible.... but still it is a hit and miss situation, and an imperfect technique.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Rob, my initial FNA was also negative.(hmm... now that I type it I see it isn't FNB; will assume we're speaking about the same thing as there was definitely a FN involved, and they did a B!)
It wasn't until I had surgery for the supposed cyst and they biopsied it (again) that they found the cancer. Interestingly, the ENT who did the first FNA (I had to find a different surgeon after that because the first guy didn't take my insurance) said that because the "cyst" was filled with fluid that meant it was a good sign as to negative for cancer. Oh well. When my actual surgeon did the "cyst" removal, he later told me he knew it was SCC as soon as he saw it.
So it goes!
D2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Nov 2010 Posts: 36 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 36 | Bring on the moments, we all need to vent and let the steam escape from our ears!!
If you use mouthwash,,stop,,it causes oral cancer. sigh, just brush and floss and drink lots of water to keep smelly bacteria levels at bay.
55 yrs, Female, smoked for 4 yrs 35 yrs. ago, SCC right underside tongue and floor of mouth, laser surgery took 1/3 tongue Aug 2010, 3 weeks later in Sept right neck dissection 40 nodes removed with 1microscopic spot in one node. No chemo or radiation.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Non alcoholic mouthwashes like Biotene are fine.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2010 Posts: 36 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 36 | I stand corrected, I should have been specific and said mouthwash with alcohol. Thankyou!
55 yrs, Female, smoked for 4 yrs 35 yrs. ago, SCC right underside tongue and floor of mouth, laser surgery took 1/3 tongue Aug 2010, 3 weeks later in Sept right neck dissection 40 nodes removed with 1microscopic spot in one node. No chemo or radiation.
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