| Joined: Jun 2011 Posts: 9 Member | OP Member Joined: Jun 2011 Posts: 9 | I am curious if anyone knows how long HPV tonsil and base of tongue cancer takes to develop? That is, when the cancer starts growing, how quickly does it grow before becoming noticeable, showing symptoms? I have read of some people mentioning their doctors telling them how long they thought their cancer had been growing... I am NOT asking how long HPV takes to develop into throat cancer as I have read the many discussions on that can of worms... | | | | 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 | More often than not or should I say it's not uncommon for the HPV+ Primary in the BOT or tonsils to be very small but break off and spread to a node or two and then develop in the node(s) and that is the discovery point. In my case I noticed a lump in my neck and by the time I mentioned it to my wife with the ensuing screams of "you're an idiot" and subsequent doctor visits I was told it probably had taken 6 months to develop.
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: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Oh David. She should have screamed "you're a man"... it seems it takes you guys a little while to mention it and get to the doctor to have it checked out. Not to say that the entire gender is idiotic. I think the distinction of "idiot" should be applied on an individual basis. From what I've read, you are no idiot but you definitely are a man. But then again, wives tend to know their husbands better than anyone else...okay, I'll quit while I'm behind.  Back to the question.... When J was diagnosed (misdiagnosed?), it was based on a lymph node biopsy because he had no noticeable tumor. J (who waited 9 months to go to the doctor) presented with a swollen node on the left side of his neck. The FNA was negative. But the excisional BX, we were told, was positive. (It is my thought that the misdiagnosis stemmed from a positive p16 for HPV and a cyst that tends to look like SCC.) The positive DX for SCC HN led to a diagnostic tonsillectomy and random oral cavity BX's which were all negative. No primary tumor was located. And, since squamous cells do not appear in lymph nodes unless it is either a metastases from a primary tumor of squamous origin or is a branchial cleft cyst, the cancer did not originate in the lymph node. So, it was assumed that J's tumor either "resolved" on its own or it was too small to be detected. The only other diagnostic option is to have J undergo microsurgical biopsies of his BOT and what is left of his tonsil area. There is still a strong possibility that the primary won't be found. Let me reiterate--J never had any other symptom besides the swollen spot on his neck. There was no pain, there wasn't any difficulty talking, eating, breathing, etc. Nothing. Nothing appeared abnormal when the ENT scoped him. His labs were normal. In fact, the ENT did not have any feeling that it was cancer. He was shocked when the path report came back positive. But, this pattern is widely recognized as within the realm of normal for HPV related SCC HN. The path at the CCC where J had his slides evaluated also said as much...but, they DX'd a BCC not an SCC. Since his BX, J has no swelling and no discomfort. Just lots of anger that he had major surgery, teeth pulled, radiation, chemo, and the scare of his life presumably for nothing. He'll get an updated DX soon. Curiously, J's ENT mentioned that the pathologist suggested it could be lymphoma...!...scary. I'm sure you all know lymphoma comes from lymph cells. SCC comes from squamous cells. Kittens come from cats. You get my point. Both the ENT and I were mystified by what the pathologist said. I was not a bit confident in his abilities from that day forward.
Last edited by Sandy177; 06-16-2011 06:51 PM. Reason: syntax
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | I have no wife so I have to be my own idiot. Within a few days of noticing a lump in my neck - the first and only symptom - I was at my doc's office. No idea how long the primary had been in there, although that's a good question to ask my oncologist next time I see her.
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | So, D2, you have no warden...uh, I mean...no wife? I suppose that proves you are no idiot! See, you noticed something and within days (not weeks or months) you saw your doctor. Wow! My theory is that married men would rather wait for the lump to resolve and hope they can avoid telling the wife about it. We wives lean toward the dramatic. So, gnashing of teeth and rending of cloth are behaviors the hubby can bank on--and wishes to sidestep if at all possible. JMHO.
I've been fired a couple of times for being an overcaregiver. I suppose it's a gender-specific job related problem.
I wonder if the tumor is occult and too small to find, does it matter much regarding mets to nodes? Do larger, identifiable tumors cast off more cells? J's DX said he had bilateral mets (the RO assumed so from the PET--no biopsy of the right side.) And, TX was planned based on the TxN2c standard of care. Therefore, no neck dissection. But he was radiated from tip of nose to spine and down to collar bone since the tumor was occult. David2, was that your experience with rads? (I hope I didn't just hi-jack the post!)
Thanks,
Sandy
Last edited by Sandy177; 06-17-2011 10:57 PM. Reason: specifying a David
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Sandy, on here you really do have to keep your Davids like the proverbial ducks in a row.
I don't have an answer in re the relationship of tumor size and type to node mets. Maybe someone more knowledgeable can chime in. My RO did tell me - and I believe I discussed this in a thread some months back - that these occult tumors tend to burn themselves out after they've metastasized. My terminology clearly isn't precise on this, which sparked the discussion back then. Someday I'll get her to elaborate further and will comment then.
I too had the mets only to one side. But in my case surgery was recommended. Since the spread was only to my submandibular nodes I then had bi-lateral radiation from about my jawline to my collarbone.
Think I'll respond more fully in a PM so the thread does indeed stay on track!
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Thanks, David to the 2nd power. I really appreciated your PM. I will have more questions about radiation for sure...if/when he gets a DX.
Yes, there are virtually rows of Davids to keep straight here!
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | 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 | Only ONE from my perspective.
And what's this "to the 2nd power" crap? I may have to use my "powers" to delete that post! lol
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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | very small (2mm) tumors in the tonsils can spin off daughter cels that end up very rapidly in the nodes because the lymphoid tissue has no basement membrane to stop them, and they just move on down through the normal lymph drainage passageways. Away from these lymph passageways, lesions have to be around longer to spin off mets to the nodes, so they are bigger. I put up a long winded post a while back about this when the results of the study we did with Hopkins came in about the reason there are so many positive lymph nodes with occult oral environments. Turns out that yes the mouth was occult, but when the tonsillectomies that were performed (on normal looking tonsils bilaterally) they found 2 and 3 mm cancers deep in the tonsil - nothing to see on the surface.
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: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | @ David SEE PEA AYE: I forgot you have those mystical red-letter powers! Since David2 had referred to himself once as David of the second variety, I thought I'd be a little playful.  From now on, I will mind my "D's" and "2's". All the Davids here are quite special.  But, you are entitled to be the alpha-david since you are endowed with special powers earned here on the forum. @Brian: I will look for the information you posted. Long winded? Naw. You are thorough in your explanations and it is greatly appreciated. If it turns out to be SCC, I really wish they had found it in his tonsils...for one reason, he'd be through with TX by now. I'm afraid it may now be a T#N2cM#.
Last edited by Sandy177; 06-22-2011 04:43 AM. Reason: not enough zzzzzzzzz's
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | |
Forums23 Topics18,249 Posts197,138 Members13,323 | Most Online1,788 Jan 23rd, 2025 | | | |