#90321 02-20-2009 01:54 AM | Joined: Aug 2008 Posts: 6 Member | OP  Member
Joined: Aug 2008 Posts: 6 | Hi everyone.. It has been a long time since last post. I am T1NoMx tongue cancer 8/08, s/p partial glossectomy and partial lymph node dissection, after which the surgeon said that the nodes that were removed were enlarged and concerning, but apparently were negative for involvement. I have been going along my merry, busy way but about 2 months ago, have noticed 3 enlarged lymph nodes in the left clavical, below the area of dissection. They are non painful, 1 is much larger than the others and ther has been some swelling to the left clavical as well. MD tried prednisone to decrease swelling with no effect, if anything they are bigger now. My scheduled PET scan is coming up next week(finally)! My worry and anticipation has grown over the past days. I do not get alarmed easily over changes in my mouth or such, but this has me worried, What do y'all think? I will update on PET results when they come, Thanks for the support
42yo female,diagnosed with tongue cancer 7/08, T1N0Mx, s/p partial glossectomy,partial left neck node dissection in 8/08. I am also an Oncology RN by trade,finding an even bigger connection and empathy for those I care for.
| | | | | 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 | Are they going to do a FNA on one of the nodes or just the PET for right now? Remember it's not cancer until they confirm it with a biopsy so try and keep that in mind.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2008 Posts: 6 Member | | OP Member
Joined: Aug 2008 Posts: 6 | David, I appreciate your input. The PET is all we are doing now, what concerns me is we have waited so long to do this scan, even in the presence of enlarged nodes. I imagine if these nodes light up, then we will talk FNA and then if necessary, what all goes along with positive lymph nodes. I must admit, as non chalant as I try to be, I am scared to death, as an oncology nurse, I know way too much. Thanks for your input.
42yo female,diagnosed with tongue cancer 7/08, T1N0Mx, s/p partial glossectomy,partial left neck node dissection in 8/08. I am also an Oncology RN by trade,finding an even bigger connection and empathy for those I care for.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I can't see any valid reason to wait to do a FNA on a non painful enlarged node with your background. Even a Pet can't confirm cancer only highlight an area of concern. My Pet measured 3.9 and my ENT said USUALLY anything below 4.0 is not considered a likely cancer location. Kinda like "almost pregnant"?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | David's right -- Not to be second-guessing the Doc too much, but what if the nodes measure 3.9? Will he just ignore them? How much bigger do they have to be before he will do a biopsy to be sure what they are...
BTW, is this just a PET or a PET/CT combined, the first to light the way and the second to examine the illuminations.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Aug 2008 Posts: 6 Member | | OP Member
Joined: Aug 2008 Posts: 6 | I know my tongue measured a 7 on the PET and it was considered an invasive endophylic tumor. What scared me was that I had a dental appointment 1 month prior to finding a "junior mint" size tumor on my tongue, and there was nothing there! So this tumor came up very quickly and aggressively. Still no word on my PET/CT today(monday) It was done Thursday... I will give a call if I dont hear today. Thanks for everyone's support.
42yo female,diagnosed with tongue cancer 7/08, T1N0Mx, s/p partial glossectomy,partial left neck node dissection in 8/08. I am also an Oncology RN by trade,finding an even bigger connection and empathy for those I care for.
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