| Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2008 Posts: 309 | Hi David, the pathology report said squamous cell carcinoma at tooth site #1 - they have not given me a stage yet I suspect that will come after surgery? will be asking doc.
the ct scan (taken in may way prior to them thinking cancer) said erosive change involving the posterior aspect of the right maxilla. soft tissue density with heterogeneous enhancement measuring app. 2.1 CM in greatest diameter. Uncertain whether this mass represents mass or granulation tissue. density measurements are greater than expected for phlegmon or abscess. chronic inflammatory change and osteomyelitis are not excluded. lower density material within the adjacent maxillary antrum likely representing mucosal thickening.
Rita - Age 44 wife, mother of 4 - ages 3,16,21,24 & grandma to 1 (R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | 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 | Have they considered the nodal areas on both sides of your neck which is where SCC normals drains to outside the oral cavity? I would want that area Pet scanned at a minimum. I would also want my chest cavity scanned. This is your life and this cancer is not something to treat litely. Were you a tobacco user?
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: Jun 2008 Posts: 309 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2008 Posts: 309 | according to the staging thing I see on this site this would be my guess according to the medical records I have copies of - (let's see if i am right  Stage II / T2N0M0 / G2 (why do they have to be so technical LOL)
Rita - Age 44 wife, mother of 4 - ages 3,16,21,24 & grandma to 1 (R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | [quote=azcallin](why do they have to be so technical LOL) [/quote] Lets them charge more  Can't baffle you with BS, so they blind ya with science! 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2008 Posts: 309 | ROFL - Thanks, Kevin! I needed that laugh this morning! David : My Dr at UW said he did not suspect any node involvement but only did checkup with feeling with his hands at this point (unless he could see nodes on CT with contrast? but I think that was only the neck shown) but he has not seemed concerned about them. He said he felt this was caught early and is quite localized. I will ask him about doing a PET scan when I check in Friday for another CT scan before they start surgery. I agree, I don't want to take chances. I had an endoscopy done in 07 with biopsies which was all normal but they did that because I was having a hard time swallowing and it got worse and worse to where i didnt feel i could even swallow water to take my meds... they did mri, endoscopy with biopsies and barium xrays and diagnosed me with severe acute acid reflux and put me on nexium double normal dose. this helped some but then my other doctor treated me for thrush and 99% of symptoms were gone within days. (long term prednisone use caused the thrush she said) upon reading symptoms of what i am now facing i am wondering if the two are more related than said so far? don't know ... but yet those symptoms of problems swallowing have never gotten bad again ... occassionally rice or something will "feel" stuck if my throat is not moist enough or take more than a tiny bite but for the most part all of those symptoms have been unnoticed since so i am hoping the two are not related and that the localized problems found are all there is to find ... oh how i hate the unknowns and the what ifs - this is why we don't dwell on them I guess, right? POSITIVE ATTITUDE until we have something to worry about and then one baby step at a time. Thanks for your post I will definitely speak with him about that PET. oh and yes I did smoke - for 25 yrs. Don't anymore but it may well be a factor, though I was not the "heavy" smoker they say is the most common victim ... they said I was not a 'likely' candidate... but hey that is how life works
Rita - Age 44 wife, mother of 4 - ages 3,16,21,24 & grandma to 1 (R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | 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 | Then I would also ask for my cells to be tested for HPV. It's not clear what causes the cells to go malignant in the first place but if a person uses tobacco then it is assumed caused by tobacco. If a person never smoked they will sometimes get tested for HPV and if it comes back positive then HPV is presumed to be the cause and recent studies have shown a distinct biological difference between the two SCC cells. That same study concluded that HPV+ SCC responds better to treatment and (therefore) also has a lesser chance of reoccurrance. There is also a small percentage of SCC that isn't associated with either including the ones associated with eating betel nuts. Since I hadn't smoked for 30 plus years I pressed to find out how I got this cancer and I felt better knowing than wondering.
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: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | No smoking for me for 37 years before DX.....no HPV (insisted on being tested)..and no betel nuts either. I wish that you could contact your dr. with your concerns and ask for a PET/CT several days before your surgery. Isn't your surgery to take place THIS Friday? I wouldn't be comfortable going into surgery without a bit more clarity about what my problem is. The PET/CT is a full-body scan, and it is wonderfully reassuring. XO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2008 Posts: 309 | Yes surgery is Friday - He is doing the new CT scan at 7 am and said he will look it over and go over it with me prior to surgery.
I will ask him about the PET scan when I call in as well.
So much to absorb ... and still so much to get ready for my kiddos before I go in so my sister doesn't have a hard time tending to things with me out of commission.
Rita - Age 44 wife, mother of 4 - ages 3,16,21,24 & grandma to 1 (R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have the same idea about the Endoscopys I have had over the yeras. I have barretts esophagus and have had The Nissen Fundaplication where the Dr wraps 1/3 of your stomache arpound your esophagus. This was done every 3 months and sometime 6 mo. Strange I ended up with OC as well as Barretts. It makes me wonder if there is a connection between the 2. Good luck with your surgery and with the great attitude, you will win. This from one winner to another. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | Jim, there is not a connection. The cellular change which causes Barrett's (which by the way is precanerous condition and not cancer) is caused by repeated damage to the lining of the esophagus by the acids in your stomach, and is in actuality a defense mechanism to prevent further damage. The cancer that is associated with Barrett's is adenocarcinoma predominantly... spoken by someone who has been down this path. GERD, proton pump inhibitors, fundoplycation, Barrett's, adenocarcinoma, surgical removal, etc.
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. | | |
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