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#23843 07-21-2007 06:59 PM
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Hi,
My mother was diagnosed with squamous carcinoma of the gums. She has been in pain for over year, and the dentist kept telling her it was merely a gum infection and she just need antibiotics. Well today she told a month ago she had been diagnosed with it. I'm very concerned because her gums have been in pain so long and I don't know if the cancer has spread to other organs of her body. What questions should she be asking the doctors? What are her next steps to take? I really want to begin acting fast on what treatment plan she should be on and who to talk to, because like I said she has been in pain so long and I dont know how bad the cancer is. I'm so thankful to have found this site.

#23844 07-21-2007 07:44 PM
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Most of us didn't have any pain.

My advice would be to get a referal to a head & neck surgeon or an ENT who deals with cancer patients and preferably at a Cancer Center or Comprehensive Cancer Center. If she goes to a cancer center she will get a medical team and a complete workup of scans, lab tests, biopsy, etc. Until they know where it is exactly and the staging there isn't much we can share with you right now.

Who diagnosed her with squamous cell carcinoma?

Missed and late diagnosis are, unfortunately, pretty common around here. I'm one of them.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#23845 07-22-2007 04:01 AM
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My son was one of the ones that did have a lot of pain under his tongue for quite some time when he finally went to his dentist who referred him to an oral surgeon for a biopsy and finally to an ENT at a Comprehensive Cancer Center. If you check out the the "forum home" link at the top of this page and go to the first item "New Posters read this" link you will have a good idea of what questions to have for your doctor and for anything you might want to ask us about here. I'm so glad you found us. Lots of helpful people here.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



#23846 07-22-2007 04:32 AM
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There are several Delaware Valley residents on these boards -- based on their postings, most appear to have been treated at either Fox Chase Cancer Center or the University of Pennsylvania. You're also an easy train ride to Johns Hopkins in Baltimore or Memorial Sloan-Kettering in NYC.

Wherever you end up, you want to make sure you are treated by a TEAM of physicians from a variety of specialties who meet to discuss each case and determine a treatment plan. That's particularly important for oral cancers, which can affect many critical functions (eating, talking, etc.). All of the institutions above use that approach.

-- Leslie


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
#23847 07-22-2007 05:01 AM
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In my suggestions about places for treatment, I just realized that I assumed your mother is in Philadelphia as well. If she isn't, start with the link to cancer centers found in the "New here?" posting that Anne-Marie mentioned.

-- Leslie


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
#23848 07-22-2007 08:32 AM
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How did they find out it was SCC?

What have her docs told her about staging?

About treatment options?

Where is she being seen?


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.
#23849 07-22-2007 03:30 PM
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I am one of the members that Leslie is referring to, having been treated at Fox Chase. If your mom lives locally, this is one of the best places to be treated, as Fox Chase is a comprehensive cancer center. If you would like to speak with me about Fox Chase or anything else, send me an email with your phone number and I will get in contact with you.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#23850 07-23-2007 06:29 AM
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I am another member that Leslie is refering to and was treated both times at University of Pennsylvania. If you want to talk, email me. My Mom needs to be seen at a major cancer center that delas with Head and Neck cancers ASAP. My cancers were very different than your Mom's, but email me it you want info on HUP.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I

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