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#17375 04-18-2005 03:53 AM
Joined: Apr 2005
Posts: 44
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Joined: Apr 2005
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Hello, My Dad has had Non Hodgkin's Lymphoma (NHL)for 12 years (he's 75) with surgery, radiation and chemo with long periods of remission in between. Last week he was referred by dentist to oral surgeon who took biopsy of one of two spots on his tongueand all he knows so far is "it's malignant." He finished his most recent round of chemo for the NHL on January 28. He & Mom are in Chicago area, I'm in Kansas. He goes for another? biopsy with ENT doc on Wednesday. I am totally confused and they are so overwhelmed they don't make much sense on the phone. Wouldn't the chemo have treated the tongue cancer as well as the other lymph nodes (in his stomach) that were found in the course of NHL treatment? What docs/treatment centers are best in the Midwest? I am planning to go out there next week, but need some advance info. This is a great website, by the way, and I so appreciate having it.


Daughter of 75-yr-old Dad with tongue cancer (T3NOMO) surgery and rt neck dissec 4/27/05; completed 27 X IMRT on 7/01/05; recurrance w/ surgical removal of another SCC tumor on 10/7 (he's also nonHodgkins lymphoma survivor since 1/94)
#17376 04-18-2005 05:12 AM
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Hello Bellarte, Welcome. I am not an expert but I am going to guess that your dad has a different kind of cancer on his tongue. Most of the time it is Squamous Cell Carcinoma (SCC). It is possible that the chemo he is getting would not have any effect on SCC. The additional biopsy will provide the pathologist with a larger sample to make a good diagnosis. Sometimes they will remove all of the lesion at the same time. Lets hope this is a very early cancer which means he will be OK.

There are some folks here who keep track of the various cancer centers and locations, hopefuly they will fill you in.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#17377 04-18-2005 07:10 PM
Joined: Feb 2004
Posts: 218
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Hi Bellarte,

Sorry to hear about your dad's diagnosis. As a number of people on this board point out, it is important to have him treated at a comprehensive cancer center that is familiar with and experienced in treating oral cancer.

The National Cancer Institute has good information on how to find a doctor and treatment facility at
http://cis.nci.nih.gov/fact/7_47.htm

It also has a list of cancer centers by state at
http://www3.cancer.gov/cancercenters/centerslist.html

Best wishes and good luck in finding an appropriate treatment center. - Sheldon


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#17378 04-19-2005 11:47 PM
Joined: Apr 2005
Posts: 44
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Thanks for the replies. I drove all day yesterday and now am in Chicago with my parents. We go to the ENT today, who has the results of the biopsy done by the oral surgeon last week (after dentist referral) so we will get a more definite diagnosis/staging information. I have looked at the suggested website and fortunately Chicago area has more than one hospital with oncology/head & neck specialty/comprehensive cancer center. If anyone has had experience with: Northwestern U.; U of Chicago; Loyola U.; Fermi National Laboratory at Batavia, IL; or Advocate Lutheran General, I'd appreciate hearing your thoughts. Dad's NHL has been treated at Northwest Community Hospital, which is simply close & convenient. Right now I am disappointed that the tongue cancer diagnosis wasn't observed by the oncologist who has been treating him for for NHL 10 years, the ENT he saw 8 months ago because his ear hurt/sore throat, never paid attention to his complaint about tongue hurting. The PA at the oncology office and the nurse there both told him the tongue discomfort was just from the chemo. Maybe I'm just looking for somebody to blame? Also don't know why the PET scan he had 6 months ago didn't show it? Or the mutliple CTs. Thank God my mother dragged him to the dentist finally! And the dentist paid attention.


Daughter of 75-yr-old Dad with tongue cancer (T3NOMO) surgery and rt neck dissec 4/27/05; completed 27 X IMRT on 7/01/05; recurrance w/ surgical removal of another SCC tumor on 10/7 (he's also nonHodgkins lymphoma survivor since 1/94)

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