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#38198 02-09-2005 06:34 PM
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jnjh Offline OP
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My wife was diagnosed w/ SCC on the lower back portion of her tongue 2 1/2 years ago (when our daughter was 8 months old). Her ENT removed the cancer and lymph nodes from that side of the neck. The nodes came back clear so no other treatment was done. She goes to her ENT monthly for check ups. We had our 2nd child 3 months ago and have had 2 biopsies in the last 3 months. Just got word that this last one came back 'abnornmal' but not cancerous? Her ENT wants to excize tissue again and do a graft w/ tissue from her cheek (because skin from the hip doesn't last as long in the mouth). Just wondering if anyone has experienced this, how it went and was any other treatment (radiation, chemo, etc) done. Her ENT says that type of treatment isn't necessary because the cancer isn't back (but she hasn't had any type of scan - if that matters or not)? So many questions - I'm going insane!

#38199 02-10-2005 02:13 AM
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Hello jnjh,

Welcome to this site. You'll find a great deal of information here from people who have had experiences similar to your wife's.

You didn't mention what stage her initial tumor was, or how much of her tongue was removed -- that would be helpful for us to know. It sounds as though she has not been treated at a major cancer center, and if she hasn't, I would strongly urge that she get to one soon (there is a list of them elsewhere on this site, under Other Resources). This disease can be very aggressive, and in many cases it cannot be effectively treated single-handedly by an ENT.

To give you an example -- when my initial biopsy tested positive for cancer, my surgeon worked in coordination with a head and neck cancer team and did not undertake ANY surgery until he had full scan results and the input of the entire team as to how best to proceed. While the surgical team felt confident that they had clean margins, and there was no lymph node involvement, the tumor showed signs of aggressiveness that caused my doctors to proceed with radiation within a few weeks after surgery. I wondered at the time if they were going overboard with the treatment, but I can't argue with the long-term results, and from what I've learned on this site, it's clear that this disease is best treated early and comprehensively.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#38200 02-10-2005 08:25 AM
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Hi jnjh
If the abnormal area is not invasive then the option of removal and graft is a good one as the alternative is usually 'watch and wait' so they are hitting this hard right from the start. It's quite usual to take a graft from the inside of the mouth if the area to be treated is not to large...
Sunshine...love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#38201 02-10-2005 04:52 PM
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jnjh Offline OP
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Her doctor never mentioned a 'stage' that her cancer was in, only that it had been caught early enough that it hadn't spread anywhere else. When we asked about doing a some type of scan to confirm that it wasn't elsewhere he said he was from the old school and didn't really use scans - ?
Should I insist on a scan - will it detect it? If so what type of scan.
The area of tongue that was removed was on the side/bottom at the very back and was about 2" long and 1 1/2" wide. He's wanting to do a graft since the cells growing back are unhealthy.
In my previous post I related the time frames to our children because he is thinking possibly that the hormone changes during pregnancy could be the cause, since she's doesn't smoke/drink.
Thanks for your responses - this board is a very helpful information source!

#38202 02-10-2005 05:42 PM
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A lot of ENT's don't rely on scans. They consider direct visualization and palpation to be the gold standard. My own head & neck surgeon is of that mindset. However, like Cathy suggested in her post, I have a team and the other team members, the oncologist and radiation oncologist order the scans. Pre Tx I had a PET, MRI & a CT. Mid Tx I had a CT. Post Tx I have had 4 MRI's over the last 2 years. Remember that the scan is not always definitive either - it is just a piece of the diagnostic data.

Did she ever see a radiation oncologist?

I have to agree with Cathy about getting followup at a comprehensive cancer center, especially since tongue cancers can be pretty aggressive.


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)
#38203 02-11-2005 02:00 AM
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jnjh, sorry this thing is back in question. I second the above comments, get a second opinion at a comprehensive cancer center. It is worth whatever the cost in time or money is, if for no other reason than the peace of mind that you have done all you can to identify and correct any problem that exists. This oral cancer disease is very aggressive and can recur at its own time. This doesn't mean that that is what your wife's issue is, but have a team of experts check it out. I have had many CT, PET, MRI scans during my pre and post treatment exams. As Gary said, they are another weapon in the war bag to find and attack this disease. Please use them.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#38204 02-11-2005 06:08 PM
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jnjh Offline OP
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Thanks for the replies.
She has never seen an oncologist - her ENT has said he would refer when we asked, but that it wasn't necessary. She went to her General Pract. and he tried treating it as a canker sore - she then went to her dentist, who did a small biopsy that came back cancerous so he refered her to an oral surgeon in Amarillo, TX (closest "big" town) who did another larger biopsy, who refered her on to the ENT who did her partial glossectomy and lymph node removal - which came back w/ a clear margin and negative lymph. She has since followed up w/ monthly check-ups for 2 1/2 years, which brings us to today.
Do we need to have a referal to get to a Comprehensive C.C.? Thanks again for the information.

#38205 02-11-2005 08:33 PM
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I would call MD Anderson first thing in the morning and have them review this case. From what you stated in your above post I would have very little confidence in the current medical team. I would be going insane too! They have a saying that the definition of insanity is to do the same thing over and over and expect a different outcome.

The GP didn't surprise me - A lot of us wasted precious time taking antibiotics that didn't do anything. The general rule is if there is no response within 2 weeks it's time to see a specialist. But the referal to him from the ENT sure did (it's usually always the other way araound). The flags are going up! These are all the wrong people! She should be seeing a head & neck surgeon, experienced in throat cancer cases, an oncologist and a radiation oncologist. The 3 of them, as a team, can map out a suitable treatment plan.

I wouldn't have picked an oral surgeon for my first choice for an accurate diagnosis either...and why didn't she just see her current ENT for biopsy? The current ENT stating that he would refer to an Onocologist if asked "but that wasn't necessary" would have me heading for the exit. Excising tissue and a skin graft even though the "cancer isn't back" seems a bit drastic also.

Cancer is a very unforgiving disease it doesn't often give second chances to get it right. This is why we always strongly recommend going to a comprehensive cancer center. There is a list of them in the NCI and NCCN resources elsewhere on the site.


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)

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