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#90514 02-22-2009 11:25 PM
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My sister went to an ENT specialist friday and the doc said he didnt like the way a sore on her tongue looked so he biopsied it right there in his office and told her that he was 50% sure its an early cancer. IF this is cancer I guess surgery is next.....then what? Do they give chemo? Radiation? How does one talk or eat with part of their tongue cut away?

LoneWolf #90516 02-22-2009 11:32 PM
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Hi
you will find all the answers to your questions by using the search engines attached to the home page of this forum.Once you have read all the information available i would then suggest youcome back with more specific questions.Of course most people here will tell you it ain't cancer until someone says it is,and it is difficult to predict what treatment your sister may need.
For a sore on the tongue we need to know a)is it cancer?,b)is the primary?c)what stage is it?all these factors will decide the treatment plan,and of course make sure she is seen in a comprehensive cancer centre.

good luck

liz

Last edited by Cookey; 02-22-2009 11:33 PM.

Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #90519 02-23-2009 04:34 AM
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It's hard to answer questions that haven't been posed yet. Ask these same ones after a diagnosis and the answers will come.


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
EzJim #90535 02-23-2009 11:25 AM
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Second the motion to have her case reviewed (aka second opinion) at a CCC if the biopsy comes back positive for cancer. They will have a weekly tumor board with number of disciplines represented (Surgeon, radiological oncologist, medical oncologist, dental oncologist, etc.,) and they will have likely seen more cancer in a year than the ENT has seen in a lifetime, plus he is only one guy and has one perspective.

If you learn nothing else from this or any other source about oral cancer, getting her case to a CCC is the single most important thing to learn!

Depending on what her situation shapes up to be, they may even just recommend that the ENT go ahead and do surgery or if something like radiation is recommended and there is a lot of travel involved (Can be seven weeks for the usual round of nuking), your sister may consider having that done closer to home -- Alternatively, many CCC's know of or operate low-cost housing for patient and caregiver near the facility).

CCC's are so designated by the National Cancer Institute and must meet the standards established by NCI. Here's a list from this Forum of CCC's by state -- There is one in Madison WI at UW:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

I know it's too soon to tell and be specific, but some of the questions you asked can be difficult to search (BTW, search the forum by using the Search application button on the top tool bar).

I have had some chunks of my tongue cut out (aka partial glossectomy), followed by radiation, and once the effects of the radiation had mostly worn off, I was able to eat as usual although my taste buds and saliva mechanisms were damaged, so I had to carry water with me and drink a lot with meals.

I had more cancer and this time they took a substantial portion of my tongue, replacing it with tissue from my wrist to construct a 'free flap' new tongue -- Being sewed to the floor of my mouth, it didn't work as good as the original, so my eating changed but I was still able to eat with friends, although not talk as much (A bit of a hardship with me!).

Still more cancer involved total removal of my tongue (except about 5%, containing some taste buds) -- I am still recovering from that surgery, plus the front part of the new flap (this time from my thigh) and the front part of that didn't take (insufficient blood supply), so the jury is still out on how well I will be able to eat (currently getting my nourishment via liquid food through a feeding tube in stomach wall) -- I may have to make one of those $200 spoons discussed in another thread <grinz>.

Try searching "glossectomy spoon" for practice.

Some folks have had even more work done, but most here have needed far less. Since her ENT said it looked like an early cancer, her treatments may involve less and will most likely be more effective -- Early detection is an important key to fighting oral cancer.



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.
Pete D #90541 02-23-2009 12:14 PM
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I agree with Pete, make sure it absolutely is cancer first. If confirmed, I would also highly recommend getting her treatment at the Carbone Center at UW-Madison. Wish we had done this right away.

Dr. Hartig is the H&N specialist there my Dad is working with now and they have been great. Much better coordination with the full compliment of specialists that all work together as a team rather than with the separate ENT, RO, and OC that we experienced with his first go-round.


Dad Age 72: Dx 2/07 SCC BOT Right T2N2BM0 Stage IVa
2.5cm prim partial gloss margins not clear w/right neck dissect 12 nodes, 4+ w/ex-cap spread 2/28/07
30xIMRT(60Gy)-5xCarboplatin+Taxol 4-5/07
Recur SCC Pharynx Dx 2/09 w/possible mets to lungs
Lung biops scheduled for March 26, 2009
cxl1 #90572 02-23-2009 05:55 PM
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Hi LoneWolf,

I have tongue cancer so I can share my story with you. I'll will give you the shortened version of course:)

I had a sore spot on my tongue for a while that felt like an ulcer. When it was biopsied by an oral surgeon it showed severe dysplasia. Then I had surgery and it was cancer. By surgery is called a partial glosssectomy. They remove some of the tongue and it hurts, I can't lie. I have had 3 more since then. My last was just 2/11/09 and I'm recovering now. Even after all of them I don't have any problems with my speech or eating once the recovery is over.

I hope this gives you an idea of what can happen. As I'm sure you already suspect, there are so many factors that make everyone's experience a little bit different.

Good luck and keep us posted.
Suzanne


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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How long was your recovery period? How long did it hurt and what did you do for the pain?


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