| | Joined: Jun 2013 Posts: 13 Member | OP  Member
Joined: Jun 2013 Posts: 13 | havent been on here in a long time, just had my 4th surgery they remove 1 1/2 cm off floor of mouth same of tongue, surgery 11/19/13, the pain is still unbelievable, they say i am now after 4 surgeries cancer free. my tongue is blackish brown and all surgery was on right side not entire tongue anyone have suggestions should i be worried
Tongue Lesion 7+ months,CT -, Biopsy +SCC 6/25/13 (didn't ask kind,size,stage...scared/shock)DX fond out 7/3/13, excision of tongue clear margins 7/9/13 spot found 8/13 excsision with frozen sections was SCC had clear margins,10/25 3 more spots 11/19/13 tongue and floor of mouth excision with frozen section of 3 cm
Jenn P
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Congratulations on completing your surgeries. Tell your doctor everything. I'm not sure if it is, just a guess, having no experience in this surgery, but may be a black and blue from surgery, injury from such moving the tongue, securing it during surgery, anetsesia material, even chlohexidine rinse, if taking that, can cause the the tongue to turn color black, teeth also. Best bet is to call your surgeons office, visit.
Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | It could be poor circulation, maybe bruising. Check in with your doc to have them take a look at it. Ask for stronger pain meds too. You shouldnt have to be in pain while recovering.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Ahhhhhhh... Black is not normal to me that is lack of circulation - did you have a Long surgery? replacement of the removed area? Bruising is normal but when they rebuild the tongue there is an artery put in place for circulation - this is important and if it is compromised you could lose your tongue or at least the new part. I am surprised you are at home the surgery (I had a similar one ) is quite involved I heal well a quickly and I was in for 10 days). Definitely see your dr. ASAP. Just to be on the safe side, are you being treated at a comprehensive cancer center,.. I would be surprised if you are - are they talking follow up treatment ? Sorry for all these questions but when I hear something out of the ordinary I like to clarify. Multiple recurrences in such a short time tells me they are not getting it all despite clear margins. It could very well seed or have seeded to your nodes. Pain and the color are cause for concern, go see your dr. My tongue hurt a bit post op but for the most part I wasn't in severe pain. Hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2013 Posts: 13 Member | | OP Member
Joined: Jun 2013 Posts: 13 | So it is lack of circulation, pain meds are much stronger now, and i made the decision to go with my ENT for all surgeries the last one to be honest the cancer center did want to do it, but much more aggressively and i got too freaked out, ccc wanted to take 2 1/2 cm from front to back of tongue and more off floor of mouth,
as of now i am officially cancer free, but its been a long road.
thanks
Tongue Lesion 7+ months,CT -, Biopsy +SCC 6/25/13 (didn't ask kind,size,stage...scared/shock)DX fond out 7/3/13, excision of tongue clear margins 7/9/13 spot found 8/13 excsision with frozen sections was SCC had clear margins,10/25 3 more spots 11/19/13 tongue and floor of mouth excision with frozen section of 3 cm
Jenn P
| | | | | Joined: Jun 2013 Posts: 13 Member | | OP Member
Joined: Jun 2013 Posts: 13 | oh and PET scan was- will be back in 6 months
Tongue Lesion 7+ months,CT -, Biopsy +SCC 6/25/13 (didn't ask kind,size,stage...scared/shock)DX fond out 7/3/13, excision of tongue clear margins 7/9/13 spot found 8/13 excsision with frozen sections was SCC had clear margins,10/25 3 more spots 11/19/13 tongue and floor of mouth excision with frozen section of 3 cm
Jenn P
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Okay so what are they doing about the lack of circulation? Giving you more pain meds will not solve the problem... Sorry but I used to be a nurse so this is a red flag to me.
A black tongue indicates potential tissue failure and necrosis. That can be toxic in and of itself. I know you are freaked but better to be freaked and alive. Than the alternative,
now I'm worried and I don't even know you. This cancer can be highly aggressive. And normal treatment for this is actually a neck dissection ( along with the tongue surgery ) this cancer can seed to the nodes and when it is at the microscopic level it cannot be picked up on a scan. If you have any nodes pop up hightail it back to the drs ASAP. (Lumps in the neck area = potentially cancerous nodes)
Also usually depending on the pathology report they will recommend radiation and chemo. Has any of this been discussed with you?
Best of luck
Last edited by Cheryld; 11-28-2013 12:35 PM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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