| | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | OP  "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Yep,
At dinner last night, i felt a slight sting on the tip of my tongue. Went to check on it this morning and there is a lump the size of small pea there. Its on the same side of my tongue as my previous cancer. It doesnt hurt at the moment when i touch it. I'm now a nervous wreck. ENT booked has booked me in this afternoon. Will see what he thinks. Why cant i even have peace of mind for a little while longer? I was just starting to relax a little bit and not worry so much. This disease is crap.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Fingers crossed for you that it is nothing Minh...your last few words says it all..crap, crap and more crap.
Great to hear you got in to see the ENT so fast..let us know when you can.
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Minh
Hope everything goes well this afternoon. What a relief you don't have to wait for an appointment.
Thinking of you
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | OP "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Thank you Gabriele and Karen. I feel so sick in the stomach that i want to throw up. My first instinct was to call my loved ones and tell them about it and now i regret it because i have everyone worrying and stressing about it as well.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I was just about to ask how it went with the ENT and realised there is a time difference.
I just checked and it is 3 hours between Sydney and Perth.
Nearly 6 pm here and going on to 3pm for you so you still have the appointment ahead of you.
You take along with you the best wishes of many here.
Good luck and easy to stay but try not to stress too much.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | OP "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Hi Gabe,
I saw my ENT yesterday afternoon and there was actually two lumps. He seems to think that its from rubbing against my teeth, but then when i had cancer reoccurence last time - he didnt think it was cancer either. However, he said given my background we should do a biopsy just in case. Results come back next thurs. I also had ulcers that have been there for awhile, which he said was normal looking and would eventuallyt disappear - so at least one bit of good news, Meanwhile, i'm trying to calm myself down although its pretty hard since there is pain there now and i dont know whether its because my ENT biopsy it or from something else. Guess we wont know until biopsy results come back. Thank you for your reply. Hope everyone is having a nice day.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | 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 | Minh, you did the right thing by going to the doc right away. It could be scar tissue. you very recently finished with chemo/radiation so it could be just an irritation. Do your best to stay active to keep your mind off it.
Worrying wont change anything so dont make yourself upset by overthinking this. Ive gone thru it 3 times and am still here to tell about it. The last time I had a biopsy, I put it out of my mind and went out and had fun with my children. I told myself I would think about it the day I was scheduled to get the biopsy results. The day before I was diagnosed with Stage IV OC, I did a 25 mile bike ride with my son on a beautiful trail along the river. Hope you are able to free your mind til you get the results.
Best wishes for good results.
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: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | OP "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Thank you Christine,
I've been trying to do that. Make the best of what you have and worry about it when it gets here. x
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Glad you had the biopsy Minh and will get the result soon. I have also had scar tissue which has been treated in various ways over the years. I saw the oral surgeon who did my original positive biopsy over and above my now 6 monthly visits at the CCC on Monday. I am seeing him for a second opinion really as I get "it looks like leukoplakia and we need to keep an eye on it". However like you the theory is also that the section between tongue and flap looks like it is rubbing on a tooth. (last tooth next to flap which i don't want to lose). I am inclined to agree with the second theory and will have a biopsy with the oral surgeon early in the new year. I guess with all that waffle above I am saying with time I am getting more relaxed however you at this early stage need to get everything that concerns you checked ASAP. Any questions let me know  Love Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | OP "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Hi Gabriele,
Guess we are never at peace unless that biopsy comes back negative. Even then, a few of the negative biopsies that i've read on here recently (that was actually positive) have me scared sh-tless!!! Sorry about my language.
I have a question for you Gabe, I have ulcers at the roof of my mouth and under my tongue for 3 weeks now and they dont seem to be getting any better at all. The ENT said the look normal and that they would eventually go away but i'm still worried. I've reduced my Fetanyl patch on the weekend to 12mg from 25mg and now i can really feel the pain. I cant even eat scambled eggs without pain. Do you know if this is normal at 3months after tx finished. My main concern is that they are not getting any better. Thank you.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | OP "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Hi Gabriele,
Guess we are never at peace unless that biopsy comes back negative. Even then, a few of the negative biopsies that i've read on here recently (that was actually positive) have me scared sh-tless!!! Sorry about my language.
I have a question for you Gabe, I have ulcers at the roof of my mouth and under my tongue for 3 weeks now and they dont seem to be getting any better at all. The ENT said the look normal and that they would eventually go away but i'm still worried. I've reduced my Fetanyl patch on the weekend to 12mg from 25mg and now i can really feel the pain. I cant even eat scambled eggs without pain. Do you know if this is normal at 2 1/2months after tx finished? My main concern is that they are not getting any better. Thank you.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I am so sorry I cannot answer your question as I suspect it is due to radiation which I did not have.
Hope someone else can jump in here with a reply to Minh.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
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