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#140323 09-20-2011 11:28 AM
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This was also posted on FB.

So, one update. Saw my PCP today and she did tell me that the right side of my neck was swollen, and also wants a sleep study since I have not been getting restfull sleep. She said let s see what your ENT says before we worry about anything. She barely even touched my neck and could tell it was swwollen, and she set it felt a little bumpy. So now I am really nervous about all this.


Second appt. down. Went to dentist today to have temp. crown looked at. Told him what my PCP said about the neck swelling, and he said, "What!!!!" He then began to feel my neck to see what she was talking about. His finger rest on a spot and said, "Does that hurt?" Nope, didn't hurt. He asked again, "This right here is not tender?" Nope not tender. He then said, "Well, good thing is that it is moving a little." What am I supposed to think of all this? See my ENT in two hours. Needless to say i am a nervous wreck since I have had two Drs whom I respect tell me my neck is swollen.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Aug 2007
Posts: 1,301
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Read it earlier and understand how stressed you must be after your previous visits. Hope all went well with the ENT Angelia.
Let us know soon?
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

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Angelia, I had hoped you would have some answers after your appointment. Dont worry yourself so much! Im pretty sure that a tumor is not something that would be movable. It would be stationary. Let us know when you find out more info. Best wishes!!!!


Christine
SCC 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 smile
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Well so my ENT told me I have developed a certain syndrome due to the radiation. I do not remember what he called it. He said that the swelling in my neck was due to the fibrosis of the muscles, and did not feel any lymph nodes. He also said the the right side of my tongue was beginning to atrophy from lack of use. I have trained my tongue to only speak with the left side. He said the right side is shrinking. All in all good appointment, but just a lot of side-effects form radiation. We never know until we get it checked. I am so relieved. He did say that we need to keep an eye on it. If the pain starts to get worse to call back and we will see what we can do to lesson the pain.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Apr 2011
Posts: 267
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Sorry you're having these issues but all in all that sounds like pretty good news.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
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Yeah!!! Two good news's Kelly got good news too! smile hugs to you!! You probably weren't sleeping well because you were so anxious - hopefully you'll sleep well tonight!! So what did he prescribe for your tongue? Tongue ups? Licking ice cream? sorry I'm being silly I'm just very relieved - not happy to hear about the fibrosis but hopefully some neck exercises will help loosen the muscles and try doing some tongue exercises too - I am forever rolling mine around etc... Hugs again! Sleep well!


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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Hi Angelia!! Congratulations!!! So...I hope it won't be long until we hear more good news--about an addition to your family! I'm sorry that radiation keeps giving you little presents in the form of discomfort and worry. But, I am so happy you are well. Sending a big hug!

Sandy
oxoxo


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Great news. You deserve it!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Congrats to the great news! Glad it turned out to be nothing more than after effects of treatment. Hope you can now relax and do everything your doc suggested.


Christine
SCC 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 smile
Joined: Jun 2009
Posts: 875
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Wonderful news, Angelia. Yep, radiation causes all sort of problems it seems, even for me after four years. I'm very happy for your good diagnosis and hope you can relax now.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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