| | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | 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 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | 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
| | | | | 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 | 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!!!!
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | 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 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | 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.
| | | | | 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 | Yeah!!! Two good news's Kelly got good news too! 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
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | 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.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | 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.
| | | | | 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 | 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.
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | 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 | | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Well, how did you know that we are hoping to add to our family? All three, RO, MO, and ENT say I am good to go. However, my PCP is concerned about it coming back.
[quote=Sandy177]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
[/quote]
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Angelia,
No one wants side effects but I am happy for you that it turned out to be this rather than something more serious. Praying that you heal completely.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Hi Angelia! I think you mentioned something about it in another post...I'm kinda intuitive sometimes. I'm not that tuned in, but I do pay pretty good attention to detail! I hope it all works out. You are a wonderful mom...so the baby of the future would be one lucky little guy or girl to be part of such a lovely family. 0:)
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.
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Even though it's still a pain, I'm glad it's not a recurrence.
You've been through a lot.Its time to get on with your life & your dreams, Angelia.
(((hugs)))Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Sandy, thank you. I think I needed that today.
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: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Hey Angelia - It seems like you always come out on the good side of "news", so we're praying that continues. I am hoping that pain you have dissipates over time - the faster, the better! Keep getting those good reports. Hugs : )
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Jul 2010 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2010 Posts: 49 | Angelia those were great news! I'm sorry you had to go through all the anxiety and fear but I am glad you got it checked and it was not something more serious. Yay
My Dad:
Squamous Cell Carcinoma,Stage 2, Right side of Tongue
Dx 7/19/10
Partial glossectomy and neck dissection 8/18/10
Reocurrence: 04/2011 Base/back of Tongue right side
Surgery: Partial glossectomy, flap 06/15/2011
Rad and Chemo finished on Sept/ Oct 2011
Recovery and assimilation. Enjoying life
| | | | | Joined: Dec 2010 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 62 | I was quite tongue tied after my first two resections. My doctor told me to move my tongue all over the place and to grab the end of it with gauze and pull as hard as I could stand to. Now I can stick my tongue past my lips,almost reach the outside of my teeth on the left (right floor excised)and can roll 'r's with my tongue (rrrrruffles have rrrrridges) :-)
Give it a try, best of luck!!
Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Still having pain, and it has become more constant now. check my update on the "Coping" boards titled "taking a break".
Last edited by ChristineB; 10-04-2011 08:18 PM. Reason: clarified post, moved
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
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