| Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Well thankfully I'm meeting my new ENT Friday - I still have regular check ups with my surgeon, and rads guy - but I have a serious lack of confidence in my RO who is my primary. So I have now got someone closer to home if I have an issue! Which I do! Okay so a few weeks ago - occassionally when I pushed my tongue up into my palate (the front area behind my two front teeth - but actually on my palate - I have a very high palate BTW. I felt almost like a bruise would feel if you press it - a mild dull pain. But it wasn't constant. - I felt up there trying to figure out if there was a sore but when pressed there would be no pain. So I figured maybe it was just my tongue pressing against my wisdom teeth which are still there but never have been removed. (impacted) anyway jump ahead to Saturday my palate felt a little swollen in the same area - enter full panic mode. - now frankly - before this point I was pressing around feeling for sore areas so didn't pay much attention to the actual texture and terrain of my palate so I'm not sure whats normal and what's not. So I borrowed a dentists mirror from my neighbor - to look around - dont ask me where she got it she's not a dentist. Anyway I took a look and it seems normal, pinkish no sores just a tiny bubble also pinkish - again no pain - its maybe a mm in size and smooth but not fluid filled it could very well be normal for my mouth as we have ridges and such on our palate... Just wondering what you all think - I have a call into my surgeon but I'm not sure if that's overkill nice I'm already seeing my ENT Friday... HO hum.  have a great day!
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 there! I hope it's nothing. I'm glad you are having it checked out.
My thought on getting opinions is to get as many as you need to make you comfortable. I know that some people can be paranoid. But, I think anyone who has had OC deserves input from the multiple treating doctors.
And...I'm with you about your RO. It will serve you better to have someone you trust--without a doubt. We couldn't trust J's RO either. But, he might have been dishonest as well as inept.
I'm sending some vibes and prayers for everything to be clear and healthy for you!
Love, Sandy xoxox
Last edited by Sandy177; 12-27-2011 01:11 AM.
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: Dec 2010 Posts: 291 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | Cheryl, It seems like I am always feeling a sore spot somewhere in my mouth, but they never seem to last. It is like the whole area is so touchy yet, and it always seems to look like there is nothing there. Also my mouth seems to change a little bit from time to time, for the better I think, part of the healing process, but a little disconcerting too as it certainly is different than it used to be. I am glad you are getting or have gotten (?) that little spot on your palate checked out. Best, Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Hi - yes! I met him he's a really good dr. He gave me a thorough examination said I'm healing great and clear... He looked at my palate said I look normal... I think it's just the way my palate is shaped.. And before this my tongue never went up that far!!! So when it discovered it it was fascinated and I terrified!  now that the ent has seen it and cleared me I'm way more relaxed!! it was just - you know those moments of fear!!!  we all have them - it also doesn't help that my tongue only has half sensation still cuz everything seems uneven in my mouth. It wasn't really sore just a tender spot but it was only ocassionally and may have had something to do with my veneers and gums in that area - bottom line dr said I'm good. Not going to argue!! He has an awesome reputation - and at some point you have to trust. Thanks ladies you are amazing have an incredible holiday season!
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | That's great to read, Cheryl. I know what you mean about all the strange sores and sensations. Even after more than two years I still get them from time to time and they always grab my attention. Like you I also only have half the sensation in my tongue, which doesn't help. (sometimes pills get lost in there...)
But wonderful that you're healing and normal!
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2011 Posts: 117 | Great News Cheryl....great way to start the New Year !
DX 12/6/10 of T3 SCC Tongue. Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear. Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Definately - I think part of this whole freak out was Christmas related - (iwas diagnosed this time last year ) not sure which date should be my on year mark - post surgery? Feb 4 or post rads - may 4 ... Either way I'm know I'm blessed to have every day... Hope your days are all filled with joy, and good health... And of course love - hugs to you all!
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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | So glad it's ok - I hope you are enjoying the holidays as much as I am (which is a LOT).
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Oct 2011 Posts: 7 "OCF Canuck" Member | "OCF Canuck" Member Joined: Oct 2011 Posts: 7 | Hi Cheryl, just caught up; so glad that you've seen your ENT & have been reassured. Diligence is a good thing! A happy beginning for the new year. Thinking of you, nick | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | :))) thanks! And happy new years to you too, in cali right now that's why I haven't been on as much! Flying home thursday am! I had made an appointment with my surgeon, before I left I may go see him just for reassurance but I'm feeling good!  hugs all!
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
| | |
Forums23 Topics18,235 Posts197,106 Members13,293 | Most Online1,788 Jan 23rd, 2025 | | | |