| | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | Hi everyone!
My name is Patty. I am currently living in Sitka, Alaska.
About 1 1/2 years ago I noticed a ulcer under my tongue. I ignored it thinking it was just my teeth bothering that area, no big deal. Eventually it began to bother me when I ate and talked. Our visiting ENT doc helped with some dental paste. After a couple of months that seemed to irritate the area more and of course once I quit using it the area seemed to grow. The steroid had just retarded the growth.
Our visiting ENT doc preferred to send me to someone that handles a lot of head/neck cases, which was in Seattle. My husband and I flew to Seattle, had my consult and the next day had my biopsy. He also looked at my esophagus and trachea, that was all clear. The next day he told us it was SCC.
I opted to have a hemi-glossectomy and suprahyoid neck dissection. They did the PET/CT scan and that was all clear. On August 10th, I had my surgery at Swedish Medical Center and all went well. He ended up taking less than he had anticipated, basically just a good chunk off the side of my tongue. I couldn't have been happier with my care, absolutely top notch!
I just went back for my 4 week post op appointment and all my pathology reports were negative. What a relief for now.
The only problem I'm having right now is my lower teeth rubbing against my tongue. I don't think it's going to go away, but if it doesn't by my next follow up appointment he wants to do a biopsy (to make sure it's granulation tissue) and then laser the area.
I found OCF when my Mother sent me a link to Collenn Zenk Pinter's website. Her website helped her tremendously and OCF helped me learn what I was dealing with. I've learned a whole lot and really appreciate that it's there.
I'm sorry, I've written a novel. I feel embarrassed to be here, many of you have been through so much compared to me.
I really look forward to meeting all of you.
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi Patty
Just want to say what a wonderful site this is with lots of wonderful supportive people. I sure that someone will be able to offer information & support to you.
pj x
Surgery to remove tumour from on top of saliva gland 3rd August 09. Biopsy revealed adinoid cystic carcanoma. Further surgery 28th September 09 to remove saliva gland, nerve to top lip (buccal branch) & scar tissue.
Radiotherapy finished 30 Dec 2009 IXA x 33 (60gy).
| | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi Patty
Just want to say what a wonderful site this is with lots of wonderful supportive people. I sure that someone will be able to offer information & support to you.
pj x
Surgery to remove tumour from on top of saliva gland 3rd August 09. Biopsy revealed adinoid cystic carcanoma. Further surgery 28th September 09 to remove saliva gland, nerve to top lip (buccal branch) & scar tissue.
Radiotherapy finished 30 Dec 2009 IXA x 33 (60gy).
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Patty, this is one place where you can never talk too much. The more you say in words the better the description of the problems you have with OC. Welcome to our home and use it as often as needed and more. Jim
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Patty
Keep us posted on your follow up appointment on the tongue rubbing the teeth issue. You are wise to mention it to your doctor so he can track it and his taking a biopsy next time is a good plan. Don't worry about that as there is no other way for your doctor to really tell that is just granulation and it is better to be safe than sorry.
Congratulations on your negative pathology report, I was devastated when my post surgery pathology reports indicated a third recurrence without even more radiation and chemo so I can only imagine your relief. Welcome aboard and sorry you had to join our little club, friendly though it is.
charm
Last edited by Charm2017; 09-14-2009 07:37 AM. Reason: add congrat on pathology
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Patty,
Welcome and congrats on the report! I also had my surgery done in Seattle only not at Swedish but the UWMC, both have really good ENT departments, but if you ever need a second opinion go to the UW as they are ranked #6 for cancer treatment by US News and World Report and #12 for ENT in the US. Dr. Neil Futran is the head of Otolaryngology there and is top notch if you ever have the need for a second opinion.
Welcome aboard and never worry about talking too much!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | Thank you so much for the Welcome. I'm sure I'll feel right at home soon.
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Congrats! on the report. No need to feel embarassed about being here. OC is nasty stuff. We all need support not matter how big or little our procedures have been. I am glad you you got good results. Welcome!
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 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Patty,
As you can see by my signature, I had a very simlar situation to yours almost 4 1/2 years ago.
It 's good that you are getting your tongue checked out further. If it is determined that your teeth are causing the irritation, a suggestion I might make is to get a plastic night guard fabricated to cover your teeth until your tongue heals up. The guard can be worn all the time, except while you are eating.
BTW, I was in Sitka this past July and really enjoyed my time there.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | [quote=wilckdds]Hi Patty,
As you can see by my signature, I had a very simlar situation to yours almost 4 1/2 years ago.
It 's good that you are getting your tongue checked out further. If it is determined that your teeth are causing the irritation, a suggestion I might make is to get a plastic night guard fabricated to cover your teeth until your tongue heals up. The guard can be worn all the time, except while you are eating.
BTW, I was in Sitka this past July and really enjoyed my time there.
Jerry
[/quote]
I'm glad you enjoyed your time here. Sitka is definitely a beautiful part of Alaska. Hopefully it wasn't raining while you were here! LOL
Also, I see that you're in PA. Any chance that you're a Steeler's fan? LOL
I did go to the dentist before this last visit to see about possibly filing away the sharp part of my teeth (thinking that was causing the irritation), but it didn't seem like he wanted to do anything. I'm not real sure about him......just a feeling. For 1 1/2 years, this was not addressed by him or his staff. Not that I'm holding any hard feelings, I let this go for over a year before I did something.......just saying. LOL
But that is actually my concern that I forgot to address with the Doctor, what's to stop it from happening again. It's going to be the first question out of my mouth on this next visit.
See.......here I go writing a novel again! LOL
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
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