| Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | I find myself coming back to this thread Angelia. I know I haven't been in this cancer game long, but long enough to know that I'm really concerned for you. A lump is a lump and needs to be dealt with. Please don't wait a whole month to do something.
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) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I will not be waiting a month. I will calling my ENT in the morning, especially now that I have pain in my jaw when I eat.
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 | I was thinking about our conversation on Facebook and now reading your latest post, I want to throw out the possibility that your jaw pain could possibly be TMJ related.
With all the worrying and stress, you could be clenching and having pain with chewing is often a symptom of TMJ problems. I know you had this problem with jaw pain before and I don't remember if TMJ was ruled out.
This, of course, has no bearing on getting the biopsy of the tongue done.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | The last time I went to the ENT he did check for TMJ and did not think that was the issue, but I am wondering if it is now. I am calling this morning and probably will not get a call nack until this afternoon. I will keep you posted.
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 | Angelia,
Any word yet? I keep checking here for something from you today.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Angelina,
I've been away for a couple days and I'm just seeing this.
I would get the biopsy now....I see no reason to wait. You know your body better than anyone and if something doesn't feel right, get it taken care of.
I know what you mean about unnecessary surgery but biopsies usually are not too bad. I've always been put out..the O.R the whole 9 yards for a biopsy but it's worth it.
Please let us know how you are doing. Who are you on FB? I'll send a friend request. I'm Suzanne Gallo
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I was too mad yesterday to post anything. I called teh ENT MOnday because when i woke up Monday morning the jaw pain was such that I could barely open my mouth. That isn't goo when you are teacher, well it might be for the kids, but not the teacher. I worked it lose enough so I could talk. Eating was another story. Anyway when he nurse called me back, she said that the Dr. said it was probably just TMJ and to take Tylenol 30 minutes before I eat. Well, I was in the middle of class so I could not talk long. That afternoon I called back and asked how would I tell the difference with the ear pain? When my call was returned I got the response, "it will be hard to tell, that is why we are having you come in for frequent visits" I had hard time trying not to get upset, because I was babysitting at the time. Anyway, I am going to a Dr. on Thursday that deals with TMJ so he can rule that out. I am also in the process of looking for another opinion. The thing is my insurance is screwy and to see on oncologist I have to have preauthorization from my PCP, and she will want me to come in just to see me. More money out the door. I think it is all about the money to some of these people. The pain has subsided quite bit now, but I am noticing a dull achy ear pain when I am reading to my kids. If he was the least bit worried, why wouldn't he have done the biopsy instead of watching? UGH!!!!!!!!!
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 | I would think that it will be well worth it to find another doc. Are there any CCC's any where near you?
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | How could the Dr say it is probably anything until he checks It? That's like saying my car is running funny , What is the problem? They say to come for frequent visits, Lol do they want you to bring donuts Angelia? Get another Dr and get him to do a biopsy.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | That is what I am doing. I have Fall Break this week so tomorrow on my day off I will be contacting everyone and there dog. 
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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