| | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Well, I went to see my ENT again today. He said that we will watch the lump on the side of my tongue. He did not want to do anything right away because my ear pain has eased up a lot. He also said that the pain is probably referral pain from that lump. I go back in four weeks. He said that if it gets worse before then call and we will schedule surgery. If is the same in four weeks and hasn't gotten better then we will schedule surgery at my next appointment to take out the lump and send it off. Anyway, he said was a little bit concerned because of my history and that I am having some of the same symptoms, but kept pointing out that I did have a clear PET scan. Anyway, I have no idea what to think at the moment. Should I be worried? Should I have said let's take it out now? My husband wants another PET scan before the surgery. I told him that the Dr. said that the only way to know if it is cancer is through a biopsy. He did say that PET scans ar enot 100% reliable and neither are MRIs. He would rather have a negative biopsy then something growing my mouth. Anyway, I guess I will know more in 4 weeks.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Angelia, I saw my ENT yesterday and he said he can see where I hurt. That is beside the exposed bone. He said it is sacr tissue and radiation burns. I really think he turned the burns from low heat to hi. LOL. I hurt much more today than normal.This pain laughs at Percs and Magic Mouth Wash.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Biopsy is the gold standard and the only way to be 100% sure if a lump is cancerous. I agree that MRI's and PET scans are not 100% reliable.
In light of him making these statements, I don't understand why he is waiting 4 weeks.
IMHO, I wouldn't want to wait 4 weeks.
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: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | Since the biopsy is a relatively minor procedure, I agree with Jerry. This should have a yes or no, black and white answer as to what it is determined by biopsy and pathology report now, not a month from now. The down side to doing the biopsy now doesn't exist.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | I agree. I would want to do a biopsy now instead of waiting a whole month. I just don't think waiting is an option when we're dealing with this stuff.
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Agree. Go back, tell him you want the biopsy now. I have never been a fan of "watch and wait". I don't like the risk/reward ratio of that path. But then, I'm not the most patient of souls, but I do know I'm still here over 5 years after my initial diagnosis - so maybe being impatient is a good thing!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Another question for all of you: Why would the ear pain be really bad for a few weeks and then all of a sudden go away?
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I wish mine would go away for a vacation. It seems to be more pronounced since I started HBO treatments . Now it involves both ears.
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 | I am also starting to feel this stinking lump brush against the side of my mouth. I am scared to death of what this might be.
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 don't think that anyone can tell you why the ear pain stopped.
That being said, I think the general opinion here is that waiting is not the best option.
It's normal for you to be scared and that's another reason to get that biposy done right away.
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"
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