| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Well, my ENT opted not to do a biopsy. He said that he could not visually see anything that might be a problem. he did look at my previous PET/CT and did say that there was some uptake there, and it is worth checking into to make sure th uptake was decreasing. He also said that since I have noticed swelling in my left jaw/cheek area, not pain at this point that we did to find out what is going on. Once again we play the waiting game. My insurance has to approve it and once they do we will get it ASAP.
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: Jan 2009 Posts: 54 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2009 Posts: 54 | Dear Angelia, My goodness it must be so difficult doing all this waiting. Very glad to hear that there is nothing visually concerning and hope that the PET comes back clean and allays your fears.
Very best Cathy | | | | Joined: Dec 2009 Posts: 108 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2009 Posts: 108 | Angelia,
When Carol went for her followup with the ENT at the end of June, Carol had told him about some pain in the left chin, lower jaw area. She also has a small bump on her left chin and is puffy. He couldn't visibly see anything on the inside of her mouth, had a panoramic radiograph done right then. The radiograph didn't show anything then he did a core biopsy. I'm glad he didn't take a back seat because he couldn't "see it". Unfortunately the biopsy is positive as I posted on another thread. We are still so appreciative to this day that Carol was referred to this ENT upon original diagnosis in Dec.
Linda
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009 Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap ypT4aN0 HG Mucoepidermoid carcinoma 2nd Recur 1/18/11 - Tumor lower left lip Surgery 2/9/11 - Canceled - Inoperable 3/29/11 - Died
| | | | 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 | NOOOOOO!!!!!! You just can NOT have another recurrance. After already having one recurrance, that should be enough for anyone. I would really hate to see you in the three timer club. Why no biopsy? Please update as soon as you know anything. You will be in my prayers.
PS, IF it is cancer, you beat it twice and can do it again!!!!! 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 | Linda, I do not have the pain in my left chin area at this point, but I do have intermittent ear pain in both ears. And the lumo on the right side of my tongue is acting exactly like it did last October. I am here on Pins and needle hoping it is just scar tissue that is causing that pain. The swelling in my left cheek worries me more than anything. My ENT did not seemed to concerned, but felt the need to go ahead a schedule a PET.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Christine, He chose not to do a biopsy because all he could see was scar tissue and was afraid that all he would get on the biopsy was scar tissue like he did in February when he did the biopsy. He said that he did not want to leave any stone unturned. He did go back and look at my PET from April, and was the first one to say that I did have some uptake on that PET but it was attributed to continued healing from radiation. So he said let's go ahead and do another make sure that uptake is decreasing and not increasing. I think he is concerned because my ear pain is acting just like it did last year in Sept. and Oct. I am calling my insurance company this morning to ask if it has been approved yet. Anyway I will keep you all pposted. I am praying ti is just me being paranoid.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Cathy, Thanks for your post. We are praying the same thing. I have not shared with many people because I do not want anyone concerned. I feel comfortable coming here because we have all been there. I have not even said anything to my family yet.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | PS - to anyone who reads this and is a friend on facebook, please do not post anything about this there on my wall, send me a private message instead. Thanks.
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: May 2010 Posts: 37 "OCF Canuck" Contributing Member (25+ posts) | "OCF Canuck" Contributing Member (25+ posts) Joined: May 2010 Posts: 37 | Angelia! I have just finished reading your post & I am so sorry that you have to go through this, you are in my thought's & I pray your scan comes back with clean result's. Our insurance plan's seem to be so much different here in Canada. I am slowly learning through reading all of the different post's on how it is so different here in comparison. I wish you my best & many prayer's are sent your way.
Stage 1V scc of toncil 12/1/09 Peg in 01/18/10 35 rads 3 cisplatin tx ended 03/02/10 | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Angelia, my thoughts are with you. David
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
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