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#117471 06-05-2010 03:52 AM
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I am a 51 yr. old ICU RN (which means I know way too much!) Mid April I developed fullness of my rt. ear, ended up going to ENT, and had CT scan this week. CT scan revealed nothing about my ear, but on the opposite side of my head showed 9 mm x 11 mm lesion on floor of mouth and enlarged (2.3) jugular lymph node on same side as lesion. Also showed multinodular goiter which I have had for years and have been seeing endocrinologist for, and have had biopsied twice (both neg.). ENT is very concerned about way thyroid looks and does not know if all three things are related. At first he said he wanted to bx thyroid first and go from there, but then he felt the mouth lesion (which you can not even tell is there by just looking) and immedicately said he did not like the way that felt and wants to have it biopsied also. He has not set anything up yet because he wants to further discuss CT with radiologist at hospital. I know that most mouth lesions are cancerous and am very doubtful that if I have thyroid cancer it would metastasize to mouth. I live in Jacksonville, FL. Shands hospital is in Jacksonville and affiliated with UF. There is a maxillofacial surgeon at Shands who specializes in cancers of head/neck. He is on my insurance and I am wondering if I should try to get appt. with him and have any further workup done at Shands instead of the hospital I am currently dealing with. Or should I stick with the ENT I am with for all the initial work-up? Also wondering if I should ask ENT for MRI? Or am I just in a state of excessive panic just because I am an RN and, as I said at the beginning, I know way too much? Any help here is greatly appreciated!!


Susan
Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland.
10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck.
T1N0M0. IMRT started 11/22.
Never smoked, light social drinker
Also happen to be ICU RN
Joined: Jun 2007
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Welcome to OCF. Right now your mind is spinning and you dont know which way to go. Being a nurse should be helpful IF you have oral cancer. The only way to tell is thru a biopsy. If you have oral cancer then a second or even third opinion would be a good idea. The best place to be treated is at a cancer center. Since you have had symptoms longer than 2 weeks then you may want get things moving along by having the biopsies done.


[quote=fullofquestions]. I know that most mouth lesions are cancerous [/quote]
That is not true.
Historically, it has been difficult to determine which abnormal tissues in the mouth are worthy of concern. The fact is, the average person routinely has conditions existing in their mouths that mimic the appearance of pre-cancerous changes, and very early cancers of the soft tissues. One study determined that the average dentist sees 3-5 patients a day who exhibit soft tissue abnormalities, most of which are benign in nature. Even the simplest things, such as a canker sore (herpes simplex), the wound left by accidentally biting the inside of your cheek, or sore spots from a poorly fitting prosthetic appliance or denture, all at first examination, share similarities with dangerous lesions. Some of these conditions cause physical discomfort, others are painless. The question is which ones deserve action, and which ones bear watching and waiting? ....This info is from the main OCF pages.

This may also be helpful...
http://oralcancerfoundation.org/dental/screening.htm
http://oralcancerfoundation.org/dental/pdf/oral_ulcers.pdf


Christine
SCC 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 smile
ChristineB #117473 06-05-2010 06:43 AM
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Thanks for your response. I checked out the link you gave-- unfortunately that is all about an open lesion in the mouth. The lesion on the floor of my mouth only showed up on CT scan. There is no change in the mucosa over it-- I had no idea it was even there until the CT scan. Now that I know it is there I can palpate it with my finger-- it is painless, very hard and feels attached to the jawbone and is towards the back of the floor of the mouth. The fact that there is an enlarged jugular lymph node on the same side as the mouth lesion raises a red flag. My sister, who is a nurse anesthetist, spoke with several higly respectable general surgeons that she works with yesterday. They are the ones that told her that growths like this on the floor of the mout are nearly always cancerous.


Susan
Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland.
10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck.
T1N0M0. IMRT started 11/22.
Never smoked, light social drinker
Also happen to be ICU RN
Joined: May 2009
Posts: 1,412
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Gte the biopsies ASAP. The only way to know is by a biopsy. When I began down the road you were, I had a CT which showed up absolutely nothing, but a sinus infection. I eventually had a biopsy because of the pain I was having and it did turn out cancer. That said everyone is different, and you know that as nurse. We are all here for you. This is an amazing place to be. Let us know what you decide to do.


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
walknlite #117479 06-05-2010 09:46 AM
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Posts: 87
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Thanks for your support! A nurse practitioner friend of mine called an oncologist she is friends with this afternoon. He too recommended the bx ASAP and said it would be best if they could actually bx the lymph node if it is not wrapped around the jugular. Does anyone have thoughts on that? He also suggested I ask ENT to order PET CT.


Susan
Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland.
10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck.
T1N0M0. IMRT started 11/22.
Never smoked, light social drinker
Also happen to be ICU RN
Joined: Sep 2006
Posts: 8,311
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You might want to start with a FNA of the node since it would involve less trama/pain. The ENT could do that and you would have the results back fairly quick.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #117488 06-05-2010 02:08 PM
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Posts: 388
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Welcome to the best place to come for advice from those who have been there. As everyone said, the biopsy, as you know, is the only way to find out. I just wanted to say that my husband has been going to Shands in Gainesville for about 8-9 years and is very happy with the care he receives there. They have never lead him wrong and his recoveries from surgeries have gone well. I know you are speaking of the Shands in Jacksonville, but I would surmise they do confer with each other and have the same basic approach to OC. I will always recommend Shands. Please keep us informed and best wishes for good news.


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
Joined: Apr 2010
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Hey, I had a biopsy done initially after seeing the ENT. He did a frozen section during the procedure and then sent one off that we got results from several days later. Both confirmed I had SCC. The next step was a PET to see if anything showed up anywhere else in my body. I must say that when I got the results of the PET, I was somewhat relieved that I had no other "hot spots". You can always get a 2nd opinion at Shands about the treatment protocol. I personally got three opinions from different places. They all concurred so it was a no brainer for me. Good luck to you ! I have three daughters that are nurses and 2 son-in-laws that are doctors and they were all full of advice. In the end, I have listened to my RO and I have done fine. I also went to a MO in case in was determined that I needed chemo. I wanted as many "on board" as I could get in case I needed them at some point. Sounds like you have family support which is great.


58 yrs Female
Vocal cord cancer T1NOMO
DX 3/05/10
Started TX 3/18/10 with IMRT 39 total treatments
Smoker- quit at DX No PEG
Baymamma #117504 06-06-2010 06:54 AM
Joined: Dec 2009
Posts: 108
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Posts: 108
I would have to plug Shands Jacksonville as Carol is being treated there and the Doctors are taking care of her. She has completed chemo and radiation but they are keeping a very close eye on her.....

If I may, get a referral to see the Oral & Maxillofacial surgeon at Shands. Dr. Nelson Goldman is the Head and Neck specialist and is head of the Combine Tumor Board. He is a no nonsense Doctor. Up to date with everything OC. And, when necessary he gets things done as of yesterday. I just finished posting in Boatswife question regarding the Doctors at Shands-Jacksonville that Carol is seeing.

When Carol initially was being seen at Shands the nurses were wondering how Carol got in to see Dr. Goldman. It got to be comical and then annoying....I just told them Carol was referred to him....end of "story". Carol considers herself lucky being referred to Dr. Goldman.

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




ElCee #117508 06-06-2010 10:34 AM
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Posts: 229
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If you can get in to see the doctor at Shands quickly, then do that. I know the ENT that saw me initially didn't want to do the biopsy. He likes sending patients to the specialist with a "fresh first hand look" and considering what medical we have here in Sitka, I was good with that. Everything happened pretty fast once we met the doctor in Seattle.

Like everyone said, the first thing to do is the biopsy.


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
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