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!!
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.htmhttp://oralcancerfoundation.org/dental/pdf/oral_ulcers.pdf
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.
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.
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.
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.
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.
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.
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
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.
Ok Nurse lady...let's get down to the brass tax. I'm not going to hold it against you (much) that you are a medical professional, but just to be safe I'll keep things very simple for you so your medical training doesn't interfere with good sense. I know this sounds harsh but let me assure you it's not a personal attack and said in more of a "smart ass" joking tone (see David, I'm making an attempt to clarify so not to offend!).
1st. It's NOT cancer until a biopsy says it is...so let's not jump to conclusions before there is confirmation and staging information. It will only drive you into an emotional wreck.
2nd. Do yourself a favor, seek out the BEST medical advice available to you. As a nurse yourself, you know there are good Dr's and there are bad Dr's...all come with a God Complex but a few actually know their ass from a hole in the ground.
As a medical professional, you've seen or read about cancer...but you don't really know until you've lived it so take your cues from the people that have actually lived through it and experienced it. I mean let's face it, the best driving directions are from people that have traveled the road...not those that have just read a road map.
Welcome to OCF, we care, we've been where you are and we're on the other side and here to help.
Eric
[quote=EricS]
As a medical professional, you've seen or read about cancer...but you don't really know until you've lived it so take your cues from the people that have actually lived through it and experienced it. I mean let's face it, the best driving directions are from people that have traveled the road...not those that have just read a road map.[/quote]
And as a fellow RN in the OR, this is so true.
Thanks everyone for your encouragement and support. . . maybe I will change my user name to "nurse lady." I would have responded sooner but worked a 12 hour shift today. Thanks for reminding me it isn't cancer until the official biopsy is in, no matter how much I think I know! Thanks also for the info about Shands. I don't work there and don't know any of their doctors (never had reason to). After talking to several people where I work, I was encouraged to go ahead and get the work-up done at Baptist as it is apparently somewhat difficult to get in at Shands, especially if you don't have a diagnosis yet. I plan to call the ENT's office first thing in the morning to try to get things moving as far as the biopsy. Right now the worst thing is not knowing what I am dealing with.
My 2 daughters and daughter in law are in the medical field too. I really appreciated them for being in my corner. Girlfriend ran like a snake had her but the relatives are still looking out for me. Always one of them for all appointments which is great as my mind forgets what is told to me. LOL
The ball is finally starting to roll. When I called ENT's office first thing today, I was told ENT STILL had not talked to radiologist but would try to go over to the hospital during lunch. ENT finally called at 1:30! Says the mouth lesion is not in a position where it can be biopsied by FNA, so radiology will bx the lymph node as well as the largest nodes on either side of my thyroid (ultrasound guided for all 3). He did admit, however, that it is highly unlikely that if I have thyroid cancer it would have mets to the mouth. He has handpicked the pathologist he wants there during the procedure to check the samples. Hopefully it will be scheduled in the next few days. Depending on the results of these biopsies he will decide what to do to the mouth lesion . I feel a little calmer just knowing that the biopsies are finally in the works.
BIOPSIES ARE SCHEDULED! This Thursday- 8 AM!
That is pretty fast. Good luck and we will pray for negative results.
I had my biopsies yesterday morning-- definitely not fun. Although the radiologist who had gone over the CT scan with my ENT had said the mouth lesion was not in a place where it could be biopsied by FNA, the radiologist actually doing the procedure felt he could get to it. He tried twice but the tissue started bleeding so he could not see it on ultrasound anymore. Between that and the severe pain I was in he stopped trying. If I ever have that done again I will insist on sedation-- local anesthetics only go so far. My sister, a nurse anesthetist in TN, was shocked I wasn't sedated for that. Anyway, he was able to get samples from the lymph node and both sides of the thyroid and those weren't so bad. I went home in severe pain in my mouth, applied ice and took pain pills I had left over from something else, and laid on the couch the rest of the day! Thanks goodness my husband had ignored my claims that he did not need to come with me and I'd be able to drive myself home. We have an appt. to go in 10:30 Tuesday for the results.
I've been thinking of you and wondering how everything went. I'm sorry they had you go through all that. That sounds too much to just try with a local.
I hope you are feeling better today.
Nurse Lady,
What you'll find is that you really have to slap your medical professionals around a bit to get them to understand what YOU are going through, particularly in the pain department.
Everybody is different especially when it comes to pain tolerances and since the Dr's doing the procedures have never had them done on themselves, they are generally clueless...go figure. I have a tendancy to let them know it ("Hey idiot, that f*cking hurt! next time drug me you dumb bastard!")and find it's the best policy.
My wife made a sign that hung over my hospital bed after my mandiblectomy/flap/neck dissection that read "Don't touch him without pain medication!"
Eric, you having me laughing hard right now. That was an answer that only you can give. I luv it.
Eric- you definitely have a great sense of humor and tell it like it is!! I can still feel the pain in my mouth when I think about that procedure! Never again!!!
We finally got some results after having to postpone the morning appt. to the afternoon because the pathology report was not in yet! The biopsy of my thyroid gland shows papillary thyroid CA, which is the most common thyroid cancer and the most easily treatable. The lymph node biopsy was insufficient for any type of diagnosis. So, I am being scheduled for surgery which will involve removing the thyroid as well as the mouth lesion and the lymph node all at once. I am thankful the for the thyroid diagnosis and still praying for a negative report on the lymph node and mouth lesion. Hopefully the surgery will be scheduled in the next week or two.
Nurse Lady,
Awesome attitude, just because you got a cancer diagnosis doesn't mean it's the end of the world. Keep us updated and definetly keep your outlook. Some of the best advice I ever got was "Eric, the only things you can control right now is your attitude and your nutrition...the rest is up to how your body responds to treatment!" The only thing I would add to that is I could control where I recieved my medical advice and thankfully was getting some of the best in the world.
Keep your chin up!
Eric
Glad you were able to get some answers.
