Hi all...

As most of you know I go to the doc for check ups every 2 months. When I go she looks all around in my mouth and feels my neck and recently said all looks good including my last appointment in December. She actually said once I see her again in February we can change from every 2 months because it will be a year since my surgery. This is all good right?...well....I'm no sure anymore.

My right ear has been bothering me for a while now and I mentioned it at an appointment before my last surgery. She said everything looks fine and then I didn't notice too much anymore. The past month I notice it more than I care to admit and I've been trying to ignore it until I go back in February. Now I'm just getting scared b/c I was so excited at the thought of not going every 2 months.

I don't get any scans since I started going to Fox Chase but had plenty when I went to Penn. My current doc doesn't like the PET but shouldn't I get something? I will ask this question to her but I'm wondering what you guys think.

I know if the big C is back I can handle it but I'm so ready for the rest of my life and that will force it to stop. Ray and I will be married 1 year in March...we are in the process of buying a new construction home and want to start a family. If the big C makes a comeback I can do everything but have children. I can't risk being pregnant and needing surgery or any other treatment.

So....what are your thoughts on ear pain?

Suzanne,


First, where fear is understandable and normal, why let it get in the way of taking action? That's what bravery is...doing what needs to be done in the face of fear, not the absence of it.

Second, it doesn't matter what tests your medical professional likes or dislikes...what do you want to do? Short of exploratory surgery, what other way to find anomolies not readily apparent...PET and/or CT. Where fallible they do serve a purpose. So in short, "F" your Dr's likes and dislikes and tell him what you want done, if only for your peace of mind.

You can't live in fear of recurrance and try to live your life "just in case". Live, do what you want in life...of all people you know how fragile and unpredictable it is. Where a recurrance is a possibility, so is getting hit by a bus. Would you make life decisions (other then insurance decisions of course) based on the probability of getting hit by a bus?

Get a scan or a referral to an ENT if you are not currently seeing one...or have your Dr get to the bottom of the pain...that's what they are paid for.

Good luck

Eric

Suzanne

I am very biased here since "Ear Pain" was my one and only symptom that was misdiagnosed so long that I was Stage IV.
A simple CT scan showed there was a tumor pushing on the nerve. So I think you should get a CT or MRI. I agree with Eric that this is your decision and the ENT should honor it. I would not get nor recommend a PETscan. It could be a simple explanation like sinus, or blocked Eustachian tube, but asking for a CT scan sounds very reasonable and would help ease your mind once it comes back clear.
Charm

Suzanne,

Eric is spot on. If you have pain near your ear an ENT should be consulted. My doctor prefers CT scans over PET for soft palet which is OK with me as long as I get a scan.

I had a doctor almost kill me years ago. He misdiagnosed a very serious illness and sent me home. I went back to him three times over two weeks and he kept sending me home. I spent the next three weeks in intensive care with a new doctor who saved my life.

That experience taught me that we as the patients are our own best patient advocates. Get what you feel you need and if your doctor dismisses your concern, get a new doctor.

Kelly

Thank you for your input...you gave me the push I needed. I've been feeling the pain for too long and I've tried to explain it away. I'm mad at myself because I know better....I really do.

Charm....in your experience the CT Scan shows if there is a tumor there? I don't see an ENT now and I never had. I have always seen an Otolaryngologist (sp?) is that weird? Since I joined the forums about a year ago I noticed most people see an ENT...

Sweetie- I totlaly understand.

I want to start a family too and move on with my life - I know how strong that urge is to just get back to normal. I want to make sure I'm out of the danger zone as much as possible. Such a hard thing.

Definitely get a CT or MRI. I had extreme ear pain but when the doctors looked inside my ear they couldn't see any swelling or irritating at all and kept telling me it must be post nasal drip... yet I felt this constant pressure and throbbing pain that wouldn't stop. It might just be a really bad sinus infection or something like that too but get it further investigated and get osme pain meds too!

XOXOX Kate

Suzanne --

Otolaryngologist and ENT (ear/nose/throat) = same thing. ENT is simply shorter (and a lot easier to spell!).

Also (just curious) -- did you ever have that appointment for another opinion at Sloan Kettering?

Suzanne, I know your fear all too well. The ear pain I had with both tumors on my tongue and that was what prompted my ENT to take action. I would push for that scan just for your peace of mind. I pray everything goes well for you.

Suzanne mine started with ear pain also lucky to catch it at stage 2 But now I will tell you something you must realize! Do not look at your drs.as above you! You in essence are their boss ie you hired them! Part of this protocol is working together on this project for success or what I describe as a WIN-WIN situation! Sit him or her down and tell them what YOU!!! want! grab the brass rig girl! go for it and you will see results! donald

Thank you all:) Leslie...yes I did go to Sloan Kettering and the doc there said I was fine. Honestly..he didn't give me the time of day or listen to one word I said. He read my chart and reports, looked in my mouth and we left. It took me about 6 hours of travel and I was with him for about 15 minutes. He didn't even read my chart before I got there...he read it while he was in the room with us. Anyway...he is supposed to be one of the best so maybe he can look that quickly and make a decision...

Other than a slightly swollen neck I had ZERO indications which I believe is common for HPV+ OC's.

Suzanne

As Leslie pointed out you have been seeing an ENT all along, just using their fancy formal name rather than their colloquial designation. Yes, a simple CT scan is all that is really needed especially for diagnosing ear pain possibilities of cancer tumor. There is a reason why almost every PET scan is usually a combination of both PET and CT. PET scans just measure sugar intake, a highly unreliable diagnostic tool for cancers of the tongue, base of tongue and soft tissues in the oral cavity. The CT scan shows what is really there or not anatomically. If your CT scan is clear then it very improbable that the ear pain is being caused by cancer. An MRI would also be more accurate than any PETScan. It is a very reasonable request to have either a CT or MRI done in light of this symptom. Again, I would bet they will come out clear, but you need and deserve this peace of mind.
Charm

Thanks Charm:) Why can't they just go by ENT's...lol Anywho..I will calling my doc tomorrow and get an order for a CT scan. Then I can put this to rest. As always...I appreciate your input. Leslie...thank you for letting me know that they are the same thing. Someone else may have told me that a while ago but I forgot:)

Happy new year to all:)

Suzanne. I had about 3 Pet Scans and all they did was confuse things with the false positives that came back. You sure did get good responses from our intelligent members. This is the worlds best site for learning and answers. ZGood luck and go for that marriage and kids ..

I was in the same boat as Charm. Ear pain for a year, being told to take alergy meds. Then after I lost my insurance due to a layoff, I get a proper diagnosis. The tumor can put pressure on the nerves and cause the pain. I also knew when the treatments were working when after 5 weeks of Rad the ear pain suddenly went away.

What about during treatment that ear pain suddenly comes back?

Suzanne,
Any knews on aCT scan? Did you get one scheduled?

I had ear pain and for about two months before being diagnosed it felt like my teeth where going to fall out. After the surgery in order to have the tumor removed all the pain went away and it felt like my teeth were fine.

I like how we're all taught that early discovery saves lives yet when we say something or go to the doctor's office we're told to wait or just ignored...go figure.

Tell her you can't deal with the ear pain and that it needs to get resolved asap. And remember, a lot of different things cause ear pain.

Will be thinking of you--good luck.

I ended up getting a needle biopsy right thru the area between my right jaw and ear. Damn it hurt but it was reliable. It came back negative which made me , my ENT and Oncologist all 3 happy.

I agree with Charm and the others above, your life, your decisions. My issues started with an ear ache. It wouldn't go away and I wouldn't stop looking for an answer. Then, all of a sudden I had a sore open up under my tongue and it explained the ear ache. Referred pain from the tumor. Even then brush biopsies showed negative. Not trying to scare you but if a PET scan makes you feel more comfortable then nobody should deny your request.
Best Wishes,
Steve

Suzanne, sorry I missed this post. I hope you are ok. Whatever comes your way with this don't let it stop you living your life. You are way too special and have some wonderful dreams waiting to be fulfilled. Let us know how you are going my friend.

Hi all,

I saw my doctor yesterday and it's that time again....yep...biopsy. I really don't like that word. Here is the plan....MRI and appointment with my doc for results will be on 2/8. My doc said we will know more then but she is planning on a biopsy because there is a white spot on my tongue. Uggg...I really thought I was out of the woods...guess not.

Thank you all so much for your input...life has been crazy with moving and I haven't had much time to be on the computer:)

Hi Wendy...xoxo

Hugs Suzanne...all I can send you right now. 2/8 is too far away..honestly, sometimes I wonder if the people that make appointments for you have a heart. I know, I know....everyone wants to be seen right now but really....ugh.

Deb

Remember that there are many white areas that are not cancer.

Are you still going to try to get the appointment moved up?

Hi Suzanne, sorry to hear you didn't get the answers you were hoping for. Must admit I was hoping for the same answers. But like Jerry said there are other reasons for white area's so lets just think that until we know differently.

Will be thinking of you and hoping, praying for good news x

Wendy

Also wishing I wasn't on the other side of the world because if I could be there with you on the 8th I would be. I will be in spirit though xoxo

Hang in there Suzanne.

Oh Wendy...you always bring tears to my eyes..I really wish you were not on the other side of the world!!! I'm just thankful that I have you here for my friend:) Like you and Jerry said I will try not to worry until I have something to worry about. I really try to not borrow trouble but I'm not too good at that.

Yes, Jerry..I still have plans to move up my appointment. I'm going to call tomorrow and see what they can do. Fox Chase has great schedulers when you call. The girl who made my appointment when I was there was HORRIBLE. She was on a personal phone call when me and the nurse went to the desk. She acted very annoyed that she had to get off the phone. And...while I was waiting for my appointment the one woman was cursing!! I will have to tell my doc but I forgot all about it after I heard what she said. It was no surprise of course but when they agree with what I'm saying....I hate it.

I thank you all so much for your support....xo

hang in there Suzanne...lots of hugs and prayers coming your way.

I'm just as thankful to have you for a friend as well Suzanne. The amount of times you got me through I figure I owe you like.... oh... about a million moments of support lol.

Sending a big hug to you

Wendy

Hang in there Suzanne...remember, it can be a lot of other things. My husband Ron just had a biopsy done in December, the Doctor was very concerned until he went in there and got a better look at the lesion. The results came back benign. He had a fungal infection and the antibiotics cleared it right up. I'll be praying you get the same results.

Hugs,

Shelley

Suzanne,

Any luck today?

Stay POSITIVE

yes!

Hi Jerry,

I'm a slacker...I totally forgot to call!!! I will be calling today. I really wasn't think about it which I guess was good:) I'm just scared to be honest....

hang in there!

I rescheduled...I'm going on January 25....

Well now that is a little better. Glad you got it moved up.

Hugs, Deb

lol...thank you Deb. As it turns out denial is not the best treatment...one would think I would have learned that lesson:)

I'm scared to go and get those results..terrified actually.

That's a better date. Normal to be scared. You will get through this, too.

Glad you got your appointment moved up. Denial won't make it go away but I can understand your fear. Steve is the king of denial, took him 12 months to see a doctor and then ended up with advanced scc. You don't want to end up in the same boat. It may be nothing (I will be hoping and praying it's nothing) but if it is early detection is the best thing. So be strong girl, you can and will get through this no matter what the outcome.

I will be thinking about you all day the 25th, which I think is Tuesday here. Not 100% sure as can never work out these time zones so will make double sure I'm sending good vibes by thinking of you the 25th and 26th Australian time xoxo

Thank you Wendy and Jerry....I am so scared I just don't know what to do. Monday seems so far away. I wonder how I was going to wait to 2/8?

I think a lot of us understand that terror for sure. You know you have to go thru it but really...could we just act like it isn't there??

Kind of like facing something at your desk that is a PITA...you just play solitare on the computer instead.

Hang tough girl....we are hoping for good news.

Deb

Hi Suzanne. Glad you got the appointment moved up. I know I would be scared to but worrying about it would also drive me nuts. Sending all my positive thoughts your way. Hope everything turns out o.k.

Having just gone from the waiting side to the known side I can identify with the pain. The worry just zaps your energy like nothing I have ever experienced. I slept hours, read for hours I finally gave up and spent hours playing bedazzeled because if I was doing anything else the fear was all consuming. But what I haven't mentioned is that they did not premedicate me for one of the two PET Scans, I am allergic to IVP dye. How was I supposed to know that and I was not happy to be sent home Friday half finished. I was on the phone Monday AM and while I am ALWAYS pleasent the squeeking wheel gets the oil is absolutely true. I made 10 different calls to everyone I had a number for and some people got 3 calls before noon. I had that 2nd test yesterday at 8 AM and made sure the Doctor had the results for my 11:30 appt. There was no way their mistake was going to leave me waiting another hour.

Well I'm happy your waiting is over...you're right..it just zaps your energy. You had me laughing at the bedazzeled..I play Cradle of Rome on my DS all the time!1

Welcome to OCF...I see you are a newer member...I hope you find some good friends here.

Well, I had my MRI today. This was my first for OC so I was not ready for all the stuff that would be over my head and be hooked to the table to keep me still. I looked like Hanibal Lector from Silence of the Lambs...at least that what the tech told me. I;ve had MRI's but they were not for my head. Anywho...I guess I now have a slight idea of what the table/mask is like for radiation. From what I can tell the mask is a much closer fit..cheers to those of you who handle that with such grace.

So...the MRI was negative. Totally clear and nice. My doctor smiled as much as I did which was great. I really like her a lot. She said the radiology department is going use to MRI for the radiology students so they can see an example of a clear one. That is all good news and the relife I felt was amazing.

I'm still having my biopsy on 2/2/2010 to check out my oral cavity as a whole but she will focus on my tongue.

That is the best news I've heard all day. I've been thinking about you all day today and I was so hoping the scans would come back clear. Fantastic news my mate Suzanne x

That's great Suzanne.

Thank you all:)

Wendy...I love that we can me mates!!! How fun!!! We don't use that word here except when I go to dinner to Outback Steakhouse...LOL

My nerves have definitly settled a lot. Still a tad nervous for the biopsy but just knowing my neck is free and clear is AWESOME:)

Wonderful Suzanne, just wonderful!

Deb

Congrats on the "clear" scan! Wonderful news - life is good!

That is GREAT news Suzanne!!! I have been thinking about you. Now I'll be praying the biopsy comes back benign.

Hugs,

Shelley

Nothing but the best of everything to you Suzanne. I want to add my congrats too.

Here's hoping for a biopsy...then I will really be happy!!

Give the Drs a nudge. Hard enough to get their attention.

Suzanne,

Congrat on your clear scans. And you are proof that the squeaky wheel gets the grease! Good for you. Wishing you the best on the 2nd.

Anita

Great news, Suzanne!
Here's to continued good news.

Marlene

great news!!! let the great news keep coming....

Biopsy tomorrow...here's hoping for more good news!!! I will keep you all posted. Thank you for being great. I LOVE that Fox Chase puts some happy medicine in the IV before the take me to the O.R

It's the 2nd here in Oz and the day is nearly over which means that your day is just beginning. I just wanted you to know I'm thinking of you and will be praying for good news. Enjoy the happy medicine

Wendy

Praying for good news.

Thank you all..home from the biopsy and it went well. The doc that gave me my "calming coctail" laughed when I asked him if it was an apple martini..turns out it was!!! All the docs and nurses were wonderful and really make the experience not that bad. When I woke up in recovery the nurse was sitting next to me with her hand on my arm. I guess she could tell I was waking up. She was so nice...I got her name so I can write her a note:)I go for results on Friday...

Suzanne, Isn't it a great feeling to wake and one of the medical Profession is sitting by your bed waiting. It restores your faith in them.

Glad to hear all went ok. Sounds like you had wonderful staff. Fingers crossed for good news on Friday xo

Glad to hear the experience was to awful. Praying for good results.

Yes, Jim it is so nice. Gayle was awesome!! She told me I'm the nicest patient she's had in a while:)

My experience was good and I love my doctor..she is so kind. Just hoping she gives me good results on Friday!!

Hey Suzanne,

I'm keeping my fingers and toes crossed that you get good results on Friday!!

Hugs,

Shelley

Good luck tomorrow. I'll be checking for your post.

Good luck with the results Suzanne. I'll be thinking of you. Fingers crossed for good news xo

Clear biopsy!!! YIPEE!!! Well, clean for me:) It was clear for top and back of my tongue and mild to moderate dysplasia on the bottom and right. I've always have severe so this is a first for me. My doc all looks good and I will see her again in May:) Thank you all:)

That is great news Suzanne!! Now go out and celebrate with your hubby this weekend.

Hugs,

Shelley

ON TO THE ISLAND!!!

I hear that David!!!

Great news, now go celebrate xoxo

Susanne

The blizzard of 2010 wiped out my electricity so I am late in offering you CONGRATULATIONS. enjoy the good news, wow - clear MRI and clean biopsy - how sweet
Charm

super news!!

Im confused???? You went to Sloan and they missed / misdiagnosed your oral cancer? Im frightened as hell now as I am going to be scheduling a consult at Sloan. Can you clarify a bit for me. Im new to the boards.

Michele,

I hope Suzanne posts a response, but a quick look at her post and signature line tell me that she went to Sloan after treatments for a follow up in January. Looks like she had additional pain and wanted it checked out. Later in Jan, an MRI came out negative and in Feb. a Biopsy was also negative.

Having said that, I don't think she talked with a doctor that had a great bedside manner. Those of us that have been treated for cancer are hyper aware of our bodies after going through the fights we have. When we feel discomfort of any kind we want definitive answers pronto. Some doctors just don't get that.

Michele --

Not long after Suzanne started posting here, she mentioned that she was going to Sloan for another opinion. I was the one who recently asked her whether she had followed through on that appointment, and the comment you are concerned about was in response to that recent question.

Evidently I missed this thread from July 2009 in which she talked about her appointment there:
[quote]I went to Sloan Kettering in NY for a 2nd opinion. Since SK is supposed to be one of the best cancer hospitals in the world I thought this was a good move. I saw the head doc for head and neck cancer and he said what my doc at Fox Chase says. No PETs and just watch it. This should give me some comfort and it does....I just can't shake the thought of it coming back. Maybe I just have not had enough appointments where it looks good. I've only had 1 in the past 3 years and that was last month.[/quote]
The quote is from a July 4, 2009, post on the second page of the thread.

So I hope this relieves your mind about going to Sloan. Obviously things have turned out well for Suzanne!

Suzane, you have been great in the forums and I am so glad you got the news you needed to cheer you up. Congrats and don't forget to stick around posting.

Suzanne,

I am so happy for you! Now you can get on with living and following your dreams. All the best to you and your hubby.

Anita

Hi Michelle,

Sorry for the dealyed response:) We're moving and I've been surrounded in boxes and tape!!

Alright...here is my timeline. Diagnosed in March 2007. Went to Penn and had 3 surgeries. I didn't like the doc and he always wanted to cut..cut...cut. Everytime it hurt more and the healing took longer. So I went to Fox Chase for another opinion. They basically said the same thing which is to watch it. So I switched docs and went to FC for my follow ups. I was going every 2 months. I still had some pain and we were just "watching" and I didn't feel comfortable. So we decided to go to Sloan for a 3rd opinion. I saw Dr. Shah there and he said the same thing, which is to watch. To me that is the hardest part and I had to learn to live with that uncertainty and trust my doc. Since Dr. Shah said the same thing I decided to stay with my doc at FC. So, no, they did not miss anything:)

Since 2007 I am much more confident in myself and knowing my body and trusting my doctors. I hope this helps and feel free to send me PM. I would be happy to discuss anything:)

Jim...I will always be on the forums. Everyone here has helped me so much and still do. Nothing makes me happier than to return the favor and help others.

Suzanne, be careful if you help move the boxes. They can create a strain which surely would be good for you. Good luck with your new location and may you be happy as you deserve.

I will be careful Jim...I promise. But I'm not good at watching people move my things so I will be helping:)

LOL you are like me.. Just can't be idle. If it needs done.... do it.