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#23449 06-15-2007 03:56 AM
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Hi everyone..

I have been reading here for about a month now and have just decided to post for the first time.

About a year and a half ago I noticed a feeling of "peeling" on the roof of my mouth. I went to my reg dentist and then off to an ENT. Both said it looked ok and sent me on my way. The feeling has never went away and about 4 months ago, I started getting un-bearable head pressure and a mouth lump that is located behind my wisdom tooth on the upper part of my jaw. I go back to the dentist and he does another oral screen on me and says he sees a red patch on the top of my mouth but it does not look suspicious to him at all. He states he has seen it a million times etc. I ask if we have it biopsied, he says no need to. I then go to yet ANOTHER ENT and he sticks this hose up my nose and down my throat, and says he sees nothing. Just by chance I was leaving for the Mayo Clinic in Rochester, MN for a non-related health issue I have had for 8 years. While I was at the Mayo for my check-up, I had the Maxoficial/Oral Surgeon doctor look at me. He said he was not concerned. I am due to go back there on June 25th to July 8 for some further testing.

In the meantime, My maxoficial Doctor out here where I live says they make a light and a special dye that can help show abnormal cells in mouth? Does anyone know anything about this by chance? He said he wanted to do this instead of the oral biopsy since I am leaving for the Mayo clinic in a week. He is afraid to do any type of surgery and he said the Mayo can do this. That I should insist on the Doctor at the Mayo to do it?

The lump I am feeling is located in the retromolar trigone section of my mouth. My ear pain, head pressure is un-bearable. I sometimes just want to cry all day and all night because of the pain.

Any thoughts please? Comments?

Thank you for allowing me to vent.

#23450 06-15-2007 11:00 AM
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Vent away, Jenn. This is a great place to do that because everyone understands completely.

When I had a red spot in the retromolar trigone region, the dentist said to forget it. So I did. Some months later is was an ugly tumor that required surgery, radiation, and chemo.

So be persistent. Not all health professionals are as knowledgeable as they should be about oral cancer.

I believe the procedure about which you are inquiring is Vizilite. If you use the search function, I am sure you will find many references to this, or Google that term to find the company website.

Please let us know how you are doing. It sounds like you are a strong advocate for yourself, which is wonderful. Just keep pushing for an answer, one way or the other.

We all know how scared you feel, but never forget that there are many, many of use here who have faced the beast down.

#23451 06-15-2007 11:00 AM
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Jenn,

I am a dentist in Langhorne, PA. I have the VELscope light in my office, which is actually better than the light and the dye for checking areas that are suspicious. Up until Feb. of this year, we did use the ViziLite, which is what the surgeon was referring to.

Please send me an email if you would like to come in and get checked. Not sure where you are in NJ, but it can't be too far.

Jerry


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"
#23452 06-15-2007 11:18 AM
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Welcome Jenn

I believe you are referring to a velescope. (Spelling?) This does not detect cancer in general. I will look up a couple of threads on it to send you.

I sent a copy of this post to a dentist. He will respond shortly.

I personally would DEMAND A BIOPSY.

For that many Doctors to not be concerned leaves me speechless. Especially with your symptoms. What do they say is causing your symptoms?

I know you are scared. Do not assume you have cancer. With that many doctors not concerned they may be correct. But they all could be wrong also.

If you like, there is a topic titled "Missed or miss diagnosis" by "Joanna" in the forum "Activism".

I see you have no e-mail. I will look up some threads and PM them to you.

I am sure many will respond to your post shortly.

Do Not Panic. It is not cancer until a biopsy says so.

Vent away, thats what this forum is for. Keep asking any questions you may have.

Wishing You Negative Results.

PeteyB smile

PS: Boy that Dr. Wilck is fast!


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#23453 06-15-2007 12:45 PM
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Petey,

You keep me on the ball with your PM's. I would have been here later tonight if it were not for you.

I hope that Jenn gets back here soon and contacts me.

Jerry


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"
#23454 06-15-2007 04:34 PM
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Thanks everyone for responding and the advice.

I have no clue how to "PM" a person on here or even add an email address. Maybe someone can possibly help a scared, un-savy woman with computer lingo?LOL..I have no idea how to even set up a profile.

On a serious note here I am trying to prepare myself for the worse. I am going with my "woman" instinct and I honestly feel something in my body that just doesn't belong? Does that sound totally nuts or what? I am usually in the gym 5x a week, 2 hours each time, and I honestly think I could be a poster child for an ADHD adult! My energy level 6 months ago was sky high and now I feel like a 80 year old woman who belongs in a rocking chair. I guess I no longer feel like an ADHD adult but rather an exhausted human being.

Joanna? What type of surgery did you have? Did you have massive head pressure and ear pain? Where did the cancer spread to?

Petey they have no explanation, even the MAYO Maxo Doc said he sees nothing hence the reason I am going back out there on June 25th and I will insist on this biopsy. Will that hurt?

Jerry, I spoke with my Oral/Maxo Dr here in Jersey ( I am in Princeton) and I see him on Thursday June 21st. He then said I can take the result and pictures out to the Mayo on June 25th. The Mayo wants no biopsy done before I get out there because they do not want me to travel on a plane stiched up. So I have a feeling biopsy will be done when I get there with the results of my visit here with my oral/maxo Doc.

One last question? Wouldnt this tumor or whatever the hell it is growing in my mouth show up on a test? I mean I have had cat, MRI, and even a pet scan. The MRI showed something but because of the fillings I have in my mouth, the pictures were not as clear as they wanted. How about blood work? Would that show something?

Thanks

Jenn

#23455 06-15-2007 05:44 PM
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Hello Jen,
Our dentist just this past year started doing the test you menioned with the dye and light. It's a mouth wash you swoosh around for a minute and then they look around your mouth with this special light. I believe it just shows abnormal cells which would then cause them to immediately send you to the Dr's. It was actually our dentist who sent my husband Kyle to a Dr. after noticing the lump in his tongue. He probably bought my husband many years of life by catching his cancer early! He's got 3 days left of rad/chemo. I would not stress out however, it could be anything. Good luck. Tammy (Kyle 51's wife)

#23456 06-15-2007 06:53 PM
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Hello Jenn.........Try this.

TO READ AN INCOMMING PM;

I also sent you a test


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#23457 06-15-2007 07:14 PM
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To answer your question to me, Jenn, I had a visible tumor in the back of my mouth, and a very enlarged lymph node. The surgeons removed the tumor, did a modified radical neck dissection. When I healed, I had 37 rad treatments and concurrent chemo. That was five years ago and I feel great. And no, I did not have head pressure or ear pain.

I very sincerely hope you do not have cancer, but if you do, know that it is survivable. The place where you are now is the MOST scary. Once you know what ails you, one way or the other, then you can plan and things will begin to fall into place. You are up in the air now, but it won't last forever. Take deep breaths, and know we are here to help.

#23458 06-15-2007 11:55 PM
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Jenn,

You are about 20 minutes from my office. If you would like to contact me by email my address is [email protected] The offer is still open for the VELscope exam (no charge, of course).

I see you are heading out on Thursday and I am in the office Tuesday afternoon and evening and all day Wed.. It just takes a few minutes to have it done. I am leaving for the weekend in an hour or I would have offered to see you today or tomorrow. I am off on Monday, but could definately arrange something sometime that day if you want. I will be checking my email during the weekend, but not the forum.

I am glad that you are getting the biopsy soon. This will give you the answer and this is the best way to know for sure what is going on.

I'm sure you will be hearing from Joanne soon who lives in Princeton and is one of the members here. Her husband Jack is an OC survivor and Joanne is very knowledgeable.

Good luck and let me know what you want to do.

Jerry


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"
#23459 06-16-2007 01:06 AM
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Jerry?

I answered you through email and thank you. Now is it possible to also see my Maxoficcial/Oral Doc as well on Thursday? I would insist on paying you for your time and if you do not want/need the $, then perhaps you could donate it somewhere? Is the test you are referring to also include the dye, or is it just the light?

Joanna? Did they have to remove your palate/part of your palate? Or was it just the area where the tumor was located? Did they biopsy it first and if so, what does an actualy biopsy entail?

Pete..Thank you. I emailed you and I THINK I fixed the profile.

I slept nothing last night AGAIN. The pain is so much. Sometimes I just want to crawl in a hole and cry. Not to mention the anxiety this has put on me for 4 months now. UGH!

Thanks everyone again for all the questions answered and advice.

#23460 06-16-2007 02:25 PM
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jen


Take jerry up on it the light is painless !!!!! And Quick!!! somethings just dont show up!! But this light is great !


Shar


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#23461 06-16-2007 02:50 PM
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Hi Jenn, My husband Jack had half of his soft palate removed, tonsil, and a resection of the base of his tongue via robotic assited surgery at the University of PA hospital. He also had a level V neck dissction, which removed the entire right chain of lymph nodes and part of his shoulder muscle.

I am sure that you are very anxious over this, it's good to take Jerry up on the offer to do the velscope. I get that done every 6 months, it's painless and gives you peace of mind. Jack is now getting it done as well to check for recurrences.

Since you're alrady hooked up at the Mayo clinic that's a very good resource. There are also comprehensive cancer centers in Philly and New York. Where in NJ do you live? Please feel free to email me if you have other questions.

Yes they did the biopsy first and then decided on the treatment plan. It's customary to do that. You will probably also have a CT scan.

Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#23462 06-16-2007 06:40 PM
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Let me refraise somthings dont show up on other test is what I meant to say ..some like ct..I was in a rush !! MY ent has asked me for Brochures on the light by the way !!! smile


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#23463 06-17-2007 02:44 AM
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Good morning everyone.

I spoke with Jerry via phone twice yesterday. He really is the total best and I so appreciate everything and everyone on this site has said and done for me. The only reason my Mayo trip was shortened two weeks ago was because yesterday was my Daughter's 10 birthday party. That is something I refused to miss! I have learned in life that some milestones, especially concerning our children truly can not be missed no matter what. I told my Docs out there that I will be leaving no matter what to make it to her Birthday Party and then I will return right after if need be. Anyway with that said..

When we returned home at 9:00 PM there was a message from the Mayo asking me if I could take a Mayo Medic Flight out there today. I called them back and said sure. I then asked why the rush and Doctor told me he would talk to me about it when I get to Mayo. I dropped it. I figured I have enough anxiety about all of this, no need to have more. I then spoke to Jerry after this and let him know what I was doing. He said I was in good hands. ( By the way I did call Mayo and they do have this light thing everyone is speaking about) Thank God! So the Mayo Plane will be arriving at 3 PM at Trenton airport and I should be in Rochester ,MN by 6 PM.

I will try to give all an update and Jerry does have my cell number as well. Thank you all for your support.

Oh...sorry JoAnne...Mayo has said if it is Cancer that they would do the surgery and such but Memorial Sloan is also excellent as well. Plus it's alot closer to me then MN. Thanks for the info!

Jennifer

#23464 06-17-2007 04:54 AM
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Wow Jenn-that must've been the most nerve-wracking phone call ever. I'm sorry you had to deal with that. Please keep us informed.


SCC-tongueT3N0M0- IMRT 35times-1/07-3/07; along with one cycle of Cisplat & one cycle of Carboplat; weekly erbitux.finished all tx.3/07-supposedly gone. Recurrence 6/07. Age 31-non-smoker/social drinker. Devastated it's back.
#23465 06-17-2007 12:51 PM
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Sorry for the delay, Jen. I just saw your questions, the answers to which are:.

No, only the tumor and some surrounding tissue was removed.

For the biopsy, the area was slightly numbed with something topical, and snip, snip, some pieces were removed. Put in some gauze, pat me on the head, and I was out of there. Not in the least traumatic physically.

If you have any more questions, I will be happy to answer as far as my experience with the same type of tumor goes.

#23466 06-17-2007 02:55 PM
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Hi Jenn, wow what a roller coaster ride, I really feel for you. The 10th birthday party is an important event and good for you for being there. Please let us know what they say at the Mayo clinic and what the next step for you is. We'll be thinking of you. Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#23467 06-17-2007 03:32 PM
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As Jenn said, we spoke twice yesterday and by now she is at The Mayo Clinic. She was going to come to my office on Wednesday, but this quick change in plans ended that plan.

If I hear from her and she hasn't gotten to the forum, I will post a message from her.

I had never heard of the Mayo Medic Flight, but this certainly helphed Jenn out, as she was scheduled for a commercial flight on Friday and now she is there already.

Jerry

PS Joanne, Jenn lives in Princeton. We never discussed exactly where.


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"
#23468 06-18-2007 07:31 AM
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I was very nervous about my biopsy Jenn, but it was the best thing that could have happened! I was just called one lunchtime and told to just see the Maxiollfacial surgeon and he did the biopsy there and then--I had local anaesthetic injected inside my mouth and cam out with 4 stitches which felt a bit weird! But once the bruising went down, my face has actually shrunk back to normal--I have less pain in jaw and less head pressure and far more movement! I took painkillers for 5 days, then was amazed as the pressure eased--best I've been for months!
Good luck,
Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#23469 06-19-2007 03:10 PM
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Hi all,

I spoke to Jenn at the Mayo clinic today. They have no answer for her. They are not doing a biopsy. I'm not sure if there is anything else that they will be doing or when she is coming home.

When she gets home, I will do an oral cancer screening and check her out with the VELscope.

Jerry


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"
#23470 06-22-2007 01:22 PM
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Just checking in here Gang..

Lordy,Lordy,Lordy, LOL

I arrived by Mayo Medic ( that was a trip in itself) and I was admitted into St. Marys. I saw Maxoficcial which all told me there is no reason to do a biopsy since all of my scans are clear. They tell me I am young and my mouth looks clear. I proceed to show them pictures that were taken by my dentist in Jersey, they say it's nothing. I ask them how do you know? Do you have the velscope? ( this is about when the "Jersey girl" attitude comes out. Maxo says no we do not velscope. Mayo does not beleive in using equuipment until it has been proven for 5 years at least. I say to him that I think his "Mayo" way of thinking royally sucks. He says from the looks of all scans including a pet ( the pet showed I have some hot nodes in the neck) I and my mouth look great. So I say to him I have all symptoms of oral cancer including but you will not do a biopsy? He said no, there is no reason to biopsy, he sees nothing. Then refers me to neaurology to look at me. They prescribe something to help with the pain and they think, notice I say think, that I have a cranium something or another. Basically a migraine! Lord help me. I say to all my Docs at the end of the visit what the BLANK are we doing now and how are we going to find out what's going on? They say the following:

1.We want to rule out two cancers that can cause the same type of symptoms. First would be oral cancer ( I am headed to Jerry on Tuesday for the velscope) and if we see anything we will have it biopsied by my guy in New Jersey. If results come back cancer, then Mayo told me to go to Sloan and that Mayo is not a cancer center.
2. Second cancer would be breast cancer. They have been watching two lumps and under my arms swelling of the lymph nodes. That surgery is scheduled at Mayo the first week of July.
3. So if those two are ruled out, Mayo is basically saying that it is because of this cranium diagnosis which is causing me all this ear pain, jaw pain, and head pressure.

Listen, I am not down playing the Mayo Clinic. I have been a patient there for over 8 years for other rare health issues. They saved my life 8 years ago and I was hoping they would help out in the oral cancer section. However, even the ENT that I saw in Mayo said to me,Mayo is excellent but like any other hospitals, they have their specialties. He then says Sloan is the way to go if Oral Cancer is found.

So I am still here in MN, I will arrive back home on Sunday. I will be home for the week and then will return to Mayo on Sunday July 1st for the rest of the tests along with Jerry's words and my NJ Maxo's words and my little irish fingers crossed.

It's so frustrating. It truly is.

Jerry I am coming home!!!

smile

#23471 06-22-2007 01:51 PM
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Hello Jenn34NJ

Lets all hope that Jerry does not find any "unusual" cells.

The bright side is that Memorial Sloan Kettering IS the #1 Cancer Center in the world!

Good Luck. Petey


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#23472 06-22-2007 01:55 PM
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I forgot to mention that I had my last two tests today before I fly home on this Sunday. I had another MRI of my head ( soft tissue) done today which looks fine they said. However I had the endoscopy done at 1 pm, and they found 3 polyps in my esophougas,which they removed, but results will not be back until next week some time. The scope is the only thing that showed up with anything.

Is it possible for cancer to NOT SHOW UP on any of these scans/tests?

Oh let me apologize for my spelling errors now..I am in a rush..LOL

Talk to you all in a bit.

Jennifer

#23473 06-22-2007 02:04 PM
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Yes I agree Pete. And it's also about 40 miles from my house so it's a hell of alot closer to home then Rochester,MN. The Mayo Drs here are puzzled to say the least. They even admit I show and have all signs of oral cancer but then they see nothing and say they can not just biopsy something they do not see! That is when the Mayo Docs said if it were them, and it was oral cancer, Sloan would be the place they would go to! So that says alot I think.

Jerry really is awesome. He kept me company in mind and spirit during my admission in the hospital. I see a very comforting friendship forming especially since we are pratically neighbors! He makes me smile as well:)

signed,
Jersey girl who has to go try to eat something now...!

#23474 06-22-2007 03:11 PM
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Jen

I wish you the best ! I myself am thinkin of trying SLoan..They say they are GOOD ! But I wasnt comfortable with them on the phone my 1st go round with this and I liked the ent I had here. I talked to dana farber and I have family in boston who pushhed for it ..SO I went that route. Now again I wait for biopsy to see what this mass in my jaw is..Maybe I should check out sloan too !

Good luck with Jerry on Tues !


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#23475 06-25-2007 06:10 AM
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I just wanted to check in. We arrived back here ( home in Jersey) on Sunday night. I have not slept since arriving home. I have a ton of pain in my jaw and ear and still the same burning sensation in my bones especially my left arm. I called the Mayo this morning to see if any of the results were back from my endoscopy, they say no. Neuro put me on a med, endomyicin( spelling?), and in between I am taking tylenol. Mayo found I am ultra-sensitive to pain meds while I was there this last trip. They cause my heart to race. I did call Slaon this morning to find out how to make an appt etc and she told me to call back once the VELscope exam was performed. Tommorow I will be doing that with Jerry. I am freakin tired and hate to see my body go down this road for the last 6 months. Once I get the VELscope results, we will take them back to Mayo and show them as we are due back there next week for some breast surgery. I have already made my decision though that if VELscope looks abnormal, I am going to Sloan in NYC, and NOT dealing with Mayo for that. All this decision stuff is difficult. I am fucking exhausted, emotionally and physically. I truly am.

#23476 07-14-2007 12:11 AM
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Hi all..

Just a quick update. Mayo performed 2 biopsies. One on my breast and they also removed chain of nodes under my arm. Breast biopsy came back fine and we are still waiting on the lymph node results. Mayo is treating this is "Chronic Pain" and has me on the meds mentioned in my above post. They will not do a biopsy as they see nothing to biopsy. When I questioned this feeling of having a mass feeling where my wisdom tooth used to be, Mayo's explanation was it was a bone. Right next to the mass I have a red patch on the roof of my mouth which is back again. Jerry did VELscope and it appeared it looked ok. As of this week my nose where your nostrils are, on the top of that area is black and blue. Two lines of black and blue and also on my upper cheek where I feel this mass. My neck is swollen, I have a sore throat all the time, not to mention the ear pain. All scans and blood work have come back ok. The area where I feel pain is not a good area for MRI because of the filling in my mouth. PET scan came back ok.

I follow up with my Doctors home who are not happy about Mayo's diagnosis. They are sending me to John Hopkins On July 18th. I do understand it is an excellent hospital but that is all I know. I will be starting with an ENT Doctor and then I do not know. Nice thing about this is John Hopkins is a 4 hour car ride instead of Mayo being a 3 hour plane ride.

So my questions...

Has anyone been there that can give me feedback?
Also, does cancer of the head and neck show up somewhere in blood work? Or just scans?


Thanks for being there!

Jennifer

#23477 07-15-2007 05:11 PM
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Hey Jen-

Sorry I can't answer your questions but continue to follow your gut. YOu know your body better than anyone!! Good luck and thanks for all of the updates. Can you take somthing (ambien) to help you sleep?


SCC-tongueT3N0M0- IMRT 35times-1/07-3/07; along with one cycle of Cisplat & one cycle of Carboplat; weekly erbitux.finished all tx.3/07-supposedly gone. Recurrence 6/07. Age 31-non-smoker/social drinker. Devastated it's back.
#23478 07-15-2007 05:26 PM
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Jen

don't quote me ..but I dont think it shows in blood work ..at least mine didn't. I understand what you mean though . I have a mass in my left jaw and it dosent show up on any xrays , pet scans or cts. But you can see it plain as day and feel it ... GO FIGURE !! They have determined it is a neuroma ( which is a tumor in the nerves) sooo now they are trying to treat that and I am being sent to a Neuro. I dunno !! But I agree we know our bodies best and we need to listen to them..Drs are only human and they do make mistakes soooooooo listen to yourself !!!


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#23479 07-15-2007 05:41 PM
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Jennifer --

For what it's worth: According to the latest rankings by US News (out this week), Johns Hopkins is #1 in the country for ear, nose and throat -- and has been for a number of years.

My husband gets checked at Hopkins every few months, and there are other Hopkins patients/caregivers who post here as well.

-- Leslie


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
#23480 07-16-2007 06:09 AM
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Thanks all for the support.

Leslie? May I ask where you have stayed? The only place I found available was a Best Western on O'Donnel St? I hear it's not in the safest part of town. Everything is booked up and I really have no clue how long I will be there. I know my first Appt is on Wednesday at 2:30. I find it ironic that Mayo Clinic is sending me to John Hopkins.

I am listening to my body plus the meds they have given me are not working. I just jumped on the scale this morning curious on knowing what I weighed and I am down to 109 from 125 2 weeks ago. My left face is swollen, very bad ear pain, and my head pressure is enourmous.

All in all I feel terrible.

#23481 07-16-2007 11:30 AM
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Hi, Jen,

I am new to the board and haven't even introduced myself yet but wanted to respond to you as my husband is being treated at Johns Hopkins. As soon as he was diagnosed with SCC (originated in tonsils), I spent a lot of time doing research on where he could get treatment from a center that had a throat and neck cancer clinic. We live in Maryland so Johns Hopkins not only stood out in terms of reputation but was relatively convenient for us. We are extremely pleased with our experience so far which has included a biopsy, insertion of peg, insertion of a Hickman port for chemo, and 2 weeks of induction chemo (after that my husband will have radiation/chemo combined). We really like our entire team of doctors and the RNs and other staff are terrific. I stayed at the Admiral Fell Inn one night (an historic inn on the waterfront 1 mile from hospital at Fells Point- a fun and safe area of Baltimore). Other options that are not very far away are located in the Inner Harbor area. Not sure if you found the place on the Hopkins website where they mention hotels that give patients a discount. That's how I found the place I stayed.


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
#23482 07-16-2007 02:25 PM
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Thank you Sophie for the info. Yes, I saw what you have mentioned about the hotels and such. However, there is some kind of convention going on and all places seem booked. The best they could find( John Hopkins out of state patient network advisor) was this Best Western place about 15 miles from John Hopkins. I will be arriving on Wednesday July 18th at 11:00 am. My first appt with the ENT is at 2:30 that same day. I have no clue how long I will be there for. If you need someone to vent to or just talk, I will be there in case you would like to call. I understand 100% your frusturation on how the Doctors could have missed your husbands cancer. I am going through a goose egg hunt myself. I am hoping John Hopkins can help.

My number is 732 887 2983

Thanks again

#23483 07-16-2007 02:32 PM
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Jennifer --

We live about an hour south of Baltimore, so it's an easy drive for us. Sorry I couldn't help you!

-- Leslie


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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