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

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!!!

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

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

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...!

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 !

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.

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

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?

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 !!!