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Joined: Nov 2002
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I am an Oral Cancer Survivor and have just found a painful lump in the back of my upper pallet. I wear an obdurator now and have a small opening left from a previous surgery. My last CT Scan was 5/6 months ago. I only waited 3 days and then was able to get in to a General Dentist this morning and am on Pencillin now. I called Head and Neck in Chicago and was told there is a 4 months wait for an appointment with my Oncoligist. Then they said his assistant would call back, that was Monday, today is Wednesday.

My plan of action is, I will take the Pencillin until early next week. If it has not changed then I will make an appointment with a Maio Facial Doc and get a Biopsy. I am not going to be jacked around for to months and told I am not sick enough to see the best Doc in my area.

Cripes, this is not fair.

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Would you like a referral to someone else in Chicago? Because you are a previous OC patient, you have to be very vigilant which it appears you are being. PM me directly and I will bet the bushes for you at UIC.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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No one should have to wait four months for an appointment, especially a cancer survivor. And this is your oncologist. That is criminal.

I hope you have taken or will take Brian up on his offer. Since you haven't posted again, I hope you come back soon.


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"
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Hello,

Well my daughter works for a Dentist and I went back yesterday and it is way smaller and not painful. He wants me to wait 10 more days and not bother about it if it is gone. The more I think about that---that is not my way of thinking. This all surfaced Memorial Day Weekend, that is when I decided I needed to see someone.

So............ I do have an appointment with my Oncoligist at Northwestern in August.

Today I made an appointment with the Maxio guy in Highland Park that did the biopsy the last time. That is next Tuesday. I am trying to remain positive and do what they say. However, I am not sure I want to wait, rather bite the bullet and get into someone that will tell me sooner rather than later. I know he will get me in to the Onco qujicklyt if need be.

Mary Jeanne
Was told I was all clear last December. 8 year survivor.

Last edited by Mary Jeanne; 06-09-2010 12:21 PM.
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Mary Jeanne ,
I'm shocked that it would take that long for a survivor to be seen at a top CCC.
I was treated at the other CCC in the Chicago area, at the University of Chicago. I can give you some names to contact there if you'd like.

Chuck


SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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I was finally able to talk to someone at Northwestern and they have advised me to go to the Maxio Dr. Tuesday. At that point they say they have a really good working relationship with him and if need be have him do a boipsy. They say he is really good at looking at things and has a history of good decisions. Then, if need be call and they can get me in downtown quickly.

In the meantime I want to keep all appointments and proceed as fast as I can.

I had no choice but to keep leaving messages and it just seemed harder this time to get the clerical staff to get me to someone that could give me answers.

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Hopefully you'll get some good news tomorrow. I'll keep you in my thoughts and prayers.


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

I have had several appointments, all very positive. My General Denist is convinced that I should not be concerned. I went to the Maxio, finally got an appointment, and he looked at it and does not think I need a biopsy. Then when I was still concerned he made an appointment with my Prostidontist. My Prostidontist is also very positive and commented that he has 20 years experience and my mouth is fine and the pallet is consistent with aging. I was still in a "need to know" mode and insisted on a Cath Scan. I should be getting the paper work on that and then can make an appointment and then all my fears will be gone. That is the point, it is my body, I have had Cancer and I intend to be proactive. The only problem is that I am a really nice woman and need to change my personaltiy in order to get resilts. I hate that, they need to listen to me and do what I say, I am the Boss and they are my Employee's. East to say, hard for me to do.

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My husband's thought process is......they need to think about it as if it was THEIR OWN spouse. They would be pushing for the same thing then.

Hoping for a great outcome!


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
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I asked my RO that once. I looked him right in the eye and said "If your sitting right here in my shoes, what would you do?"
He gave that a little more thought.

I found my cancer be being insistent with my doctors (whom I liked and respected) that I wanted to know what it was. I did not want to take a wait and see approach and I did not want to try going on anti-virals for a few weeks to see is they worked.

I am amazed you cannot get a biopsy for peace of mind.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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