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#17180 03-18-2005 08:57 AM
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my name is alicia and i live in new orleans.i'm newly married and have recently returned to college after nearly 15 years of struggling with clinical depression-in & out-of psych hospitals. I underwent 2 series of ECT treatments and finally began to enjoy life,truely appreciated being alive.I have a diagnoses of interstitial cytitus,a bladder condition that causes symptoms similiar to having a really bad urinary tract infection but is permanent .I live with severe bladder pain and urinary frequency on a daily basis. I rcently have recieved good treatment for this condition including good pain management with the top pain Dr. in New ORleans. This had allowed me to return to school. I am curretly enrolled in the honors program and Honors Society with a 4.0 GPA. NOW THIS!!! I felt a knot sort of, in my neck.


alicia arnold
#17181 03-18-2005 09:07 AM
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ALICIA-IN NOLA (Cont'd)
SORRY! New to this board!
I saw a primary care Dr, who refered me for an ultrasound of my neck. TThe radiologist cannot determine whether these nodules are lymph nodes or some sort of growth. I now have an appointment for a biopsy on the 29th of March. I am truly scared. It seems I've come so far to another serious medical condition to have to cope with. My father recently recovered from oral cancer-squarmous cell variety. He opted for radiation and chemo. He's now cancer free! Any advice or knowledge shared would be greatly appreciated. Sincerely Alicia.
P.S. This board has already helped with the insight and sincerity contained within. Thanks in advance.


alicia arnold
#17182 03-18-2005 11:07 AM
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Alicia
You'll see it many times here - it's not anything until they tell you it's something. I recently found a knot on the back of my neck, flipped out for a couple days, and then realized I can't do anything until the confirm/deny it.
And just to give you some encouragement - they think it's just a musclular knot that won't give. You could very well have the same issue.
And there's many, many other explanations for bumps and lumps. As long as you're being diligent on having it checked out, you're doing exactly what you need to.

Sabrina

#17183 03-18-2005 11:18 AM
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alicia, welcome to the board, sorry you had to find us. Hopefully, the tests will show that you have an infection or some other malady that is easily treated. If not, your fathers experience will give you some knowledge and we are here to help you through any treatments you may need.

Are you being seen at a comprehensive cancer center? If not, I would suggest you get to one as inexperienced doctors have caused problems for more than one patient on this board. You really have one good chance to beat this disease and the best strategy is to hit it with everything you can from the beginning. The team at a cancer center has the experience to direct you if your situation turns out to be cancer. I had three months of testing before they finally confirmed cancer and then they couldn't find the primary site until after they did a tonsilectomy. And that was with a doctor (an ENT) that was very aware of head and neck cancer. So please get to a cancer center.

The biopsy was done with a fine needle inserted into the lump and tissue was attempted to be withdrawn. Unfortunately, it took a few other attempts, CT scans, PET scans and an MRI before finally a sonogram directed large needle biopsy was performed to confirm SCC carcinoma. None of it was painful or anything, just took a lot of time to get it all done.

Would suggest you try to not worry because we have a saying on the board, it's not cancer until the pathologist says it is. Take it one day at a time until you know if there is anything to worry about. I know its easy for me to say this, I am not looking forward to a test that may indicate that I have cancer, but take it from someone who has been there, don't worry about things until it is confirmed you need to because worrying won't change anything.

Good luck and will be thinking about you on the 29th.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#17184 03-18-2005 12:20 PM
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DON'T PANIC, STAY CALM, even if you receive a diagnosis of cancer from a highly skilled pathologist. I firmly believe that a positive attitude has a positive impact. Just DON'T let the surgical docs start cutting until you have exhausted every other approach...
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#17185 03-18-2005 04:02 PM
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Hi Alicia,
Be sure to go to a cancer center that will have a full team to treat you if you do get a diagnosis of cancer.
If you do receive a diagnosis please don't fear surgery, many of us on here had surgery as part of our treatment and we're fine.
I'm keeping my fingers crossed it will be nothing and you won't have to worry about ANY of this!!
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#17186 03-19-2005 11:12 AM
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thanks to all,
i did undergo bloodwork to check for thyriod function as well as a "CBC". These tests were all the normal range (it seems like an infectious process would have shown up in my white blood count- it was not elavated.)No raised temperature either.I know i shouldn't allow myself,on an intellectual level,to get myself upset over this until i find out something definite.However,eomtionally,i am pretty scared.After my father's oral cancer( his lymph nodes also involved) being so recent,my Dr.'s insistence on everything being done ASAP,being a smoker for around 15 years and doing my best to educate myself so i can get off of Social Security disabilty the mere possibily of cancer has got me abit overwhelmed.This post's has helped already to express my fear.
I'm seeing the Dr.'s here at TULANE UNIVERSITY hospital and clinic because they accept Medicare and Medicaid,treat my interstial csytitus, and it's only a streetcar away.I think steetcars are referred to as trolleys elsewere.New Orleans is like livin' in a whole other country! Ya'll are right I must live in moment and no patholgist has confirmed anything.I do not have kids but I do have a dog named MOLLY who's gazeing longingly towards me lookin' like she's ready for a nice long walk to the park.I know,I am.
I'll keep in touch with the results.thanks again and I'll be praying for all that involved in the "ORAL CANCER FOUNDATION" FORUM SINCERELY,Alicia


alicia arnold
#17187 03-20-2005 02:59 PM
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Alicia,

Welcome to the neighborhood and I sincerely hope your time here is only a visit because of good news. You would not be human if you didn't worry at the mere possibility of the big C word. I believe I was one of the most fortunate cancer victims because the possibility was never even discussed until I had an incisional biopsy that started out as surgery to remove the lump in my neck. When I got the phone call on a Monday it was devastating news but things kicked into high gear adn I was set to start treatment with 2 weeks. As I look back, I realize that to try and avoid any worry until they positively confirm it is cancer is the best way to go. Now, if I can only remember that when I get the occasional lumps and pains in my neck, all will be better!

Keep pushing things forward until you get the results you need to move on. Best wishes to you.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023

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