#24207 08-30-2007 08:37 PM | Joined: Aug 2007 Posts: 1 Member | OP  Member
Joined: Aug 2007 Posts: 1 | Hi, my name is Stephanie, I'm a 29 year old mother of 1, and I was diagnosed on 5/9/07 with ACC (Adenoid Cystic Carcinoma). I had a tumor in one of my major salivary glands which was removed, after many reassurances from many different doctors that it was probably nothing because of my age, but that turned out to be cancer. It's still weird to use that word to describe myself. I had the surgery to have the tumor removed, which was successful. However, there was extensive perineural invasion (meaning it's spread into my nerves). I've undergone Proton radiation at UF & Shands hospital in Jacksonville. I finished that 6 weeks ago, but just feel like I'm kind of in limbo. It's been hard to find much information on this. Is there anyone out there who is in a similar situation? Or hopefully knows more about this than I do? I've never posted anyting on a site like this or done any talking to people I don't know via the internet, so this is kinda new to me. Can anyone help?
Stephanie | | |
#24208 08-31-2007 12:36 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Stephanie,
and welcome to the forum. ACC is not as common here as SCC but I believe that some here have had it so be patient waiting for a specific response.
We can certainly relate to your feeling in "limbo", that's a common denominator for most of us. Fear is also a common denominator.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#24209 08-31-2007 04:53 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi Stephanie
Welcolm to OCF hope you find all the support and information you want and need.Any emotional issues are pretty much the same for all these cancers so you wont be short of help in that department.
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#24210 08-31-2007 05:46 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Stephanie,
Welcome to the forum. As Gary, says, most of us had SCC. If you use the search engines, you may be able to find some memebers with ACC. The one at the top of the page searches the forum and the one at the bottom searches the main site for info. We are here to help you in any way we can.
Take care,
Eileen
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Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#24211 08-31-2007 11:40 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Welcome Stephanie
I'm sorry you have been dealing with cancer at your young age. This site offers wonderful support for us regarding living with cancer as well as dealing with the emotional aspects.
I have found solace here from the knowledgeable and giving membership. Have you visited the main site here - it offers a great deal of factual information.
Best wishes for your recovery, love from Helen
RHTonsil SCC Stage IV tx completed May 03
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#24212 08-31-2007 12:22 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Dear Stephanie, The word "cancer" strikes fear in the heart of any person diagnosed. Emotional support and talking to the "been there-done that" crowd will help you. Hopefully you will find some info on ACC, but I know you will find emotional support here if you stick with us. Yes, We are a Cyber family - and we are a strong family  AThere are many welcoming arms here. Amy in the Ozarks.
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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