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| | Joined: Sep 2012 Posts: 1 Member | OP  Member
Joined: Sep 2012 Posts: 1 | Hi All -
I've been living w/ACC for 10 yrs, w/mets to lungs 4-5x times now, I forgot. If you can believe that. Just had my yearly scan and it's back again in my left lung. Inoperable this time due to location and leary of undergoing more radiations. Between the initial 35,pet scans, cat scans, xrays and 4 sterotactic on lung, I can light up NYC. Afraid of secondary cancers b/c of all the radiation. Looking for alternatives now. Meeting w/Dr.Posner from Mt.Sinai next week for suggestions. Tired of battling but I have 2 kids (12 and 10) who still need their Mom. I'm a single parent and that doesn't help but it is what it is. So yes, the new normal is had to live w/much facial disfigurement but I'm not ready to go yet. Hang in there and Happy Thanksgiving. | | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Welcome to our forum, kgirl. I am not familiar with ACC, but am glad to hear that you will be seeing Dr. Posner - he is one of the top researchers in the field.
Happy T-giving to you and your children - and here's hoping that you get the balloons in the Macy's parade!
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF. So sorry to read about your situation. Being a single parent is not easy, I am one too. Being a single parent with multiple recurrences makes it so much more difficult.
Hope your upcoming apt. gives you some options. Im not that familiar with ACC but there are some here who have that type of OC. With SCC OC, the only scientifically proven treatments that work are surgery and radiation with or without chemo. This could be the same for ACC.
best wishes with everything!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | |
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