| | Joined: Aug 2014 Posts: 4 Member | OP  Member
Joined: Aug 2014 Posts: 4 | Hi!
I am Rani. At age 22 I was diagnosed with ACC in my voice box. I was told that I was young for my age to be given this diagnosis and that the rate of occurrence is high. I am hoping to find others with the same diagnosis so that I can educate myself more. Reading statistics scare me. Even though the tumor has been removed I still feel like I am living with it every day minus going through treatments. Currently I feel very isolated but I am looking forward to meeting others to help me feel less alone.
Rani, 28
ACC 9/2008 Voice Box
No Rad at this time
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Rani - I'm very sorry to read this, especially from someone so young. But you've found a great source of information and support here at OCF. Welcome to our family.
I know how tempting it can be to read everything on the web you can get your hands on. But I'd caution you to do it with a grain of salt. Statistics are simply that, an aggregate. I'm no scientist but I think everyone here will tell you the same thing. We're all different, and you can't base your life on what you find in numbers.
You didn't tell us where you're located (that's fine if you prefer not to of course) or if your doctors have suggested any follow up treatment.
I'm sure people with your specific condition will find this post and offer more concrete advice. I'm sending every good vibe your way!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF! You have found the best place for info and support. What you have been thru is very traumatic, especially at such a young age. Many cancer patients experience PTSS and seek a therapist to help them get past everything.
Hang in there, you are not alone.
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  | | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Rani, I'm truly sorry to hear you are experiencing this. There aren't a lot of ACC folks here but I could message you contact info for some. There are some resources, forums and Facebook groups with a lot of ACC survivors also if you are interested. There's a walk coming up in September near Chicago, I believe, if you want any info in that. Of course, we want you here, too.
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
| | | | | Joined: Aug 2014 Posts: 4 Member | | OP Member
Joined: Aug 2014 Posts: 4 | Hi David2.
Thank you for your kind words. I do try to remember that what I read online is based a lot on studies that are not the whole picture. It's just hard to not get caught up in it sometimes.
I am in Salt Lake City, UT. I have been seeing my doctor every 6 months for scopes and scans. Neither of us seem comfortable moving it past that at this point. I have been maintaining that care for about the past 3 years.
Because I was so overwhelmed with the whole process as I was going through it I feel like I have missed a lot of the details but I am sure that my story will continue and I will be able to pay more attention.
Rani, 28
ACC 9/2008 Voice Box
No Rad at this time
| | | | | Joined: Aug 2014 Posts: 4 Member | | OP Member
Joined: Aug 2014 Posts: 4 | Thanks for the suggestion about the PTSS Christine! I have wondered about that but thought it was my own paranoia's from other conditions. I will definitely look into a new therapist that can help me with that. The last therapist I had laughed at me several times during my last session so I haven't been back. 
Rani, 28
ACC 9/2008 Voice Box
No Rad at this time
| | | | | Joined: Aug 2014 Posts: 4 Member | | OP Member
Joined: Aug 2014 Posts: 4 | Uptown,
I would love some extra information! The contacts and the walk would be great. I don't think that I would be able to make it out this year but maybe in an upcoming year. I have been living in a fog up to this point and now I am ready to start taking control of my own life and destiny.
Rani, 28
ACC 9/2008 Voice Box
No Rad at this time
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | You also might want to get another opinion from a Comprehensive Cancer Center just to see what they say.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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