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Joined: Aug 2013
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Thank you, the doctors said they want another scan done since the tech didn't do the imaging right they want 1ml slices and he did 5 ml slices. So that is first on my list, then they said surgery after I am out of my third trimester. Should I just take this route or seek out a CCC? I did try to call a CCC but they weren't helpful or I am just not asking the right questions. I meant first trimester! Geez my mind is going lol

Last edited by angelsrock; 08-20-2013 06:17 PM.

DX with MEC salivary gland 8/20/2013 age 27 F 9 weeks pregnant
Jessica, Mother to a 4 and 9 year old
11/18/2013 surgery to removed tumor, including bilateral jaw muscle. 2nd Trimester.
12/2/2013 results came back for clear margins
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Dang! Sorry to hear the news. A 2nd opinion is definitely prudent, especially with a rare cancer. Once you have the scan done, ask for your medical records and tests results.

When I contacted Johns Hopkins, they were beyond helpful, even helping to acquire some of my test results. After my initial contact I was put in contact directly with the head of the Sidney Kimmel Cancer Center and she arranged everything. You have time. Contact them or another CCC and explain your situation/diagnosis and that you want a 2nd opinion. Information and knowledge of your cancer is your best ally.

Here is a list of cancer hospital ratings
http://health.usnews.com/best-hospitals/rankings/cancer

Positive thoughts and prayers

"T"

Last edited by fishmanpa; 08-20-2013 05:01 PM. Reason: added link

57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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A 2nd opinion is always good, and down the line won't regret you didn't like some do. You need to have faith and trust in your doctor(s), hopefully with your type cancer experience, whoever you choose, be it the ones you are seeing or a new one, don't 2nd guess yourself after that. A high volume CCC has many advantages, including survival, over one that is not. The NCCN, NCI, have listings of their approved CCC, and U.S. News Report has a yeary listing of the top hospitals in 16 specialties, including Oncology, and ENT, but these listings are not all inclusive, and many hospitals, in fact any can call themselves a CCC or CC, which name is not trademarked, can be a CCC with a team approach, with multidisplinsr doctors, and support staff. Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Hi how far into your pregnancy are you? I'm sorry for the news - I would go the route of the CCC- you are pregnant which complicates things.do a little research and hopefully you'll have a cleared picture, there are some here with MEC hopefully they will be along with an answer. Hugs. We're here.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Thanks I am 9 weeks and fixed my error up there, have to wait till first trimester is over. I will look into the CCC in Houston, it's about 2 1/2 hous away.


DX with MEC salivary gland 8/20/2013 age 27 F 9 weeks pregnant
Jessica, Mother to a 4 and 9 year old
11/18/2013 surgery to removed tumor, including bilateral jaw muscle. 2nd Trimester.
12/2/2013 results came back for clear margins
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Im very sorry to hear of your cancer diagnosis!!! If you must try to look on the bright side, from what I understand, Mucoepidermoid carcinoma is slower moving than the type I had (SCC). I actually have a friend who lives in San Antonio who had the same type of OC. She would be a great person to help you with info as she is local to you.

A Comprehensive Cancer Center would be the very best place to go as soon as you can.

Please give up the tobacco usage right away. Im sure you are in shock right now but it will only make things worse for you by continuing to smoke.

PS.... I have sent you a message with info to help you add a signature. Click on the small flashing envelope next to the "My Stuff" tab (towards the top in the center of the screen).


Christine
SCC 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 smile
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I send you a private message....


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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I don't know if they still do this but when I was diagnosed 10 years ago MD Anderson in Houston allowed doctor-to-doctor review as a second opinion. I was setting everything up with the Head and Neck department and the head of the department called me to tell me he sent people in my area to my doctor in Dallas for second opinions and he concurred 100% with my treatment plan. It was reassuring and my doctor was fine with me having done that. He even thanked me for taking the extra step for my comfort and confidence. He even said if a doctor ever gets mad at a patient for doing that...run fast to another' doctor.

Last edited by Uptown; 08-21-2013 03:25 AM. Reason: iPad outsmarted me.

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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"OCF Canuck"
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Md Anderson is a top CCC if you can get in there I would - after surgery if they feel more treatment is required they should have a hope lodge on site or nearby where you can stay week days to cutdown on the commute.. hugs and best of luck.

Last edited by Cheryld; 08-21-2013 04:23 AM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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