| Joined: Aug 2013 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2013 Posts: 31 | Thank you guys, I was a dissapointed by the wait and see as well, I thought of just paying to see an ENT but then I wouldnt be able to afford any tests. Wish there was a way to spead up the refferal process but at least I am getting one. I am thinking I will call and reschedule my appointment and just tell them I need something sooner, hopefully that will work. That way at least maybe I am only waiting a week or a week and a half to have scheduling for it to be removed and tested. The other issue is I am coming into my 35 week of pregnany, this was the last thing I needed to worry about but at the very least I can be thankful that if it is bad news, I wont have to worry about pregnancy preventing treatment anf proper testing.
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
| | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | "OCF Canuck" Senior Member (100+ posts) Joined: Sep 2013 Posts: 105 | Hi Angel, do everything in your power to see the ENT sooner. they are the ones who can do a CT scan, read it and know what to do next. Hoping it is inflamation or an infection but you need to know for sure. Yes call, tell the receptionist you need to speak to the doctor if they don't book you a referal sooner. Thoughts are with you, Sophie
husband 61@diagnosis painter 6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis 17/9/13 Dx(moderately aggressive) 24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube 2/01/14 (30 tx)rads 60gy N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes) Clear margin, close 2mm inner cheek 15/05/14 cellulitis 3/12/14 Chest CT Clear 27/02/15 cellulitis 8/6/15 cellulitis 10/6/15 Osteomyelitis
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Oh Angel - I'm so sorry you are having to go thru all this stress, but please listen to Sophie and everyone else above and get to the ENT. Doctors and their office people have a way of moving appointments around and getting you in sooner. If you are too gentle and compliant with the way they treat you, they may not realize how serious this is. Cry a little if you have to. Or have someone close to you, call and be forceful (but polite) about getting a sooner appointment. When my son was first diagnosed, he had an appointment two weeks away and I was such a basket case that I even had trouble talking on the phone and making myself understood, so when my son's ex-wife called to see how my son was doing, and saw the state I was in, she called and got the appointment moved up to the next business day (from Friday to Monday)! You deserve the very best treatment and so does your expected baby. Get back to us and let us know what's happening. DO IT!
Last edited by Anne-Marie; 02-17-2014 03:54 AM. Reason: typo
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Aug 2013 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2013 Posts: 31 | I am trying but luck is not on my side at the moment. Nothing has worked.. even my PCP appointment got messed up, it was suppose to be Wednesday but they had a fill in who scheduled me and she messed it up and made it for next week. I told them it wasnt fair, she confirmed it with me... they basically just said oh well and wouldnt see me till next week. I cried in the office because its all so frustrating, I just need a referral to an ENT. I am just trying not to dwell on it now because I started giving myself panic attacks again. I tried to move up my oral surgeon appt. but he wont be in the office all next week. So I just decided if it bothers me to much, the waiting that is I could always go to ER and see if I can get something accomplished that way.. but with 2 little ones thats the last thing I want to do.
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
| | | | 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 | I would ask to speak directly to the doctor about the appointment mix up. Often the doctor doesnt know about those types of things. Many times the office staff are like rabid dogs guarding the appointment book and the doc has no idea a patient desperately needs their help. The squeaky wheel is who gets the action so stand up for yourself and in a nice way demand better of them. Im all for advocating for yourself but always be careful with your tone and manner, kindness and tactfulness usually will win them over to take a few seconds to understand your situation and empathize with you. I agree, if it gets too bad go to the ER for help. Nobody should suffer and not see a doc when they are in this kind of situation.
Hang in there! 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: Aug 2013 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2013 Posts: 31 | Hey guys, just a quick update. I went to urgent care and he said he was surprised I even found it and put me on anitbiotics. Yeah... that didnt go so well. However had my PCP appt. she was great, she said she saw it when she walked into the room. Amazing how two people can have such different opinions. I have my referral for ENT, said it would take 3-5 days to process with an order for a neck ultrasound when I get in. She did some blood work as well because she thinks it could possibly be my thyroid. I am just happy to have care without being looked at as a crazy hypochondriac. Thanks so much and will let you all know my results when its all said and done.
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
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Jessica glad your appointment will be soon and that you have a good PCP (who is apparently NOT vision impaired). Best wishes to you and your kids. Maria Warning: Doctor Joke.
What do you call the person who graduated at the top of their class? Doctor. What do you call the person who graduated at the bottom of their class. Doctor.
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: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | "OCF Canuck" Senior Member (100+ posts) Joined: Sep 2013 Posts: 105 | Hi Jessica, Just sending toughts to you and your family. How are you? I sure hope you have help for you and all the children.
husband 61@diagnosis painter 6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis 17/9/13 Dx(moderately aggressive) 24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube 2/01/14 (30 tx)rads 60gy N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes) Clear margin, close 2mm inner cheek 15/05/14 cellulitis 3/12/14 Chest CT Clear 27/02/15 cellulitis 8/6/15 cellulitis 10/6/15 Osteomyelitis
| | | | Joined: Aug 2013 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2013 Posts: 31 | Hey guys, no one wanted to do anything till baby was born, he was born on the 20th, 7lbs 14 oz and healthy (thank God). Lymph Node is still enlarged so I have a date set for April 17, they are just going to take it out and send it for biopsy. I am hoping its nothing but if it turns out to be cancer then I have to go through radiation and possibly chemo with it. Very nervous about all of it, but hoping for the best. Thanks so much!
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
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Congratulations on the birth of you son, Angelsrock! That he was born healthy is a real blessing that all too many people overlook. Your current situation gives you a new perspective on how precious good health is, one you are not likely ever to forget.
I know it won't be easy to put your upcoming surgery and biopsy out of your mind, but now you have an alternate point that you can focus your mental energy upon; that being your new born, healthy son.
Focus on the happiness that is unique to motherhood, and when you start to feel blue, banish those thoughts with that happiness. No one and nothing can take that from you.
And when your thoughts turn to your own condition, channel them into a firm resolve to beat this cancer, no matter what it takes.
Do not let worry creep into your thoughts. It will try, but by being vigilant, you can firmly take charge and turn those thoughts into understanding that what will be, will be; and whatever that is, you are going to get through it and be there for your son.
Best of luck to you and your family,
Bart
Last edited by Bart; 04-07-2014 08:42 AM.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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