| Joined: Jan 2016 Posts: 14 Member | OP Member Joined: Jan 2016 Posts: 14 | Hello there. I just had a biopsy done on Monday and was told it was oral cancer yesterday. I don't know anything else yet. Thus, I haven't told anyone. I'm 26 years old. I suppose this is the shock stage. But, that's not really an introduction. My name is Amanda. I live in Massachusetts. I'm originally from Louisiana, where all of my family is. I love travel, photography, coffee and anything that allows me to be outdoors. I'm still working on my undergrad degree in archaeology. I love languages and music, poetry and reading. I'm in love with an incredible man. We live together. His birthday is Sunday and well, I didn't want to ruin it so I'm holding off on telling him. That makes me feel selfish.
This is going to be psychologically and emotionally exhausting, this whole cancer thing. It doesn't seem real. Not that I want it to? I'm just... numb. The doctor called yesterday right after work. He said, "Well, I wish I had better news for you" and it felt like all of the air left my body. I just said, "oh". I have an appointment Monday with an ear, nose and throat specialist. I have no idea what to expect. I'm guessing tests to get a full diagnosis? Then probably building a treatment plan?
I'm supposed to start school again on Tuesday.
So, that's where I'm at. I don't have many (any) close friends here in the north so I thought it would be best to reach out starting now. I know myself. I want to believe I can do anything on my own but this, this I know I can't. Anyhow. Feel free to message me. I'd love to get to know you and hear your story.
Last edited by ALK; 01-15-2016 04:04 PM.
| | | | 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, Amanda! You are the same age as my son. Im so glad you have found us when first diagnosed. We will help you with info and support thru your upcoming treatment plan and recovery. Im glad to hear you have someone close to you that is able to be with you. This can be incredibly difficult for not only the patient but also on those who help care for them. Here is a link that is packed with info about oral cancer. Its a good idea to read up and learn about what you have so you can be a strong advocate for yourself. OCF main pages info Check in often to read and post your concerns and questions. We are in your corner  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 | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Amanda, I'm sorry to read this. I know all to well that awful feeling when you are told this news. Please get yourself to a Comprehensive Cancer Centre. These big centerrs have a tumour board and do a team approach to treatment. Research shows that they get better outcomes for their patients. Please also tell your Parents. If you were my 26 year old I would want to know and I would do all I could to help and support you through this. You will most likely need both physical and emotional support to get through this. I am not in the USA, but someone here will tell you which are the CCC's. At least get a second opinion before starting any treatment Thinking of you, Tammy.
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Welcome, Amanda!
Not much more to add other than what was already said, but your ENT will do a complete head and neck exam, including with fiber optics, order a CT or MRI, and others, in order to make a clinical diagnosis and staging of the cancer, which will help determine the course of treatment, and be presented to a tumor board, if at what some are deemed a cancer center or comprehensive cancer cancer, which include a team of multidisciplinary Doctors and clinical staff.
Everything will seem come fast and furious at times, then it can be hurry-up and wait depending where you are. Massachusetts have great hospitals, and have seen them listed in cancer center listings such as the NCCN, NCI, and top rated by U.S. News Reports Best Hospitals. Of course, depending on insurances, other matters, you're not just limited there, and some do travel throughout the country, more specifically to MD Anderson or NYC, staying at ACS Hope Lodges or other accommodations that hospitals may be set aside for patients.
I came across something in general that was meant for caregivers, but added some things that have helped me or think it would have helped me in the process at certain stages from diagnoses to treatment.
1. Plan ahead 2. Get a 2nd opinion 3. Learn about available resources 4. Educate yourself about this disease 5. Take one day at a time 6. Develop contingency plans 7. Accept Help 8. Do some type of light exercise 9. Get enough sleep and rest 10. Make time for leisure 11. Share your feelings with others
I hope this helps, and 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
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hello Amanda - Welcome to the forum. You have already received a lot of valuable suggestions to get busy with; so I won't address them.
What I will tell you is of course you will experience some discomfort over the next few months. It might be what you consider a lot or it might not be so bad. Mine wasn't bad at all. It's not bad for everyone. I live alone and didn't have a caregiver, but I did have a lot of friends willing to help and I had this wonderful OCF support group to communicate with literally on a daily basis. These guys are who got me through the disease. They (and I) will do the same for you.
So, get busy studying and learning about your disease and treatment. The more you know the better patient advocate you will be for yourself and the better results you will get from your treatment. Don't be afraid to ask the doctor (and the nurses) as many questions as you want and keep asking until you are satisfied you understand the answer. Be the squeaky wheel if you need too.
Take care, try not to worry, we'll be watching out for you.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Jan 2016 Posts: 14 Member | OP Member Joined: Jan 2016 Posts: 14 | Thank you so much for your encouragement and responses! This has been a whirlwind of a week or so. Good news-I should only need surgery! I have a PET scan tomorrow morning but two different doctors believe it's early and small enough that I won't need radiation. I feel incredibly fortunate for this.
The most difficult thing has been seeing how this has affected those I love.
Amanda ________________________________ SCC Stage IV, L-Lateral Tongue T1N2bM0 Age at diagnosis: 26, HPV- Dx: Jan.14.2016 Surgery-Partial Glossectomy & MRND: Feb.10.2016 Port & PEG: March.16.2016 Rads: March.23.2016-May.9.2016 Cisplatin: March.23.2016 & April.13.2016
| | | | Joined: Jan 2016 Posts: 4 Member | Member Joined: Jan 2016 Posts: 4 | Hello, Amanda I too am new to this site. I am sorry for what you are going through. Stay strong and remember two things: you are a strong dynamic person and there are loads of people here and everywhere who can offer you support, advice and love. Best of luck. I am rooting for you!
Matthew 44 years old Former smoker 12/09 diag Stage IV SCC Nasopharyngeal 1/10 6 rnds cisspl/35 rad PEG tube 6 mo Xerostmia (permanent)/Loss of taste/smell 6 mos+ Clear PETs 2 years Clear MRI 2 more years 12/14 HPV pos SCC left tonsil 1/14 Tonsillectomy on left + one for clr mrgns 3/14 Removal left lymph nodes Ongoing-check ups and screening at ENT QOL overall good. New normals, but happy to be alive and learning more everyday to overcome fear and enjoy my life and my family.
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