#15499 05-23-2004 09:50 AM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Hi, my name is Nancy and this is the first time I've written so I'm a little nervous (don't ask me why, but I am). I've been reading all the posts since April when I stumbled on this website but haven't been brave enough to tell my story with battling SCC. I hope I don't bore you or ramble on too much. I really wish I had found this site sooner than I did.
I was diagnosed with SCC Stage IV, base of tongue (T3 N2) on May 22, 2003. Nine days later my husband of almost 23 years passed away suddenly (we was only 56 and I'm 11 years younger than he was). So needless to say I was scared to death from the start. My son is 21 and is away at college so I guess you could say that not only was I the patient, but I was also the caregiver. I underwent surgery 6 weeks later on July 15, 2003 for a total glossectomy, free flap reconstruction (taken from my abdomen), and right and left neck dissection. They removed 34 lymph nodes from the left side - all negative - and 53 lumph nodes from the right side - 5 were positive. I spent 2 weeks at Mt. Sinai hospital and then was transferred to a step down facility (a nursing home in my case) for another 2 weeks. After healing and recooperating for about 6 weeks I underwent 37 treaments of radiation and 3 treatments of chemo (Cisplatin). I was also given a daily shot (in the upper hip area) of amifostine to try to save as much salivary function as possible. I finished treatments on November 6, 2003. I had all the same crummy symptoms of nausea, dry mouth, tiredness, etc., etc., and now I still have constant ringing in my ears, jolts of pain from my jaw up to my ears and am still tired which is one of the most frustrating symptoms that seems to be lingering on a lot longer than I would like. After 8 1/2 months I had my trach and feeding tube removed. My feeding tube never gave me a problem except that it was cumbersome and at times it got in the way. Even so, that feeding tube was a lifesaver for me before, during and after treatments.
Well, that's about it for now. Thanks for listening and I wish I had written sooner. You all are such knowledgeable, compassionate people and there are many times lately that I've needed to bounce a question off someone, a shoulder to cry on or just to vent my frustrations. I hope you don't mind if I do that occasionally although I don't like to make that a habit! I spend a lot of time just trying to stay positive and upbeat instead of letting this disease get the best of me. Thanks for being here and listening.
Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#15500 05-23-2004 09:58 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Nancy
Well by now you know more about us than we do about you.. you are here now so don't go away.. you know by now we are mostly crazy.. but you are welcome to join us.. we can offer shoulders to lean on or wall to bounce thing off.. don't you dare leave now.. want your input here.. it is important.. everyone of us facing this need to stay together..
love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#15501 05-23-2004 10:10 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Welcome to the club nobody wants to join Nancy!
Sounds like you had similer treatment as I did and in about the same time frame. It was no picnic. Don't hesitate to ask any question you want to. It seems someone will have an answer. I joined last July and was member #853. There are now over 1300 members.
One of the goals of the foundation is to get the word out about Oral Cancer. Most of us are DX in late stages of the disease due to lack of knowledge. You can go back and read some older posts about the stat's and survival percentages.
We like to not think about the numbers and think positive but the numbers don't lie.
I wish you nothing but good check-up's and please continue to post about your experiences. Those who follow
will gain knowledge about oral cancer which empowers them as they fight this battle.
Welcome again, Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#15502 05-23-2004 10:28 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Bless You Nancy...you have already suffered so much...keep on fighting . You will find lots of support here, these guys will become so important in your life..they have been through it all.. been knocked down and have come right back up again!
Danny Boy up there is a perfect example ..scared to death but generous to a fault with his time for others.
May your God go with you.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#15503 05-23-2004 10:33 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Dear Nancy,
Welcome! I, like Dan above, started reading here last year around August after my hubby had a partial glossectomy. Anyway, it's all been a frightening and hard experience, but coming to the board has helped me alot. I will pray for you...I cannot imagine how hard it was to lose a spouse right after diagnosis. But here you are, healing and making it. God gives us such strength even when we could never imagine having enough. You are truly an inspiration for the rest of us.
Take care!
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#15504 05-23-2004 03:09 PM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Dearest Nancy!!!
Welcome! I can't believe you've been hiding since April. You give me hope that I will be able to eat again. I had a near total glossectomy in November 03 with radiation and chemo in Jan 04. I struggle with eating, and choking, and swallowing. How did you cope? You are an inspiration to me as well. To loose your husband during your own battle and share with us your story honors us all.
Keep us posted with your progress. Don't be a stranger.
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#15505 05-23-2004 04:25 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Nancy I agree with Lynn you also give me hope that I may eat again...Yeah,,I am somewhat surprised that you waited so long to jump on, and we are thankful that you did. You have gone thru so much already, God love you. I just found the site, and it has already been so helpful to me and for me. I had to do something. The doctors dont have all the answers, people that are going thru it do. God Bless you Nancy you are among friends now....Always, Miss Vicki | | |
#15506 05-24-2004 06:33 AM | 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 | Hi Nancy!
Welcome to the club...nobody wants to join. I am so sorry for all you have had to endure. The important thing is that you are here, now, amongst all of us survivors and caregivers. We all lean on each other at times; we all hold each other up at times; and Lord knows, we have all had to vent our frustrations. You belong right here in the midst of us.
Thank you for sharing your story with us. As Lynn said, it is truly an honor.
Ed
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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#15507 05-24-2004 06:44 AM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 139 | Dear Nancy,
Welcome and thank you for your words of hope! I am so glad you joined us here as we always are willing to share and to listen. Thank you for trusting us to do that for you.
God bless
Judy U
Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
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#15508 05-24-2004 01:37 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Welcome Nancy!! We hope you do make it a habit of sticking around. You'll find a lot of hope here, plus I'm sure you'll be able to help us as well by sharing your experiences... God bless!
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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