#15055 03-30-2004 12:12 PM | Joined: Mar 2004 Posts: 4 Member | OP  Member
Joined: Mar 2004 Posts: 4 | posted March 30, 2004 05:31 PM
--------------------------------------------------------------------------------
Hi all. I am Melanie, sister to Linda, who has had two oral cancer surgeries and 6 weeks of radiation. The radiation did not kill the cancer, but her salivary glands and her mouth has been so sore that she has been on tube feeing since September 03. Having had what I guess is called "resection" in her left neck and a flap brought from behind left breast, half of her tongue removed, jaw split, etc. she says she feels like a "freak." Doubts she will ever again be able to eat by mouth and wonders if she can ever speak understandably again. The cancer was at the base of her tongue. I keep sending her the link to your website and hoping she will log on and share her fears with you and get some support. I think you are all SO COURAGEOUS!! I think I might just let the cancer have its way with me -- that the "cure" is worse than the disease. Of course I'm having my own mouth checked, too. We were both smokers for 40 years and drinkers also for a number of those years. | | |
#15056 03-30-2004 03:36 PM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 139 | Hi Melanie,
I am so glad to meet you! There are a lot of people here who had surgery similar to Linda's and I will let them address that. I just wanted to add my "hello". We are the same age......and I have a sister who STILL smokes and drinks. She didn't get it.....I did. That's way things go and I have never been one to say "why me?"......rather "why NOT me?"
God bless and welcome to the forum!
Judy U
Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
| | |
#15057 03-30-2004 03:48 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Good luck Melanie.. Linda is lucky to have such a caring sister..must admit I was a smoker too..was the "fashion" when we were younger.Welcome to the forum.
and may your God go with you!
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
| | |
#15058 03-30-2004 06:29 PM | Joined: Mar 2004 Posts: 4 Member | | OP Member
Joined: Mar 2004 Posts: 4 | Thank you, Judy and Marica for your replies. I only just quit smoking 2 months ago -- thought I never could. I am just so concerned about Linda emotionally, too. I guess I've always been one of those "it won't happen to us" folks and I just can't believe this -- liquid nourishment, huge weight loss and not being able to speak. I'm looking for some "experience, strength and hope" here -- does it get better? Docs say they saw no metastasis and think they got all the cancer, and that is VERY GOOD -- are these "side effects" permanent??? So Judy, you mean you got cancer and your sister didn't?
Melanie T | | |
#15059 03-30-2004 06:52 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | HI Melanie, and Welcome! I am confused, your first post suggested that the radiation did NOT kill the cancer. (bad news) but this last post suggests they got all the cancer? (really GOOD news) can you clarify?  This is the place to share frustrations and success stories alike. Your sister will likely do much better than she is imagining right now. She needs to hear it from the horses mouth(s). We are here for her and you!  take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | |
#15060 04-01-2004 11:33 AM | Joined: Mar 2004 Posts: 4 Member | | OP Member
Joined: Mar 2004 Posts: 4 | Hi Mark
Yes, she had 6 weeks of radiation daily. At first they thought the cancer was gone. Turns out it wasn't. And then she got a THIRD spot and had the surgery on ALL of it. I'm pretty sure this is how it went. The surgeon told me himself that the radiation had not killed the cancer. It DID however kill her salivary glands and make her mouth so sore that she's had a feeding tube ever since.
I phoned her yesterday, knowing she can't speak clearly, but at least she could hear my voice. I have sent her this link and reminded her to check here for similar stories.
Thanks for the reply.
Melanie | | |
| Forums23 Topics18,170 Posts196,933 Members13,106 | | Most Online458
Jan 16th, 2020 | | |
|
