#5497 06-06-2005 11:34 PM | Joined: Nov 2004 Posts: 11 Member | OP  Member
Joined: Nov 2004 Posts: 11 | Looking back I see that Christmas was my last post
I've missed u all, hope everyone is doing ok, you've always been a big help & greatly appreciated.
Mom went through her intensive radiation & chemo treatments with no avail. The cancer is still there and the only other option is surgery.
Looks like 1/2 of the left side of her tongue will be taken out along with her lymph nodes.
The cancer cells were still found after a post treatment biopsy this was not expected by us nor her doctor, looks like the treatments didn't do the job.
They will try to reconstruct the tongue with skin from her thigh or arm, I wish I knew what we were in for it sounds pretty bad.
Just 2 wks ago they removed her PEG tube we thought all this was over.
Mom is a talker, we are wondering how her speech & swallowing will be affected by this, she is 73 years old & weighs about 125 lbs, has not had any other health problems besides this, never a smoker or drinker, has taken good care of herself, we've learned cancer is not a picky predator does not discriminate against anyone.
I guess I'm just reaching out for comfort AGAIN, I hope someone can tell me AGAIN that everything will be fine and they survived this surgery themselves or know someone who did thanks to all! Tina | | |
#5498 06-07-2005 02:44 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Tina,
Sorry to read that your mom will need surgery. If you check in the Medications, Treatments and Procedures message board, you will find Jennifer (gillijl) who just had a tongue resection and graft. She is doing very well and I'm sure if you read her posts there, you can get a feel for what she has been through.
My thoughts and prayers are with you and your mom.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#5499 06-07-2005 07:47 PM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | It's not easy, but doable if needed! Everyone says I speak very clearly. Some people that don't know me think maybe I just came from the dentist or something. I can't lick my lips, but we have lots of napkins for that! You just adjust! I had surgery first, followed by rad & chemo. Treatment ended 1 year ago. I'm 43 & very healthy & plan to live a very long life. I eat just about anything I want now. Like I said before you just adapt! The rad & chemo we're definately worse than the surgery. Keep in touch, Erik
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#5500 06-07-2005 11:03 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Hi Tina,
Sorry to hear about your mom. Just doesn't seem fair ... I am 18 months post rad/chemo but first had surgery to remove my whole tongue. I am able to talk pretty darn good (use a palatal drop prosthesis) and haven't come across anybody who can't understand me. I work full-time for a major corporation and my speaking ability hasn't prevented me from doing my job. I don't enjoy talking on the phone like I use to but that's just another one of those adjustments I've had to make of my new life. I'm also able to eat just about anything (steak, chicken, seafood, veggies, pasta) except for breads, cookies, chips, cake (all the good stuff!). Even the "forbidden" foods mentioned are doable with a LOT of effort but I find it's not worth it. It goes without saying that it'll be a big adjustment for your mom but she sounds like one tough cookie and a real trooper. Keep us posted.
Hugs, 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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#5501 06-08-2005 04:36 PM | 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 | Tina Elise,
I am sorry to hear the latest news about your mom. I haven't had to endure the surgery but I sure have come to know (and love) many that have. I am hoping for the best possible outcome for your mother.
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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