#15530 05-30-2004 03:53 AM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: May 2004 Posts: 34 | Hi everyone - I too have been browsing this site since February 2004 when my twin sister Cathy (already a member here)was diagnosed with tongue cancer. She had her surgery March 18th - partial glossectomy and radical neck dissection on left side. We live together so I've been her caregiver. She started rad treatments May 13th but really swelled up over that weekend so much so that at the monday morning treatment the mask didn't fit. Doctor ordeed a bunch of tests and scan and cancer had reccured on the operated side. He admitted her to hospital where she is continuing with the twice daily rad plus steroids for the swelling (which has helped tremendously) and antibiotics for some mystery fever they couldn't pinpoint.
At this point the doctor is saying he didn't have any evidence that the radiation wasn't working so she is forging ahead with that. Now the swelling is down a lot but not gone - in fact her tongue is swollen enough so that it prevents her being able to talk - after the surgery she had gotten to the point where she could call me at work and I could pretty much understand everything she said but this relapse is so frustrating. Also the skin on her neck where they did the surgery is really hard - is that common? Everyone on this board seems so supportive - I'm glad I finally registered.
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
| | |
#15531 05-30-2004 05:28 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Carol,
I am truly sorry to hear of your sisters condition. I will be praying she responds to her trearment.
Welcome to the OCF Carol. I'm glad you decided to post and introduce yourself. I'm sure you can offer alot of insight on your sister's treatment.
There is a special place in God's hands for caregivers. I think it's more diffucult to be a caregiver that the cancer victim.
Welcome again,
Danny Boy
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
| | |
#15532 05-30-2004 05:49 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Hi Carol,
I'm sorry to hear what your sister is going through.
I also had a partial glossectomy and neck dissection, and had some fairly hard scar tissue in my neck for a long time thereafter. Eventually (probably well over a year later), the skin started to go back to a more normal feel and the scar has become much less noticeable.
My speech also deteriorated as radiation went on. I thought my speech hadn't suffered too much after the surgery and was surprised at how much more difficult it became because of the swelling I experienced with radiation. Again, it took many months after the end of radiation for me to feel like I could make myself understood.
I hope your sister's treatment program is successful. Please stay in touch with us.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#15533 05-30-2004 06:33 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Carol,
Welcome to the board. My husband could talk well after his partial glossectomy, but in the middle of radiation he couldn't talk at all for 6 weeks due to tongue swelling and lots of pain. He used a PEG tube from 3rd week of chemo/rad until just now where he is really trying to get enough food by mouth which he just started about 2 weeks ago. His talking was slower this time and he has a bit of trouble with about 3 or 4 letters, bs and ds are harder. It seems to be getting better with time. He feels like his tongue is healing again like from the tongue surgery, which we didn't expect after radiation. Hang in there and may God comfort you and your family during this time!
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.
| | |
#15534 05-30-2004 06:39 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Carol, I too could speak well after surgery, it was the radiation that caused a lot of pain for me, I couldn't speak, eat or hardly drink. Things do get better tho....I will be praying for you and your sister. I am so sorry she has to go thru all of this.....God Bless, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | |
#15535 05-30-2004 07:17 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Carol
Welcome.. please remember that the carer is as important.. so lookafter yourself and remember we are here for you both..
prayers.. 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
| | |
#15536 05-30-2004 09:51 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Welcome Carol,
I had a near total glossectomy and radiation. Swelling and pain was an issue for me as well. I'm glad they got the swelling under control. I am close to 8 months from surgery and my incision and surrounding tissue is still hard too. I have begun to massage it with two fingers periodically.
We're here to help.
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,
| | |
#15537 05-31-2004 02:21 PM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2004 Posts: 34 | Thanks everyone for your encouragement. Two weeks into radiation the oncologist is still saying he has no evidence that its NOT working - so we forge ahead! He'll re-evaluate after 6 weeks.
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
| | |
#15538 05-31-2004 04:49 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 | Carol in RH,
I am sorry for all you and your sister are having to endure. I agree with Dan that the caregiver will be especially blessed by God for the job they take on. Your sister is so fortunate to have someone that cares for her and loves her so much.
God bless.
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
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
