#3590 09-06-2004 10:19 PM | Joined: Aug 2003 Posts: 71 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Aug 2003 Posts: 71 | Christy-
Your grandmother is really lucky to have such a wonderful caring granddaughter on her side. I know what you mean about the "system" being slow. No, I'm not in Canada but I can tell you I spent many an hour hounding the insurance company to approve better medications or the doctors to listen to my husband's symptoms instead of just saying it was an "infection". Thank God I never gave up. I never wanted the diagnosis of cancer for my husband but I always wonder how much worse it could have been if I hadn't demanded they do more tests.
You Go Girl!!!!
Lorie
Lorie/wife of Don, DX:8-7-03, Tonsil cancer left side stage III, IMRT x 35, 6 chemo (Cisplatin/Taxol), clear CT Scan 12-26-2003. Mets to both lungs & AML 11-6-05, mets to brain Jan 2006, mets to liver & bones April 2006, passed away July 20, 2006.
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#3591 09-07-2004 06:20 PM | Joined: Sep 2004 Posts: 5 Member | | Member
Joined: Sep 2004 Posts: 5 | Hi Christy
Just to let you know I have signed up and hope to get support from the group. I will call the doctor in the morning and see if I can get some answers to moms biopsy. It is so hard to do this waiting game. Health care in Canada really sucks big time. Mom
Jenny
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#3592 09-07-2004 10:50 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Welcome Jenny,
We're here to help in any way we can.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#3593 09-07-2004 11:18 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Jenny,
Welcome to our close knit community. We are here to help in any way we can. It goes without saying that the people here are great and have such a wealth of information and experience to share willingly. Sorry for the circumstances for which you and Christy had to find us but we're here for you both as you struggle to help your mom in fighting this disease.
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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#3594 09-08-2004 07:20 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 Jenny!
It is so good to have you here. We have really enjoyed knowing Christy and look forward to hearing from you, too.
I used to brag how fast my results from tests always came back. In most cases, I had the scans or tests done in the early morning and scheduled my doctor appointments for 11 am. It has worked great for about a year now.
I had a chest x-ray last Wednesday and still can't get the results. I have been on the edge of my seat for 8 days now. I finally paged the head of the radiology department and she had everything taken care of...three hours ago. You would think they would just call me. That's what I get for bragging!
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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#3595 09-09-2004 08:33 AM | Joined: Aug 2004 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2004 Posts: 45 | Hi everyone,
Another update.....
Still nothing from the doctors.....I don't know how they can all sleep at night. One of my aunts are going to sleep over at my Grandma's house starting tonight. My Grandma is so weak now. We are scared she will get hurt if she is left alone. The hospital said they won't admit her even if she is not eating.
I will keep you all posted. Maybe if we are lucky we will hear something by Christmas!!
Christy | | |
#3596 09-09-2004 10:21 AM | Joined: Aug 2004 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2004 Posts: 45 | Hi everyone,
Can anyone tell me what this means......
Extensive left oral cavity tumor with signs of extension into the maxilla and signs of regional lymphadenopathy. Suspicious contralateral lymphadenopathy is evident as well.
This is the CT results....still don't have the biopsy results.
This doesn't look good....does it?
Christy | | |
#3597 09-09-2004 04:05 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Christy,
I'm not an expert, but from the little I do know, I'm afraid you're right.....it doesn't look good. I don't want to upset you, but I think lymphadenopathy is usually present in advanced stages. Contralateral means the opposite side, so they think it might be on the right side also. Extension into the maxilla sounds like it is invading the bone. I'm not sure how well chemo and RAD combat it once it is in the bone. Surgery might be an option, but you said she didn't want that. And at her age and with her poor condition, surgery might be more than she could handle. I'm so sorry to have to tell you this, but I feel it is better to be prepared. Sugarcoating it isn't much help in the long run.
With that being said, there is every reason for you to continue to fight to get your grandma the care she needs. Even if there is nothing the doctors can do to cure the cancer, she still deserves decent care. At the very least, they should be making an effort to effectively manage her pain.
I'm so very sorry you have to go through this. I was very close to my grandma also, closer to her than to my mother, so I can understand what you are going through. I wish you strength in the days ahead.
Sending rainbows & hugs,
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#3598 09-09-2004 04:17 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 | Christy, It means there is evidence of tumor possibly extending into the maxilla or upper structure of the mouth, together with regional abnormal lymph nodes including nodes on the opposite side.
As to your question about good or not, leave that to the experts that fix this kind of thing. Certainly this is not as good as if the scan was "normal" but then you knew the tumor was there before.
Don't give up yet.
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.
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#3599 09-09-2004 04:25 PM | Joined: Aug 2004 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Aug 2004 Posts: 45 | Hello Rosie,
Thank you so much for being honest.
I didn't think the cancer was so advanced until I read the CT report. I am terrified to see what the biopsy reads.
How long do you think she will live for with the cancer so advanced?
I don't want to say goodbye yet!!
Christy | | |
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