Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#185337 09-20-2014 07:53 PM
Joined: Jan 2013
Posts: 65
LilyFoo Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2013
Posts: 65
Charles is scheduled for surgery approximately 10/23/14. He has been diagnosed with SCC BOT and the cancer has gone into his larynx with mets to lymph nodes. He is scheduled for tongue resection, laryngectomy, forearm radial free flap and leg skin graft.

I have noticed that quite a few folks on this forum have been treated successfully with chemotherapy and targeted therapies but not surgery. We have a provision in our health insurance that will pay for a second opinion. Charles surgeon only uses chemotherapy for palliative care, he does not think it is effective as a curative.

We live in western North Carolina and go to the CCC at Wake Forest Baptist Med Center, rated no. 1 in our state. But would be willing to fly to MD Anderson for a second opinion to avoid surgery. Or any other recommended CCC.

I am sure you will understand where our heads are at. Any thoughts?


Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Lily, unfortunately OC is not cured with chemo alone. Chemo is used to help shrink tumors making surgery less invasive or along with radiation to help boost its effectiveness. Alone, chemo is used for pallitive care to extend length of the patients life when they are considered terminal.

I would definitely advise you to get a second opinion and MD Anderson is one of the best places for it. From what you described, its unlikely your mother will avoid surgery. The cancer sounds like its too invasive for radiation (even with chemo added) to eliminate it completely. However, I am not a medical professional, Ive only witnessed hundreds of patients over the past 7+ years go thru similar issues. This is why I urge you to get the second opinion.

Best wishes with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
LillyFoo
I just read your post and we are in the same situation . My mother is scheduled for her second surgery on Tuesday 9/23/14 . My moms cancer has recurred in the floor of her mouth. My mom has completed her radiation treatments after the first surgery in which half her jaw bone was removed. But the cancer came rite back . We really hate to see my mom go through such a brutal surgery again. We are now thinking about calling off the surgery and trying to find out if there is another kind of treatment available somewhere. I live in New Orleans La. and we are now thinking about driving to Texas at MD Anderson. We just don't know which is the way to go at this point. I cant say my moms Surgical Oncologist is not a great doctor. He did a wonderful job on her first surgery . He has informed us that surgery is the only hope at getting rid of this cancer. I am so exhausted mentally that I just don't want to make the wrong decision and the cancer gets worse

Last edited by sweetpe1; 09-20-2014 08:25 PM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Jan 2013
Posts: 65
LilyFoo Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2013
Posts: 65
Sweetpe,
We are in very similar situations. I am so thankful for this forum. At least we are not alone! But sometimes I feel like my brain is going to explode.
Sheryl


Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
LillyFoo

We have an appointment Monday morning with the Surgical Oncologist to go over some questions regarding the surgery. I am also going to call MD Anderson to see how long it will take to get an appointment . In my mom condition we don't have much time to spear because she is having a lot of pain and swelling in her neck .
Good luck you and your husband.


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Jan 2013
Posts: 65
LilyFoo Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2013
Posts: 65
Hi Sweetpe, how did your meeting with the Surgical Oncologist go? Praying for it to be clear. Big hugs, sheryl


Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
LillyFoo
The meeting went well. The doctor answered a lot of questions we had about the surgery. We were told the surgery was the only alternative for getting rid of this cancer. So my mom will be admitted in the hospital at 6am in the morning . We are praying all goes well in removing the cancer from the floor of her mouth.


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Jan 2013
Posts: 65
LilyFoo Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2013
Posts: 65
Sweetpe, we will be praying for the best outcome for your mom today and keep you in our prayers too.


Wife/caregiver to Charles
ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001
Tonsillectomy, RND and six weeks RADS 2/2001
ENT diagnosis from CT scan, SCC in Rt tongue 2/13
25% of tongue removed 2/13 (clear margins)
SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014
Surgical biopsy shows cancer in larynx 9/2014
Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014
Recurrences '16 HPV Neg No EGFR Mutations Detected
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
Surgery did not go well today. As the doctor opened my mom up he said there were no clear margins . The cancer cells were to wide spread so he closed my mom back up. Chemo is the only hope to try and stop the spreading. A few Chemo treatments will be tried to see if my mom responds to it. We are so sad and upset but we will not give up hope.


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Sorry to hear that, Sweetpe. Let's hope your mom responds to chemo and that she does not have too hard a time with the treatments.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5