| Joined: Jan 2013 Posts: 65 Supporting Member (50+ posts) | OP 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: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!!! ChristineSCC 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 | | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | 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 Supporting Member (50+ posts) | OP 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) | 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 Supporting Member (50+ posts) | OP 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) | 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 Supporting Member (50+ posts) | OP 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) | 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) | 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. | | |
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