| | Joined: Jun 2013 Posts: 7 Member | OP  Member
Joined: Jun 2013 Posts: 7 | Two weeks ago my husband, who has been quite ill with right heart failure and confined to bed for the last two years on continuous oxygen, went to the dentist for what he believed was a "cut" tongue from a broken tooth. He has been on high dose pain meds for years following five back surgeries and bilateral foot drop. So I am assuming his pain was masked. Anyway after hearing our dentist say wow, we proceeded on the same day to the oral surgeon. The oral surgeon looked into my husbands mouth and said, " I hate to be the bearer of bad news but you have cancer and its in the lymph nodes. We have a great relationship with our PC doctor and called her immediately. She called the ENT and set us up for the Cancer Center the very next morning. Since that time he has had a CT and PET. Yesterday the ENT discussed surgery that would include removing the tongue, voice box and jaw. He said it would be about a 12 hour surgery. He has positive nodes in the neck. Tomorrow meeting with surgeon and oncologist and need to know what questions to ask.
Husband 63 yo
4-vessel bypass 2004
Right Heart Failure
COPD
Scc(a) 6/13
6/12/13 PEG
PET 10/21/13 bone METS T7, rt humerus, rt acetabulum
Right and left upper lobe lung lesions
Right lower lobe lesion
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome, and sorry to hear Gina. Was anything confirmed by biospy? Not saying they are incorrect, but no diagnostic exam is 100 perecnt accurate, PET, CT, MRI, Sonagram. They may do a FNAB of the lymph nodes, but if surgery is likely, will do a surgical biospy during a endocscope or triple scope, and if it is cancer, proceed with surgery right then, which soumds like it may, but I can't see any doing that surgery without confirmation of cancer, and ask about this, any altenatives. Chemo sounds likely also, being a conslult with medical oncologist was made, and extent of disease. Radiation? Maybe get a second opinion with the best doctor, hopsital you can find, have trust in. Is this a CCC, Comorehensuvd Cancer Center that have a disciplinary team if doctors. There is a top hospital for ENT in Chicago, forgot the name, but check on U.S. News report's best Hospitals in ENT and Cancer, NCCN assoicated Hospitals, and NCI CCC hospitals you may find linked here. Number one ENT hospital is John Hopkins, and in cancer is MD Anderson, according to U.S News. You may also want a hospitals that is top in several specialties due to his condition, like for cardiac. Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | 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 | Welcome to OCF! Im so sorry to hear of yoru husbands diagnosis! you will find lots of correct info and moral support here on the forum. I would suggest taking him as soon as possible to one of the countrys top comprehensive cancer centers (CCC). It does make a difference! They will have the nations top doctors and are more likely to go by the NCI guidelines. At a CCC they will have the most experience and are best with complicated cases. The CCC also will have a team based approach where all the specialists will meet to discuss each individual case and make a treatment plan that best suits each patient. CCC list Dont worry, we will be here to help get you both thru this. Best wishes!!!
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: Jun 2013 Posts: 7 Member | | OP Member
Joined: Jun 2013 Posts: 7 | We will get biopsy results tomorrow. PET showed many positive metastatic nodes in neck. Should needle biopsy still be done? ENT did mention possible chemo prior to surgery.
Gina
Husband 63 yo
4-vessel bypass 2004
Right Heart Failure
COPD
Scc(a) 6/13
6/12/13 PEG
PET 10/21/13 bone METS T7, rt humerus, rt acetabulum
Right and left upper lobe lung lesions
Right lower lobe lesion
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hello Gina, So sorry you have to be here.
I totally agree with Christine. Your Husband would be best treated at a CCC with a team approach. This is complicated and involved surgery and treatment. Plus , he has existing medical problems. May I ask what age he is? You should also discuss with the Team Quality of Life issues.
The biopsy results should be all you need to get a definitive diagnosis.
Best of luck,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Definitely get another opinion from a CCC.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Just another vote for a 2nd opinion at a CCC. I have cardio vascular disease and treatment can be difficult on the heart. A team approach (including your cardiologist) from a comprehensive cancer center is the best bet.
I'll share a silver lining with you. The treatment is brutal but doable. In the process I lost 35lbs (60 total from last August). Due to the weight loss and subsequent diet (about 80% tube feedings), my blood work and blood pressure are now perfect! My cardiologist took me off of my BP med and lowered my dose of beta blocker to the minimum.
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Good luck with the biopsy results!!!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2013 Posts: 7 Member | | OP Member
Joined: Jun 2013 Posts: 7 | Our cancer center is a CCC. He is 63 yo. Biopsy proved squamous cell. The plan is to place feeding tube next week. he has an appt with GI on Monday. He has gone from 155 to 139 since April. He has a consult scheduled with oral surgeon on Tuesday for removal of all teeth. Following that mapping for rad therapy to jaw and neck. Due to right heart failure they are not using cisplatin but planning one of two other chemo drugs. The ENT told us at onset of the appt that treatment will be very intense and if it ever is too much he can back out at anytime. He will still require surgery to the jaw and tongue but hopefully would be able to spare the voice box.
Husband 63 yo
4-vessel bypass 2004
Right Heart Failure
COPD
Scc(a) 6/13
6/12/13 PEG
PET 10/21/13 bone METS T7, rt humerus, rt acetabulum
Right and left upper lobe lung lesions
Right lower lobe lesion
| | | | | 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 | Please add a signature, it is very important to helping us to help you. I have sent you the link for helpful info which also includes detailed instructions on how to make a signature. Thanks you!
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 | | |
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