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JPT68 #190515 08-18-2015 03:53 PM
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I had my biopsy today and, as suspected, it was positive for carcinoma. They will get the final reading by the end of the week. I also had a chest CT. I somewhat question the CT since I will probably need a PET scan sometime. The doctor will look at the scans and the biopsy report and give his opinion on what to do next.


4-2014 SCC BOT rt. 2 nodes
6-2014-8-2014 Baylor Sammons Dallas,
70 gy. Carboplatin Taxol
Peg tube 5/2014-present
biopsy(10/2014) mucoepidermoid carcinoma-not SCC.
11/10/2014 M.D. Anderson radical neck dissection hemiglossectomy flap rt. lower arm
1/2015 3xs-CDDP DOCATAXEL
2/2015 CT clear- ORN right jaw.
8/2015 CT. Lt. neck two nodes,right jaw ORN worsening. Biopsy- MEC.
Surgery 9/28/2015 lt. neck dissection-remove nodes and chest flap resection. Rt. jaw dead bone removal.
JPT68 #190516 08-18-2015 04:47 PM
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Administrator, Director of Patient Support Services
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Im very sorry for your bad news. I was hoping it wasnt a recurrence so soon after you just finished treatments. I would have questioned the CT scan as well. Didnt you just have one recently? Guess it doesnt really matter now, whats done is done.

Dont be surprised if your option is surgery as you just finished rads. Chemo used by itself is only used for palliative care.

Good luck with everything and please keep us posted.



PS...I sent you a private message (PM) when you first posted. Look next to the my stuff tab and click on the tiny flashing envelope. Please review the link Ive sent you and add a signature. This will greatly help us to help you. Thank you!



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
JPT68 #190517 08-18-2015 09:49 PM
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"OCF Down Under, Kiwi"
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It must have been hard to have those fears confirmed. Now you are on your way to having a plan of action. Keep us posted. Many of us have had recurrences and know how it feels.

Wishing you well.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
JPT68 #190523 08-19-2015 07:01 PM
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Sorry to hear the bad news. This is a unique place full of wonderful people and resources to help you get educated and support you through the treatments.

Good luck


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
JPT68 #190527 08-20-2015 07:53 AM
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Is there any chance that the cancer could only remain in the lymph nodes and that removsl of the nodes could achieve a cure? I really don't want any more of the tongue removed.


4-2014 SCC BOT rt. 2 nodes
6-2014-8-2014 Baylor Sammons Dallas,
70 gy. Carboplatin Taxol
Peg tube 5/2014-present
biopsy(10/2014) mucoepidermoid carcinoma-not SCC.
11/10/2014 M.D. Anderson radical neck dissection hemiglossectomy flap rt. lower arm
1/2015 3xs-CDDP DOCATAXEL
2/2015 CT clear- ORN right jaw.
8/2015 CT. Lt. neck two nodes,right jaw ORN worsening. Biopsy- MEC.
Surgery 9/28/2015 lt. neck dissection-remove nodes and chest flap resection. Rt. jaw dead bone removal.
JPT68 #190528 08-20-2015 09:04 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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I'm thinking unless the tongue shows cancer it will just be the nodes. But it will be a bit harder recovery because you've been radiated. Tell them ASAP - none of This waiting crap - it's been confirmed you want it removed yesterday. I'm saying this because it sounds fairly aggressive. The next stop from the nodes is often the chest. At which point it's very hard to catch. I don't want to panic you - I want to empower you to push and make noise until the do something quickly. Hugs.. And sorry for the news.


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
JPT68 #190586 08-25-2015 10:20 PM
Joined: Nov 2014
Posts: 66
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Call every morning to see if there is a cancelation? Getting the biopsy done will bring you the answers you need, in the mean time ask for a xanax or something to reduce the anxiety if you need it.

You are right about nutrition, it'll help you recover faster. Scrambled eggs with cheese was one of the few things I could eat. Slimy food it the best, overcooked veggies work like asparagus, mushrooms too.


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
JPT68 #190682 09-05-2015 10:45 AM
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Posts: 23
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Hello again,
I went to MD Anderson for a biopsy of the two suspicious nodes on the left side of the neck and they were positive for mucoepidermoid carcinoma. I have since seen the chemo oncologist there and will see the radiologist and the surgeon next week. The plan, most probably, will be to do a dissection of the left neck (hopefully selective) and to get rid of the nodes. There probably will not be any radiation since I have had so much in early summer of 2014. The chemo doctor did not recommend chemo since chemo has already been done and the only way to cure this is to cut it out.
In addition, I have suffered a pathologic fracture of the right mandible and will have to get that taken care of after the nodes are removed. My fear is that surgery is extensive and I wonder how I will be after that. I have progressed pretty well on my swallowing, with the help of a wonderful speech therapist. However, I am still having to use the Peg tube for almost all my nutrition.
I sometimes have days where I have trouble getting out of bed-like today- because of the anxiety and depression that accompanies this. It is particularly difficult because of the fact that my cancer was misdiagnosed and the treatment should have been different and I might have had less long term complications like difficulty swallowing and some changes in my speech. "What if" serves absolutely no purpose, however. What really is difficult is that sometimes I feel like this is too much of a struggle physically and mentally and it is hard to keep going. I am scared of dieing and sometimes I feel scared of living.
I do feel this forum does allow me to vent with people in similar situations. I am not sure how to put my specifics on the bottom of my posts, but if you see my first post, you can see most of my specifics. I will try to put my specifics on the bottom of my posts so that they will show up for everyone on each one of my posts.
Thanks for your help.


4-2014 SCC BOT rt. 2 nodes
6-2014-8-2014 Baylor Sammons Dallas,
70 gy. Carboplatin Taxol
Peg tube 5/2014-present
biopsy(10/2014) mucoepidermoid carcinoma-not SCC.
11/10/2014 M.D. Anderson radical neck dissection hemiglossectomy flap rt. lower arm
1/2015 3xs-CDDP DOCATAXEL
2/2015 CT clear- ORN right jaw.
8/2015 CT. Lt. neck two nodes,right jaw ORN worsening. Biopsy- MEC.
Surgery 9/28/2015 lt. neck dissection-remove nodes and chest flap resection. Rt. jaw dead bone removal.
JPT68 #190683 09-05-2015 11:29 AM
Joined: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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JPT68,

I'm sorry to hear of the cancer confirmation, but happy to hear you are at MDA. I don't know if there is anything I can say that is helpful, but for myself, I took one day at a time, even each day was gauged from meal to meal at times, listened to music, set small goals some of which seemed silly, trivial, ordinary, but meant a lot to me or just stared at the ceiling as I was bed confined for a year. Maybe speaking with a counselor is helpful. I had one in the nursing home, I thought was free, until I was billed, but talking with someone does help, and ACS, other organizations as well, pair you up with a sponsor that went through something similar to speak with, if that is possible, and discussing anything here as you noted. There are also monthly SPOHNC meetings at various locations in the U.S., and wouldn't doubt MDA has one or their own HNC support group.

I've been down the road where I have trouble getting out of bed, don't want to do anything, even to this date, and if wasn't for my doctor visits I wouldn't, but I have to admit you should do some type of activity, like light walking, if approved and as advised by your doctors, and be in shape for surgery, which helps in recovery, and survivorship/QOL as they now term. They may suggest PT somewhere down the line, even before surgery, and recommend that too.

Best wishes, and thank you for updating your post.


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






JPT68 #190686 09-05-2015 01:19 PM
Joined: Aug 2015
Posts: 23
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Thanks Paul B,
I really apreciate your quick response. I think the thing that bothers me the most is still being on the feeding tube. It also is tough since I think there is a possibilty this might not be the case if they had diagnosed it correctly from the beginning. Mucoepidermoid carcinoma responds best to surgery. However, thinking like that is useless and is really unhealthy for me psychologically. As my counselor says, "you can't go down the road you didn't travel". I am also fearful of my upcoming PET scan and probable surgery (surgeries). You are right about setting goals for yourself, even if they are small ones.
Thanks, John
It sounds like you have had a battle also.


4-2014 SCC BOT rt. 2 nodes
6-2014-8-2014 Baylor Sammons Dallas,
70 gy. Carboplatin Taxol
Peg tube 5/2014-present
biopsy(10/2014) mucoepidermoid carcinoma-not SCC.
11/10/2014 M.D. Anderson radical neck dissection hemiglossectomy flap rt. lower arm
1/2015 3xs-CDDP DOCATAXEL
2/2015 CT clear- ORN right jaw.
8/2015 CT. Lt. neck two nodes,right jaw ORN worsening. Biopsy- MEC.
Surgery 9/28/2015 lt. neck dissection-remove nodes and chest flap resection. Rt. jaw dead bone removal.
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