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I am upset !!! #193847
02-06-2017 04:16 PM
02-06-2017 04:16 PM
Joined: Jul 2016
Posts: 29
Louisville, Kentucky
M
Murphy Offline OP
Contributing Member (25+ posts)
Murphy  Offline OP
Contributing Member (25+ posts)
M

Joined: Jul 2016
Posts: 29
Louisville, Kentucky
I was diagnosed with tongue cancer last April and had tongue surgery and right neck disection last May (2016). No cancer in the 39 lymph nodes from neck. Then 6 weeks of radiation treatments after teeth extraction. I have gained almost all my weight back, eating and feeling better than ever. Just waiting for dentures hopefully in March. Had soft tissue scan on 1/9/17 Radiation Doctor says it looks good, but then I get a call from ENT doctor and wants a visit. Go in and he says that my epiglottis looks irregular and wants to do a biopsy, that will be on 2/8/17. I am not happy with it, before tongue surgery, neck disection and radiation I was mister tough guy, now I am scared and don't want to go through this Sh#t again !!!!


5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous
35 radiation treatments to the throat, Ended 3/21/17
Re: I am upset !!! [Re: Murphy] #193850
02-07-2017 09:51 AM
02-07-2017 09:51 AM
Joined: Sep 2016
Posts: 107
B
bjmpittsburgh Offline
Senior Member (100+ posts)
bjmpittsburgh  Offline
Senior Member (100+ posts)
B

Joined: Sep 2016
Posts: 107
Murf -

I get it. Been there myself, (Read the details below)

Take your anger and frustration and try to develop some patience. If your epiglottis is cancerous, you'll need to focus on the surgeries and treatments again.

Until you're certain about the diagnosis, try not to get too upset by the possibilities. (Easier to type than actually do.)

Update the board when you know more.

Good Luck!


1997 SCC Tumor on tongue - Partial Glossectomy
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Glossectomy
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-glossectomy
Free Flap reconstruction from thigh
PEG Tube inserted
6 weeks radiation
Trisimus
Pump Feed
Permanent Issues with speech and swallowing

Re: I am upset !!! [Re: Murphy] #193855
02-08-2017 05:59 PM
02-08-2017 05:59 PM
Joined: Jul 2016
Posts: 29
Louisville, Kentucky
M
Murphy Offline OP
Contributing Member (25+ posts)
Murphy  Offline OP
Contributing Member (25+ posts)
M

Joined: Jul 2016
Posts: 29
Louisville, Kentucky
Dear Board,
I had epiglottis biopsy done early this morning by ENT, the doctors did biopsy test while I was asleep, It is cancerous but do not know how bad, ENT said surgery probably not option and had talked to radiologist. Wow, rads again within 8 months? Just how sore will my throat get? Will hydrocodone be able to control the pain like the inside of my mouth? How hard will it be to swallow? I guess according to the doctors if I lose more than 20 pounds that qualifies for a PEG tube? I'm 6 foot and 180 pounds now.


5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous
35 radiation treatments to the throat, Ended 3/21/17
Re: I am upset !!! [Re: Murphy] #193856
02-08-2017 08:49 PM
02-08-2017 08:49 PM
Joined: Jun 2007
Posts: 10,227
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,227
PA
I am so sorry you are dealing with a recurrence! I had been hoping it was scar tissue or something related to the treatments you just finished.

I would suggest seeking a second opinion at a CCC. The CCCs are used to dealing with complicated cases and may have options smaller local facilities do not.

Unfortunately, I do know a thing or 2 about recurrences. Ive been thru it myself. I dont know if rads will be an option or not (another reason for a CCC is so important). Most patients can only have one round of rads. I do know of several here who have had rads twice and even fewer who have done rads 3 times. This is on a case by case basis. If having rads again, it is to a different area. Since you just finished rads if getting rads again its likely to be a lower dose. Surgery is usually the treatment for recurrences after a patient already had rads.

The PEG tube is a tool to help you get thru treatments easier. If its an option to get the feeding tube prior to any treatment it would be easier than getting it after rapidly losing weight. I know having a feeding tube is uncomfortable and hard to deal with mentally but it really is a very good option.

Feel free to ask questions and we will do our best to help you get thru this.


PS... Im sorry I do not remember your history. I'll send you info on how to add your signature so its easier to help you. Look for a tiny flashing envelope next to the My Stuff tab.


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
Re: I am upset !!! [Re: Murphy] #193859
02-09-2017 07:31 AM
02-09-2017 07:31 AM
Joined: Sep 2009
Posts: 697
Media, PA
A
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)
AnitaFrances  Offline
"Above & Beyond" Member (500+ posts)
A

Joined: Sep 2009
Posts: 697
Media, PA
Hi, Murphy,

I want to encourage you to forge ahead. Tough news that you have a recurrence. Find out ALL you options. Ask lots of questions. Also, regarding the PEG tube, my husband had one for 2 years. It definitely helped him survive the effects of rads. Do what you have to to beat this. keep us informed so that we can help you through this next phase. My best to you!


Anita (63)
CG to husband, Clark, 73,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Re: I am upset !!! [Re: Murphy] #193860
02-09-2017 07:38 AM
02-09-2017 07:38 AM
Joined: Sep 2016
Posts: 107
B
bjmpittsburgh Offline
Senior Member (100+ posts)
bjmpittsburgh  Offline
Senior Member (100+ posts)
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Joined: Sep 2016
Posts: 107
Murf-

I think you may be surprised at the limited treatment options you have available.

Like Christine noted, not many people have two courses of radiation. (Mine were 17 years apart and it was only an option because of the time between.)

Whatever course your doctors decide on, follow up with a second opinion at the best available CC.

Meanwhile, you should probably take some time and allow yourself to become emotionally and mentally prepared for the next stage in your fight. Oral Cancers are tough and there are no easy solutions in becoming cancer free.

BTW - PEG Tubes and pump feeds are not as bad as they sound, if you end up requiring them. (I'm 6'-2", 245 lbs, and maintain a consistent weight with only pump feeds)



1997 SCC Tumor on tongue - Partial Glossectomy
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Glossectomy
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-glossectomy
Free Flap reconstruction from thigh
PEG Tube inserted
6 weeks radiation
Trisimus
Pump Feed
Permanent Issues with speech and swallowing

Re: I am upset !!! [Re: Murphy] #193862
02-09-2017 09:10 AM
02-09-2017 09:10 AM
Joined: Jul 2012
Posts: 3,135
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,135
NYC
Murphy,

I'm sorry to hear of your biopsy results as we were all hopeing in was something other than cancer.

Just to let you know, I had radiation 5x, over 200Gy, both external and internal radiation to the same areas in 3 years, some which was for many recurrences (7). I had IMRT 2x, High Dose IORT 2x during neck dissection surgeries, which a newer form of Brachytherapy, and Proton Radiation 1x, which is high precision radiation that spares adjacent structures, and has no exit wound, but is only done in about two dozen centers in the U.S.

In order to do this successfully and safely, with even more radiation than my original primary cancer, I had combination of treatments, including three types of radiation, a pec flap during a neck dissection to bring fresh tissue to the area radiated, and another time, I had my carotid arteries removed, so I have no blood flow to one side of the neck.

So it's possible to do reiiridation by experienced radiation oncologists and in experienced comprehensive cancer centers, in select patients, and such depends on many factors including the areas to be radiated, consideration for minimal side effects/morbidities, age, co-conditions, type of radiation, total prior grays to area, time between last treatment, which is mentioned no less than 6 months, etc.

It's difficult to say what or may not occur, but radiation toxicities are usually based on the type of radiation, the areas to be radiated, the dosage amount (Grays), daily fractions, frequency (weeks), if radiated before, if with chemo, age, physical condition, and other co-morbidities.

Have they also suggested any chemo?



10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: I am upset !!! [Re: Murphy] #193866
02-09-2017 06:37 PM
02-09-2017 06:37 PM
Joined: Jul 2016
Posts: 29
Louisville, Kentucky
M
Murphy Offline OP
Contributing Member (25+ posts)
Murphy  Offline OP
Contributing Member (25+ posts)
M

Joined: Jul 2016
Posts: 29
Louisville, Kentucky
Thank you all for your support, it helps so much!!! I will have a consultation with 3 doctors hopefully tomorrow at Brown Cancer Center in Louisville, Kentucky. I believe that is one of the best cancer centers in the area. I will get all my paper work, scans, etc. in case I want a 2nd opinion. I was able to talk to my wife this evening and she told me that my ENT talked to her after the biopsy and said that this is a early stage of cancer but will know more about it at the consultation. I will try to let you know soon how it goes.


5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous
35 radiation treatments to the throat, Ended 3/21/17
Re: I am upset !!! [Re: Murphy] #193868
02-10-2017 07:33 AM
02-10-2017 07:33 AM
Joined: Oct 2012
Posts: 1,056
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,056
Toronto, Canada
Murphy, I'm sorry I am coming to this late. I am sorry you've got bad news but I'm glad you seem to be prepared to get a second opinion if necessary. That's a very good start. Keeping you in my thoughts.


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.
Re: I am upset !!! [Re: Murphy] #193877
02-14-2017 05:50 PM
02-14-2017 05:50 PM
Joined: Nov 2016
Posts: 59
M
MrsW Offline
Supporting Member (50+ posts)
MrsW  Offline
Supporting Member (50+ posts)
M

Joined: Nov 2016
Posts: 59
Dear Murphy-
just a note to say... with all hope and possibilities- I do hope there are options that you will be able to undertake and do okay by.

positive thoughts to you.


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
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