Patient / Survivor Header
Topic Options
#148301 - 04/15/12 05:43 AM Larynx removal surgery??
gpk101 Offline
Senior Member (100+ posts)

Registered: 04/03/03
Posts: 122
Loc: Atlanta, GA, USA
Hello, all. Sorry I haven't written in a while-been too busy going to doctors all over town and chemo once a week! :-)
The chemo seems to have stabilized the small tumors under my chin and around my larynx, so now the medical oncologist wants me to talk w/the surgical oncologist about possible removal of these problem spots.
I'm a little nervous as it seems that every time I've awakened after surgery with this doc it's, "Surprise! You're now going to live with a mouth opening the size of a quarter!", or "Surprise! You now have a (temporary) stoma in your throat and won't be able to breathe clearly for the first little while!" (This last was especially terrifying)
I'm all for getting the cancer while it's not running rampant in my head, but there's a bit to be said for quality of life, also. From my understanding, chances are that I won't be able to speak/communicate by voice AT ALL for 3-6 months!!! This is quite the stomach-churner, as I live alone. Also, the cancer is in my lymph system and it seems that I'll NEVER be completely free of it, right? It can travel to any other part of my body at will when it's cut out of my throat, right?
I'm scared to death. It seems that the surgeon just wants to show what a great surgeon he is and nevermind the human wreckage left in the wake...
I know I'm making this a lot more severe than it probably will turn out to be, but I NEED THE FACTS before I submit-yet again-to the knife.
Any encouraging words and/or similar experiences will be greatly appreciated.
thanks!
gordon
_________________________
SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!


Top
#148303 - 04/15/12 09:26 AM Re: Larynx removal surgery?? [Re: gpk101]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8281
Loc: PA
Im sorry to read of your latest problems. One thing to remember is that surgeons cut, thats what they do. Once a part is removed nothing is ever as good as the original when you begin moving parts of your body around.

My recommendation would be to go to a cancer center where you will have a whole team helping to plan your treatment. A cancer center is where they will have the most experience treating others like yourself instead of a smaller facility where they may see only a handful of cases per year.

Cancer Centers

Best wishes with everything!!!


Edited by ChristineB (04/15/12 09:27 AM)
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

Top
#148308 - 04/15/12 01:55 PM Re: Larynx removal surgery?? [Re: ChristineB]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 282
Loc: Kansas
It does not look to me like you have ever had radiation, and that seems surprising to me. After 30 lymph nodes were removed from my neck the rest of them were subjected to radiation and chemo. The radiation and chemo were to clean up anything that might be left.

I can certainly sympathize with your fears about surgery.

A comprehensive cancer center for treatment would be your best option.

Best,
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

Top
#148348 - 04/16/12 01:40 AM Re: Larynx removal surgery?? [Re: AnneO]
gpk101 Offline
Senior Member (100+ posts)

Registered: 04/03/03
Posts: 122
Loc: Atlanta, GA, USA
Thanks for the replies. I've had max radiation I can have in 2005 (?) THAT was yet another nightmare, but I got through it. Everything has been clear until growth on my tongue removed in 2010-along with most of my tongue. Am still the silver-tongued devil, though, just nobody else knows it! ;-)
I go to Winship Cancer Institute at Emory university here in Atlanta/Decatur. Would it help to get a 2nd opinion? How do I do this without stepping on toes?


Edited by gpk101 (04/16/12 01:41 AM)
_________________________
SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!


Top
#148352 - 04/16/12 02:05 AM Re: Larynx removal surgery?? [Re: gpk101]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4805
Loc: Toronto canada
Absolutely get a second opinion! A good dr. Will tell you everything he intends to do, prior to cutting, he will give you the worst case scenario, but hope for the best. I am not sure if your hospital is a ccc - if not call up the nearest one and make an appointment! CCCs tend to have clinical trials etc.. as well as regular chemo, rads etc... And a team of drs who will all give you input. Also you can be re radiated - (several here have) as for your question about lymph nodes - if it's localized chemo, and rads can stop it. Have you had a neck dissection? When they removed the tongue tumor they should have done that (which is pretty standard with hat type of a tumor since its generally the next place it would spread). There are many here who've had node invlolvement, and surgery, rads and chemo did its job. Take care... And personally id run far and fast from a surgeon, who thinks he's awesome, but doesn't offer up full disclosure. Hugs and good luck!


Edited by Cheryld (04/16/12 02:06 AM)
_________________________
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

Top
#148358 - 04/16/12 05:08 AM Re: Larynx removal surgery?? [Re: Cheryld]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8281
Loc: PA
Tell your doc you want to get evaluated by a cancer center. If the doc balks then you know what to do next. RUN to a cancer center as this doc isnt on the ball enough to stand by his diagnosis and treatment plan. The list of our countries top NCI cancer centers is in the above post I sent.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

Top
#148377 - 04/16/12 09:49 PM Re: Larynx removal surgery?? [Re: ChristineB]
Leslie B Offline
"Above & Beyond" Member (500+ posts)

Registered: 05/05/06
Posts: 712
Loc: Washington DC
Christine -- Gordon is being treated at a cancer center on the NCI list.

Gordon -- Don't worry about stepping on toes. You are your own best advocate; good doctors understand requests for second opinions, and it is your right to seek one (I believe most insurance plans cover them, and some may require them before major surgery). You can ask your doctors whom they would recommend -- it could be that one of them trained at MD Anderson or Memorial Sloan-Kettering or Johns Hopkins (to name three of the top cancer centers in the US) and has connections there. Or you can simply contact one of those centers and make an appointment yourself.

(And Christine is right: If your current docs balk at your request for a second opinion, flee!)

You may be told the same thing that the docs at Emory are telling you, or you could learn of different treatment options. There are several people on these boards who have traveled great distances from home for treatment -- OCF founder Brian Hill went from the LA area to MD Anderson in Houston, and I recall one poster who traveled from California to Memorial Sloan-Kettering in NYC.

If travel would be difficult for a second opinion, I see that Hopkins has a program that gives one after reviewing your records and your current physicians' recommendations: http://www.hopkinsmedicine.org/kimmel_ca...gram/index.html Might be something to check out.

Good luck!
_________________________
Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.

Top
#148380 - 04/16/12 10:59 PM Re: Larynx removal surgery?? [Re: gpk101]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 282
Loc: Kansas
It is your life, your doctors do not have to endure what you have endured, even if they are empathetic. They certainly should be used to having patients want second opinions.

When I was at MD Anderson (I live 10 hours away from them so I got an apartment & lived down there for two months or so) there were people there from Atlanta seeing doctors. At one of my check-ups, there was a man from Atlanta who was seeking help for an oral cancer 17 years after his last one. I think they were in slightly different locations on that one. He said he never thought he'd be here but had listened to talks by MD Anderson doctors in Atlanta speaking on oral cancer over the years. So I don't know how far away you are from Houston.
There is at least one other member of this forum who is from Atlanta but had her care at MDA.

In Florida the one I have heard good things about is Moffitt in Tampa.

I did not think you had radiation because I did not see it in your signature. Before someone cut on me some more I would get another opinion.

Best,
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

Top
#148382 - 04/17/12 12:14 AM Re: Larynx removal surgery?? [Re: AnneO]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2570
Loc: TN
Your concern about "stepping on toes" is definitely unwarranted. You wouldn't worry about hurting someone's feelings over buying a car, would you? Shopping for a doctor is just like shopping for anything else - you do the research and expect and deserve the best service. The only difference is, shopping for a doctor is WAY more important because it concerns your health and your life!! You have the right to expect the very best in care. You have great suggestions above, so GO for it! If it bothers you to say "I'd like a copy of all my medical records so I can get a second opinion", you can say your Mother wants you to get a second opinion (or your wife, son, etc.) so that you can make an informed decision re what further steps you will take.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




Top


Support OCF
Shop Amazon and Help OCF Help OCF
Who's Online
0 registered (), 53 Guests and 5 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
9998 Members
23 Forums
15861 Topics
180126 Posts

Max Online: 141 @ 05/15/13 10:09 AM
Top Posters
davidcpa 8303
ChristineB 8281
EzJim 5260
Cheryld 4805
Brian Hill 4661
September
M Tu W Th F Sa Su
1 2 3 4 5 6 7
8 9 10 11 12 13 14
15 16 17 18 19 20 21
22 23 24 25 26 27 28
29 30
Newest Members
KaylaCole, m103bus, Tricia K, zigma, Rich Lester
9997 Registered Users