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Cheryld #177068 01-29-2014 08:09 PM
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Thank you for the mail, the surgery was changed to ENT consult. She told me I need a bilateral neck dissection and remove of tune tumor. Very scary details ~ 6 to 8 weeks out of work? I am serious when I say I thought I'd go back the next day. :-/

The posts on this site tell me I am doing this wrong. Need a more specialized group.

TY

Scottdad #177078 01-30-2014 02:12 AM
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Scott,

What is your actual diagnosis? It would help to give you better replies. Where on earth did you get the idea you would take ONE day off work to get this "fixed" and be back to work the next?

Do start reading up all you can and asking a lot more informed questions to your doctors. Maybe you know a lot more than you are posting here but it seems like you need to get ahead of this sooner than later. Good luck, don


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
Scottdad #177090 01-30-2014 09:55 AM
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Yup... Sometimes we minimize things as a protective instinct... (oh it's not that bad... It will be over quickly...) cancer has the ability to paralyze.

Everyone is familiar with breast cancer etc... since some of the more widely known cancers are at the very forefront of the news. They are the ones sensationalized by the news as being big killers etc..

So what is a small spot on your tongue/cheek/tonsil going to do? Right? That can't kill you... remove it and get on with your life.

Guess what... I think the cure rate for breast cancer is in the high 80-90% now. Oral cancer? That little .5 inch sore (some of which don't even cause pain) that seems to be a stage 1 or 2 can be amazingly aggressive and has about a 50% mortality rate.

Since most of the world is so uneducated about oral cancer no one realizes any of this.

Also because it is your head and mouth it has a MAJOR impact on your life. Sometimes depending on the location - cheek, gum, jaw - it can be disfiguring - tongue? Can cause speech, eating (taste and mobility of the food) and swallowing issues. (there are also many social issues that stem from this... when we have parties, when we go out, when we socialize we do a lot of what? eating/drinking/speaking... All of which can be compromised by treatment)

Radiation to these areas has a LONG TERM EFFECT. (dental - diet - swallowing - pain - fibrosis - necrosis of the jaw)

I'm not saying this to scare you - and the 50% statistic is just that... a statistic. You are young, and in good health. With the right dr.,right hospital and treatment you should come out of it okay.

But the wrong dr., wrong hospital, and treatment can cost you immensely.

Point in fact. I go to a yoga studio. The owner is on my facebook. My father in law was dx'd with esophageal cancer this fall - I made sure he was seen at my ccc - so I'm sitting there waiting for him to finish rads one day - I am playing candy crush pretty much ignoring my surroundings when it started up the woman next to me laughs I look over and smile and realize it is the owner of my yoga studio. We started chatting. Her husband got some kind of half assed treatment at another hospital. Essentially - he was dx'd with the same cancer you and I seem to have. The dr. removed the tongue portion only. sent him home telling him he was cured. They go to florida for a 2 months. He's there and a node pops up. They come back the dr. looks and says oh.. he's going to need radiation and chemo. Then I am not sure how this came about they set up some odd treatment plan that involves radiation broken in two parts (with a two or three weeks off in the middle) and then followed by chemo????? (not sure what treatment guidelines this dr. was following but I have never seen a treatment plan like that EVER. Radiation is most effective with NO breaks in treatment. If it is an aggressive cancer then it should be coupled with chemo (chemo makes it the cancer more responsive to radiation). I have heard of induction chemo then a follow up with chemo and rads. But never a broken up radiation followed by chemo. EVER. (plus the dr. told him not to bother stopping smoking - to pick his battles - are you kidding me??? whether he smokes has a direct impact on his 02 levels which effects healing, circulation, and treatment.

Then the dr. gave him 6 months to live and set up his rads out of house (at the CCC)so essentially in he's a patient of a non CCC dr. but receiving radiation at the ccc)

I told her to get a second opinion but at this point it was too late as they'd started radiation. Though they did see the surgeon who said there wasn't much he could do at this point.

Education is the most important thing you can do for yourself. KNOW WHAT IS NORMAL TREATMENT, ask questions if what you are receiving isn't standard (you need to look this up yourself - check out the treatment guidelines for your stage and type of cancer with the national cancer institute). Know your full diagnosis and involvement. IE: Oral tongue cancer, stage -I-IV, T2N1MO (t- tumor size - N - nodal involvement (1-1000 or more) - M - distant mets (has it spread elsewhere outside of the localized area (head and neck)?) Find out it's differentiation (how aggressive is it - Well differentiated (this is okay - as far as cancer is concerned - it's moving and growing but at a reasonable speed) to poorly differentiated (this is bad... highly aggressive moves and spreads quickly))

Plus there area lot of extraneous thinks to consider - if radiation and chemo is likely going to be part of your treatment (if you have nodal involvement it should be) then you will need - a hearing consult (for cisplatin - a common chemo used) and a dental consult (to see if any teeth need pulling - and to have flouride trays made for any remaining teeth), plus meeting with a dietician wouldn't hurt.

For now... are you getting a graft? and if you are having a bilateral neck dissection you need to know that you will be stiff and numb and there will be swelling. When they remove nodes they remove the pathway for your lymphatic fluid - this means that fluid has no where to go. So you will likely have swelling. (somewhere down the road you if you have had a clear scan and are considered cancer free - seeing a lymphatic masseuse will help rebuild those pathways and minimize swelling) You will need to get physio involved as to do a neck dissection they cut the neck muscles and this totally screws up your shoulder(s)- I couldn't raise my left arm above my waist after surgery. But with phsyio I recovered quickly and am good now. I am still stiff and numb in my neck region from the bottom of my ear to my collar bone and from behind my ear to the midline of my neck and it is likely permanent. The plus is numbness is pain free even post op.

A neck dissection despite sounding daunting is a good thing. This cancer generally goes to the nodes next, from there it has access to anywhere in the body (kinda like a subway espress line) the lungs being a favorite next-stop location.

What to expect with this surgery? if they rebuild your tongue - you will have a trache (likely) for a few days. A feeding tube through your nose (they don't want you eating for about 8 days) an IV for meds, a catheter until you can get up to go to the bathroom, and a donor site for the tissue for your tongue - if they take the tissue from the wrist - you will likely have another donor site on your leg for skin to cover your wrist. A nasty assed scar on your (leg, or wrist) from the main donor site and you will be missing a vein adjacent to the scar as that is where they get the new blood supply from.

For the bilateral neck dissection there will be two drains (or maybe three) to help drain the fluid. These will come out in a few days once they dry up.
This is all with regards to non HPV cancer, as I stated in my previous post HPV+ cancer has a different treatment regiment that generally doesn't involve a neck dissection.

I hope I haven't panicked you or totally freaked you out. This was meant to inform you. There are some cancers that aren't hard core (thyroid, a slow colon cancer) but the reality is - a cancer is a cancer. Any kind can kill you. We've had stage 4 survivors here and stage 1's who are no longer with us. There are so many variables. Bottom line it's cancer - it's important. It shouldn't be all consuming but it should be given it's weight in consideration. Educate yourself so you can advocate for yourself. knowledge is power. Even the best dr. on the planet cannot advocate for you the way you or a family member or loved one can. They have thousands of patients to look after - but you and your family have only one you - so do what is best for you.

hugs and good luck.





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
Tamsin #177123 01-30-2014 08:09 PM
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Thank you

Scottdad #177130 01-30-2014 08:56 PM
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where did my post go?

Edit: Scott, I deleted all your empty posts. I hope you get your computer problem solved so you can post normally...Tony

Last edited by n74tg; 01-31-2014 04:57 AM. Reason: deleting empty posts
Scottdad #177133 01-30-2014 09:17 PM
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It's hanging out with Eric's lost posts.


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
Scottdad #177177 02-01-2014 06:04 PM
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Scott,

It's a server bug and not your computer's issue. Brian has stated that the software vendor is working on a solution for these forums. It's frustrating to be sure, and doesn't make me feel like taking any time to write up a response only to see it vanish.

I keep them short and sweet, and hope for the best


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
Scottdad #177181 02-02-2014 03:23 AM
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Scott -
1) Stay in your "Fix-it" mode (aka "fight mode")! You Will get through this! When is your consult? It would be really good if you could take someone with you to your next appointment and make sure you have a list of questions ready. You can check back with them later about what was said.

2) It would help if you developed a signature line so we would know what has already happened with you. Just go to the top of this page where it says "my stuff", profile and scroll all the way down to the signature box and fill in whatever you want. If you need help with abbreviations, just go here:
http://web.utk.edu/~aalix/abbreviations2.html

3) Eric and others: I think the server bug only attacks the really important people. Ever since I quit "copy and pasting" I've had no problem.


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.)



Scottdad #177196 02-02-2014 03:01 PM
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[quote=Scottdad]where did my post go?
I hope you get your computer problem solved so you can post normally...Tony [/quote]

Funny. REAL funny. Probably more so with newbies.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Scottdad #177201 02-02-2014 10:19 PM
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it is special characters that cause it, it is not random. For some reason they create a code issue that the board rejects. So please try and use a minimum of them as my favorite three periods in a row at the end of something to indicate that there is more unsaid to the thought triggers it every time. Apostrophe s also occasionally cause this frustrating BS. I can't wait to have this solved. It makes us look incompetent as an organization. I wish it was our software and that way we wouldn t be dependent on some outside firm to get their act together.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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