Stage 1 - 2 Epiglottis Cancer

5 Posts | Page(s): 1 

Stage 1 - 2 Epiglottis Cancer

by drummergirl61 on Fri Nov 20, 2009 01:31 PM

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Hi!

I am a 48 year old female with stage 1 or early 2 Epiglottis cancer.  Today I am getting fitted for my IMRT mask and will probably be starting radiation in about a week.  I work in an office and was wondering about time off of work and what to expect in general.  I know everyone's experience is different but if anyone with similar diagnosis would like to share their story or just need someone to talk to I'm here.  Good Luck to all!  Marla

RE: Stage 1 - 2 Epiglottis Cancer

by Oudave on Fri Nov 20, 2009 03:31 PM

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On Nov 20, 2009 1:31 PM drummergirl61 wrote:

Hi!

I am a 48 year old female with stage 1 or early 2 Epiglottis cancer.  Today I am getting fitted for my IMRT mask and will probably be starting radiation in about a week.  I work in an office and was wondering about time off of work and what to expect in general.  I know everyone's experience is different but if anyone with similar diagnosis would like to share their story or just need someone to talk to I'm here.  Good Luck to all!  Marla

Hi Marla DrummereGirl.

Welcome to the Board and the wonderful helpful people it makes up.

I too had head and neck cancer, base of tongue, on 2008 at age 47 and am now 48 like you.  I went to the james Hospital in Columbus Ohio.  I, like you and many on this Board, had IMRT radiation along with chemo for 7 weeks.  The IMRT radiation  is really great and can spare stuff like salivary glands etc.

Getting fitted was traumatic for me-felt like Silence of the lambs after getting it.  But like life-it is a matter of perspective, positive attitude, and gratitude.  I later used to joke and tease the radiation techs about it.

The fit is very very tight and hurts some but they can't have ya move even a centimeter so it really makes sense and you can laugh and tease the radiation techs.  Mine at the James in Columbus Ohio were great-let me jam to Classic Rock during my 12 to 14 minutes and I would do focused imagery and use the time to jam and pray.

few questions for me and the Board.  Where is the radiation going to cover?  Those with Epiglottis cancer will be more technical help than me-mine was base of throat squamous cell.  How many radiaitons  will you get ....35....will there be chemo or something else....how long will each session take....

Couple Rules:

Ask all the questions you have-right them down on paper so you don't forget.

Be kind to yourself and those around you and who care for you.  Always give them the benefit of the doubt-many people are uncomfortable with cancer, are afraid of saying the wrong thing and don't understand radiation.

Be as candid as possible with your employer and boss and keep them in the loop each step of the way-you will need their support down the road....never burn any bridges.... 

Turn outward not inward:  Reach out to your friends and family and those who love you and who you love.  Be gracious at their attempts to help or comfort you and speak what is on your mind to your closest....

I forgot-check with radiaologist to see if you need a PEG-or Feeding Tube......will you be able to swallow-eat thru the process......better to get the Feeding Tube Now-just an insurance policy.

Turn to the One who Loves You the Most...the One that knows your every fault and Loves you always without fail; turn to the One who sent the Holy Spirit to be Your Guide, Warrior and Champion each Day of Treatment; turn to the All-Stars in heaven-the Saints- who were tough-suffered like you-and often gave their Lives in Service to Others Out of Love; Turn to the One who hung on a Cross Just for You.  The Power, Strength, Rest and Grace you receive each day is the additonal medicine you need to get threw this with flying colors......can you do that also  ....say I am here and scared to death-please help me-I don't know where to turn.....or anything like that in your own words????

Marla DrummerGirl, this Board needs a Drummer and we need You-so you can inspire us and give us courage. Together, this Board is like an energizer to each of us who touch it and we are here for you-just add some more specific info so we can help you more but know we are here 24-7 for you.

Should that scare you?  I hope not?  Why would strangers help me?  Because we all have been there and we want the experience to go better for you and then you will pass it along to the next patient about to start radiation-that's why?

Why also-because we all have been blessed beyond belief-beyond our own imaginations.  Cancer is a thief in the night and there is a void you must quickly choose to fill-either with fear, depression, and anxiety or you can fill it with Faith, hope, perspecitive a warrior-spirit, and gratitude and service to others.  It takes practice, diligence and hard work because negative thoughts might flood you.

But this time is for you.  Be kind to yourself.  Expext good treatment-demand it.  Don't cast blame or what ifs regarding your cancer because....You are at the right place at the right time....in God's eyes and opportunities will arise even in these tough times-I promise you.

Let me know how I can help and don't be afraid to share your feelings with this Board or with the God of the Universe who can't stop thinking about You.

Oudave 

RE: Stage 1 - 2 Epiglottis Cancer

by Oudave83 on Sat Nov 28, 2009 01:47 AM

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DrummerGirl...you ahng in there....you can do this......Your GodLovesYou and is going to be with you each day.....holding Your hand and sharing Your Worry or Concern.   Now please enjoy this weekend!!!!!!!!  Oudave

RE: Stage 1 - 2 Epiglottis Cancer

by epiglottis on Sat Jan 22, 2011 02:56 PM

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On Nov 20, 2009 1:31 PM drummergirl61 wrote:

Hi!

I am a 48 year old female with stage 1 or early 2 Epiglottis cancer.  Today I am getting fitted for my IMRT mask and will probably be starting radiation in about a week.  I work in an office and was wondering about time off of work and what to expect in general.  I know everyone's experience is different but if anyone with similar diagnosis would like to share their story or just need someone to talk to I'm here.  Good Luck to all!  Marla

My father had the cancer(squamous cell carcinoma) on epiglottis. Through effective medical support he had undergone 3 cycles of chemotherapy and than followed by 34 days radiation therapy. Though in beginning radiation dont hurt but as u reach to your end week you may find it painful and suffocative, but you must continue the therapy coz its the only yardstick available. Post radiation my father has gone through intense side effects ranging from breathing prob(sense of choking), lack of saliva formation, significant weight loss.  Due to perfect sandwich therpay of radiation and chemo he has survived cancer but still he is fighting with the after effects of this sophisticated procedure. I wish you all the best for the treatment and in rare circumstances if your disease exist than do follow my instruction and visit www.cancerkendra.com


Rgds... Aditya S

RE: Stage 1 - 2 Epiglottis Cancer

by Makoto on Sun Jan 23, 2011 12:16 PM

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Here is my experience with a small cancer on my vocal cord.

http://www.cancercompass.com/message-board/message/all,28789

Good luck with things. Radiation at first is not so bad. It is the last couple of weeks, and there after that can be hard. But, some people do ok, and others it seems have a hard time of it.

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