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No good news I'm afraid...

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Hi all,
The results are in and the findings are not good. The tumor shrunk from 2.5cm to 1.9cm which is a minor improvement. The right palatine tonsil appears within normal limits. But, Asymmetric enhancement involving the left palatine tonsil with extension into the soft palate, scattered cervical adenopathy, and irregularity of the left torus tubarius.
So now it appears the rads did the job with some shrinkage of the tumor and right tonsil, but where it was clear on the left side, I now have been redx as having squamous cell carcinoma which the doctor tells me was probably there all along but the size of the tumor of the base of my tongue was so large(almost 5 cm before surgery)it was hiding everything. I am completely destroyed. No chance of trache being removed because epigillitos is still laying flat.
The onco is repeating my PET on Friday and I mean with the ENT tomorrow for his decision. I have been told looks like surgery, chemo, and rads this time. But the doctors have to get together after the PET and decide. I am just so angry that all of this wasn't able to be found during the last 2 years. But I saw the scans from 3 months ago and the left tonsil and nodes on the left did not look nothing like they do now. And I only had rads to the right tonsil and BOT.
Wasn't what I wanted to hear. Not sure what I want to do now. My fiance told me to keep planning our wedding because he doesn't care how many extra parts I have or whether I can speak, have hair, my trache or not, he just wants to marry me. I think those were probally the sweetest words I could have heard. I am just mad and want to kick something..lol. My faith is taking a hit but i am really trying to understand this.
Sorry for the vent. Most of you have had it worse and I don't mean to fall apart. Thank you all for your strength and understanding.

Debbie

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

And for that matter, kick something. Just make sure it's not the dog or the fiance.
And, speaking of the fiance, he's a keeper. Hold him close, and don't let him get away.
We're here for you.

--Jim in Delaware

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hey Debbie. Hang in there. Your fiance has given us all a wonderful dose of what is best about humanity. You're looking at a long road, but you can and will come through the other side healthy and happy.

Thinking of you.

Mick

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

You sound like a trail i took, miss the tumor, a few times...i know exactly how you feel, angry, wanting to blame, I did, you have everyright to vent, I had to go see my cancer support freind today, her cancer came back and she too had surgery 7 days ago. What a fighter, positive, I wish I could have been more like her, But I was there for her and we met for the first time at the hospital with her husband by her side, she had a radical surgery, with a hole permanently fixed, feeding tube, yet she smiled, and is going home tomorrow, my cancer, wasn't as radical as hers, but she suppports me and you will fight and win this sucker, I wonder about my trach, can I survive without it, I'm not going threw this again..i told doc to let me go if my air wave goes. sounds rough, but I am tired...you have a lot going, your strong and you will make this. Take Care Deb....you have our support, vent away..Dennis

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Debbie,

Ever since you've been posting, you always have a good outlook and are such a fighter. Sorry to hear this, so you have every right to vent. Keep the good fight going! You'll beat this. And it appears you have some good motivation from your fiance'. He sounds like he's a great guy. I'll be thinking of you the next few days.

Positive thoughts coming your way!
Greg

davidgskinner's picture
davidgskinner
Posts: 81
Joined: Dec 2009

I was going to write stronger words but I am sure they would just get edited. I am terribly sorry about the news. Find something to kick or punch for sure; pillows are good and don't leave bruises on you. It is good you have such a fiance, I am sure he is trying hard to support you. A good man.
We will keep pulling and praying for you.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

to hear your battle is far from over, Debbie. Your Drs. are supposed to be good, and maybe because of the tumor's size they really couldn't see it...Would advise not to vent to your Drs., though- save that for the end of treatment!

As for how trying this is, Debbie- it is as it is. Simple as that. Things are as they are. Good people take hits in life all the time. I know this is disappointing, but just try to accept it for what it really is- just the C trying to do a number on you, which you will not let C do. And, it might be a good time to try and strengthen your faith, too. The Lord will be there for you, Debbie, helping you deal with it all- all you gotta do is Believe- really Believe. Lord had nothing to do with your having C, or any of us. Things just are as they are. You'll be in mine, and all of our, Prayers, Debbie. Focus on the Positive- you will survive this, and

Believe

kcass

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

and wishing you strength and a bit of peace as you face the days ahead. You CAN beat it - just need to take a few more swings at it. My husband is also dealing with reoccurence, and it is so devastating.

((Hugs))

Jan Trinks's picture
Jan Trinks
Posts: 447
Joined: Apr 2009

Hi Debbie:

So sorry about your news, but try and stay positive. I know that's easier said than done. Right now, we're dealing with my husband return of head and neck cancer in the stomach, liver, lung, and a spot on the spine. Doc. told us this was very rare for it to return in these places instead of his throat. And it's not stomach, lung, liver or bone cancer but the same type he had in his throat in these place. But, he's feeling good; has had 4 of 7 erbitux/taxotere treatments and we have a whole host of family, friend, all of y'all praying for us. Since all of this came about in the last month and a half I have read in a book by Charles Allen (it's very old book; my parents used it in their Sunday School teaching) All Things Are Possible Through Prayer about praying for healing and he mentions several things: 1) Belief that God and medicine go hand and hand; after all God made the medicines and He made the physicians! 2) Believe that God can and will heal; 3) Remove any hindrances from your praying about this (and that can be a hard thing to do; and 4) Trust Him in His will for healing but also that we have every reason to believe that God will heal. This has helped me a great deal as we have been married 35 years and have no children and are so connected as your fiance sounds like he is to you. But as the others have said it's perfectly alright to want to kick something; I've had a meltdown or two myself, but we're in the fighting mode now and although we (and I consider it we as we are dealing my husband's cancer together) have cancer; IT DOESN'T HAVE US! God Bless you and your finance and we will be praying for y'all.

Jan and Charlie Trinks (I refer to myself as the basketcase wife!)

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

I really wish you had gotten better news. News like this is so deflating and it is easy to walk away feeling defeated but let me assure you that you ARE NOT DEFEATED.
Like others have said, punch something soft and then press into your faith. The Lord is with you and when things get tough you just have to press in more. All will be well.
You sound like you have a wonderful fiance and together you will get through this difficult time.

For God has not given us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

I am praying for you!

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

It sounds like your fiance is a fantastic man. Love is a great thing. You are a fighter - it is just going to take a little longer to fight the beast. You are in my prayers.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I know that you know that this game is not over - sorry it had to go into extra innings, though. It's easy for me to sit here and say - you've got strength, attitude, docs, meds and family going for you - you'll do fine. Truth as I see it is "this sucks". I'm sorry you have to rely on all your assets for another round - I'm sorry you're not like most of us, coasting 'til the next set of tests - sorry you can't get rid of the trache yet. Please don't apologize for venting - I'd be worried about you if you didn't feel like venting.

Please let us know which direction you're taking with this stage of the fight, and keep us updated. Oh, and please give fiance a kiss on the cheek for me, and tell him that his wonderful, romantic words made several people here feel good.

Do well

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Family, thank you for everything...allowing me to vent, words of encouragement, prayers. My fiance also says thank you and that he loves me and that should be obvious(he was embarrassed I told what he said):). I see the ENT in the morning and am having my PET repeated Friday to make sure this has spread any farther. I am so thankful to have you all in my corner. And big thanks to Pam and the rest of you who let me talk in chat tonight. That helped so much. My Mom reminded me that God doesn't give us more than we can handle and to just let him help hold me up. I will get thru this. Just because it's extra innings doesn't mean the game is over. I think I have a grand slam due. Will keep you all posted. God Bless.
Debbie

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I am so sorry that the reports were not good and you have so much more to go through. I agree with the others, your fiance is definitely a keeper!!!

Stay strong and know that we are all here for you.

I will keep you and your family in my prayers.
Glenna

rozaroo
Posts: 667
Joined: Apr 2010

Thinking of you & wishing your report's turned out much better. Your fiance is a special man & if he said to go ahead & plan that wedding then Go For It! Many prayer's are being sent your way & also to your family.
Hugg's Roz!

rozaroo
Posts: 667
Joined: Apr 2010

Thinking of you & wishing your report's turned out much better. Your fiance is a special man & if he said to go ahead & plan that wedding then Go For It! Many prayer's are being sent your way & also to your family.
Hugg's Roz!

rozaroo
Posts: 667
Joined: Apr 2010

Sorry for the double post!

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