Topic: It's back :-/

Well looks like all my bragging about how good I am doing has come back to bite me in the ass :-/ There is a new spot on my liver... I meet with my oncologist tomorrow to discuss where we go from here.... I'm scared and extremely frustrated BUT I know everything will be ok and ill beat this AGAIN. Ill keep y'all updated on what the plan is... Prays and positive thoughts are always welcomed smile

At any given moment you have the power to say: This is not how my story is going to end! -Unknown

Re: It's back :-/

Dear Nat, I am sure you were shocked to say the least but remember as long as you have options that is a good thing. We will be anxious to hear what your ONC says.

                                         I asked for strength.
                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed. By Aaron Hoopes

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: It's back :-/

Oh my, I'm so sorry.  Please keep us posted with what the plan is.

Best wishes,

Susie

Re: It's back :-/

Oh Nat, so sorry for the not so positive news. You will attack this as you have attacked it before and come out the winner. Keep those thoughts positive and keep us posted on that plan of attack.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: It's back :-/

Nat,

I'm so sorry to hear the beast has returned.  How I hate this disease!!!  But you're young and it sounds like you have a strong spirit so that will keep you fighting!!!

You're in prayers!!!

Peace, Love & Hugs,
Mary

Re: It's back :-/

Nat,
So sorry to hear this.  Lot's of positive thoughts and prayers coming your way from Wisconsin. 

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: It's back :-/

Mat,
I am sorry to hear this news. Sending good thoughts and prayers.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: It's back :-/

Well I am feeling much better after meeting with my oncologist. He feels very positive about everything. The first step is I will meet with my surgeon next week to see if he feels comfortable just going in and removing then following up with aggressive chemo but if he isn't comfortable with doing the surgery we still have the option of doing several treatments of cyber knife combined with chemo. I feel like we are definitely moving in the right direction and I have 100% confidence in my Drs and in myself!

At any given moment you have the power to say: This is not how my story is going to end! -Unknown

Re: It's back :-/

This is good news Nat. My Teddy had Cyber Knife, a real miracle for us! I love it when we get options and you have options. That is good news. I think T had 4 treatments in one week and that was it! Best of luck.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: It's back :-/

Best of luck , please keep us updated

Re: It's back :-/

Very positive news for you. Sounds like you are headed in a good direction.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: It's back :-/

Well it's just so confusing because at first it was cancer and now they are saying they don't think it is... So it's like is or isn't it?! And what are y'all gonna do to determine whether it is or not?!

My surgeon is calling my oncologist today so they can "discuss" everything BUT I'm going to push for them to at least do a biopsy... I feel like waiting 3 months to get another MRI isn't an option! There was obviously a reason why they initially said it was a tumor so I can't spend the next three months paranoid that this cancer is living and growing!! Hopefully we will have answers soon!

At any given moment you have the power to say: This is not how my story is going to end! -Unknown

Re: It's back :-/

Nat, the only thing I can say is PLEASE get another opinion. Please!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: It's back :-/

Nat,

That is so frustrating.  I feel really bad for you.  No way can you sit around and wait three months.  That would drive anyone crazy.

As Lainy said, a second opinion might be wise at this time.  Just so you're sure what the outcome is.

Good luck and please let us know what happens.

You're in my prayers.

Peace,
Mary

Re: It's back :-/

Can't they do the MRI now if they think it would help determine if it is cancer or not?

Re: It's back :-/

I've had a CT scan, a MRI and a PET scan... They were saying it was cancer until it didn't light up on the PET.

At any given moment you have the power to say: This is not how my story is going to end! -Unknown

Re: It's back :-/

Nat, again, I really believe with all my heart that you need a 2nd opinion. I forgot where you are being treated?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: It's back :-/

Nat......you would want to "absolutely" rule out a recurrence of this cancer. I agree with the others, a center with a high volume of Cholangiocarcinoma patients is likely to have the expert physicians "very" familiar with this cancer. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: It's back :-/

Not knowing is the worst. There is so little they know about cc compared to other cancers.

Prayers and support coming your way! hopefully you're able to update us with good news soon.

Re: It's back :-/

Nat,

i agree with some of the others - you really need to get a second opinion.  I have been told by the experts (at MD Anderson - who treat more of this cancer than anyone else), that CC does not show up well on PET scans.

Since you are in Oklahoma, if its possible you should try to see the doctors at MD Anderson in Houston.  They are incredibly knowledgeable.  If you need any help just contact me through email or you can text - 954-401-1069. 


tom

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".