Bad news, no longuer NED
 

the biopsy came back with atypical cell consistant with metastatic carcinoma and apparently the ultrasound shape of the nodes was already suspect. Scan are booked (neck ab and pelvis CT to see where it is located.

Please send me prayers and wishes, right now not sure how I feel.

Re: Bad news, no longuer NED
 

I hear you. I am with you. I'll keep listening.
Love, Celeste

Re: Bad news, no longuer NED
 

Re: Bad news, no longuer NED
 

I am so, so sorry to hear this news.I guessed this may be the case when you had the ultra sound as it was a replay of my experience with my axillary nodes.
I know you will get to NED again soon and guess you will be searching the net for your options.
Hope you get your ct scan soon then the action you need to take will become clearer.
Thinking of you
Ellie

Re: Bad news, no longuer NED
 

Crap. You'll be in my prayers. Keep us in the loop.

Re: Bad news, no longuer NED
 

I am sorry. Don't give up. Keep putting one foot in front of the other. You have done very well so far. You will find a way to get past this detour in the road of life.

Re: Bad news, no longuer NED
 

Hey girl, I just want you to know I'm praying for you and believing that NED is ahead of you again. But this time is so hard. Sending you love and prayers each day. You're tough and smart and a fighter. ma

Re: Bad news, no longuer NED
 

Think positive---it may just be in your neck nodes. That is how it ended up for me (determined by a Pet/CAT scan). But remember what Dr. Slamon told me---you MUST get a biopsy of the recurrence to redetermine the characteristics of the tumor to include the ER receptor status and a FISH. If they didn't get enough tissue via the needle biopsy to perform these tests, you will need to have an open biopsy of the nodes.

After my results were back showing the recurrence was even more strongly HER2 positive and still ER negative, Dr. Slamon put me on Herceptin plus 750MG daily of Tykerb. Because tumor markers have never shown anything about my tumor, I have had a Pet Scan every three months to see how this protocol is working. Each time the size of the nodes was smaller and the SUV went down. The last one was read NED. I have been on this protocol for 14 months. I am telling you this because my general oncologist where I receive my Herceptin infusions wanted to immediately put me on chemo and said "I have never heard of this protocol" when I told him what Dr. Slamon prescribed.

Again, contact me via e-mail with any of your questions. I know how scary this is and my heart goes out to you. Stay Strong!!!!!

Re: Bad news, no longuer NED
 

Hi again
Nancy is quite right in her advice. When I recurred my second opinion onc INSISTED that they check the status of the nodes. Mine had remained exactly the same but we know that some can and do change status.
One of the problems Nancy for us in England is that tykerb is NOT approved by NICE (the body that decides what we can and can't have-bean counters)so the only way to access it is usually via a cliincal trial. To the best of my knowledge we don't have one yet of herceptin and tykerb. The whole set up is very maddening!! We also don't get PET scans. Again you either have to pay a lot privately or have one as part of some reserch or trial.I constantly harrass my onc about both these issues. He's sympathetic but says it all comes down to funding.

Ellie

Re: Bad news, no longuer NED
 

Sorry about this confirmation of your fears, Beanie.

And Nancy! That is great news. Just the sort of news that our Beans here needs to hear.

I am feeling that the 3 nodes involved may be all. As I recall some of the other gals here who had affected nodes did NOT have raised tumor marker CA 27-29.

Any way you can get the HER2 serum test over there?
Nancy, are you using this marker?

My best thoughts and prayers ALWAYS coming your way.

Re: Bad news, no longuer NED
 

StephN---Dr. Slamon has not ordered the use of the Her2 Serum test for me. I will ask him his opinion of this test when I see him in October and let you know what he says. My understanding is that FISH is the gold standard to measure whether a tumor is her2 positive.. On initial diagnosis, my FISH score was 4. On recurrence, my FISH score was 20.

Re: Bad news, no longuer NED
 

Sorry to hear this FOB - but I agree with Pink - I know you will put your Big Girl Panties (the pink ones) on and come out swinging - You are a Warrior Woman!!

Please keep us posted.

all the best
caya

Re: Bad news, no longuer NED
 

Oh FOB, I'm so sorry about the news.
I had a couple of supraclav nodes pop up on the L side
and the radiation onc did an amazing job isolating them
and zapping them away.
I've been so inspired by your successful treatment with the chemo-embo to your liver...gives me much hope & optimism for my own treatment coming up on June 8th.
So don't you lose hope.
You can beat this monster back again.
We're here to encourage and support you as you do!

Keep the Faith~

Jessica

Re: Bad news, no longuer NED
 

So sorry to hear about this FOB, but please know you are in our thoughts and prayers. Stay positive, get your boxing gloves on, and know that you have a huge, strong, support group with you every step of the way.

Hayley

Re: Bad news, no longuer NED
 

SO sorry about this news. Positive energy ~~~ and prayers ~~

Love,
Dana

Re: Bad news, no longuer NED
 

FOB I am really sorry to hear this disappointing news. I'll be thinking of you and watching to see what treatment you'll be doing to zap this back into NED. Pam

Re: Bad news, no longuer NED
 

Dear fullofbeans,

I am very sorry to hear your news. Praying hard for you to find the right treatment to return you to NED status soon.

hugs,
shobha

Re: Bad news, no longuer NED
 

FOB, so sorry to read this. I will pray that it is contained to your neck nodes. You'll be able to do this.
Stay strong.

Re: Bad news, no longuer NED
 

I am totally bummed! This disease sucks beyond expression! Damn! I'm mad!!!!! This is not the end of the journey for you, FOB, just a fork in the road. We are all here for you, behind you when you falter, ahead pulling when the hill gets too steep. You are so not alone. Praying for stalwartness in the face of this storm...

Re: Bad news, no longuer NED
 

Thank you all for your wishes prayers and warthm..now wondering what the CT scan will reveal, to be honest I am feeling like it is not very likely that it will be confined to the node since I have this persistent sore throat and hoarseness my lymph nodes are palpables so unlikely to affect my voice box.. i feel rather hopeless and a bit fatalist right now but strangely calm almost resigned I suppose, I guess I am still under the shock.