Bad news, no longuer NED

[fullofbeans]

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.

[freyja]

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

[PinkGirl]

I'm so sorry FOB. I know you'll take some time to stew, vegetate,
scream .... whatever ... and then you'll come out fighting. You're a
tough nut and I know you will be able to beat this back. We're all
here for you. Have a good cry if you need one and then come out
fighting.

[Ellie F]

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

[whatz]

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

[ElaineM]

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.

[Mary Anne in TX]

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

[Nancy L]

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!!!!!

[Ellie F]

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

[StephN]

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.

[Nancy L]

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.

[caya]

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

[jml]

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

[WolverineFan]

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

[DanaRT]

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

Love,
Dana

[Pam P]

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

[Shobha]

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

[lkc Gumby]

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.

[Laurel]

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...

[fullofbeans]

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.

[fullofbeans]

actually just talked to the team and they tell me than they reviewed my last scan from 2/3months back and they said that they expect that it is localised so I feel better the registrar is calling me on Monday with treatment plan but I am pretty sure that it will be radiation.

Any feedback on supraclavicular treatments and what the best course of action? supplements ect..thing that sensitize cancer cell to rad or protect your good cells?

Tykerb is not available here unfortunately but I think i will ask to stay on herceptin. There does not seem to be many supraclavicular in the Her2+

[Diane H]

This is tough news, and know it is hard to process. Wishing you another "forever" round of NED, it's waiting for you.
Big Hugs, and prayers coming your way.

[Lori R]

Dear FOB,
I am encouraged by your more recent post indicating that additional data is coming in and it is good news. Seems like you have many options..YEA!!! A quick zap to the nodes would be great!

I used the zap a met approach with the cryo and then followed up with an insurance policy via another round of chemo.

Hopefully others on the site who have had mets to nodes can offer up some real world advice on next steps.

You will overcome those pesky cells!!!

[flynny]

My thoughts are with you. I hope you all the tests go well.

sarah

[fullofbeans]

Thank you all, and for your feedback no need to tell you the thought of more chemo with possibly just a little extra few % improval of desease free I am not sure,obviously part of me is feeling a bit defeated at the moment.. but still trying to take control and yes as you can imagine I am doing a lot of reading at the mo found this about the benefit of radiation:

http://www.thefreelibrary.com/Isolated+supraclavicular+recurrence+of+breast+canc er.-a0106940927

"The distant disease-free survival rate was somewhat better for the 25 patients who underwent radiotherapy as part of the treatment for supraclavicular recurrence than it was for the 17 patients who did not receive radiotherapy (P = .06). When the 8 patients who had received axillary and supraclavicular radiotherapy as part of their initial treatment were excluded, the difference became more dramatic (P = .002). Thus, the experience from this community setting indicates that isolated supraclavicular recurrence occurs uncommonly, but when it does, it is an indicator of soon-to-develop distant metastases. The overall local control rate is quite high with radiotherapy[....]he data in this report from The Netherlands indicate that local control can be achieved by radiation therapy, but the numbers were too small to demonstrate any survival advantage by additional chemotherapy. Chemotherapy or hormonal therapy alone was less likely to produce local control. "

Jessica what when and with what were your supraclav treated..?

[Lani]

full of beans, please be careful and look to see what type of breast cancer patients had before interpreting studies. Her2+ breast cancer is a whole 'nother beast than other breast cancers and I would not assume what holds for breast cancer as a whole (80% of which are none her2 amplified) holds for you

Looks like a lot of her antiher2 treatment news will be available at ASCO so lets all keep our eyes out for new possibilities for you

[fullofbeans]

Lani, thank you. I know from this board that the lack of supraclaviv is not good sign and they seem to keep on coming back..

[Karen Wheel]

Dear Beans ---
I love that name you have! :-) I have to think it should be substituted with full of LIFE! ;-)

Hang in there - I'm not walking in your shoes however... I think you might want to read a few of the books I am reading --- to do a combination along with the therapy they are giving you ---- to help your body work together with the doctors' therapy to kill off the cancer cells!

Favorite Books:
o The Cancer Battle Plan Sourcebook (this is the updated version) - by David Frahm
o Crazy Sexy Cancer Survivor – by Kris Carr
o Beating Cancer with Nutrition – by Patrick Quillin PhD, RD, CNS
o Eat to Live – by Joel Fuhrman, MD
o The Gerson Therapy – The amazing nutritional program for cancer and other illnesses – by Charlotte Gerson and Morton Walker, DPM

I am reading in depth now the Beating Cancer with Nutrition - and it is wonderful! A must for us battling cancer - and the guy is a PHD who worked in a cancer hospital for years to help the chemo and radiation therapy work better.... very good stuff there. It also comes with a audio CD that gives an overall of the book -but very good stuff!

Sending you good positive healing energy!!!!!!!!!! Hoping you have good news for us in the near future .... Karen

[mmoons]

FOB-
Please try to remember how you felt the first time you were told you were NED. Hang on to that feeling....because you WILL get that news again.
I hope you feel all the love and prayers and support coming your way, FOB! We are all cheering you on as you defeat this wretched disease again!!

Maureen

[michka]

FOB, just sending love and strength. Michka

[tricia keegan]

I just saw your news FOB and was sorry to hear it.
Just wanted to send all the Irish luck I can muster for you, and really hope the results are confined :)

[krisvell]

FOB;
Rats.. that stinks. Please know that I am routing and praying for you.. Your posts have been a great help to me. I hope I can help through my support for you...
Kris...

[Barbara2]

I am sure sorry that the news was not what you/we were hoping for, but now we will focus on getting you to NED. You are in my prayers for healing, courage, and comfort. Many here will offer whatever they can for advice and encouragement. Big hugs to you, hang in there.

[Julie2]

Hoping that it is just a temporary set back and wishing you back to NED very soon.

[Lien]

Rats! Not the news we hoped for. I can understand how confused, scared and upset you must be right now. It may seem hopeless now, but we've seen worse, so we know you can bounce back from this. You've been NED for a long time, which is a good sign and it can happen again. There are several examples here.

Now give yourself some time to adjust to the new situation and then start planning. Go for a second opinion if that makes you feel better. Listen to the good advice from those who have been there and are doing well.

Sending healing vibes, hope and hugs

Jacqueline

[yankeebikachic]

Ugh, well certainly you are justified in a couple of blah days, you are only human after all. When you get all your tests done, you can come back swinging, as many of us have. Thinking of you,

[BonnieR]

FOB, just stay focused on that quote at the end of all your posts....and keep the faith.

[fullofbeans]

Thank you so much for your support. It is especially appreciated as I am fighting this almost alone, I have only told two friends and have not yet told my family (my mum is 69y/o). When I do start telling I want to have formulated a plan of action we can all focus on and thank you Bonnie for reminding me that under no circumstuamces should you loose hope. I do want a forever remission and I am looking hard at options to get me there.

But basically I am going onMonday to the hospital and I am not leaving til I have been radiated..I had 1 node for 2 weeks then 2 nodes last week and now I can feel 3 or 4..this is ridiculous. No I cannot wait any longer without loosing my sanity.


The wasted two weeks to see if it was an infection was I think terribly unprofessional, now that i think about it how could they do that when I did not show any other sign than a sore throat, no fever no elevated white cells..you find yourself wondering how these people think and they are suppose to be top oncologist?? if it had been their daughter they would they have thought better check that supraclav node darling since the statitic of people without cancer are at 68% neoplastic at biopsy..so what was ever my chance..

I should add to my quote trust yourself first but I have to transform my anger into something positive and make sure that from now on..

[Mary Anne in TX]

You turn that ol' anger into positive action for yourself, FOB. You deserve the very, very best of care and they better give it to ya!
Cheering for you all the way. ma

[BonnieR]

FOB, I understand how you feel about the team waiting to see if it was an infection. But looking at the other side might give you some comfort....in my recent situation (posted here) everyone pretty much assumed I had lung cancer and rushed into a surgical approach. Turns out to have been an old pneumonia of some sort. I had no symptoms of pneumonia or infection. But it should have been treated more conservativly first, just to find out.
I guess what I am trying to say is that things are not always what they seem and ruling out other causes is always a good idea. You and I are examples of opposite approaches.
Continue to keep the faith.

[AlaskaAngel]

FOB your intuition, your intelligence, and your determination have been your strengths in the past and I'm glad you continue to make the most of them. As you can see, we are listening. Keep moving forward.

As ever,

A.A.

[fullofbeans]

Thank you all and tha AAngel, Bonnie I agree with you but all was needed was to check an ultrasound!(and biop..) not a operation so that is not comparable. I would not have had it removed just to see what it was but an simple ultrasound..every oncologist in the world should have given one to someone in my case! or not be an oncologist you don't help people by wishful thinking and not check them (I am not telling having an operation..)

[BonnieR]

FOB, I understand. Guess I was making a feeble attempt to make sense of their actions. When, in fact, all of us here know there often isn't any rhyme nor reason...and it just reinforces the need to constantly advocate for ourselves.
Keep the faith.

[schoolteacher]

FOB,

Thinking about you today. Hope to hear from you soon.

Amelia