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Topic: No Longer NED for BC Mets

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Jul 20, 2007 05:26PM

CalGal wrote:

We got the devastating news this morning ... from my endocrinologist rather than my oncologist who we met with later ... All my questions about my high calcium level led to the endo giving me the PET/CT scan results. At least there was time to come home and melt-down in-between appts ... and get my questions ready for my onc.

I had thought that my NED liver mets were more likely to re-appear than a met in some other location, but my liver is still fine.

From a clear PET/CT in April, I now have a mass on my lower right lobe (lung). There was uptake on the thyroid too; but they're saying not to worry about that since I already had a (benign) biopsy (or is due to the likely lung met being more serious?) A lung biopsy is in process to be scheduled.

While it's not a proven lung met yet, I know that is the likely outcome. I'm an optimist, but also realistic ...

I also learned that it's not just bone mets that can cause an elevated calcium level, but other mets as well.

I was so enjoying being NED (one year NED for mets to the liver, 4 mos NED for kidney cancer and it had been 8 months since chemo). I was hoping to get back to pre-cancer normal (I really wanted to get rid of that chemo belly ...) and now chemo is around the corner. So, I'm going to try and figure out the best chemo option for me, a BRCA1, triple negative with a lung met ...

Trip Neg, BRCA1, Mets dx 12/05 despite 2 cm tumor & clear nodes at orig dx 9/04.. Liver, lung & one bone met.
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Jul 20, 2007 05:45PM jacqniel wrote:

Calgal - I am SO sorry. I feel your devastation and pray for strength to face this new challenge. Hugs, Jacque

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Jul 20, 2007 05:56PM mibriggs wrote:

Cal Gal, I am sorry to hear this, hun. Keeping you in my prayers, and praying that you have clarity in your decisions, that are ahead of you.
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Jul 20, 2007 06:23PM jonimb wrote:


Sorry to hear this news, but you'll get on a new chemo, and kick that lung met in the butt!! Big Hugs to're in my prayers.

Joni, Chestermere, Alberta, Canada
Joni, Chestermere, AB, Canada, Today is the BEST day of my life EVER!! Dx 9/25/2006, IDC, 4cm, Grade 3, 1/15 nodes, mets, ER+/PR+, HER2-
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Jul 20, 2007 06:33PM WendyV wrote:

Oh CalGal, I am so sorry to hear this news. I completely understand that you are devastated, any one of us would be. You have been such an inspiration to so many of us, and your successes in your cancer journey are something that I think of often. I have no doubt that if this mass turn out to be cancer, that before long you will be telling everyone how you got rid of your liver mets, got rid of the kidney cancer and yes tackled the lung met too and returned to NED. I think all of us realize that in our journey that we are going to have periods of being stable and or NED and then we are going to have times were we have some progression and need to explore different treatments options to return us to stable. The key is that we stay one step ahead and I'm sure that you and your oncologist are going to find the right treatment plan to take care of that little lung met! You've done it before CalGal and you will do it again!!! You'll be in my prayers. Keep us posted on how things are going. I'm sending strength, courage, love and hugs.
Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.( bone,liver,brain,lung mets) Dx 10/9/2006, IDC, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jul 20, 2007 06:51PM LemonDrop wrote:

Thinking of you CalGal and wishing you the best. You fought it before, you can do it again. You will find the strength within yourself. I understand how disappointed you must feel. Get ready for the challenge ahead. You can do it. We are here to support you.
Hugs and peace.

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Jul 20, 2007 07:02PM LuAnnH wrote:

That stinks! Sorry to hear you may have had progression. Take a breather and relax, you will come up with a plan of action and be back sharing the news that you are dancing with NED again very soon.

LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jul 20, 2007 07:04PM AusAla wrote:


I am so sorry to read your news. You are in my thoughts and prayers. We are here for you.

Hugs and positive thoughts coming your way,
"I don't want to be in a battle, but waiting on the edge of one I can't escape is even worse! Pippin, Lord of the Ring: Return of the King Dx 5/13/2002, IDC, 2cm, Stage IV, Grade 3, 3/17 nodes, mets, ER+/PR+, HER2+
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Jul 20, 2007 07:22PM LisaSDCA wrote:

Hon - you have found the way to beat this sneaky basta#d before and I know you will this time, too - for GOOD. You are such an inspiration for me and many others. This damned triple negative tumor finds a place to invade and you kick it out and we learn from your experience. Get ready to kick some more cancer bootay!
Stage IV mets to brain 11/2008 BRCA-1 positive Dx 1/24/2007, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jul 21, 2007 12:58AM katie11 wrote:

Oh, CalGal, I've just logged on and have found this post straight away. I am so very sorry you are having to confront this horrible disease again, it's just so damn unfair! You are one strong woman, though, and have fought it before and can do it again. You'll be back to NED in no time and sharing more success stories with us all and continuing to be an inspiration.

Hugs and positive, healing thoughts and fists up ready for that fight, darling!

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jul 21, 2007 02:23AM tos wrote:

Calgal, bless your heart, yes we are here for you. You've been such an insiration to so many of us and we know you will fight this like you have the rest and we will hear that NED story once again! I so wish you didn't have to go thru this again, I can only imagine where your heart is right now but yes get that paper and pen out and start those questions. You are a great advocate for yourself and you will win!!
Please keep us posted on how you're doing and how the biopsy goes. Big hugs thru cyber space to you!
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Jul 21, 2007 03:49AM RobinWendy wrote:


Like everyone else who responded to your post, I just want to let you know how sorry I am that you have to deal with this -- again. As you know, I too, have to confront chemo after 3 1/2 years of NED. It is devastating and I am scared, too. But, hopefully, we will both be dancing with NED again soon. Hang in there... and I will, too!!

dx Stage II primary BC in Jan. 2001;dx with DCIS on other breast in Jan. 2003; dx with mets to lungs in Jan. 2004 and in May 2007, mets spread to liver. Dx ER+/PR+, HER2-
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Jul 21, 2007 04:31AM Fitztwins wrote:

That darn NED!! what the heck does he think he is doing? taking off like that??

I am sorry about the new scan results. With every scan and test gives us information to arm for the next confrontation.

Maybe we can all give NED a call to come on back. =0)

We have your back sister. One day at time.

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/18/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/31/2005 AC + T (Taxol) Radiation Therapy 4/30/2005 Breast, Lymph nodes Targeted Therapy 5/31/2005 Herceptin (trastuzumab) Hormonal Therapy 12/31/2005 Femara (letrozole) Hormonal Therapy 6/1/2008 Aromasin (exemestane) Targeted Therapy 6/30/2008 Herceptin (trastuzumab) Hormonal Therapy 6/14/2013 Arimidex (anastrozole) Targeted Therapy 9/4/2015 Perjeta (pertuzumab)
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Jul 21, 2007 05:26AM fd411 wrote:


I'm sorry to hear that you might have lung mets. If you have to do battle again, I know you can knock this one down, too.

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Jul 21, 2007 06:07AM nosurrender wrote:

This is such a shock to read! You have always been my hero and you still are!
Cancer doesn't stand a chance with you and NED will be back!

BTW- my thyroid lights up all the the time too- nothing to worry about.

Sending you huge hugs and prayers,
g ~What a long, strange trip it's been...
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Jul 21, 2007 06:41AM Shepgirl wrote:

S H _ _! wish it was better news! Hoping you will get back to NED soon!

Remember RFA works on the lung too!!!!
Dx 12/23/2004, IDC, 2cm, Stage IV, Grade 2, 2/22 nodes, mets, ER+/PR-, HER2-
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Jul 21, 2007 06:41AM Sierra wrote:


Just wanted to add my
prayers for you
also, along with the other


The Time is Now! Dx 1/2000, 3cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-
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Jul 21, 2007 07:12AM GailAnne7 wrote:

Keee-Rap!!! I hate to hear this news. I hope that your Onc finds something to kick it's but. Have you been on Taxol yet? It's kicked butt for me this year.
Take Care
Gail in NJ
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Jul 21, 2007 09:15AM wallan wrote:

This is crappy. I am so sorry to hear it. Try to think of it as just a large bump in the journey though. Not an end.

It sucks though. HUGS to you.

Wendy A
Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 6/1/2004 AC + T (Taxol) Radiation Therapy 12/1/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 21, 2007 09:43AM AnnieBird55 wrote:

I am so sorry to here this. I guess this may be a case of a few steps forward then one step back.
I shall hold positive thoughts for you for the upcoming lung biopsy.
Anne Dx 3/23/2007, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Jul 21, 2007 11:56AM brando wrote:

I don't know what to say...I was getting to know you and I have always read your messages on the board...I have learned so much from you...
I know I should offer the same condolences as everyone here, but I am still wondering...WHY DOES THIS HAVE TO HAPPEN TO YOU!!!
Dx 11/13/2006, IDC, 6cm+, Stage IIIC, Grade 3, 3/20 nodes, ER-/PR-, HER2- Chemotherapy 12/1/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Surgery 4/1/2007 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Radiation Therapy 6/1/2007 Breast, Lymph nodes
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Jul 22, 2007 11:38AM ForTheMoment wrote:

Geeeeez!!!! This just plain sucks! Get that cancers butt right back where it came from. You've done it before, you'll do it again.

You can do it!! Hang in there and know we are all pulling for you.
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Jul 22, 2007 12:58PM jjb1984 wrote:

CalGal, I'm so sorry for your news; it the one we all dread. But I have every faith that you'll kick it in the butt and be back with NED. Sometimes he's a runner, but you'll have him snagged back in no time. Remember it gets easier once you start to take action on the dx; hang in there!
Dx 3/3/2006, IDC, 6cm+, Stage IV, ER+/PR+, HER2+
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Jul 22, 2007 01:48PM luvcats wrote:

CalGal, I am so sorry to read this. You are in my thoughts (((hugs))).

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Jul 23, 2007 10:02AM Mary1968 wrote:

God Heals

Remember when you heard the words -
and your mind went blank - you were in another world
God heals
Remember in your darkest hours -
when all that surrounds you is pain and sorrow
God heals
Remember friends' prayers - your family's encouragement
- glimmers of hope from everyday angels
God heals can hear Him now -
always there - yet never this close
God heals
It's just another day -
yet everything has changed - and you hear yourself say
God heals
Birds are singing -
the sky is a beautiful blue - flowers are blooming...
God heals
Truths that you knew as a child -
awakened again with new understanding
God heals
Remember when others can't -
that life is a gift - each day to treasure
God Has Healed
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Jul 23, 2007 11:11AM jacqniel wrote:

Mary, what a beautiful poem. Thanks for sharing!

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Jul 23, 2007 11:34AM Chelee wrote:

CalGal, I am SO SORRY to hear the news you were given. I am going to be praying really hard that the lung mets are NOT that at does happen. (Thinking really hard...sending positive energy for a FALSE positive.)

I just hate this darn disease! Know that I am thinking of you and keeping you in my prayers.

Dx 12-05, Stage IIIA, Her2/Neu, 3+++, Er & Pr pos, 5 of 16 pos nodes. Dx 12/20/2005, IDC, 3cm, Stage IV, Grade 3, 5/16 nodes, mets, ER+/PR+, HER2+
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Jul 23, 2007 01:08PM lexi4 wrote:


I am sorry that you are going through this. This disease stinks...

Hugs and Prayers,
Dx 8/22/2005, IBC, 3cm, Stage IIIB, Grade 3, 5/6 nodes, ER-/PR-, HER2+
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Jul 23, 2007 05:09PM Fllorik wrote:

Don't lose hope! I know you will be able to get through this and be NED once again!

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Jul 23, 2007 05:31PM joanne1428 wrote:

CalGal.... I am so so sorry...... this really does suck.

One thing I am wondering is if there is just one mass, and they are doing a biopsy, could they not just chop the darn thing out of there? Maybe it is just one isolated mass, and I actually think that a "one mass" presentation is better than when it is all over in spots all over the place.

Sincerely hoping for B-9 results on that biopsy, and if not, I guess the boxing gloves come out of the closet for the next round.

Please keep us posted, and along with the others, I will also be praying for you.

My hopes are not always realized but I always hope - Ovid Dx 4/2006, IDC, 1cm, Stage IV, Grade 3, 0/33 nodes, ER-/PR-, HER2-
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Jul 23, 2007 06:07PM LinTol wrote:

Sorry to hear this news. And if you do have to start chemo again, it is ok. You will just put the gloves on and continue to beat it!! You can do it and you know that we are all with you!
By the way, how did you get rid of the liver mets? I have been fighting mine for 14 months now.
Praying for you!
Linda Dx 5/2006, IDC, Stage IV, ER+/PR-, HER2-

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