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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Newbie here & reaching out

Topic: Newbie here & reaching out

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: May 19, 2017 05:58PM - edited May 19, 2017 05:59PM by AnnBR

AnnBR wrote:

Hello everyone! Two weeks ago I was told that active cancer cells were found in my spine and I heard the words that no one wants to hear, 'It can't be cured.' Wow. I went from Stage 1 to Stage 4 in 4-1/2 years and I had a low oncotype score when I was first diagnosed. Geez! What happened?! But knowing it can be treated like a chronic disease and that there's many treatment options havegiven me hope. I really am at peace with the diagnosis. I have never been treated with chemo as my Mayo team says the long term side effects outweigh the benefits and being ER+ and PR+ and HER2- is more successfully treated by radiation and hormone therapy. I'm not questioning my amazing team but I'm curious if others have had a similar diagnosis and treatments? Thank you! Ann

I have BATTLE SCARS on my body...but I have a PEACE in my HEART. Dx 11/15/2012, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 12/8/2012 Mastectomy Hormonal Therapy 1/16/2013 Surgery 4/29/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 5/12/2014 Femara (letrozole) Radiation Therapy 6/1/2014 Breast, Lymph nodes Dx 5/2017, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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May 19, 2017 09:56PM Tina2 wrote:

Hello, Ann. Welcome to the Cool Kids table!

All of us here have a Stage IV diagnosis. Many of us are ER+ PR+ and HR- and doing very well.

Are you on Faslodex and Ibrance? Check out the pertinent threads. Ask questions and hang around. You'll get support and good info.

Tina



Stage I, 1985, modified radical mastectomy; Stage I, 1995, modified radical mastectomy;Stage IV, lung mets, ER+/PR+; treated with Faslodex since July, 2011 Dx Stage IV, mets, ER+/PR+
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May 20, 2017 04:41AM Heidihill wrote:

Really sorry you have to join us even if we are a cool bunch. I think its great that you are at peace with the diagnosis. That is a good place to start healing. Not having had chemo probably means you will be more responsive to it should you have to take it. Still it would be good to get a second opinion. I always ask my team questions as if they were defending a doctoral dissertation. My life is at stake. With a second or third opinion you have more ammunition for questions.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 20, 2017 05:15AM stagefree wrote:

Hi Ann,

Sadly welcoming you, yet be assured this is a looong treatment, if not cured. There are bumps along the way, yet mostly can be doable :) please be sure you are not alone!

Hugs

Ebru


Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2- Chemotherapy 4/11/2012 Xeloda (capecitabine) Hormonal Therapy 8/24/2012 Hormonal Therapy 6/8/2016 Arimidex (anastrozole), Zoladex (goserelin) Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Xeloda (capecitabine)
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May 20, 2017 05:59AM dtad wrote:

AnneBR...so sorry you are facing a recurrence. What a great attitude you have! Just goes to show you what a crapshoot recurrence is. Good luck going forward treating this chronic disease.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 20, 2017 06:17AM Lynnwood1960 wrote:

Welcome Ann! Great group here, lots of support, tips and information!

Dx 4/6/2015, ILC, Right, 3cm, Stage IV, Grade 2, 0/12 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib)
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May 20, 2017 06:24AM Emily2008 wrote:

Ann, I am not stage 4, but I had a recurrence 8 years after my initial stage 1 diagnosis. The first time I did complete chemo, had a double mastectomy, was on Tamoxifen for 6 1/2 years, and had an Oncotype score of 14. So I really shouldn't have recurred, based on my stats and the aggressive treatment I underwent.

I don't know what will happen in the future, but I certainly have realized now that there doesn't seem to be a whole lot of rhyme or reason to who recurs, who metastasizes, who stays NED for the rest of their life, etc.

Hugs and prayers as you move forward.

Dx 5/08, IDC, Stage 1, Grade 1, BRCA 2 pos. Mast. w/TRAM and implant, A/C x 4, Tamox. for 6.5 yrs, ooph and hyst in 2010. Dx. 10/16, local recurrence, Grade 2, breast segmentation, 30 rads from Jan-March 2017, then AIs. Dx 5/14/2008, IDC, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 10/31/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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May 20, 2017 06:59AM melmcbee wrote:

Hey Ann. I turned stage 4 with bone mets at around 4 1/2 years to. I think we were on tge same threads back in the beginning. Im sorry you are here. However welcome. I did bilat nastectomy raduation and chemo but I had 8 positive nodes. Im on faslodex ibrance and xgeva. Prayers and gentle hugs to you

Melanie. mentor smooth round high profile gel 700 rt 550 lt with fat grafting 5/30/2013 Dx 6/24/2012, ILC, 2cm, Stage IIIA, Grade 2, 8/15 nodes, ER+/PR+, HER2- Surgery 7/8/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/8/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/22/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/8/2013 Breast, Lymph nodes Surgery 5/29/2013 Reconstruction (left); Reconstruction (right) Surgery 12/3/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Targeted Therapy 5/15/2017 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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May 21, 2017 06:36AM Alcarroll wrote:

Hello Ann,

I was diagnosed one year ago, Stage 4 from the start. Was started on Femara (Letrozole) right away and have been on it this whole year. No progression, primary tumor has shrunk and the "extensive" bones mets are still there but, I'm told by oncologist, too small now to be picked up on PET scans. I've had no chemo, no radiation.

I'm feeling pretty positive about treating it like "a chronic disease."

Best of luck to you!

Dx May 2016, IDC, Stage IV, metastasized to bone, ER+, HER2-, May 2016 Treatment: Lupron injection, Letrozole, August 2016 add Xgeva
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May 21, 2017 04:30PM - edited May 21, 2017 04:33PM by AnnBR

Thanks ladies! You ARE a cool bunch. I'm on Ibrance, and monthly injections of Xgeva & Faslodex. So far so good. I decided I need to plan out my celebration of life service so I am writing down my wishes and getting photos in order, because my husband will be clueless and I don't want my son and daughter to tackle this. Once my affairs are in order, I plan on living a nice long life!

I have BATTLE SCARS on my body...but I have a PEACE in my HEART. Dx 11/15/2012, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 12/8/2012 Mastectomy Hormonal Therapy 1/16/2013 Surgery 4/29/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 5/12/2014 Femara (letrozole) Radiation Therapy 6/1/2014 Breast, Lymph nodes Dx 5/2017, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)

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