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Topic: ‘Probable’ Bone Mets

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Mar 10, 2020 06:32PM - edited Mar 10, 2020 06:33PM by WonderNurseRN

WonderNurseRN wrote:

I have been reading these boards religiously for the last week and I cannot say how much I appreciate and admire all of you for your contributions to these boards. They have been both informative and calming to me.

I was diagnosed with LCIS in 2003 when I was 25. In 2017 I began experiencing bleeding from my left nipple that was sporadic, more around the time of my periods so I ignored them for about 8 months. Even when I visited my BS office she stated she didn't think it was cancer but with my history we should go ahead and do the mammogram. Now I had just had a mammogram 10 months prior due to a job change and insurance loss that was negative. Before I left the office that day she told me she was reasonably sure we were dealing with breast cancer. Yesss we were. IDC and extensive DCIS. Bilateral mastectomy, tissue expanders, and implants were done and I was great. Cancer was done and I was back to normal life minus my 'normal' breasts.

Then last Saturday I was visiting with my son and I had a sudden onset of excruciating back and leg pain. I have never in my life had back pain. It got better until I went to work the next day and I had to leave early which I never do. That night I got myself out of bed after flipping and flopping all night to go to the ER where I am a registered nurse, sure I had a kidney stone. The doctor did a CT of my spine and my abdomen and they found osteolytic lesions on L2 and L5 with a minor fracture at L5. I have been a mess all week. Thankfully my pain is better now aside from some occasional twinges and my legs are no longer going numb. I had myself convinced it was just osteoporosis since it runs in my family but my MO believes it is metastatic BC. So now scans and biopsies and blah blah. I am devastated. I am 42 years old!!!! I had an early stage cancer and a mastectomy with clear nodes!! How does this happen? She's already ordered my ibrance to be picked up when I follow up with her in a week after all this stuff.

Thank you for listening. It was long and my whole life story but I needed to vent I suppose. I have a wonderful family (including my ex) and amazing friends but I feel like I have disrupted everything and it's all for 'bad luck' as my MO says.

Dx 5/2003, LCIS, Right Dx 9/22/2017, DCIS/IDC, Left, Grade 2, ER+/PR+, HER2- (IHC) Surgery 10/25/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery Lumpectomy: Right
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Mar 10, 2020 06:53PM - edited Mar 10, 2020 06:54PM by Askmissa

I am so sorry you are experiencing this! What Stage were you in 2017?

Dx 6/17/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- (FISH) Surgery 8/19/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 10, 2020 07:06PM WonderNurseRN wrote:

I was stage 1 Grade 2. The IDC was 12 mm and the DCIS was ‘extensive’. But clear margins and no node involvement...I thought I was so fortunate to have beat cancer. People still ask how I’m doing. I always say ‘I’m fine!!’. I feel so defeated.

Dx 5/2003, LCIS, Right Dx 9/22/2017, DCIS/IDC, Left, Grade 2, ER+/PR+, HER2- (IHC) Surgery 10/25/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery Lumpectomy: Right
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Mar 10, 2020 07:30PM ErenTo wrote:

So sorry you are dealing with this, RN. Stage 4 forum on BCO has a wealth of information and support. Have you been on any hormone therapy since your last diagnosis? What will you be taking along with Ibrance?

Survived an unexplained sudden cardiac arrest b/w surgery and chemo (while attending a chemo info session at the hospital). Code blue, CPR, induced coma, ICU, ICD. Escaped alive with heart and brain unscathed! Dx 12/8/2014, IDC, Left, 2cm, Stage IIIA, Grade 3, 6/13 nodes, ER+/PR+, HER2- (FISH) Surgery 1/11/2015 Lumpectomy: Left Chemotherapy 3/19/2015 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 7/23/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 8/3/2015 Breast, Lymph nodes
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Mar 10, 2020 07:34PM MinusTwo wrote:

RN - sorry to hear. I'll be holding you in the light.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Mar 11, 2020 10:01AM Mudstick wrote:

I'm so sorry to hear RN. I'm wishing you all the best and glad to hear that you have good support to lean on.

Dx at 43 (2018) with multi-focal IDC (1.7cm largest) + microinvasive DCIS 7.5 cm. LVI + Positive Anterior Margin for DCIS. Local Recurrence February 2020 Dx 9/2018, DCIS/IDC, Right, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 10/11/2018 Mastectomy: Right; Reconstruction (right): DIEP flap Hormonal Therapy 12/31/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/2020, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery Lumpectomy: Right Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 11, 2020 12:43PM - edited Mar 11, 2020 12:43PM by WonderNurseRN

ErenTo i decided against tamoxifen after my initial treatment. I'm an awful patient. I know. I will be on letrozole along with my Ibrance.

Thank you all for the replies. I'm just way overwhelmed right now.

Dx 5/2003, LCIS, Right Dx 9/22/2017, DCIS/IDC, Left, Grade 2, ER+/PR+, HER2- (IHC) Surgery 10/25/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery Lumpectomy: Right
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Mar 11, 2020 01:05PM ErenTo wrote:

Both meds are very powerful and effective. And given that you're "drug-native", you have very good odds of achieving excellent result. Wish you an easy and successful path with this combo.

Survived an unexplained sudden cardiac arrest b/w surgery and chemo (while attending a chemo info session at the hospital). Code blue, CPR, induced coma, ICU, ICD. Escaped alive with heart and brain unscathed! Dx 12/8/2014, IDC, Left, 2cm, Stage IIIA, Grade 3, 6/13 nodes, ER+/PR+, HER2- (FISH) Surgery 1/11/2015 Lumpectomy: Left Chemotherapy 3/19/2015 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 7/23/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 8/3/2015 Breast, Lymph nodes
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Mar 11, 2020 01:40PM SondraF wrote:

WonderNurse-

What a shocker after those two other early stage bouts. No use feeling bad about the Tamoxifen now, what's done is done.

Will you also be receiving the other two drugs - the zoladex to shut down the ovaries and the bone strengtheners? The first makes the other I/L combo work and the second both strengthens the bone and helps keep the bone mets away too. The first two months of Ibrance you will have to do an extra blood draw per month but once you get set on a dosage its pretty much a breeze. My primary is almost gone at this point and Im only on cycle 4.

If you only have two spots (pending scans) you may qualify as oligometatastic (ugh, cant spell, its been a long day). There is a thread for those ladies in the Stage IV forum as there is some evidence of treating a light mets load for cure can have really good (and long lasting) NED results.

Come join us when you have gotten over the shock and are ready - it will get better once you get started and have some time to process. Most of the time I forget I even have cancer, which is a little scary in a way.

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole), Zoladex (goserelin)
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Mar 12, 2020 06:16PM - edited Mar 12, 2020 06:19PM by WonderNurseRN

Sondra, I will be using exactly that combination of drugs. Thank you for your reply. It really did help me put into perspective that we are all different and there is always hope. Congratulations on your successes! I have never ever heard of ogliometastatic disease. You have opened a whole new world for me!! Upon further inspection by another radiologist they did find small spots in my sacrum and in my femoral neck but I am so interested to read about this! Thank you again

Dx 5/2003, LCIS, Right Dx 9/22/2017, DCIS/IDC, Left, Grade 2, ER+/PR+, HER2- (IHC) Surgery 10/25/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery Lumpectomy: Right
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Mar 12, 2020 07:01PM - edited Mar 12, 2020 07:03PM by exbrnxgrl

wonder nurse,

I'm sorry that like far too many, you've discovered that bc can and does come back for far toomany. I have been NED for 8 1/2 years on an AI only. Ibrance was still in trials when I was dx'ed. You never know where this may go with any certainty but I feel like there is reason for hope. My good luck allows me to look back and see the advances that have been made over these 8 1/2 years. Yes, we want a cure but things look better now than then. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Mar 19, 2020 03:40PM KBeee wrote:

I am so sorry you are dealing with this., Hoping the Letrozole and Ibrance kick those mets back.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Mar 31, 2020 07:16PM JavaJana wrote:

I'm sorry you are going through this, I just got confirmation yesterday that I have bone mets as well. I was only diagnosed in Oct, had a small tumor and negative nodes as well, and haven't even started chemo yet (long story i posted elsewhere). Cancer is a nasty, sneaky SOB.

Stage 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/16/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Targeted Therapy 4/7/2020 Perjeta (pertuzumab) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Chemotherapy 4/8/2020 Taxotere (docetaxel) Hormonal Therapy
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Mar 31, 2020 09:21PM ByHisGraceTwice wrote:

RN —- so so sorry you’re going through this.. I’m Stage iv bone mets. It was a total shocker for me. All great after initial Dx in 2016, until I broke myself one morning putting on my pants. Five weeks later (yes horrific pain but long story why I didn’t go to doc sooner) learned is fractured my L acetabulum and had bone met about the size of an index card. Fracture healed beautifully without surgery and nov/dec Radiation successful. PET scan three months (On Fri 13th) to check on acetabulum healing revealed L 2-3-4 mets. Halfway through radiation for those now. Will begin Herceptin infusions tomorrow. Sending you a virtual hug. Those of us going through diagnosis andtreatments now have the added emotional strain of isolation because Cvirus requires us to be alone.

Dx 11/18/2016, IDC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Surgery 1/30/2017 Lumpectomy: Right Dx 11/18/2019, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (FISH) Radiation Therapy 11/18/2019 External: Bone Dx 3/13/2020, IDC, Stage IV, metastasized to bone Radiation Therapy 3/18/2020 External: Bone Targeted Therapy 4/1/2020 Targeted Therapy 5/7/2020 Herceptin (trastuzumab) Chemotherapy 5/19/2020 Taxol (paclitaxel)
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Apr 1, 2020 02:48AM - edited Apr 1, 2020 02:48AM by WonderNurseRN

I thank you all from the bottom of my heart for all of your replies. This is such a shock and I think we can all agree it just plain sucks. I think I'm entering the anger phase with everything and I'm just so damn mad for all of us. I am here to talk to or vent to or you can even cuss me out and I will love you through it. I just don't want to do this. I just didn't plan for my life to turn out this way and I'm mad. I have to leave my job in a rural ER that is just now revealing positive Covid cases to go do radiation every day. How messed up is this? And for those that are self isolating. How difficult this time must be. It's unimaginable. Love and prayers to you all. Please PM me if you wish. Pleas

Dx 5/2003, LCIS, Right Dx 9/22/2017, DCIS/IDC, Left, Grade 2, ER+/PR+, HER2- (IHC) Surgery 10/25/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery Lumpectomy: Right
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May 19, 2020 06:15AM sharapril1021 wrote:

Hello! I was diagnosed with Mets to Bone in August 2019. My original diagnosis was April 2015, diagnosed ER/PR+ HER2-, did neoadjuvant ACT Chemo, had Bilateral Mastectomy, found out after tumor was biopsied ER/PR/HER2+, had to do 1 year of Herceptin/Perjeta, 28 radiation treatments. Was fine up until around March 2019. Had pain in hip but attributed to rough gym workouts, it continued for a few weeks. Went to oncologist for every 3 month check up in April and alkaline phosphatase level was high. Waited one month for new blood work, level still high in May. Had CT, Bone Scan, PET, and Bone Biopsy for Confirmation. Did 29 sessions of Radiation to HIp/Pelvic Bone, loading dose of Herceptin/Perjeta in August. Went to Florida in early September and ended up in ER day after arriving and stayed for 6 days. Diagnosed with a parasite-e Histolitica. Took me 6 weeks to recover at home and decided was not going to survive full dose chemo. Researched alternative /integrative treatments and ended up Reno Nevada in late October at Forsythe Cancer Care Center. For 3 weeks, I did IPT Chemo (Low dose chemo with insulin) and High Dose Vitamin C, Hydrogen Peroxide, Glutathione, PolyMVA and Immune Protocol IV's. I came home mid November and was on a 3month post treatment protocol with 30 supplements a day and oral chemo 7 days on 7 days off for 3 months. My cancer markers went down dramatically through end of February when my 3 months ended and slowly have increased again. I had another Genetic Cancer Test Done (RGCC) again in April 2020 (my last one was October 2019) and the results are completely different. My husband feels that the loading dose of Herceptin/Perjeta in August 2019 skewed my 1st Genomic Test Results I had done in October 2019. Fast forward, Oncologist wants me to do Herceptin/Perjeta again. Loading dose to start then single doses thereafter. I am so concerned that my diarreha will be uncontrollable again that it's freaking me out and I don't want to relive my month with the parasite. Has anyone had positive results with just Herceptin alone? I know the results are better with using both H/P, but I'm afraid and on the flip side my PET from a few weeks ago showed several new locations, left pelvic bone, neck and jaw. I am also starting a new supplement protocol that is designed to attack cancer stem cells (approach used by Jane McClelland-How to Starve Cancer). My thoughts are to do just Herceptin alone for 2 treatments with the new supplements, check cancer markers to see if they have decreased, if not, fly back to Reno for IPT chemo. My oncologist does not agree with alternative/integrative approach but I do not feel that Full Dose Chemo is a One Size FIts All Approach and will not do it. I would love to hear your thoughts with Herceptin alone and/or Herceptin and Perjeta - what your side effects were having it a 2nd time around. Thanks for listening!!!
Dx 4/17/2015, IDC, Right, 4cm, Stage IIA, Grade 3, 3/7 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 6/1/2015 AC Chemotherapy 6/1/2015 Surgery 10/27/2015 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Dx 11/2015, HER2+ (FISH) Targeted Therapy 11/23/2015 Perjeta (pertuzumab) Targeted Therapy 11/23/2015 Herceptin (trastuzumab) Radiation Therapy 12/6/2015 Hormonal Therapy 2/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/2019, IDC, Stage IV, metastasized to bone, HER2+ Radiation Therapy

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