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Topic: Mets to bone and pleura.

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: Apr 16, 2020 10:59AM - edited Apr 16, 2020 11:00AM by laastra

laastra wrote:

I recently had a biopsy of my hip bone and it came back and it is a recurrence of my original breast cancer. It is still the exact same ER+PR+HER2- Grade 2. My oncologist seemed just as shocked as I was but explained that this spread must have been there to some degree all along, and it was being kept under control by the Tamoxifen, but some cells may have become resistant to Tamoxifen, allowing the spread. I don't know how certain that is but it is a possibility. I had Oncotype score 13 so it was determined that chemo would not have affected the chances of recurrence that much. So I was just on the bad side of the probability. Trying to take it a day at a time..but i'm hanging on an emotional thread tipping one way and another. I have to now get a PET/CT and he wants to get a brain MRI because I have had worsening headaches..just to rule anything out there. And he went over my next steps for treatment. Have to get a shot next to shut my ovaries down.

I don't know how to feel it's all just a lot. Luckily working from home right now and it is easier to deal with that. I'm afraid of having to keep going out for treatments and appointments and scans and hospitals while this virus is going on though. Especially if I have to take things that affect my ability to fight infection. Everything feels like it is falling apart at once. And I have lung involvement so I think that COVID-19 would affect me badly if I got it. I do have a plan but it's a lot to deal with. My doctor gave me some Xanax..going to need that. I don't know how I should handle having my mom come with me to appointments. So far I haven't gone with her but they said she can come to the chemo education session. There are just otherwise limits on people coming with you. Thanks for listening.

IDC-L multifocal. age 33. Dx 11/3/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/15/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 3/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/15/2020, IDC, Stage IV, metastasized to bone/lungs, Grade 2, ER+/PR+, HER2- Hormonal Therapy 4/17/2020 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy 4/24/2020 Ibrance (palbociclib)
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Apr 16, 2020 12:14PM Moderators wrote:

laastra,

We just wanted to say we're so sorry to hear of this recent diagnosis. We know it is pretty tough and overwhelming right now, but just know we are all here for you. Our Stage IV crew here is extremely helpful and will definitely be a welcome audience for your questions and concerns. Please don't hesitate to reach out as much as you need to.

Sending love,

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 16, 2020 07:18PM laastra wrote:

Thank you. It is tough and overwhelming. <3 I have been reading on this site about the treatments I'm getting and it's helpful to know. I will have to read/join the conversation in the Stage IV group.

IDC-L multifocal. age 33. Dx 11/3/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/15/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 3/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/15/2020, IDC, Stage IV, metastasized to bone/lungs, Grade 2, ER+/PR+, HER2- Hormonal Therapy 4/17/2020 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy 4/24/2020 Ibrance (palbociclib)
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Apr 16, 2020 11:03PM vlnrph wrote:

Yes, do go over to the stage IV/metastatic forum. So sorry that you have all this going on during the pandemic.

Don't hesitate to try the alprazolam when things get to be too much.

With your young age, has there been any genetic counseling? Sometimes, knowing whether a mutation is present can help determine therapy options...

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Apr 17, 2020 06:26AM laastra wrote:

thank you. Yes, they did do genetic counseling at the beginning to determine if I was BRCA positive and I think they looked at a few other things. But it all came back negative. I had thought it could be a possibility that genetics were a factor because my mom and grandma both had breast cancer. So, I really don't know on that front. They are going to do Ibrance so I don't know if the CDK4(?) expression is part of the whole genetics thing or whether they just tested for that in my biopsy.

IDC-L multifocal. age 33. Dx 11/3/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/15/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 3/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/15/2020, IDC, Stage IV, metastasized to bone/lungs, Grade 2, ER+/PR+, HER2- Hormonal Therapy 4/17/2020 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy 4/24/2020 Ibrance (palbociclib)
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May 4, 2020 03:35PM KBeee wrote:

There is "second generation" testing they can do on your tumor which will reveal a lot about the genetics of it. Some insurances will cover it and some won't. I know Foundation One is one brand. There are others, but I can't think of them. Semi-related, you also can see how many things they tested you for on the genetics side. They initially only tested me for about 6 (all negative), but later, I got testing for over 20 more, and have a VUS in CHEK2. I have a strong family history, and have had multiple docs tell me there is likely a genetic component; we just don't know exactly what it is yet. Thinking of you.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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May 5, 2020 04:06PM laastra wrote:

Thank you KBeee! I will try to see how much they tested in my original genetic testing.

This is all just wild. They just did a PET scan and it looks like there was progression just in the past month. I feel so weird and like things are just out of control. I started treatment over a week ago with Zoladex then Faslodex and Ibrance. I hope it starts to work soon. It seems like everything was fine for so long and now it's just quickly progressing. I don't know what to think.

IDC-L multifocal. age 33. Dx 11/3/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/15/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 3/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/15/2020, IDC, Stage IV, metastasized to bone/lungs, Grade 2, ER+/PR+, HER2- Hormonal Therapy 4/17/2020 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy 4/24/2020 Ibrance (palbociclib)
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May 20, 2020 04:22PM berries wrote:

I'm so sorry to hear. I have no words other than I am keeping you in my heart. I was diagnosed at 34 and it has not been easy. Therapy has helped. Trying to understand 'why?' has not because there will never be an answer.

Sending you love.

Dx 8/6/2019, DCIS/IDC, Left, 5cm, Stage IB, Grade 1, 4/4 nodes, ER+/PR+, HER2- Surgery 9/18/2019 Mastectomy: Left; Reconstruction (right) Chemotherapy 10/24/2019 AC + T (Taxol) Surgery 2/17/2020 Reconstruction (left): Silicone implant Radiation Therapy 3/31/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 4/30/2020 Xeloda (capecitabine) Hormonal Therapy 5/8/2020 Arimidex (anastrozole)
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May 20, 2020 05:21PM laastra wrote:

Thank you berries. I will have to look in to therapy definitely. Sending love to you too.

IDC-L multifocal. age 33. Dx 11/3/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/15/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 3/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/15/2020, IDC, Stage IV, metastasized to bone/lungs, Grade 2, ER+/PR+, HER2- Hormonal Therapy 4/17/2020 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy 4/24/2020 Ibrance (palbociclib)
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May 21, 2020 05:13PM - edited May 21, 2020 05:37PM by GiGiL

I had stage IIA ER+/PR+ 0/3 nodes in 2011. I had a lumpectomy and radiation. I have been going along fine until the past six months when I have had frequent and persistent rib pain. I had. CT scan today and the report was that there are sclerotic foci on several vertebra and some small nodules in the lungs, the largest being 3 mm. Ribs looks good except one old break and one new break which is healing. I have an appointment with a BC oncologist next week. I am in shock today and shaking inside. I don't quite know what to expect for what tests I might be facing initially. Any input or idea about what might be in my immediate future will be greatly appreciated. Thsnks

Dx 5/6/2011, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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May 22, 2020 09:13PM AMLMom wrote:

Hi GiGiL, I'm so sorry to her your news. I'm sorry that I don't have any insights to share, but I did want to say that I'm so so sorry that you are facing this.

Dx 11/2018, DCIS/IDC, Left, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2019 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes
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May 24, 2020 11:55PM GiGiL wrote:

AMLMOM thank you for your kind words. I have an initial appointment with a MO on Thursday May 28. I am filled with fear and trepidation

Dx 5/6/2011, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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May 25, 2020 02:05AM jcp wrote:

hi GiGil. This is JCP. I cant stand that you and many others like myself had no trouble for quite a few years and them boom , an issue comes up. I dont know what sclerotic focii is but I have from chest xray what has been called an area of calcifications, then called a node with calcifications, and then last a pulmonologist said it was a lymph node w calcifications. I had follow up finally Thursday May 21w CT scan. I am waiting on report. How do you know if the nodes are bad or okay that were very small? I'm hoping for a complete healing for you. I am shaking in my boots right now, scared as hell, about results of thoracic CT. How did you get your results that quick? I think you will feel better when you get to the dr and have a plan. It is great that you are seeing a Breast ca oncologist. My onc treats all different cancers. I think that is in your favor big time! I'm so sorry and I will pray for you definitely! A note of inspiration my mom got dx w br ca in 1987. She eventually got in bones probably seven or eight years later. Well, she lived and when I say lived I mean a really good quality of life for 19 years! Back then it was pretty remarkable. It had been In her bones for 12 years and she did so much! The unbelievable thing is she had no pain almost the entire time w her bones which is very unusual with multiple and I mean multiple bones places affected. She was only on chemo one time in 1987 when first dx and the rest of the years it was anti hormonal pills. I mean she did have years of scanning and I so admire her bravery and years of blood work testing CEA and CA125 I believe. It was stressful but she went back to work bc she wanted to. She also watched my son later when she left her job after five years. They had a fantastic grandma and grandson relationship. He was young and she could never get enough of him! She traveled some, but most important to her she spent time w her 4 children and two grandchildren . I was so very close to her and went to so many scans and dr spots and infusions to help her bones, etc.i even took my son and he would watch when she had to have blood taken and was right by her side. Anyway there is do many new treatments now. You will do fine. Praying . Hugs Susan JCP

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