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Topic: My cancer is back. I’m scared

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: Aug 5, 2020 12:51AM

Hopfull2 wrote:

Hi. So I was originally diagnosed 4 years ago. Stage 1 breast cancer. I had a double mastectomy, 6 rounds of chemo due to a high onco score. Clean lymph nodes. And have been on tamoxifen. 3 weeks ago I started having double vision. I got sent to have an mri with contrast. Something showed up suspicious in my skull. So yesterday I had CT scan with contrast as well, of my brain chest and pelvis. Because I have had some joint pain for past 3 weeks as well. Oncologist called me this morning. Said CT shows it’s in my bones, he said my spine and pelvic bones. I’m terrified I’m fairly young. Just turned 41. I was 36 when I first got breast cancer. I just don’t understand. I had early stage. And I did everything, double mastectomy, chemo, I’m scared. Don’t know how to process this. I have 2 kids. My youngest just turned 6. I see oncologist again Friday. He’s putting a stat order to see radiation oncologist and neurosurgeon

E🌺37yrs.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/8/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Dx 7/2020, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Aug 5, 2020 01:02AM BCat40 wrote:

I’m very sorry to hear of this development. Treatment for stage IV has come a long way and there are many options to help keep further progression at bay. Please keep us updated on your treatment plan after seeing your doctors.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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Aug 5, 2020 01:44AM Cure-ious wrote:

Hopeful,

With just a couple of sites, I'd ask your MO if you would possibly be considered oligometastatic? At least 25% of those cases can be cured with radiation and followup treatment like Ibrance-Femara, according to an MDAnderson report. Do not know how brain mets could affect that, but its rather rare for brain mets to show up as the main site for ER-positive cancer-they are more commonly seen with HER2-positive cancers, so that is something to ask about as well. Are they for sure brain mets?

Although this is as big of a shock as it gets, there is absolutely good reason for hope, existing treatments can carry you for many years with minimal side effects, and by then the entire field will be transformed with new immunotherapies and other treatments currently in clinical trials. Impossible as it feels right now, try to hold on to that faith in the future and enjoy life and your kids, because the time will fly by as always...

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Aug 5, 2020 07:30AM illimae wrote:

I’m sorry, I know it’s shocking and I too was diagnosed stage IV at 41, however, I was never early stage. There is good news, we can typically live well for years and treatment options are available.

Posts like this do make me wonder though, what early stagers are being told or not told about being “cured” and the possibility of recurrence. I don’t mean to sound harsh, I just wonder if all the survivor positivity leaves you blindsided.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 5, 2020 09:00AM bella2013 wrote:

Hopeful2, I am so sorry that you are dealing with this recurrence. If you read the Stage IV threads, many of the women have been living a long time with metastatic breast cancer. You can do this...you have to do this for your kids.


Mae, I can relate to Hopeful. Her treatment plan threw everything at this beast even when her nodes were clear. There is such a sense of relief when the lymph nodes are clear. With a BMX and clear nodes, it’s easy to believe the cancer is gone. I believe that once us early stagers have completed treatment (except for AI’s) then we are seen as low maintenance patients. I have never been told I was cured but I do get the impression that I am considered such a low risk of recurrence.

I don’t care what the stats of my cancer tell me, I had cancer in my body and as much as I would like to blindly believe I am cured I know there is likely a cancer cell floating around just waiting to “wake up”.

It’s my family and friends that believe I am cured. They don’t want to consider the possibility MBC.

Thoughts and prayers for all of you living with this beast.💜🙏💜🙏

Bella2013


Diagnosed at 60 years old. Oncotype Score=14. Dx 12/4/2017, IDC, Left, 4cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 1/3/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 2/21/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Aug 5, 2020 11:02AM SondraF wrote:

Hopeful - there was one Stage IV poster who had twin sons about the same age as your child when she was diagnosed. Her greatest wish/goal was to see them graduate high school. She made it and is still going on her treatments, just doesn't post as much now as she is out living life.

I wasn't early stage either but its the same level of anger at 'doing everything right' - whether its the whole shebang of treatment or eating/exercising, etc - and still getting lumbered with this beast.

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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Aug 5, 2020 03:54PM moth wrote:

OP, I'm sorry you find yourself back again. It really really sucks & it's not because you didn't do something. You did all the things & still it's here because cancer is a wiley monster.

I echo Mae's comment. Seems many patients are not told that ~30% of people diagnosed with early stage breast ca progress and eventually die from the disease. Each individual's risk of recurrence is different but that overall stat was always on my mind. Early detection and full treatment does not guarantee a happily ever after :( & 1 in 3 is an awful lot

Hopefull - hang in there. The early days suck the most. You have a good screen name - cling to that hope! & treatments, even for stage 4, are changing, it seems to me, quite quickly. I figure we just need to keep kicking that can down the road and hoping for effective treatments.


Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Aug 5, 2020 07:52PM lehrski wrote:

I'm so sorry. It is scary and difficult to process. My prayers are with you and your family.

Dx 7/24/2020, IDC, Left, Stage IV, metastasized to bone/lungs, ER+/PR-, HER2-
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Aug 5, 2020 08:38PM cyathea wrote:

Sending you love along with all these other lovely sisters, Hopfull2. I’m hoping you get to NED again with the new treatments that are available now. (((Hugs))

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/9/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/18/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/16/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/21/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Aug 6, 2020 12:44PM - edited Aug 6, 2020 12:49PM by buttonsmachine

Hopefull2, I am sorry you are in this situation. I was also originally diagnosed four years ago at stage 1A. My cancer has come back locally and regionally multiple times in the last four years, despite being on active treatment. Now I am facing the possibility (probability?) of metastatic recurrence, but the new area of concern is located in a place that is inaccessible to biopsy.

My point in all of this is, do not feel like you are alone, and do not feel like it was caused by anything you did or didn't do. Cancer treatment has a long way to go, and we need better and more effective treatments. It is disheartening and discouraging when one treatment doesn't work, but it's important to remember that there are still many more treatment options out there. I'm wishing you the best as you go through the next steps.

Diagnosed at 32. Local recurrences in the skin, and now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Aug 6, 2020 01:55PM Hopfull2 wrote:

thanks everyone for all the replies. These first couple weeks are torture. I remember from the first time. I have labs today to prep me for biopsy, my bone scan is Tuesday. I’m praying for a miracle. I’m trying to stay positive but I’m a Mess. I’m ok one minute, then cry the next. This isn’t fair. For anyone.

E🌺37yrs.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/8/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Dx 7/2020, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Aug 6, 2020 10:12PM edwards750 wrote:

Bless your heart Hopful it isn’t fair that you are dealing with the beast again. Once is more than enough. I’m so sorry but please have faith you will get through it this time too. My BS told me if cancer metastasizes anywhere the bones are the place that have the best outlook.

I do think doctors dogive we early stagers - I was Stage 1b, Grade 1 IDC diagnosed in 2011 -a false sense of security sometimes. I had a low Oncotype score of 11 with an 8% chance of a recurrence. Of course I was optimistic as a result but I still panic right before my annual mammogram. I’ll probably always be that way but I am a worrier by nature.

So far so good for me but I know there are no guarantees.

Keep us posted.

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Aug 9, 2020 02:04PM Bestbird wrote:

It's great that you found this forum although I'm sorry for the circumstances that brought you here. The first weeks after MBC diagnosis can be exceptionally challenging, but after a while things WILL settle down!

If it's possible, please get a biopsy to see whether the cancer in your bones is still hormone receptor positive (and, I assume, HER2 negative). Sometimes the pathology of the recurrence is different from that of the original primary tumor, which in turn could affect the type of treatment you receive.

If you would like more information about treatments, dealing with side effects, and more, you're welcome to receive a complimentary .pdf of my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available on Amazon. If interested, please visit: https://www.insidersguidembc.com/about

And as others have mentioned, if the cancer is confined to the bones, your prognosis is better than if it had been in your organs. Many people do well for years, and even a decade or more! And with the introduction of new therapies, the outlook is much better than it had been years ago!

Kind wishes.

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Aug 9, 2020 05:50PM Hopfull2 wrote:

thank you for your reply. Yes. I have my biopsy on Thursday. And bone scan Tuesday. I’m gonna throw everything at this again. And thanks for the info on the pdf info

E🌺37yrs.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/8/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Dx 7/2020, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Aug 12, 2020 06:16AM Lulabelle2020 wrote:

It’s ok to be terrified to scream, to cry to think why me? There will be people who act like it was your fault for not catching it sooner, they are wrong. There will be people who get on board and cheerlead you through every stage and support whatever action you take. They are your true blues!!

I had stage 3 TNBC and was told it wouldn’t reoccur and there was no risk having a lumpectomy rather than a mastectomy. I didn’t look for trails as I trusted my medical team to do all this and refused to google anything.

A few years later after spending at least a year asking repeatedly about my scar tissue and constantly feeling it as it felt odd but being told it’s just what scars do (I had no idea I e never had a lumpectomy before) I have mets to the skin in that are which I kept saying the skin didn’t look right got told to put cream on it. I then had my left lymph node come up which led to a biopsy and mets being discovered.

My best advice research all the trials and treatments out there look at forums see how others are doing etc. Always be ahead have a few treatment options lined up for just in case and make sure every time you discover another option it’s documented and you take a note.

I’ve been researching long term survivors and taking control or your treatment seems to be a big step forward.

Keep on throwing everything you’ve got at this and focus on the outcome you want 😊



Love, light and healing 💕💖 Dx 3/29/2016, ILC, Right, 4cm, Stage IIIA, 0/9 nodes, ER-/PR-, HER2- Chemotherapy 7/22/2016 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Dx 7/1/2020, ILC, Right, Stage IV, metastasized to other, ER-/PR-, HER2- Immunotherapy 7/9/2020 Tecentriq (atezolizumab) Chemotherapy 7/9/2020 Abraxane (albumin-bound or nab-paclitaxel) Surgery Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary Radiation Therapy Whole-breast: Breast
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Aug 18, 2020 11:57AM KBeee wrote:

I am sorry you are having to deal with this. I'm hoping that you have a plan in place soon and can sstart plowing forward to knock this 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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Aug 18, 2020 08:36PM Hopfull2 wrote:

kbee, and everyone else who has replied. Thank you so much. I’m still waiting for my biopsy results in order to start chemo. They want to have surgery through my nose to debulk the lesión in the skull bear mekals cave. Then do radiation on some areas on spine and hip. Surgery can be as early as next week. They said my double vision might not go away even with debulking lesión. It’s all overwhelming. But. I’m hanging in there.

E🌺37yrs.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/8/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Dx 7/2020, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Aug 19, 2020 08:05PM - edited Aug 19, 2020 08:05PM by amyedb59

This Post was deleted by amyedb59.
Dx 8/23/2010, IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Chemotherapy 12/1/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/30/2011 Hormonal Therapy 5/15/2011 Liquid tamoxifen (Soltamox), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 5/14/2014 Arimidex (anastrozole) Dx 8/15/2020, ILC, Right, Stage IIIB, Grade 2, ER-/PR-, HER2- (FISH) Surgery
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Sep 2, 2020 09:37AM KBeee wrote:

Hoping the radiation helps your symptoms. I hate that you have to deal with this!

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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