My cancer is back. I’m scared

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Hopfull2
Hopfull2 Member Posts: 418

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

Comments

  • BCat40
    BCat40 Member Posts: 241
    edited August 2020

    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.

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2020

    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...

  • illimae
    illimae Member Posts: 5,710
    edited August 2020

    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.

  • bella2013
    bella2013 Member Posts: 489
    edited August 2020

    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


  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2020

    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.

  • moth
    moth Member Posts: 4,800
    edited August 2020

    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.


  • lehrski
    lehrski Member Posts: 94
    edited August 2020

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

  • cyathea
    cyathea Member Posts: 338
    edited August 2020

    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))

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2020

    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.

  • Hopfull2
    Hopfull2 Member Posts: 418
    edited August 2020

    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.

  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2020

    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.

  • Bestbird
    Bestbird Member Posts: 2,818
    edited August 2020

    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.

  • Hopfull2
    Hopfull2 Member Posts: 418
    edited August 2020

    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

  • Lulabelle2020
    Lulabelle2020 Member Posts: 30
    edited August 2020

    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 😊



  • KBeee
    KBeee Member Posts: 5,109
    edited August 2020

    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!

  • Hopfull2
    Hopfull2 Member Posts: 418
    edited August 2020

    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.

  • amyedb59
    amyedb59 Member Posts: 3
    edited August 2020

    Hi !

    I was just getting ready to celebrate 10 years post IDC diagnosis and felt thickening in my armpit. So biopsy showed ILC this time . I also have some tailbone pain . I go Monday to bone scan and CT and/pelvis then I see oncologist following day for results and treatment planning . Was on Tamoxifen and the Arimidex for 8 years ... I was so uneasy about going off it ,,,I tolerated very well And think maybe why it's back .

    Anyways thanks for listening just found out yesterday.

  • KBeee
    KBeee Member Posts: 5,109
    edited September 2020

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

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