Baby in NICU, PET scan results today - I am drowning!

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Esmerelda
Esmerelda Member Posts: 243
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Dear sisters, 

It's been months since I've been on here. A while back I had to force myself to sort of "break up" with BCO, because I was on here all the time, mostly lurking, and couldn't shake my anxiety about my cancer. Since then, my anxiety has come up occasionally along with the pain (and what I am sure is PTSD). 

I was Diagnosed two years ago, IDC, 2cm tumor, highly ER and PR positive, HER2 neg, 0/3 nodes, onco score of 10% chance of recurrence. Had BMX with immediate DIEP reconstruction.

When I was initially diagnosed, I was worried about occasional hip pain and had a negative bone scan. About a year later, I had another negative bone scan. All good news. I also experienced rib and scapula pain and I had a CT scan about a year ago (if I remember correctly) that was also negative. Speed ahead - we went through fertility preservation and my niece carried our baby (!), who was born on January 10th at 30 weeks of age, with several birth defects that can be corrected through multiple surgeries (Thank God.) She will be in NICU for may months... Needless to say, the stress has been extreme...

Since December, I have been experiencing on and off groin pain - more like an ache. The hip pain is more or less unrelenting for the past month - except for when I sit or lay down or sleep, then it seems to disappear. We did blood work for the first time ever last week and those results are all within the normal range. I've been taking 1000mg of Alleve and it deoesn't seem to do anything to help with the pain.

I am utterly panicked. I just had one friend pass away on Saturday from metastasized BC, and another very close friend is also near the end of her journey from this damn illness.

I don't know how to deal with this... At any moment I will get a phone call with my PET scan results, and I can't help but think my life will never be the same... I just dropped my five year old off at school and looked at her, for what felt like the last time I would get to look into her face with the FREEDOM to believe my cancer is gone... 

I don't know how to do this... I don't know how to wait for this phone call... If the news is bad, I cannot imagine ever having joy again, or being able to take care of myself, or care for my brand new baby who SO many challenges, let alone be a mom to my 5 year old, a wife to my husband, a friend to anyone... THIS IS TOO MUCH! I am begging God to not let this happen. It is simply too much. Please help me, ladies! 

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    bump, please!

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  • Iamstronger
    Iamstronger Member Posts: 378
    edited February 2014

    I am so sorry you are feeling this way.  I know how you feel.  I was dx when my kids were 2&3, and i have a special needs child as well.I have had back to back scares and went through the awful anxiety that accompany them.  So far all have been neg, but at the time, i was just sure the other shoe was going to drop.  That said, I have found that meds (xanax) exercise and keeping busy do help.  I have also found that yoga and prayer are a godsend.  

    Also, try and take some comfort in all your other scans were neg and you caught it in early stages.  Fwiw, i find out when i am stressed inother areas of my life, it makes me more fearful and scared and OCDish about recurrence.

    I'm sending you healing thoughts and prayers.

    V

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    Thank you, vmarie! That is so true. Even before Indi was born, I noticed my anxiety kept creeping in... I'd think to myself, how dare we attempt to have a baby? Something is bound to go wrong... ugh. My family keeps reminding me of all the good news - all the good indicators. I think I just know too many bad stories of women with "good indicators" or prognosis, only to go on to stage IV. Sometimes, I really wish I didn't know these stories. And of course, there's the pain...and I can't seem to shake what that could mean.

    I'm not really doing anything to alleviate my fear right now. I haven't excercised, or meditated or anything. I've just been sort of frozen. Thinking that my life is over when I get this phone call. I'm afraid of the emotional devastation of it all... and yes, I know I'm getting ahead of myself. I've always been a "prepare for the worst" type of person, but frankly I'm sick of that. I can't live like this! 

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    bump...

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    I'm sitting here in bed sobbing. My mom wants me to call to get the results... I am terrified...

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  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited February 2014

    Esmeralda,

    I also had hip pain (even before diagnosis).  So, of course, we ran all sorts of tests at the time of diagnosis.  And then, the pain kept continuing, and then I had an MRI.  It turned out to be an inflamed band of some sort.  The sooner you know the results (whether it is good or bad), the sooner you can start treatment.  In my opinion, ignorance is not bliss when it comes to cancer.  The chances are it is nothing.  Also, just FYI, my mom has been living with Stage IV cancer for 13 years (yes, 13 years), and she is still doing well, and there are still more options for her.  She has been on a single regimen of chemo during that entire period of time (so, there are many many chemo options remaining).  She is telling me she will not die until my kids who are 9 graduate from high school! 

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    oh, thank you for responding YoungTurkNYC! It's these responses that are keeping me together (if barely!). I just called the cancer center and left a message that I am "anxiously awaiting my PET scan result!"   And now... I have to wait to hear back. Of course. 

    My daughter gets out of school at 3 pm, hoping whatever the news is, that I have time to recover and not look like I'm falling apart - in front of her! I SO do not want her sweet little life to be disrupted by all of this!

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  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited February 2014

    I have two 9 year olds, so I totally understand how hard this diagnosis is with little children.  They were almost 8 when I was diagnosed.  It is okay to fall apart of course, and it is completely understandable (we all do it from time to time), but then you lose your opportunity to try to make today a good day!  Today is all we have really.

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  • KSteve
    KSteve Member Posts: 486
    edited February 2014

    Sending calming, positive thoughts and prayers your way, Esmerelda.  Please let us know what you find out.  We all understand the anxiety the comes with new aches and pains and until we find out differently, that stupid C word always pops right back in our minds.  You're not alone.  Wishing you and your family (including that wonderful newborn gift you have received) the best.  Hopefully you will hear back really soon!

    Hugs,

    Kathy

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  • Nettie1964
    Nettie1964 Member Posts: 759
    edited February 2014

    So sorry for all you are having to deal with!  Don't really have anything to offer except I know the fear and anxiety of waiting!  I'm praying that these results will be something simple to resolve!  

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  • TifJ
    TifJ Member Posts: 1,568
    edited February 2014

    I had hip pain for quite a while and finally got up the nerve to have it checked out. It was simply an inflamed disc in my lower back that was pressing on a nerve that connects to the hip area. It took about 3 months on Aleve to finally subside and still bothers me every now and then.

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    Thank you, thank you, everyone! Please stay with me... I will definitely let you all know what my results are once I hear. I have never been this scared before... How do the stage IV ladies endure mentally? I just have no idea...

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  • sheila888
    sheila888 Member Posts: 25,634
    edited February 2014

    Esmaralda.....Hugs from NY 

    I know what you're going through...this waiting part is the the most anxiety producing......

    Did they tell you when you would be getting the result?  Are they in ?

    If you know for sure...keep calling or if it's close to you go the place where you had the tests.......

    I want you to know I'm thinking of you and your family

    Sheila♥

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    Hi Esmerelda, 

    Sending thoughts and prayers in your direction. It is so awful to wait for results - I know that it sounds impossible, but try to do a couple relaxation techniques - deep breaths in and hold and out slowly, and then make sure to do the normal things, have lunch, take a walk, etc. If all you are doing is waiting then the time passes so slowly. Will continue to send thoughts and prayers your way and check in to see how you are doing. Many, many, hugs. 

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    Thank you, Sheila, thank you ziggypop. They said they would have my results in two days (PET scan was Tuesday morning). I called at noon and told them i am waiting to hear!! 

    I am so exhausted from crying... I wish I were stronger. My mom is crazily cleaning my house right now, because that's what she does. I wish I were more like her. 

    Calling a friend to pick up my daughter from school and keep her for a playdate this afternoon, as I can't have her here with me, while I wait to learn my fate. 

    And yes, call me crazy, but now I'm worried that the reason they haven't called is because they are reviewing my results and need to time to develop a plan of action to convey to me... Can someone stop my brain, please? 

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  • sheila888
    sheila888 Member Posts: 25,634
    edited February 2014

    Do you know for sure that the results are in?

    I remember they told me 2 days and i was the same place as you were

    Finally i told the girl who answered the phone do you know I'm almost having a heart attack here

    In few seconds the DR was on the phone with me.......

    I'll be here waiting with you

    More Hugs from snowy NY

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    I don't know if the results are in... Should I call again? I can't stand this. And I can't stand calling. But what YoungTurkNYC said is true... Ignorance is NOT bliss when it comes to cancer... Ignorance (waiting? Wondering?) is worse, no? Is waiting to find out, worse then finding out that it's moved to stage IV? (Please forgive my insanity right now...)

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    Also, thank you for waiting with me, Sheila!!!

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  • GreenEyes57
    GreenEyes57 Member Posts: 17
    edited February 2014

    Esmerelda, I too have nothing much to add. But, I am praying for you and your family.  It is always better to know .... You are so brave......Yes you are! Good you let people around you help you out.

    You have dealt with so much already. Sending more strength your way!

    Cancer Sucks

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  • KSteve
    KSteve Member Posts: 486
    edited February 2014

    Still here with you!  Just wanted you to know you're not alone. :)

    Kathy

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  • sheila888
    sheila888 Member Posts: 25,634
    edited February 2014
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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    Thank you so much, Kathy! 

    I am going to call now and try and find out of they even have the results in...

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2014

    I'm sorry you are having such anxiety. I would suggest a walk or some exercise. You have a lot on your plate. As I say to my kids - you know how to eat an elephant?  One bite at a time. Take things step by step. My fingers and toes are crossed for you!

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    You're right, farmerlucy, thank you. I just called again and the only thing the woman can do who answers the phone is to pass a note back to my oncologist's nurse that I am wanting to know the results ASAP. Well, now they have TWO notes from me! She couldn't even tell me if the results were in or not. And this is at University of Michigan - a major cancer center! Breathe...

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  • sheila888
    sheila888 Member Posts: 25,634
    edited February 2014

    Esmeralda.....I'm gonna be back in couple of hours

    Still will be waiting with you

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    Thank you so much, Sheila!

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  • krisnanbrandy123
    krisnanbrandy123 Member Posts: 66
    edited February 2014

    I just wanted you to know I was here too.  Waiting.  I am BRCA 1 positive and nearly passed out waiting for my mammogram and breast MRI to be read.  

    I kept trying to remember that I had options no matter how things came back.  I breathed really deeply.  Tried to focus on being at peace.  I have two very young children and that seemed to kick up the level of fear and anxiety.  But, I am here.  Things came back fine.  But either way I felt that once I moved past the terror I could get through.  

    I will be thinking of you.  

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    Thank you, Kris!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    Esmerelda, could the pain be associated with Tamoxifen? I'm on arimidex for the ER/PR +, but I'm post menopausal. I know it can cause that kind of pain. Have you taken OTC med, and if so, has it helped? I wouldn't think anything OTC would help with bone mets.

    I believe you're going to get a good report today, and I can't wait to hear it.

    Praying for you

    Paula

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    I pray to God that its due to the Tamoxifen. But it's my left hip and ribs (wouldn't tamoxifen effect all joints?) And I'm taking 1000mg of Aleve since last week (except for a day or two) and it doesn't seem to make a difference...

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