Bone and lung mets dxd after 8 years

Options
mimi791
mimi791 Member Posts: 92
edited February 2018 in Just Diagnosed With a Recurrence or Metastasis

Hi:

I am 8 years out from my initial dx....and this past summer I developed a radiation induced sarcoma in my right scapula. This is an extremely rare late effect of treatment and I went to Dana Farber and Brigham and Women's in Boston. I moved up to Boston for 6 weeks to do my radiation and then had surgery to remove my entire scapula and a whole lot of other tissue on 12/1/17. They obtained clear margins and sent me home to reclaim my life. 3 weeks ago, my left arm...which has been one active arm as the right one is stuck in a sling for a year, began to ache. I went to my local ortho, who did an xray and BOOM...bone met. It fractured during the week that we were waiting for my insurance as I picked up a pen. That won me another trip to Boston last week to have the fracture fixed and also a staging CT that has showed mets at T10, T11 and L2 as well as 2 spots in my right lung...one upper that they think is either a met or scarring...it's weird looking and one in the lower which does appear to be a met. Needless to say...I'm a hot mess right now. I also am waiting on pathology because there is the chance that it's the sarcoma that came back....not the breast....which would really suck because the breast cancer has a LOT more treatment options. Even more aggravating is the fact that I feel really good....out walking 2+ miles a day even with the arms that only work from the elbow down making me feel more like a Tyrannosaurus Rex than a person.

Right now I vascillate from denial to complete breakdown to completely numb in cycles. I know I can only do so much until we have the pathology finalized and yet, the fact that there is metatstasis is there. I don't understand anything right now, and I don't understand that I'm going to die. I am terrified. I have found 2 good books that I am using to help me to understand what is happening, but my sadness at the thought of leaving my life and family hovers over me like a stormcloud. I am so afraid of all of this that I feel paralyzed by it at times.

Your thoughts and ways that you cope with what is going on are greatly appreciated. I decided to start a thread for myself because I was lost in all of the other threads out there as to how to cope from day one.

Thank you in advance for your help.

Melissa

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited February 2018

    Mimi,

    First, we wanted to let you know that we are all here for you -- we're so sorry to hear of this development, but you've got a great system of support here, and we know many others will chime in shortly to share their thoughts. We know a metastatic diagnosis can be overwhelming at first, but just like an initial diagnosis, once you get more information about the pathology of the cancer and you get a treatment plan in place, you can set your mind to taking one step at a time to get yourself in the best health possible.

    We are sending our thoughts and big hugs your way -- keep posting, sharing, asking questions and requesting advice. We look forward to continuing to support you!

    --The Mods

    · Share on FacebookShare on Twitter
  • KBeee
    KBeee Member Posts: 5,109
    edited February 2018

    I am so sorry to hear you are dealing with this. Hoping you get pathology results and a plan soon.

    This part of the forum gets less traffic than the stage IV forum, so if you do not get many responses, repost your question there.

    Keep us posted on your pathology and plan

    · Share on FacebookShare on Twitter
  • DazzlingEagle
    DazzlingEagle Member Posts: 112
    edited February 2018

    Oh, the anguish is suffocating. I feel your pain. It's the unknowing and then hope and then shock when it's more bad news and the hope is dashed. I'm so sorry. Please post up update when you can. I'm thinking of you.

    · Share on FacebookShare on Twitter
  • illimae
    illimae Member Posts: 5,710
    edited February 2018

    This period of time is the worst but it is not necessarily the end. I was dxd stage iv de novo about a year 1/2 ago and felt the sadness and desperation too but realized I felt good, which was confusing. I stayed active throughout treatment and even with brain mets now, I still feel great. I find that focusing on how I feel more than what scans tell me makes it easier for me to push forward. You can live many good years, please know that this is possible.

    · Share on FacebookShare on Twitter

Categories