diagnosed with ilc spine mets after what was a good prognosis

Torridon
Torridon Member Posts: 89

found out on tuesday- incidental finding showing up in a scan for something else. I am a mum to a 4 yr old boy aged 39. Heartbroken and devastated beyond words. need all the help i can get . Based in uk X 

Comments

  • lekker
    lekker Member Posts: 594
    edited April 2014

    Torridon - I'm so sorry to hear of your progression.  The women on the stage IV threads will be able to give you loads of support and of course you can keep posting here.  When will you find out your treatment plan?  

  • Momine
    Momine Member Posts: 7,859
    edited April 2014

    Torridon, I am so sorry. This stupid disease just isn't fair. 

  • CarpeVinum
    CarpeVinum Member Posts: 116
    edited April 2014

    Sorry to hear of your new dx. I too have spine mets, IDC, at T4. Join us over at the stage IV board. Lots of good info and support. You'll feel less devastated and overwhelmed once you and your onc get a treatment plan in place.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited April 2014

    Torridon, 

    Not fair, I am so very sorry that you have to endure this frightening news. Will they do a biopsy to be 100% sure? 

  • toomuch
    toomuch Member Posts: 901
    edited April 2014

    Torridon - I'm sorry that you got this news. I have the same question as Holeinone. Will they do a biopsy to confirm BC and to evaluate the hormone status? There is a bone mets thread in the Stage IV forum where I'm sure that you can find lots of support and good advice. Offering you cyber hugs!

  • Torridon
    Torridon Member Posts: 89
    edited April 2014

    shocked. Only had one node positive. Tumor was 3.1 was ver hormone positive and her negative. A good prognosis. Now this after only two years. Heartbroken and devastated. Can't look at my wee boy. Whole body scans next week to see where else it is x 

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

    SO, so sorry you are experiencing this, I don't know if there are women from The Young Survival Coalition in the UK, but they are a very active group in the States, you could check their website, they are an amazing organization, and I think you will find inspiration from other young women who are able to deeply understand your anxiety, and are also doing very, very well.

    http://www.youngsurvival.org/

  • bluepearl
    bluepearl Member Posts: 961
    edited April 2014

    There are no words to explain your fear and anxiety and sorrow. But, I am sorry. Bone mets, hopefully hormone +, you can live many years in good health (and in that many years, new treatments that could even cure).....you will see your baby boy as an adult and beyond! What you have now is treated as a chronic disease and living in harmony with it. I know this all sounds like false hope, but it isn't. I had a CT scan done that looked like I had a spot on my liver. I spent a few days living with mets........you find strength somehow......but when I found out it was a cyst, I was almost numb. So, I have brushed it. I know.....you are living with it...big difference...but I understand with my heart where you are. ((((HUGS)))) Keep talking with us all. It helps.

  • CarpeVinum
    CarpeVinum Member Posts: 116
    edited April 2014

    Torridon ~ I got my st iv spine mets dx only 9 months after my initial st II dx, so I know how shocking it is to be faced with mets so soon. I had ZERO positive nodes. I also have a young son, so I know how very difficult it is. For the first few weeks every time I thought of him I busted out in tears. It does get easier. He sees a counselor at school and she has helped tremendously. He will talk to her about things that he will not bring up at home, and I can see his anxiety levels have dropped dramatically. He is scared and is very concerned about his mum. He is my sweet mumma's boy :)

    When I went for my PETscan after my spine mets were discovered on an MRI, that one met at t4 was the ONLY met I had. None others were found. Don't be so quick to assume that more will be found. A quick 10 rads and that met of mine was blasted out. Try to stay positive. I know that seems impossible right now. Like I said earlier, once your tx plan is in place you will feel calmer and more in control.

    I agree with the comments above re meds. See if some anti-anxiety or anti-depressants will help. At least some sleep aids. XO

  • Trillion
    Trillion Member Posts: 2
    edited April 2014

    Torridon,

    I am so sorry this has happened to you. 

     It is absolutely devastating to find you have mets.  Everything seems very dark, but there is still light (a lot).

    The ladies on the stage IV forum have a wealth of experience to share when you feel ready.

    I understand the shock when you have had a good prognosis (mine was extremely good) it seems hard to believe, but does get a little easier with time and a treatment plan.

    Good luck with your body scan.

    (((((hugs)))))

    Trillion x

  • Mompsych
    Mompsych Member Posts: 516
    edited April 2014

    Hi

    This is a real kick in the gut and it is so normal to initially down that dark road...I noticed your post as I was scrolling down to the Stage IV posts and just wanted to say that there are a lot of women who have been living with this rotten disease for a long time, and that the ladies in the stageIV provide a lot of support and wisdom. Give yourself some time to take this all in. It's overwhelming at the beginning. Once you have a tx plan going that helps.  Hang in there

    Marian 

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

    So sorry, Torridon....I know a Stage IV friend (ovarian cancer: twice Stage 4! ) that is now going on 8 years NED.  Anything is possible and I hope in your case you will find NED for years after this setback...hugs

    Claire in AZ

  • Torridon
    Torridon Member Posts: 89
    edited April 2014

    hello everyone. Had my full body ct scan and bone scan the other day. So they were both completely clear. Mets only showing on MRI which was carried our for an unrelated non cancer matter. Mixed feelings because in some ways I wish I never knew until I started getting symptoms . On both strengtheners then ovaries out and letrozole. Still reeling from  all this because had a good prognosis x 

  • Momine
    Momine Member Posts: 7,859
    edited April 2014

    Torridon, this is good news, even if the overall news sucks. Small bone mets can often, as far as I know, be knocked back to dormant, so you are definitely better off finding them sooner rather than later.

  • Torridon
    Torridon Member Posts: 89
    edited April 2014

    thank you for all your words of help. I have just re read them. Xx

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2014

    although its a shock, if they dont show on bone scan that must be a good sign? Its unusual to find lobular mets early as they are so sneaky.  I have a bone scan in two weeks for rib pain, i hope it will be ok, i think it will

Categories