Bone mets with a million questions

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donutswife2003
donutswife2003 Member Posts: 38
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

After 5 years I have been diagnosed with bone mets in multiple bones. What is in store for me? It is hormone positive. Reading on Google is just terrifying. Will I be able to work with treatment? Rib and hip pain is a big issue. I would love to retire, will be 62 in November but insurance is such a big concern. Obamacare insurance is not affordable if you are going to live on a fixed income with horrendous deductibles. Any input would be greatly appreciated.

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2014

    Hi donutswife!

    We're sorry that you have advanced to this stage. Hang in there. You may be interested in also
    posting in the Stage IV forum. The members there are so welcoming and
    wonderful, and they have a ton of advice
    and experience to share!

    We hope this helps!

    The Mods

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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2014

    donutswife, I'm so sorry about your recent dx.  I know how shocking it is to get this news because I was also very recently been dx'd with bone mets in multiple areas.

    The first thing I want to say to you is that many women do extremely well for many years with bone mets only.  I know it's hard to grasp at first, but bone mets can be very well controlled, and as long as you get the proper treatment and respond well to it, the situation may not be as bad as you may have read -- although I've certainly had my emotional ups & down, adjusting to this new reality.  Also, keep in mind that a lot of the stats you find on Google are outdated, and/or so generalized, they may not apply to you.  

    Since my own dx, I've had a lot of support and encouragement on a thread here called "Bone Mets Thread."  I'll try to give you a link to it.  The women on it are extremely supportive and helpful.  

    http://community.breastcancer.org/forum/8/topic/789492?page=95#idx_2832

    I know what you mean about insurance being a huge concern, but try to focus on one day at a time right now, and not get too far ahead of yourself with possibly needless worry.  Have you been put on an aromatese inhibitor yet?  I was put on Arimidex immediately, and so far, so good.   (((Hugs)))  Deanna

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  • pajim
    pajim Member Posts: 2,785
    edited April 2014

    Hi!  Initial diagnosis is a shock, but once you have a plan and start treatment life will settle down.  As for what's in store that's up to you and your doctor.

    Stage IV cancer is treated as a chronic disease.  The idea is to use the least you can to control the cancer's growth.  Being hormone positive and post-menopausal, they most likely will start you out with an aromatase inhibitor (Femara, Arimidex) along with ether Zometa or Xgeva to strengthen your bones.  Then you get checked periodically.  When the cancer starts growing again you switch treatments.  There are many many drugs to try.

    They might do radiation if your mets are painful (sounds like yours are).

    If they offer you the palbociclib trial, enroll.  Looks like that drug works.

    I'm still on my first treatment and it's been 14 months.  I work full-time and live life as if it were normal.  There are ladies in the Stage IV forum who have been living well for many years.

    As for retiring, you don't necessarily have to.  Stage IV cancer "automatically" (in theory) qualifies you for disability.  Check out the disability thread in the insurance forum.  A lovely husband answered a lot of questions around applying for social security disability.

    I wish you the very best of luck.  Oh, and stay away from Dr. Google.  He's pretty scary and also out of date.

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  • tryn2staycalm
    tryn2staycalm Member Posts: 763
    edited June 2014

    Donutswife
    I too am a newbie to stage 4 and I have applied to for the Canadian Pension Disability.  I feel fortunate to live in Canada where one thing I don't have to worry about is health insurance and costs (other than travel costs to my MO an hour away).   Your MO should be able to refer you to a social worker if it is the same as here in Canada and she/he should be able to help you with those questions.

      Good Luck,

    Cathy

     

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