Just dx with lung and bone mets...new to these boards too

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LizLemon
LizLemon Member Posts: 540
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Hello everyone, 

After a routine chest x-ray was ordered, that showed "suprahilar lymphadenopathy", I was told I needed a chest CT with contrast. Well, that puppy came up with lung mets - multiple nodes w/sizes up to 7mm, and one whopper in that right hilar area of 3.8 cm., which was also called mets. Went for a PET a day later, yesterday, and the lung mets lit up and also showed evidence of bone mets in lumbar, sacral and iliac. Had a bronchoscopy same day as CT, and the pathology came back as metastatic breast cancer, ER/PR+.

I had my original cancer, staged at 2A 12 years ago. I've been crying my eyes out since Monday, but have calmed down somewhat today. My heart is breaking as I think of how I will tell my son (23 years old). He was 10 the first time around. And, he lives in another state. Luckily, I had a trip planned to his city for work, so I will be able to tell him in person. We are close, not suffocatingly so, but just close, and I hate having to tell him this news.

Also, for others reading this, my CA27-29 at its highest was 16 at the time when I actually had my original tumor in my body 12 years ago. After treatment, it went down to 10-13 for years. This check up, it went up to 36.93 - clearly well within normal - but so very much abnormal for me. Now I know why.

I am looking forward to fighting this with everything I have to stay here on this earth for my son every day I can. I also have a DH, whom I love so very, very much. He is my second husband, and we just celebrated our 17 year anniversary. He and my son mean everything in the world to me, and I don't want to leave them.

I look forward to getting to know you ladies, and sharing hope with you all...

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  • wrsmith2x
    wrsmith2x Member Posts: 410
    edited October 2012

    I cannot imagine what you are going through but just know that this is the best place to vent, cry, laugh....whatever you want.  More ladies will come along with better things to say as they will understand better than I.  I pray you find peace when you speak with your son and that God grants your family peace through this trial.  Namaste'.

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  • mw900
    mw900 Member Posts: 76
    edited October 2012

    Liz,

    My cancer was found because what I thought might be asthma turned out to be bc with met lung tumors. Looked like someone shot silly string all through my lungs. I had 13 cycles of Taxol which made me tired and I lost my hair, but other than that, not bad. All the tumors shrank, and now I'm maintaining pretty well on Tamoxifen only (oh, plus monthly Aredia). It's been 3-1/2 years from my diagnosis and my life hasn't changed much. I'm so sorry you are at Stage IV. Know that there are lots of treatments available for ER+/PR+. Hopefully treatments will go easy for you.  I hope you're with us on the boards for a long, long time.

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  • nanabolini
    nanabolini Member Posts: 61
    edited October 2012

    I too was recently dx with mets.  I have lung, bone and liver mets, all stage IV.  I know how you feel.  I too have the hilar tumor,  which was apparently causing the problem I was having, I couldn't breathe and at first was dx with COPD.  A Pet scan showed the cancer.  I wonder now why I wasn't given a Pet scan before it got so bad.  My bc was 3 years ago.  I'm getting radiation on my lung with the hope of getting some space to breathe, chemo to follow.  My family is very supportive as I'm sure yours will too.  It helps a lot to know friends and family are rooting for you.

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  • Jill49
    Jill49 Member Posts: 494
    edited November 2012

    I was also diagnosed with mets to bone and lungs 12 years after the first diagnosis and treatment.  After 10 years, I thought I was safe. Not so!

    This is a really difficult and, yes, heartbreaking time - a place none of us want to be. I'm sorry you are having to face this. My greatest source of pain was how this would affect my grown children.

    However, there are many treatment options and a community of amazing, supportive women here.  I have been relatively stable for 4 years (currently on Xeloda) and am nowhere near having exhausted possible treatments. I have been blessed to be here for my youngest son's wedding and the birth of my first grandchild.

    Wishing you all the best as you travel this bumpy road, one step at a time.

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  • LizLemon
    LizLemon Member Posts: 540
    edited November 2012

    Jill49,

    Wow - the similarity in our cases in uncanny. Of course, breast cancer was always in the back of my mind - but I actually began to believe that I maybe, really, possibly might be one of the lucky ones that was "cured" just a bit earlier this year. Oh how naive I was. It was a shocker.

    I too am about to start Xeloda. And I've already started on Tamoxifen. I can completely relate to you saying your greatest source of pain is how this would affect your grown children. I am so happy for you that you were able to see your youngest son's wedding and the birth of your first grandchild. What a joy - I cannot even imagine.

    I just came back from Chicago where I told my son. He is an only child, so I also feel bad for him that he has no sibling to commiserate with on this. He took the news pretty well (from what I can tell, of course). Though, it was just excruciating for me to have to look into his eyes and tell him this news.

    MW900 - I have life long asthma too - and I thought that's why I was having trouble breathing. That or my ever present allergies. I had a dry cough for months, that I somehow got used to, or ignored. No warning bell EVER went off in my head that it was mets. Never, not once. My DH finally said, "SOMETHING IS WRONG WITH YOU." So, I finally ditched my allergist and went to a pulmonologist - who of course, wouldn't even grace me with his presence without an chest x-ray first. Well, thank God he ordered it. And then, of course, things just progressed from there dx wise. Mentally, having it in my lungs freaks me out, because of my asthma, and HORRIBLE asthma attacks as a child, I always feared being one of those little old ladies on oxygen fighting for every breath. I'm not a little old lady, only 46, and I'm breathing actually really well now, but I'll be honest that image still scares the shit out of me.

    Nanoboli - I honestly wonder why I never was given a random, routine chest x-ray until now. I mean seriously! With history of breast cancer - even once a year would've been good. I have no clue as to how long the mets have been there, and that drives me a little batty. I would do things so differently if I knew then what I know now. My onc follow ups consisted of tumor markers, metabolic panel, he'd feel my clavicle, remaining boob, and press on my liver and pronounce me good. I felt it was basically a waste of time, so I stopped going - 4 yrs ago. Talk about guilt. What an idiot I was. I should've gone to someone else, or at least DEMANDED something like a simple chest x-ray. But, I was busy deluding myself into thinking that I was past it...that the chances were so low after so long. That was a fantasy I admit enjoying for the last 4 years. Well, party's over, as they say. And who's to say that would've changed things now? I don't know. I can't make myself crazy over it now. What's done is done. I can only hope to maybe get on the Stage I, II, III boards and tell my story as a cautionary tale. Maybe I can help someone else.

    wrsmith2x - thank you for your kind words, and for being the first voice I heard back when I reached out. You can't imagine how much it meant to me to read your words.

    Thank you all for being here and for your inspiration. I'm sorry we're on this journey, but at least we have each other.

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  • NNBBFL
    NNBBFL Member Posts: 89
    edited November 2012

    LizLemon,

    I too have lung and spinal mets. In fact it was mets to a rib bone that actually led to my diagnosis at Thanksgiving last year. It took me until April to find insurance but I started on the Budwig Cancer Diet January 1. In April I started on Arimidex (I also am ER+ and PR+). I just had my 2nd PET Scan (the first was at the end of March to establish a baseline) and the report stated: 

    SIGNIFICANT improvement as compared to prior examination, with significant decrease in the bony metastasis, resolution of most of the pulmonary metastasis, and decrease uptake noted in the left breast mass in the right hilum. No new lesions are noted.

    I too have a son who is my only child and lives in TX, when I told him he expected me to be gone by Christmas (his own interpretation, no one had given that dire prediction) but I assured him that I was doing everything in my power and that women live for years with this condition. I believe that we do have the power to help our imune systems deal with this disease and a positive attitude is an important first step. Sorry that you have found yourself on this thread but am sending you best wishes and the hope that this site gives you the the information, kinship and support that I have found here. 

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  • LizLemon
    LizLemon Member Posts: 540
    edited November 2012

    NNBBFL,

    Wow - that is such great news that you've had such great improvement over the past year. I am on Tamoxifen as I'm premenopausal, and just started Xeloda. I've heard great things about Xeloda, so I hope I'm one of the people that responds to it. I will check out that Budwig Cancer Diet also...

    I think I'm going on 3 weeks now since I was dx'd, and I'm feeling a lot more sane at the moment than I did at the dx on 10/18. So, that's something. I can think more clearly now, for sure. I also told all of my friends and family now, so I'm over that emotional, god-awful hurdle. That about ripped my heart out 100 times as I had to break the news to people who are just as in shock as I was 2.5 weeks ago. But it's done. Now I can concentrate on moving forward with as much strength as I can muster (emotionally and physically).

    I hope you continue on this great trend, and that you feel better every day!

    Love,

    LL

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  • NNBBFL
    NNBBFL Member Posts: 89
    edited November 2012

    LL,

    I remember those first few weeks and the anxiety of whether to tell or who to tell and just accepting the idea myself. It does take time but glad to hear that you are in the mindset of moving forward. There are several threads on this site that make that journey easier. You can find many on the NED thread that were dx at Stage IV and have been doing well for years. Let me know if you do the Budwig Diet as I don't see much feedback in that regard even on the Alternative thread. I do the original Budwig Diet that I found on the HealingCancerNaturally site. I know that many others have variations on that, even the Budwig Center is not according to her original basic diet protocol. Wishing you the best with your new treatments.

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