Talk me off the ledge.....

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Hi ladies: I posted here briefly regarding ongoing back pain for which I am finally getting a bone scan tommorrow. I am finding myself now feeling like I want to jump off a legde.......what if it is bad, what if my inconouis early stage cancer isn't that. My whole life could change in 24 hours, and I am so scared. Afraid to leave the house, afraid there is no treatment for me, afraid my life is not going to go on. I really don't know what to do. How do you brave ladies do it? How do you treat bone mets? I am in the New England area, any reccomendations for a bigger cancer center or doctor in this area? I am so scared, please, please help. My husband lost his mom to mbc at 2 years old, I can't imagine him having to go through this again, and my son......... he doesn't deserve it. I am so scared I can't stop crying.

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  • Spoonchek
    Spoonchek Member Posts: 158
    edited September 2011

    You need to take some slow, calm breathes and try and settle down your racing thoughts.  You don't know the results of the scan and even if it is positive for bone mets, I assure you that there are many options out there to treat it. My bone mets were discovered in 2009 and here I am just plugging along on treatment every three weeks and things are currently positive for me.

    It is important that you feel comfortable with your oncologist. That means faith in his expertise and his maner of relating to you.  Getting a second opinion at a major cancer center is not unusual at all so if you have access to one, keep it in mind as a consideration. I changed oncologists because I didn't like the tone my former onc took with me and therefore I began to question her "investment" in my case. I am extremely happy with my new onc at a different hospital and so glad that I made the change.

    Please, please don't feel like your life is over because it isn't and there are options for you that your doctor will discuss with you. Try to realize that if  you do find bone mets that the best thing is to find it early when its small and treatment can be started immediately.

    I'm sure others will be along to provide more information. I just want to try and assure you that there is a life ahead for you. 

     Teri

  • PJB
    PJB Member Posts: 2,615
    edited September 2011

    Oh, I know it's terrifying. Unless you have some kind of anti-anxiety drug to sort of blunt the fear, I'd recommend as much distracting activity as you can muster as you go through scan, getting results and whatever But you are not going to "not go on". There are lots of treatments out there even if it does turn out you have bone mets (which hopefully, you do not). You're estrogen positive, so it's very possible your treatment would start out with anti-hormonals, which for many are as effective and must less disruptive side-effect-wise than chemo. Just hang in there. As you arm yourself with more information, you'll begin to feel some semblance of more control over this. 

    Hope your scan comes back benign... Paula 

  • apple
    apple Member Posts: 7,799
    edited September 2011

    i think everyone imagines the worst.

    just wait and see.. it will most likely be benign.  sure hoping so.  Smile

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited September 2011

    I've had bad back pain for over a year now.  I've had a bone scan and a spinal CT and it is not bone mets.  In fact, there is no explanation for that pain - now I'm thinking my 17 year old bed might be causing it.   :-)

    Just because you HAD cancer and HAVE pain, doesn't mean your cancer has spread.

    As for how we do it, we put one foot in front of the other, like you will if you hear bad news.  But, I'm sure you'll end up bengin - go read in the "fear of recurrance" section how many people post the same thing you have and got good results.

  • radiant
    radiant Member Posts: 464
    edited September 2011

    While I don't have bone mets, I do have organ and soft tissue mets. It all depends on how each of us cope - for me, I always need to go to worst case first and then see what can be done from there. That's just me.

    Hopefully, it's nothing serious. However, having been on chemo for the last 5+ years, I've seen VOLUMES of women respond to zometa alone for bone mets. I think if it is bone mets, that it can be HIGHLY, highly treatable. And, zometa is for the majority of patients, a benign treatment (except for the 1st loading dose - gives you flu like symptoms for 1-2 days). Nothing like chemo however.

    Hope this helps,

       Kim

  • jenn3
    jenn3 Member Posts: 3,316
    edited September 2011

    All of what you're feeling is normal.  There isn't one of us who hasn't had a meltdown at one time or another.  I know it's hard to not think of the "what ifs", but try.  Keep your mind busy with friends, family, household chores, television, movies, books, garden, shopping - anything but the waiting game.  When you do start to feel overwhelmed, take a deep breath and tell yourself you can and will get through this.

    Wishing you luck with the scans (((hugs))) Jenn

  • misswim
    misswim Member Posts: 931
    edited September 2011

    Thank you ladies. I have serious anxiety disorder and it makes things so much worse. The onc has given me some klonopin and it has dulled the pain, believe it or not. Make me wonder how much is stress related. I will deal with whatever comes my way, but right now, it sucks. My husband never knew his mom, her breast cancer spread like wild fire when she was 31 and he was two. She is pictures on the wall and memories he can't remember that people tell him about. I have spent the last 15 years thinking I'll never get it (BC) and hearing the stories of her terrible suffering. Now here I am and  It's all I have to compare to. And it terrifies me beyond words. How could the world be so cruel that our son live that same life? I just don't get it. I am so scared.

  • sarah1968uk
    sarah1968uk Member Posts: 580
    edited September 2011

     Hi misswim,

      I too have anxiety disorder and OCD and know the torment of it. I'm wishing you Good Luck with your scans and to point out that even if it is bone mets - they are very treatable as many on here will testify. I can see how the stories of your husband's mother will haunt you, but remember that was a long time ago and things will have changed a lot since then. I have a 12 year old son, who is also high-functioning autistic, and know the fear and uncertainty of my dx. Don't assume your son will live the same life as your husband - after all, he's 11 already, not a toddler. My father died when I was 13, so I know what it's like from the other side and we did manage, though it was hard. Sending you support from UK.  Sorry if my advice is muddled or contradictory...it is well intentioned.

     Sarah xx

  • rosasmommy
    rosasmommy Member Posts: 814
    edited September 2011

    To the extent you have anxiety medicine, now is the time to use it!  And remember to take one day at a time, and take time to breath.  Easier said than done, I know.  What you are feeling is completely normal.  I'm hoping everything will turn out fine, but we will be here for you no matter what happens.  You are not alone!!

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited September 2011

    There are lots of people with anxiety disorder on this board!  I am glad you have medication, so take that and then you might consider some therapy.  

     I think you just finished chemo a week or so ago, isn't that true?  If so, it is highly unlikely that you have mets so early.

    And, as you know, most women with early stage cancers never get cancer again - you are asking questions of the unluckiest of us, which isn't wise.

    You will need to learn to manage this fear, because you will always have aches and pains that bring up the spector of cancer.  As bad as it was that your husband's mother died early, it would also be bad if your son's mother spent her life in fear of dying of cancer.  What if you live to 80 years old and it never happens?   What a waste of energy that would be, spending your life on a fear that won't come true.  You don't want your son saying, "My mother was so anxious she couldn't do anything with me normally."  You will be making breast cancer affect two generations.

    I know that the end of treatment is nerve-wracking and it's hard to adjust to the thought of being healthy again, but you must try for the sake of your family.

    Good luck. 

  • misswim
    misswim Member Posts: 931
    edited September 2011

    I still have 8 weeks to go. I have had so many complaints about odd symptoms and because of my anxiety, I feel pushed off. As well, I am at a center that did no staging scans. I had a chest x-ray, blood work, and spinal and rib x-rays after the back pain started. All were negative. I have no idea that I didn't start this with these issues and no one tested because my stats don't indicate it. I had a high oncotype score and it looms in the back of my mind. You are right, Coolbreeze, I have a hard time being mom. I am so tired, my husband travels 5 days a week for work, and my mom is helping as much as she can, but it is scary. I'm alone with my feelings alot. Pain is new to me and so I just don't know what is what. Maybe I seem crazy, who knows? I am just SO overwhlemed. I think you ladies are so brave and amazing. Thank you for your help. So much.

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2011

    Maybe I am just cranky from the heat, but these women have all been far more gentle with you than I would have been. Your post is exactly why we have a different forum for women who are scared of recurrance but haven't actually been diagnosed. http://community.breastcancer.org/forum/105

    Every single one of us had our lives "change in 24 hrs." None of us jumped off a cliff leaving our families before we were even diagnosed. None of our husband and wives DESERVE this. None of our children DESERVE this. I can't imagine why your mother in law's medical history should concern you. There is no genetic connection.

    As to a major medical center, the closest one to VT [though it depends where in VT you are located, and how the roads fared in your neck of the woods] is Dartmouth-Hitchcock. They have a full service breast center, scanning machines around every corner, and social workers who could help you figure out ways to manage your extreme anxiety.

    My greatest hope is that you never belong here. But if you do, you will find that we are no more brave than anyone else. We all have fears, hopes, dreams, humor, touched by a dose of realism. We would welcome you with open arms, and do whatever we can to help you find your way. 

  • misswim
    misswim Member Posts: 931
    edited September 2011

    Thank you. I have gone to that forum and I just didn't quite know where to look. I meant no disrespect. My mom-in-law's health history doesn't concern me, but what does is my husbands deep seated pain from her loss. That my son might suffer the same.  I didn't know where to turn for support or advice. I am sorry if I offended anyone. After tomorrow, I will know where I stand. I don't look at this disease as a "gift". I think no family or child deserves to go through it, mine or anyone elses. Again, I apologize. And thank you for the referral to DMHC. My surgery was done there, my plan was done there, but my care has been local, and that has been hard as far as getting answers, getting scans, etc. I will call them after my bone scan, irregardless.

    I apologize if my asking for help during a stressful time was innapropriate. I truly meant nothing by it.

     Prayers to you all.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited September 2011

    Misswim, sometimes people post questions like yours here in this area, and while we all understand what you are going through, it does take a lot of hubris to expect those of us who are facing the worst to calm and comfort somebody who probably is not.

    We all know you meant no harm and you didn't think of it that way.  But, all of us have children, family, husbands - none of them want us to die.  We are all doing what it takes to stay alive for our families and maybe talking you "off the ledge" is asking a bit much. .  My son is 14, 12 when I was diagnosed.  My husband's mother died of cancer.  My sister in law just died of cancer a month ago.  My dog just died of cancer, two weeks ago.  We ALL have concerns and problems and nobody deserves it, not you, not me, not anybody.  We aren't brave, we have no choice.   

    If you are still doing chemo, it is highly unlikely that your pain is from mets, especialy since you've had several tests in that area showing nothing.   You probably are just experiencing SEs from the chemo. When I first told my onc about my back pain, he said in 17 years as an oncologist he hadn't seen somebody with early stage breast cancer diagnosed with new mets during adjuvent treatment.  Being on this forum, this website, makes it seem more prevalent than it really is.  

    Not all early stagers get staging scans; I didn't.  It's not considered standard of care, although some oncologists do it anyway. 

    Anyway, we all wish you well and hope that you don't have to join us. If you do we will welcome you with open arms, but I'm pretty sure you won't.  And, I do still recommend you find a therapist to help you with your anxiety. 

  • steelrose
    steelrose Member Posts: 3,798
    edited September 2011

    misswim...

    You will feel MUCH better once you have answers... the unknown is scary for all of us. Until then, as my Dad used to say, "Don't borrow trouble!" I sincerely hope that you never join us here, but if you do I assure you that you will find a bravery in you that you never realized. Most people have  a very strong desire to live, and a lot to live for. Like your sweet little boy. Stay strong and although I know the anxiety is high, try not to waste too much of your time dwelling on imagined outcomes. 

    Wishing you the best!

    Rose. 

  • misswim
    misswim Member Posts: 931
    edited September 2011

    My goal wasn't comfort or calm; More just questions regarding treatment and how you deal with day to day stress. I know you are all in the fight of your lives, I respect that and I wish you all nothing but the best. I guess I should have asked my questions differently. I do appreciate all your words and your experiences and your advice.

    It was not my intention to upset, offend, or hurt anyone. I feel that no matter our stage, we are all connected by this awful disease and I apologize if I felt that it didn't have barriers as far as sharing fears and questions. I will only post here again to lend support to those who need it, because I read your forums everyday and I think of all of you often. (Anne, I follow your blog religiously), or if I do end up in the position that I am truly in need and in the same position. I don't want to offend any of you.

    I am very sorry.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited September 2011

    I think your title, "talk me off the ledge" wasn't appropriate because you aren't on the ledge - we are.  :-)  .

     Everybody deals with stress differently.  If you read my blog, you know for me I do it with humor.  I think there are people here who relax with music.  Whatever it is that calms you down, you have to find that and use it.  Maybe it's something simple like a scented bath.  Maybe it's an extra dose of ativan. 

    Anyway, the "not diagnosed with recurrence forum but worried" is the place to post these questions.  If you search that forum you will find a thousand posts made by people with back pain that have ended up benign.  Maybe that will make you feel better.  

  • Frapp
    Frapp Member Posts: 1,987
    edited September 2011

    Stress and fear can cause your body to experience all sorts of strange pain. The fact that.that the klonopin is helping says a lot. Take a deep breath and concentrate on normalcy for your family.

  • misswim
    misswim Member Posts: 931
    edited September 2011

    I agree with the wrong title, two klonopins after the fact.  I apologize. I sure was feeling on the ledge. Would it be ok to post my results here, after I get them? I appreciate you all taking your time, because believe it or not, you all have talked me off that "ledge". Whatever happens I will deal with it. And if the outcome is not as I hope, I hope you will all let me in and help guide me.

    I think of you all alot. I read your struggles and I pray for you. I prayed for you to be able to get your UCSF consult Anne, religiously, every day. I have been praying or your recent struggles, Jenn 3. I pray that we all won't have to deal with this some day.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited September 2011

    I would like to hear of your results, so please do follow-up.

  • vickib
    vickib Member Posts: 1,184
    edited September 2011

    Yes, please let us know. Hoping for good results!

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited September 2011

    numerous times posts have appeared at the top feed and I have responded not knowing I was in the Stage IV forum....(like I am doing right now) just go and repost on the "not diagnosed with a recurrence but concerned forum", directly below the Stage IV forum, you will get a more rounded response over there from all stages....I hope you are feeling less worried today!  And good luck with your upcoming scan!  

  • apple
    apple Member Posts: 7,799
    edited September 2011

    do let us know.

    big hugs...

  • misswim
    misswim Member Posts: 931
    edited September 2011

    Off to be shot up with radiactive dye. With any luck, answers by the evening. Thank you for all of your support. Please send prayers.

  • mumito
    mumito Member Posts: 4,562
    edited September 2011

    I just had a bone scan that lit up like a xmas tree but my onc thinks it is all arthrits so in 6 months I have to have another.Alot of us are in your shoes(hugs and good luck)

  • ck55
    ck55 Member Posts: 346
    edited September 2011

    I thought she did post in the "Not diagnosed with a recurrence or metastasis but concerned" forum. Is this not the forum I am in right now? Or am I going nuts? Tongue out

    Cyndi

  • misswim
    misswim Member Posts: 931
    edited September 2011

    Prelim results show no metastatic lesions. Full report this evening. Thank you so much!

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited September 2011

    Good prelim results, misswim!

    ck55 -- I believe the Moderators moved this conversation into the correct forum sometime early today -- it was originally in the "Stage IV" forum.

  • PJB
    PJB Member Posts: 2,615
    edited September 2011

    So glad your results are good! I hope you find a way to deal with the pain and anxiety. Paula 

  • ck55
    ck55 Member Posts: 346
    edited September 2011

    Great news on your results! Should be such a relief for you.

    I have back pain off and on and had a bone scan in 2009 that was fine. Hopefully I still am.Undecided

    AnnNYC - Thank you. I am so glad to know I haven't lost it completely.

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