5 yrs cancer free then mets BC in bone liver lung at ER!

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howcanthisbe
howcanthisbe Member Posts: 1
edited December 2014 in Advocacy

The purpose of this message is 2 fold. I feel that writing down my story may help me cope with what has happened to our family as I am having a hard time accepting it. Secondly, I want to get the word out to other Breast cancer sufferers who are perhaps going to routine oncology appointments who are deemed "cancer free" that it could potentially not be the case! My mother had undergone a lumpectomy and subsequent chemotherapy and radiation and was told for 5 years that she was cancer free. We celebrated every year when she was given the clean bill of health at her oncology appointment. I am sure that you know exactly what I mean as you have all been there with me. My mom recently started limping and had a pain in her hip that she didn't think much of....she thought that it would pass but after 3 weeks of the pain getting progressively worse, she finally made a trip to the ER and thankfully they took an xray (abnormal) that lead to a full body bone scan. It turned out that my mom's bones from her skull to her toes were full of advanced metastatic breast cancer. This was all happening a month before her last oncology appointment for her previous Stage 1 breast cancer for which her oncologist was following her for. Upon more tests and liver biopsy, my mom's lungs and liver also have advanced metastatic breast cancer nodules. She is now stage IV and it has been a big slap in the face. I am going to lose her and I feel duped by our health care system. Our whole family was mislead and based on the response to "how can this happen" from her oncologist- she stated that a bone scan is not covered by OHIP therefore this was not done and apparently that is what would have identified it sooner. My mother would have paid for the bone scan herself if given the option. She was not even told by her oncologist that travel to the bone was very common and was caught completely off guard. My question to anyone else is has this happened to you? My mother would have had the cancer for years while she was seeing her oncologist yet it was somehow not detected.... I wanted to get the word out about a bone scan because although not a doctor, a bone scan could have saved my mother's life. We are currently trying to enjoy the time that we have left with her and she is a trooper despite this... she continues to fight. I can't tell you how much it hurts that we are going to lose her. I am wondering who else if anyone can relate? Did anyone else receive a bone scan as part of the follow up to initial cancer diagnosis and as part of the yearly appointments. If you have not had a bone scan- push for one! The current OHIP system failed my mom, please don't let this situation repeat itself. Thank you for listening.

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  • leggo
    leggo Member Posts: 3,293
    edited October 2013

    So very sorry to hear about your mother. Unfortunately, bone scans are not routine for anyone, once they have been declared cancer-free. Bone mets diagnosis' are usually only made when routine blood work is wonky (a large portion have no change) or when symptoms present themselves, and less so when they are being routinely scanned for something else.



    There is no difference in survival regardless of when mets are found. Your onc will tell you this. It's unfortunate, but true, so don't let the anger of an earlier diagnosis rule your thoughts. Catching it earlier does not change survival.



    There are many women on here who have lived many years with your mothers' diagnosis. Once treatment begins, there's no reason not to be hopeful.

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  • leggo
    leggo Member Posts: 3,293
    edited October 2013

    You may also want to check out the alternative and complimentary threads. There might be some information there that can help your mother. You never know.

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  • ek25
    ek25 Member Posts: 53
    edited October 2013

    While I understand your frustration with the "process" and I'm sorry for your mother's situation, the reality is that we're all sitting ducks, fingers and toes crossed that we're done with this disease.  There's no possible way for them to tell you you're cancer free and have it be a reality because there are women whose nodes were clear at the time of diagnosis who end up metastasizing.  It's not common, but it happens.  I've never been told I was cancer free and had I been, I wouldn't have believed it.  I can only hope that the statistics go my way.

    Having breast cancer has been such an eye-opening event for me.  Prior to my diagnosis, I really believed that medicine was much more of an exact science.  The doctors are in symbiosis with the pharmaceutical companies and tests that might help to save someone's life aren't done because insurance won't pay for it.  It's depressing.

    In your mom's case, I can say that I don't know anyone who was routinely given a bone scan unless they were highly node positive and/or at an advanced stage.  With your mom at a Stage I, I don't think anyone would have assumed there would be anything elsewhere unless she was node positive.  I know none of this really helps when you're facing the situation you're facing, but as someone else said, some women can live many years as a Stage IV.  

    I wish you and your mom all the best as you come to terms with this dreadful news.  So sorry for you and for her.

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  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited October 2013

    I'm so sorry about your mother. I'm sorry, too, that she was led to believe that chemotherapy would effectively "cure" her. That's how it was presented to me when I was Stage I: that if I would agree to chemo, I'd never even have to think about cancer again. But that wasn't true then, and it isn't true now. Chemo is not a guarantee against cancer. When I read posts from newly diagnosed women who say they're going to kick cancer's a$$ with a double mastectomy and chemo, it makes me feel sad. I know you are sad and mad now, and that means you are passionate. And that will be such an asset to your mother as she fights Stage IV. You can be a huge help to her, taking notes at doctor visits and asking questions on your mother's behalf. Please encourage your mother, if she feels up to it, to read the Stage IV boards. And I hope you do too. You will see that there are many treatments, even for women with advanced Stage IV. Please don't let cancer rob your family of joy. And thank you for taking the time to post something to alert others. I hope early stagers who read it will take note. You can't live your life paranoid about a recurrence, but you do have to be vigilant, even if doctors are dismissive of your complaints.

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  • jocanuck1951
    jocanuck1951 Member Posts: 1,003
    edited October 2013

    Hi, what terrible news! Are you in Ontario, Canada? I am, the treatments or lack of, are becoming deadly now! PM me if you'd like. Xoxox. Jo

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited October 2013

    I'm sorry you and your family have to deal with this and understand where your coming from as a daughter whose mother is Stage IV. In my mom's case she was "cancer free" for over 11 years and the mets were found in her bones and a couple of lymph nodes almost a year ago. As hard as this has been and will get as time goes on, a bone scan would not have changed much. My mom's oncologist is one of the best in the country and even though the standard is to only follow a patient for 5 years, my mom's said he would follow her indefinitely even though she was "cancer free". Her mets were not picked up at her annual oncology appointments but rather at the ER after shoulder pain that became unbearable. We were told that the only reason the cancer stayed at bay this long was because my mom just happened to have a good response to her meds. She did 5 years of Tamoxifen immediately following her original breast cancer treatment and then did just over 5 years of Femara. Less than a year after completing treatment is when the mets were found. 

    As I have learned, finding the mets sooner doesn't change much. A woman who was diagnosed same time as my mom also found mets this year by accident and they were in her lungs and liver and not in the bones. Where they'll go first is a bit of a crap shoot, so an annual bone scan wouldn't have changed anything for her.

    Thankfully my mom is responding well to treatment -- so is the other woman I just mentioned.

    The diagnosis was definitely a slap in the face, especially when many are led to believe that passing the 5 year mark means you're "cured". Looking back at this point isn't going to change anything as our family has learned. The best thing to do now is to get as much information as you can and hold onto the fact that many women respond well to treatment and can still enjoy many great years even with mets -- this site is full of them! Be there for each other and enjoy the present. 

    I'm here if you want to talk, one Canadian BC daughter to another.

    ((hugs))

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  • sandymuller
    sandymuller Member Posts: 5
    edited October 2013


    Dear Howcanthisbe: I too am going through what your Mom is going through. I was first diagnosed with bc in 2005 and then again in 2010. I had a complete full body bone scan in February 2011 that was clean, and now in August 2013, I have lesions everywhere in my bones. 8 to 10 golf balls sized ones in my head that hurt and throb. I too thought I was done with this darn breast cancer and within a year and a half mine has come back with a vengeance. My ribs started breaking at the beginning of 2013, first rib five on the right, then rib 10, then rib 5 on the left. The pain has been intense all year. But now with the help of meds I'm pain free and feeling much better. I'm 55 years old, and the mother of three kids 18, 23 and 26. I'd love to talk with your Mom. Does she post here? I'll help in any way I can. --Sandy

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  • Griselda74
    Griselda74 Member Posts: 3
    edited December 2014

    Hi, my name Griselda, and I have been recently diagnosed with stage II, just want to thank you for tell the truth about cancer, We are so used to hear many people tell others that they will be cured that it makes me so mad, people should get educated on this disease and understand that there is not cure, and that you will have to live with this for the rest of your life, this is why I do not like the pink ribbon association, because they install a false sense of security that you are cured and should dance and scream and forget about cancer instead of telling people to be aware of their bodies, to try to enjoy as much as you can because cancer will return sooner or later and that by being aware of it won't be as painful as when you believe that you are completely cured. I am having a very hard time with friends and relatives trying to make them understand this. It is amazing how many people is so uneducated about his disease.

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