New stage IV diagnosis - waiting for results due Christmas Eve

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Lou746
Lou746 Member Posts: 9
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I don't know where to start. I had to visit a minor injuries clinic at a local hospital a few weeks ago as I woke up with a feeling like my ribs were on fire. They did an x-ray and confirmed there are two lesions on my lower ribs RHS.  I had my treatment on the RHS for the breast cancer. I was only diagnosed last year with a low grade small tumour and can't quite get my head around how this can have progressed so quickly. I was taking Tamoxifen, but after 6 months of being extremely ill with side effects this was stopped.(It turns out that the "side effects" were being caused by a large bowel tumour which I had removed a few weeks ago which is unrelated to my breast cancer).I spent so long waiting on getting a diagnosis for the bowel problem over a year - my GP thought it was the tamoxifen and anti-inflammatories I was taking, or that I had H-pylori, or that it was IBS...that only when I started passing blood in my stool, almost a year later, was I finally referred for a colonoscopy. I wonder now if I had kept taking the Tamoxifen then I would not have bone mets now, or if it was already happening. Not looking forward to Christmas Eve when it should be a happy time with your family, but my poor husband and 22 year old daughter are so upset. Just sharing my sadness... 

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  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited December 2012

    I'm so sorry. You didn't say you had an oncologist. 

    What tests did you have? I'm confused; How can you be diagnosed with stage IV bone mets before having test results?

    With the results, if it is bone mets, an oncologist will get you on a treatment plan and you'll feel better knowing something is being done.

    It sucks having cancer anytime, but the holidays seem worse somehow.

    Good luck, Cheryl

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2012

    Hi Lou, so sorry that you have gotten this news but still have to wait till Christmas Eve for confirmation. Please don't look back and blame yourself for not taking the Tamoxifen, it is possible that those spots have been there from the beginning but were too small to show up on any scans........it happens. Take heart though as mets to the bones and being ER + is not so bad. Having the positive means that the AI's will work for you and believe me they are very powerful little pills. I have bone mets only and am on Femara.........so far for two years with fifteen months on Arimidex before that.



    What I'm trying to say is that there are many years of good life ahead of you so go ahead and live life to the fullest.



    Love n hugs. Chrissy

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited December 2012

    (((Lou))) - I am so sorry you received this news, and surprised you have to wait until Christmas Eve to get further details.  Not that there's ever good timing, but that is horrible.  I hope your onc can provide a treatment plan that will knock out those mets pronto!

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  • ShelMel
    ShelMel Member Posts: 207
    edited December 2012

    Lou -

    I'm so sorry that you've got all of this going on and the waiting is so hard.

    I just wanted to let you know what my oncologist said, because I stopped taking Tamoxifen back in June 2012 because of the side effects. He told me that the mets was going to happen no matter what, Tamoxifen or not. I'm trying really hard to believe him. I know it's hard, but please don't torture yourself with what could have beens. I'm trusting my oncologist's words, if for no other reason, than to have some peace.

    Praying for peace for you, too, sweetie.

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  • marywh
    marywh Member Posts: 2,280
    edited December 2012

    So sorry you have to join us here, but you will get lots of support, love and understanding. I couldnt get through my days without it.

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited December 2012

    Hi Lou,

    (((Hugs))) for you

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  • Lou746
    Lou746 Member Posts: 9
    edited December 2012

    Hi Cheryl1946. When the initial xray was done, the oncology radiologist checked the results and confirmed the bone mets. I saw my breast oncologist the week after.  A bone scan and a CT was organised and completed, which I'm waiting on the results for. My oncologists has advised that I'll probably be given radiation therapy, bone strengtheners - zometa, and Zoladex and letrozole as I'm premeopausal. Depending on resluts.

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  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited December 2012

    I didn't get a definite bone mets diagnosis until I had the cat scan guided bone biopsy results.

    Although doctors saw the area on xrays and scans, they wanted definitive proof of mets.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2012

    Just checking in on you to see how your are doing. Hopefully you are getting you head around all this and the waiting is coming to an end.......not long now. Hang in there.......



    Love n hugs. Chrissy

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited December 2012

    Lou, I'm sorry to hear this is happening.

    You should know that bone mets is considered a chronic condition.

    All the best.

    Leah

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  • Lou746
    Lou746 Member Posts: 9
    edited December 2012

    Hi ladies. Got my results this morning and the breast oncologist advises there is no evidence of cancer on the CT or bone scan which is fantastic. I am stunned as this is very different from what we expected as the oncology radiologist confirmed from the inital xray that it was cancer. There are lesions on my ribs which have yet to be explained as they were not there in February or last December. They may be due to radiotherapy damage(but strangely there is something on the back of my rib cage - I am still getting pain in my ribs/sternum and upper back). They have taken more xrays and I will get the results next week. If they are still unsure, then they will order an MRI.

    I was curious to find out what a bone biopsy entailed as this was mentioned by the onccologist - Cheryl1946 - can you advise?

    I feel like I should be over the moon but am strangely reticent - my husband thinks that's the end of it and I should be happy to accept what I have been told, but after what we have been through in the last 4 weeks I still have a nagging doubt. I'm scared to be happy about it as I don't want this to turn around again.

    Thanks for listening...

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited December 2012

    Hi Lou,

    I am happy to hear that your results turned out fine! A wonderful Christmas present!!

    I am on here for my mother who isn't very internet savvy. She had stage 3 breast cancer over 11 years ago and last month because of severe pain in the shoulder we took her to the hospital where a CT scan showed 3 bone lesions suspicious of mets. She has since has a bone scan, ultrasound, lymph node biopsy and then finally last week a bone biopsy for which she is awaiting the results. I can tell you having been there with her that the bone biopsy was quite easy. It was an ultrasound guided biopsy of the clavicle bone and they took 3 samples. It only lasted a few minutes. They numbed the area and she only felt a quick jolt of pain when they took the first sample -- no sedatives or anything -- and she left with only a piece of tape over the little hole they made. We went straight to the mall and shopped all day. Maybe it depends what part of the body they do it, but the clavicle was supposed to be a "painful spot" and she experienced almost no pain.

    Merry Christmas!

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  • Angela-R
    Angela-R Member Posts: 273
    edited December 2012

    Hi Lou



    I understand your reticence. It is natural as there are still unanswered questions for you and more tests.



    I hope you can stick with the old saying..."prepare for the worst and hope for the best" I would add " ...live for the best", and I hope you can properly enjoy your holiday time.



    Merry Christmas

    Angela

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  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited December 2012

    Hi Lou,

    I'm happy you got good results. I think that the oncology radiologist was totally wrong to say it was cancer from an xray; what a jerk!

     I had a cat scan guided bone biopsy of my humerus done at Dana Farber in Boston. It was done under conscious sedation, and I had no pain during or after. IV meds were given and a fairly large bore needle inserted to get several samples. I had to stay about an hour after, and then went home.

    Got the results a week later ( it took longer because onc would not call me with results) .

    Have a happy holiday!

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  • jabal
    jabal Member Posts: 79
    edited January 2013

    I have to tell all of you ......I have read most of the postings on this thread and I am amazed (I am new to this cancer stuff) at how completely supportive you all are.  I mean when each of you are facing your own crisis no matter what stage you are , you always say uplifting things to each and every person here.  What an amazing group of women.  I am humbled by it all.  God be with us

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