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PauldingMom
PauldingMom Member Posts: 927
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I'm looking for advice, help, encouragement from someone with my similar DX.

A year ago I had TN BC, surgery, radiation and chemo. killed it and I was told I was all better. "See ya in a year" "You've beat it" so on and so on.

Then I began to have knee pain and was treated for a sciatic nerve pinch. Two epidurals and no relief. I complained to several docs. about the pain in my chest, neck, back, legs....... They treated me like a hypochondriac. They started to refuse me pain medication. I felt like such a damn fool. Then I found a different lump in my shoulder. Finally a NURSE PRAC. got concerned and sent me for a CT Scan. I had lost close to 40 lbs. by this point. I have metastasised  cancer in my liver, bones, nodes and brain. I told them I was sick!!

Now I'm just not sure what to do.  I've started rads. on the brain. Chemo will start at the end of the month. Praying to get on the PARP trial.

Can someone direct me to a group of ladies going through this crap too?

Thank you in advance and sorry for being such a downer. I really am generally a happy go lucky person, but I really really don't want to be here.  

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  • JannyM
    JannyM Member Posts: 67
    edited November 2010

    Oh honey, I'm so sorry.  I can't believe your Onc let you go for a whole year w/o some sort of testing.  I'm a "Triple Negative" gal too and learned that I had mets to the brain just 2 months after my original diagnosis, which was July of this year.  Have you checked on the "Gamma Knife" or "Cyber Knife" procedure for those brain mets???  I had the "Gamma Knife," and I'm sooooooo thankful for it.  I did also have to have a shunt put in, which is causing me problems, so I'm getting ready to have the "valve" adjusted on the silly thing.  I imagine the girls on the Stave IV Board will have a lot of insight for you and I wish you the best of luck my dear.  God Bless.  Jan

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  • Frankie_
    Frankie_ Member Posts: 422
    edited November 2010

    Hi, I am so sorry that this happened to you. I am not TN so I cannot offer any advice on treatment. I am new to mets myself in (August)-just 5months aftermy initial chemo. I had 2 incidents that got me into my Onc and before you know it I was told I had a brain met. Dealt with it had cyberknife treatment. For your bones-I would suggest monthly zometa infusions-if you are not already doing so.

    Just wondering did you have all the scans at initial dx?

    I know that others will come along and offer some suggestions.

    Frankie

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  • Annie62
    Annie62 Member Posts: 1,081
    edited November 2010

    I am so so sorry that you are going through this. I am very concerned by your post that no one thought to check for bone mets when you were complaining of body wide pain within 1 year of a TN breast cancer diagnosis. If you onc , or other docs aware of your history, did not send you for a bone scan then, I think you may need to consider switching oncs. That is appalling.

    I'm sure some of the other TN ladies with mets will be along with some specifics on treatments. I'm sorry I can't help in that regard. I wish you the best,

    Annie

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  • meglove
    meglove Member Posts: 267
    edited November 2010

    I am so sorry to hear dr refused to order test on you. I remember it happened to someone else. They are nuts sometimes. It is not their lives they are dealing with. I hope you can find a doc who can listen to your concerns and take actions.  

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  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited November 2010

    OMG...I can't believe that this has happened to you...come on over to the Stage IV forum...lots of us over there are dealing with this crap - you will get some excellent intel on the range of treatments - I have bone mets only, chainsawz and DarleneDenise are the brain mets knowledge folks, Konakat - she just got through a bout with her liver and has some other issues as well - we are on these boards....Its the club no one wants to join and then CS came up with the SS Mets Cruise Line...just go to 'jump to a forum' at the top, hit the drop down and scroll until you find Stage IV and join us...we will help ya get through this - Big warm fuzzy hugs...LowRider

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  • Bold
    Bold Member Posts: 692
    edited November 2010

    I have little to offer except I am sending your love and healing!!!! I can not believe that they did not testing on you. Not even Tumor markers? Geeze I am her2+++ but I am tested every three months and have for the past 2 years. I have had scans and test up the ying yang. I am upset that you were not treated properly!! I hope that the doctors have some accountability!

    In peace and beauty

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited November 2010

    Pauldingmom, I'm so sorry you're going through this now.

    I'm joining the others in inviting you over to the Stage IV forum. I also agree, the neglect of your docs is appalling. We hear so often "We test if there are symptms" but if testing is not done when there are symptoms it comes close to malpractice. As others have said, I suggest new docs. 

    All the best.

    Leah

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  • Bambaloos
    Bambaloos Member Posts: 85
    edited November 2010

    I am so terribly sorry about your recent diagnosis. Go to the Stage IV forum - you will find a bunch of brave, strong women with lots of good advice and support.  Sending tons of prayers your way, God bless you in your journey.

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  • PauldingMom
    PauldingMom Member Posts: 927
    edited November 2010

    No Initial scan at original DX. I even asked for one and was told it would be redundant. Okay heading your way to stage IV. Scared but going....

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  • apple
    apple Member Posts: 7,799
    edited November 2010

    aww.. stupid doctors.

    see you soon.

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