Stage IV MBC and Feeling very Isolated and Alone..!!

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Bonitaj
Bonitaj Member Posts: 67
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis


ScaredHi everyone.. I have finally got up the nerve to say something.. I am still in SHOCK..!! So please foegive me if I don't remember all the BC


dx: 08/09/2013.. Stage IV Metastatic BC.. grade 3 ER+/PR+ HER2- w/mets.. After feeling lumps in my breast, that were tender.


I literally felt nothing the day before and then.. there they were.. 2 mammograms, an ultra sound, biopsy, various MRI's, Pet/CT, whole body Bone Scan, etc..


here I am.. Feeling so Isolated. confused, frightened and anxious..!!


I am on Letrozole.. as of 09/11/2013..


NO OTHER TREATMENT.. HAVING TROUBLE WITH PAIN..


I have fibromyalgia.. which I've had forever, so I live with a lot of pain..


Since my diagnosis of MBC.. AND starting the medication, I hurt even more..


My path/Pet/CT reports say, DISSEMINATED METASTATIC DISEASE..!! I REALLY DON'T LIKE THESE WORDS..!!


I am also angry because in 2011.. my regular Mammo.. had something suspect..!! So, it was repeated and an ultra sound was done. I was told, everything was alright.. There was a follow up Mammo.. 3 months later and I was said to be fine, NO CHANGE.. JUST DENSE TISSUE..!!


HERE I AM IN 2013 WITH THIS..!!!


I am looking for someone to relate to.. God Bless All of you, Bj


P.S. So sorry we are here and so glad we are here..!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    I was just about to post the link to the Stage IV forum in your Newly Diagnosed thread. I'm not IV, but you'll find wonderful women posting on this thread.


    Don't beat yourself up about the mammograms, dense breast tissue really does make bc difficult to find. The younger a woman is, the more dense the breast tissue usually is. One of the most informative books for me was Susan Love's Breast Book. Get the most recent edition. All best wishes - keep checking back on this thread - sure you'll find a god response.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    Meant to say try this forum too:


    http://community.breastcancer.org/forum/8

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  • aaoaao
    aaoaao Member Posts: 593
    edited October 2013


    I'm Stage IV and I agree that this is a hard dx to take. There are lots of supportive ladies in our position in the Stage IV section. Please explore the threads there and post there and you will get answers/support better suited to your situation. Also there is a thread that people with cancer and fibromyalgia occasionally post to...at least you will find people who have the same dx as you that you may be able to connect with.


    http://community.breastcancer.org/forum/142/topic/803871


    I'm hoping that you find at least some help here.

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  • Bonitaj
    Bonitaj Member Posts: 67
    edited October 2013


    Hi SunflowersMA .. thank you for your reply. Right now I need all the support I can get. I'll look into that book. God Bless you. Bj Smile

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  • Bonitaj
    Bonitaj Member Posts: 67
    edited October 2013


    Hi aaoaao .. Thank you for your reply.. Sorry you are here.. I wish you the best as well. Yes MBC is a hard pill to swallow.. I was calm when I was told this.. since then I have been on a roller coaster ride.. of emothion and confusion. All I keep saying is, this is a lot..!!!! Thank you for the link..


    God Bless and Keep you. Sending you (((HUGS))) Bj

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  • Dita183426
    Dita183426 Member Posts: 157
    edited October 2013

    Sorry you have to be here. Its really tough when you first get diagnosed. I was diagnosed stage iv straight from the start too...and I had te  lump checked and told it was I was told it was ok too.

    Some advice I can give is that it does get easier. There is till life to be had and you will amazed how strong you can be when you need to. You will find the joy in life again.  There is lots of information on this board and the women are well informed. Everyone is on the same boat alas. 

    Good luck


     

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  • Bonitaj
    Bonitaj Member Posts: 67
    edited October 2013


    Dita.. Stage IV .. out the gate is very hard to digest. I am just on this roller coaster ride right now.. Seems my body is experiencing something different every other day.. I will be working with my Oco.. this week and hopefully we can figure out some better pain management. My sleeping at night is also been a big issue. First I am not sleeping much, than I am sleeping too much.. Anyway being here is helping me already. Just having someone who understands the feelings I am having helps.. Thanks you for the support.. and your words of encouragement. God Bless you.Bj

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  • MaraUK
    MaraUK Member Posts: 147
    edited October 2013


    just to say hi and hugs


    Mara x

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  • Bonitaj
    Bonitaj Member Posts: 67
    edited November 2013


    Mara


    Thank you for the reply and you ((HUGS))..!! ((HUGS)) Right back at you.. even though, none of us want to be here.. I am so happy to have people who can truly understand where I am.. Everyone here has been a God sent..


    THANK YOU, Bj

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  • Bonitaj
    Bonitaj Member Posts: 67
    edited November 2013


    I HAD MY APPOINTMENT ON YESTERDAY WITH DR. E. (as I call him, my Oco..)


    I HAVE SOME GOOD NEWS TO SHARE.. After only taking '1' pill.. per day, for my Stage IV Metastatic Breast CANcer for the last 8 weeks, many test and such..


    The Report of My Lord, said.. (my Onc.. I call Dr. E.. gave me the report..)


    Your Brain MRI.. is Still Clear..!!


    Your Bone Scan is NOW CLEAR...!!


    THERE IS NO LONGER..any CANcer in your pelvic bone, nor your spine..nor your shoulder bone.. there is none in any of your bones..!!


    The Tumors in your Breast are so Tiny.. we have to search to find them..!!


    NO SURGERY..!!


    NO CHEMO..!!


    NO RADIATION..!!!


    HOWEVER LONG MY LIFE MAY BE.. I WILL THANK, PRAISE AND GLORIFY YOUR HOLY NAME, IN JESUS NAME I PRAY FOR ALL THINGS, AMEN..!!


    I will keep in touch with all of you.. you have given me strength, understanding and welcome me in our club.. (that none of us want to belong to..) you have embraced me in a way others could not.. Thank you..!! God Bless and keep you All..


    P.S. I hope i didn't offend anyone with my prayer, praise and thankgiving. I don't apologize for my BELIEF IN GOD..!! THANKS AGAIN..


    I AM GOING TO SEE A PAIN SPECIALIST.. TO WORK SOMETHING OUT..

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  • Bonitaj
    Bonitaj Member Posts: 67
    edited November 2013


    Hi Deb.. Thank you for your blessing.. I pray He Keeps you and all that are here. I believe in Miracles.. I have seen them too. I have experienced God's Marvelous Power..!! God Bless and keep you and yours.. Holding on to my Faith and Learning to live in this new experince.. Bj <3

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  • barsco1963
    barsco1963 Member Posts: 2,119
    edited November 2013


    Bonitaj - what wonderful news for you! I do hope that you remain NED (No Evidence of Disease) for a very long time to come.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2013


    wow! I would say that 8 weeks of tx and you're disease free? There is no other word but miracle.

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  • Bonitaj
    Bonitaj Member Posts: 67
    edited November 2013


    Hello Everyone.. Thank you all for coming here in support of our journeys.. I guess I should clarify, I was Dx. IDC, there are 2 tumors in my left breast the largest was 2cm, Stage IV, Grade 3, mets (axillary node, multiple chest area nodes, liver and bones)


    MY 'BONES'... NOW HAVE NO EVIDENCE OF DiSEASE..!! I AM SO VERY BLESSED AND HAPPY FOR THIS NEWS.. I WILL TAKE IT..!! BECAUSE THERE WAS ALMOST NOTHING BUT BAD NEWS.. FROM THE WORD GO..!!


    SO I AM GRATEFUL AND HOPEFUL THAT THE MEDS KEEP WORKING..


    I hope to hear from all.. trying hard to get grounded and stay positive.. God Bless.. Bj

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  • Bostongirl101
    Bostongirl101 Member Posts: 3
    edited January 2014

    thank you for the hope! I needed to read something like that. I was diagnosed stage 4 bc. It is in the bone. Been strong for everyone else, but sliding into a dark place. I need to give it to The Lord and trust him.

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