Help me please - i've had a recurrence!

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MiriamL
MiriamL Member Posts: 2
edited June 2014 in Triple-Negative Breast Cancer

Hello.  I have just been diagnosed with a small recurrence (or possible new primary) of my triple neg. invasive ductal.  I am scared beyond words.  I have yet to get my PET/CT scan and am paralyzed at the thought of waiting for those results.  I really need to hear of someone doing well after a similar diagnosis.  I need to feel there is hope.  I have two great kids. I am 43 and 4.5 years out from my first cancer.  I really thought I was done.  I have never reached out like this in a forum.  I am so scared.

Thank you 

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  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited January 2011

    Bless you Miriam, I wanted to reach out to you. I am triple negative as well, and although at this moment, I do not have a recurrence, I can promise you that there will be many to come along and offer you reassurance from their journeys.  I see you are a new poster, so to let you know, there is a limit on initial postings (is it still 5 per day?) but you can PM (private message) anyone without limits. I realize this must be very stressful, and I am very glad you chose to reach out. You will be embraced, promise :) Hang in there, and you will also get info on any trials that are currently underway here too.

    again, so sorry you are going through this.

    Traci

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  • Luah
    Luah Member Posts: 1,541
    edited January 2011

    MiriamL:  I am so sorry you are going through this. It sounds like a local recurrence or new primary in the breast?  Hopefully you will get some more information soon, the uncertainty (and fear of spread) is the worst.    

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  • MsBliss
    MsBliss Member Posts: 536
    edited January 2011

    Dear Miriam,

    First, TAKE A DEEP BREATH, and try and center yourself.  

    Next, a new primary of tnbc after nearly 5 years would be rare indeed, a recurrence at this late stage, even rarer. What have the doctors told you about the pathology?

    Have you ever had your vitamin D levels checked?

    Now, remember, this is manageable, and you will panic, but then, you will find your strength.

    This forum is filled with women who have experienced local recurrence, and they are NED years and years later.

    Bliss

    Please let us know how you are doing, too.  

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  • ktcher
    ktcher Member Posts: 11
    edited January 2011

    Hello Miriam,

    I am a new poster as of today.  I, too, was just diagnosed with a recurrence in mid-December--a metastacized tumor in the brain.  I had a craniotomy to remove the tumor on December 28.  All is healing well.  I will start whole brain radiation next week after the staples come out.

    I'm hoping by now you have heard some news.  One day at a time. 

    Be strong.

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  • Titan
    Titan Member Posts: 2,956
    edited January 2011

    Hi Miriam...It's good you came here...we will help you!  There is a triple negative forum just for us..please come on over and be with us..we will help you get through this..yes..after 4.5 years you should be done with triple neg..maybe this new one is er or pr positive???

    Yes..cancer sucks but we will be with you...

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  • Titan
    Titan Member Posts: 2,956
    edited January 2011

    Oh duh..I'm stupid..you are already here!  sorry about that...it's late

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  • Dabulls23
    Dabulls23 Member Posts: 30
    edited January 2011

    Miriam I am so sorry to hear what u r going thru...You will be in my thoughts...

    Warm Hugz

    DB

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2011

    Miriam,

    Just wanting to wish you all the best and to tell you to come on over the "Calling all TNS" thread and join us.  We post on a daily basis over there and keep up with each other, please join us.

    Wishing you all the very best,

    Linda

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  • sdstarfish
    sdstarfish Member Posts: 544
    edited January 2011

    (((((Miriam)))))

    Do you know yet when you'll have your scans?

    Lisa

    www.pinkkitchen.info  

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  • tibet
    tibet Member Posts: 545
    edited January 2011

    Miriam

    Sorry to hear about it but try to think positive. If it is a new primary, it isn't as bad as a recurrence. What was your stage and treatment 4.5yrs ago? Did you have mastectomy or is this time the tumor at the same site as first time? What does your doctor say? Is it ER positive or stil TN?

    Usually based on what I heard, TN recurrence is rare after 4 yrs in general, some even say after 3 yrs.  

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  • Sadhighway
    Sadhighway Member Posts: 2
    edited January 2011

    I have cancer again...i do not understand the triple neg ...i only know its back, and im sooo soo scared..now i have to have bone scans and cat scans ...brain and bone cancer checks...I felt it was back in march ..they said no its scar tissue...again i asked in october as the nipple shape was inverted..no its scar tissue and you are a mystery woman ....they did a biopsy..and hey ..guess what...its back...no information until you ask and your not fat enough for a tummy tuck...hell...yes im scared...i call the samaitans ..they listen  ...they say nothing ..hell yes im scared.. I go to work and know they are going to reposess my home when i cant pay ( soon)...yep im scared.

     Dont worry is all i heard..nope im not convinced....

     do they know what they are doing...?? do I know whats happening..NO!

    Im sorry I cant help...can you?

    I do hope you fare better than me
    Diagnosis: 1/14/2011, ILC, Stage II, 2/20 nodes

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  • thenewme
    thenewme Member Posts: 1,611
    edited January 2011

    Hi Sadhighway,

    I just saw your post, and I'm so sorry you've had a recurrence!   What point are you at in treatment?  Does your oncologist have a plan in place?  If you care to give more details about your situation, I'm sure there are some ladies here (especially on the Stage IV) board who may have some helpful suggestions for you!  

    Do you have a navigator or ombudsman at your treatment center who may be able to help you with some of the other issues you're dealing with (financial, emotional,etc)?  Have you contacted any of the BC agencies for assistance?  Let us know if you need some resources - lots of people here have been in similar situations, and some very helpful sites have been posted.  

    Best of luck and please keep posting!  We care!

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  • thenewme
    thenewme Member Posts: 1,611
    edited February 2011

    Hi Sadhighway - how are you doing?  I'm thinking of you and hoping things are looking up for you!

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  • tninalabama
    tninalabama Member Posts: 64
    edited February 2011

    All I can say is be scared, then think of your recurrence as a chronic disease. That helps me. I just know it's there, but I have friends who have Crohn's or lupus, so I am in the same boat with them. It helps, especially since I have young children. Good luck on your treatment plans!!

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  • epgnyc
    epgnyc Member Posts: 101
    edited May 2011

    I too have had a recurrence of TN, Miriam and Sadhighway, and I can definitely relate to your fear and upset with this news.  It was bad enough to get one TN diagnosis, much less two.  I had my first bout with TN in 2002 and in Feb. 2011 was diagnosed with either a local recurrence or a new primary (this is what the oncologist thinks it is, despite the new tumor's being intertwined with the scar tissue from the first surgery).  He said that getting a local recurrence more than 6 years out is unheard of.  However, there is so much in breast cancer that is "unheard of," who knows.  All I do know is this is SCARY!  I had a double mastectomy (one prophelactic) in early March and am about to have my 3rd treatment of AC chemo.  My treatment will be dose dense 4 AC and then 4 Taxol.  I'm just putting one foot in front of the other and telling myself that I got through it once and that I can do it again.  But dang, this is getting old!  Miriam, I'm hoping yours scan results were good and wish you the very best going forward.  Sadhighway, hang in there....we're here for you. 

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  • Lynne925
    Lynne925 Member Posts: 5
    edited June 2011

    epgnyc,  my story mirrors yours.  I was first diagnosed in Dec 2002, had lumpectomy, chemo and radiation.  I thought I was done with it until Feb 2011, my mammogram showed what they thought was calcification because it was in the same spot as prior cancer and they all said highly unlikely that it would return to the same spot after radiation.  On March 15 I had open biopsy and was told it was cancer, TN again!!  On June 3rd I too  had bilateral mastectomy with reconstruction at Moffitt Cancer Center in Tampa.  Opinions differ as to whether this is recurrence or new primary??  there were 2 tumors, small invasive .8cm and DCIS @ 2.2...so this was different than before.  they took 17 lymph nodes last time and all were negative.  this time the surgeon was able to find just one lymph node and I am told that she was brilliant to be able to find it...anyway it had cancer so now I am told I need chemo.  My oncologist said he was going to reach out for 2nd opinions to determine what chemo to give me due to triple neg recurrence.

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