Triple negative 3rd time in 1 1/2 years

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alivejean
alivejean Member Posts: 3
edited June 2014 in Triple-Negative Breast Cancer

Has anyone been faced with a diagnosis three times for this terrible cancer?  I had surgery, chemo and radiation in 2007. Three months later I said I feel something and went through tests that were negative until I insisted on a cell aspiration and pet/cat scan 12/31/07.  January I was told sorry, you're right; February 8, 2008 3/5 lymph nodes were positive for metastatic adenocarcinoma. Now, I'm told I have increasing left axillary adenopathy and metastatic adenopathy suspected.  With that in mind, my oncologist wants me to have a mastectomy.  I just can't digest this as I feel stronger and better than in years.  Anyone out there with a similar story or suggestions?

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2008

    Hi Alive Jean,

    I answer your PM.  Wishing you peace and power to get to the next step.

    Flalady

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  • CalGal
    CalGal Member Posts: 469
    edited September 2008

    Hi Alive Jean -

    I was dx'd with trip neg bc in 10/04, invasive on one side, DCIS on the other.   Due to the tumor sizes, clear nodes and wanting kids, I had bi-lat lump's and 38x rad'tn. I was very relieved to be able to have lump's rather than a mast ...

    In 10/05, the radiologist missed a 2 cm tumor on the invasive side ... In 12/2005, I found the lump which was previously shown, but the mamm's had been lost since I asked to see them in 10/05 ... when I got my hands on the mamm's which were lost for months, even I could see the tumor.  

    I then asked again for a CT scan, and finally got one and more than I ever feared:   mets to the liver and the unrelated "incidental find" of likely kidney cancer.  That was horrible.

    I've worked-out my entire adult life, and still say that "I'm very healthy except for the cancer".   I was and still am asymptomatic for my mets.  You can feel great physically and still have this horrible disease inside you ... 

    That said, I can't help but to wonder if I could have avoided mets had I had a MAST & CHEMO?  I don't beat myself up on that, I made the best choices for various reasons at the time ...  

    I would suggest that you consider a second opinion ...  

    An outstanding current book which will really give you all the options on mast & recon, is "The Breast Reconstruction Guidebook, Issues & Answers from Research to Recovery" by Kathy Steligo.  I got my copy through FORCE (Facing Our Risk of Cancer Empowered) for those who are BRCA1/2 or otherwise at high risk for bc and oc, at www.facingourrisk.org

    Best to you,

    CalGal

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  • alivejean
    alivejean Member Posts: 3
    edited September 2008

    Hi CalGal.

    Thank you for the info. You have given me food for thought.  The latest pet/cat does talk about low grade metabolic activity and a new 4 cm cyctic mass with a thick wall now present.  So I guess that may be why my oncologist is pushing for a mastectomy for a good reason.

    You know the saying, I'll be back... Thanks again

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  • Roya
    Roya Member Posts: 346
    edited September 2008

    CalGal, did you get the chemo in 2004 after the lumpectomies?

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  • CalGal
    CalGal Member Posts: 469
    edited September 2008

    Alive Jean -

    Glad my post is helpful ... 

    Roya -

    No, I did not do chemo in 2004 ... a very tough decision.   My 2 cm tumor was borderline for chemo and I was a 4-1/2 mo newlywed wanting kids ... so I let the SNB call it ... It was clear - so I did not do chemo, only 38x rad'tn.

    What I did not know then and even now, it's what I call a "dirty secret" is that while MOST bc, when it spreads, it spreads to the lymph nodes first, NOT ALL bc follows that pattern .. and bc can spread directly thru the blood, which is what happened in my case.   To go from bc with clear nodes to mets to the liver in 15 mos is very uncommon.

    CalGal

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  • alivejean
    alivejean Member Posts: 3
    edited September 2008

    Hi CalGal and ladies.

    As we become better educatored with our own cancer, there can't be any guilt or blame as it is what it is on what our choices for treatment have been as we trusted our doctors to make the best decision at the time for us.  Despite 8 rounds of chemo and 37 hits of radiation mine came back three months later.  Now, 6 months out from 2nd surgery, it's back and spreading. This morning I found another lump under my arm.   No, I don't doubt the need for a mastectomy and axilla surgery again.  I just pray I'll have feeling left in my left shoulder and arm. I'm 57 in October and am faced with whether or not to have reconstruction done.  It's my understanding that every ten years you need to have a replacement done every 10 years.  Getting realistic, at 67 will I really care? But, living without the breast is like a death.  I'm having trouble dealing right now.

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  • Jellydonut
    Jellydonut Member Posts: 1,043
    edited September 2008

    Dear Jean,

    I too had two recurrences since the initial diagnosis and I'm still here, alive, and very well!!  By the third time I was ready for the bilateral mastectomy and decided on no reconstruction.  I'm 56, not married and do miss my breasts but honestly feel I don't want to endure all that's involved in reconstructing.   Maybe someday I'll change my mind and go for it.

    I'm sorry you're dealing with this crap, over and over again.  You'll make the decision that's best for you.

    Best wishes,

    Jelly

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  • March907
    March907 Member Posts: 11
    edited September 2008

    Hello 3TBCers

    After 5 months of NED, the damn cancer has returned in my skin.  Currently on xeloda.  It is crappy.  Had a prophalactic bilateral mastectomy a year ago after the lumpectomy didn't get it all.  Also had chemo and rads.  Nothing kills this aggressive form of cancer.  Now hubby has just been diagnosed with prostate cancer!   What did I do to deserve this!?!?!?!    Just ranting.  ChristineE

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  • sibu
    sibu Member Posts: 7
    edited September 2008

    alivejean, my question is this--is there a difference between seeing this as 2 recurrences within a year, versus "the treatment didn't work"? I mean, did you get an "all clear" right after treatment, or could it be that it just wasn't effective?

    Don't mean to split hairs, it's just that I'm going through the same thing. Something lighting up on a PET scan, and I don't know if it's been there all along. I'm not sure what great difference it makes, either, except that I've been told that if chemo doesn't work on triplenegs, there is nothing they can do. 

    I also wonder if the whole "lumpectomy is as effective as mast." has been studied in triplenegs--seems we hear a lot of stories like you ladies'. Could it be that our aggressive cancer makes us better candidates for mastectomies the first time?

    Just wondering out loud.

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  • morgaine109
    morgaine109 Member Posts: 161
    edited September 2008

    Hi alivejean. At 39, I was diagnosed with dcis in my left breast but was still a stage 0. I had a mastectomy/diep of that breast in Nov. 2007. Why? One year after I was diagnosed, my older sister, who had sworn up and down that she was fine, was diagnosed with stage IIIa BC, 51 nodes positive (yes, 51). They also found she had nose cancer at the same time. She had mastectomy to her breast, as well as chemo and radition.Her nose cancer was treated at the same.

    We are both still here, thank god.  I didn't feel like there was any choice in having a mastectomy. My sister's cancer was very very agressive. You do what you have to do. That said, my heart goes out to you. Good luck and take care. 

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  • morgaine109
    morgaine109 Member Posts: 161
    edited September 2008

    Oh and my sister, who was Stage IIIa with 51 nodes positive, is also triple negative. She got hit with everything.

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  • pinoideae
    pinoideae Member Posts: 1,271
    edited September 2008

    Alivejean, did you see your path report?  What were the margins when they removed your tumor?  Mastectomy is the only option now, as you cannot have radiation twice in the same tissue.  However, you may be able to discuss reconstruction at the same time, seeing as you cannot do radiation again, you will not have to be concerned of the after affects of radiation on your foob.  I am thinking chemotherapy before your recon would be the best way for you to go.  Discuss this with your onc and see what they think.  Just seems logical to me, do the chemo prior to the mastectomy, safest.

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited September 2008

    Hey Christine, March907,

    I am really sorry for all you have gone through and for your dh's dx now too.

    Triple neg is a nasty cancer- we all agree on that.

    Some people are never NED. Their docs don't do the proper staging when they are first dx'd and they think they are a different stage than what they are. One example of this was my dear friend Ferne. She was dx'd stage 2 or 3 when, in fact, if she had been given a PET/CT upon that dx her doc would have found that she already had mets. She went on treatment and some things worked and some didn't. Her problem was they let the mets go for too long before they were discovered.

    I am glad you are on treatment... chemo does kill this cancer. In fact, it kills it better than it does for hormone sensitive cancer. I hope that you get the right cocktail and you can become stable very soon.

    I think you could be a good spokesperson for baseline scans for everyone who is newly dx'd. Perhaps your onc missed this spread from the very beginning? I don't know - but even though it is devastating that you know this now, thank heavens you do know now and can actively fight back.

    I wish Ferne had that opportunity.

    I hope you and your husband both find some answers and good treatment.

    It is understandable to mad - I would be. But don't give up. Don't let the anger cloud the vision of succeeding in this fight. Fight like hell. You are in hell right now and as Winston Churchill said, When going through hell keep going.

    Get another opinion for your own peace of mind. Explore all the treatment options out there.

    If you don't already know about it, check out tnbcf.org- the triple negative breast cancer foundation.

    Bad things do happen and you are in the middle of it. But HOPE happens too.

    I am not asking you to become a pollyanna - I am just suggesting you don't close the door on the possibility of HOPE.

    There are so many new drug combos and treatments available now for TNs that women's lives are truly being saved and extended.

    Best of luck to you and your husband-

    No Surrender

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