Anyone with both TN and non TN tumours?

TracyAMac
TracyAMac Member Posts: 7
edited June 2014 in Triple-Negative Breast Cancer

I had two tumours in the same breast dx April 2010- one TN (with metaplastic features) and one  estrogen and progresterone positive tumour. Also had bone cancer 30 yrs ago at age 17 so unable to have more Adrymicyn as it is hard on the heart.  Had a mast. and 9 nodes removed (1 with isolated tumour cells); Just finished 6 rounds of Taxatere and Cytocan (sp?). Next step is hormone therapy for the non-TN tumour and am waiting for genetic testing results.  All makes for a complex treatment case and ineligible for many clinical trials.

 Tracy

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  • LRM216
    LRM216 Member Posts: 2,115
    edited October 2010

    Tracy -

    Geez, this disease is just a real doozy isn't it?  I had no idea that could even happen!  I knew if it came back, it could change receptors, but I had no idea two tumors in one breast could be negative and positive.  Complex treatment, for sure.

    Just wanted to say welcome and nice to meet you.

    Linda

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  • TracyAMac
    TracyAMac Member Posts: 7
    edited October 2010

    Thanks for your note Linda. Having two different tumours made it difficult to fill out the profile survery on this site!   I found the TN tumour myself (2.5cm) but was unaware of the smaller second tumour until the biopsies started.

    I see your dx was in 2009- hope your treatment is well behind you!

    Tracy

     

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  • thenewme
    thenewme Member Posts: 1,611
    edited October 2010

    Oh wow, Tracy!  I didn't know that could happen either! 

    Hopefully hormone therapy will be uneventful and successful for the ER/PR+part and chemo/rads for the TN tumor!  Geesh is right! 

    Hang in there -  how are you holding up after the chemo/rads?  Has your case been presented to a tumor board to get a consensus, especially since you seem to be a unique case, unfortunately!

    Best of luck!

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  • buyo
    buyo Member Posts: 12
    edited October 2010

     Hi Tracy!

     I also had two tumors in one breast, one triple negative and one that was er/pr positive. Also lots of DCIS. I had 4 rounds of dd A/C and 4 rounds of dd T. I then had a bilateral mastectomy. No rads or hormone therapy. The er/pr positive one was only grade 1.

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  • daffodil45
    daffodil45 Member Posts: 76
    edited October 2010

    Tracy,

    We are twins, except for the bone cancer. I am 2 years out. I cannot tolerate hormonal treatment, so am still on Zometa for 3 more years. Please feel free to PM (private message) me, and ask me anything....anything at all. Our cases truly are complex.... I am watched very very closely by my oncologist, and will be for the rest of my life. I am happy to share my story with you. Knowledge is power!

    Christl

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  • TracyAMac
    TracyAMac Member Posts: 7
    edited October 2010

    Thanks "newme" for your kind words. Fortunately I am not having  rads. as my margins were clear and only one node had isolated tumour cells and was deemed insignifcant.

     Buyo and Christl - I am so glad to find people in the same situation!!! (though sorry you had to go through it!!)  If i was a bit older, my onc. said he wouldn't bother with hormone therapy but since I am 47 and pre-menopasual it is recommended - will be tricky to figure out which drug - I understand tamoxofin is preferred for pre. men. women but it has a higher risk of leg blood clots which is an issue for me give my prior surgery for bone cancer. If my genetic testing shows I am +ve for the BRAC gene, then I will be having my ovaries+ out, so then could consider alternatives to Tamoxofin.

    Tracy 

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  • thenewme
    thenewme Member Posts: 1,611
    edited October 2010

    Hi Tracy, Buyo, and Christl,

    I just watched the Discovery Channel special on "Triple Negative Breast Cancer -Get the Facts" that was posted on another thread.  One of the women profiled had both TN and non-TN tumors and I thought of you ladies.  Have you seen it?  I thought it was very well done and did a great job of balancing the negatives with positives of TNBC.

    http://link.brightcove.com/services/player/bcpid645226277001  

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  • TracyAMac
    TracyAMac Member Posts: 7
    edited October 2010

    Hi The Newme

     I just watched the Discovery piece on TN this morning - I agree it was very well done and I was surprised but felt less alone seeing the woman who had both TN and non TN tumours though I think they were in different breasts in her case. Mine were in the same breast (oddly enough) so I only had a mast. on one side. If I test positve for the BRAC gene I might have the other breast removed but I think my priority will be taking the  ovaries+ out as ovarian cancer is much more diffilut to detect and treat.

    Tracy in Toronto

    I

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  • thenewme
    thenewme Member Posts: 1,611
    edited October 2010

    Hi Tracy,

    Here's to negative BRCA results for you!  It sounds like you've been through so much already.  Best of luck to you - let us know how it goes.

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  • DelrayBeach
    DelrayBeach Member Posts: 11
    edited November 2010

     I had bilateral BC 9/09, at age 53. Triple neg in left breast(ductal), hormone positive right breast(lobular). Onc said they would treat the worst--triple neg--and that would also treat the hormone positive. My BRCA 1 &2 results were indeterminate. No family history of breast  or ovarian cancer.  Still don't understand how something can be indeterminate??  Anyway, I had bilat MX, with immediate recon, tissue expanders.  Dose dense chemo AC(4) and taxol(4) for triple neg, on Femara for 5 years because  of the hormone positive cancer. Implant exchange surgery 5/5/10. Unfortunately, I had bilateral capsular contracture of impants and just had revsion surgery 11/1/10. Will probably have total hysterectomy in near future.  Want  to make sure the new girls are "keepers" before imbarking on another surgery......I too saw the Discovery program and was oddly comforted to know there  was another woman out there with both postive and negative cancers. And  now I've found you warriors, I don't  feel like  such an anomaly anymore!  I don't post much. I'm more of a reader, but it really was because I wasn't sure what forum to post in!!!!  Hugs, strength and courage to you ladies.

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  • 2z54
    2z54 Member Posts: 261
    edited December 2010

    Hi DelrayBeach,

    I just read your post and wanted to let you know that I also had 2 diff. BCs; a 4cm TN in left and a very small <1cm er+ in right.  I was really lucky that the radiologist even found the one in the right on mammogram.  For me, bmx was a no brainer! 

    My genetic testing was negative, but kind of "indeterminate" too in that it said they just may not have my markers yet. 

    Hope the revision surgery went well, and that's the last of it!  I just got my fipples last summer, and don't even want to go back for tatoos at this point!  

    Sue

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  • Cinders57
    Cinders57 Member Posts: 5
    edited December 2010

    I was also diagnosed with triple negative tumor (3cm) and estrogen positive tumor (smaller than 1cm) in the same breast. Had a mastecomy on the one breast. Have had 4 A/C and one Taxol so far but had reactions after the Taxol. Was wondering if anyone else has had reactions? 5 days after the first Taxol treatment I couldn't breathe and couldn't swallow. Went to ER and they looked for blood clots in the lungs and also to see if a stroke or heart attack. Couldn't find anything so sent me home. They postponed my next treatment so it has been a month now - my oncologist still isn't sure what to do. Still having trouble breathing and my heart flip flops and beats fast all the time now.

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  • DelrayBeach
    DelrayBeach Member Posts: 11
    edited December 2010

    Hi Cinder57.  So sorry you had a bad reaction to Taxol.  I know I was given steroids and Benedryl right before the Taxol infusion to help prevent allergic reactions. I was  told if I was going to have an allerigc reaction it would be within the first 15-20 minutes after the Taxol infusion starts. In fact, my chemo nurse sat with me for  those first 15 minutes just to monitor. I lucked out and had no allergic reaction to any of my 4 sessions.  Did they give you steroids and Benedryl prior? Also, sometimes the A/C can cause heart problems. You should be evaluated. Talk to your Onc.

    Hugs.

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  • DelrayBeach
    DelrayBeach Member Posts: 11
    edited December 2010

    Hi 2z54. I agree.  The bilat mx was a no brainer for me as well!  From what I've read, gals like us(2 different pathologies in each breast) are rare. Maybe 1-2%. Not sure about the 2 different pathologies in the same breast. Must be even more rare?

    My Onc wasn't too concerned. They treated me for both so I got chemo for TN and then Femara for the hormone positive(for the next 5yrs). Was that your treatment protocol as well?

    Just saw my PS surgeon today and thinks early signs of capsular contracture AGAIN. Wants me to see PT for massage to help break up scar tissue. I just want to be able to turn the corner on BC and reconstruction. Guess it's just  not my time yet.....

    Congrats on your fipples! Take a deep breath and get those tats done. You are on the home stretch now.  It's your time!

    Hugs. 

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  • elliemay1030
    elliemay1030 Member Posts: 16
    edited December 2010

    Hi Tracy,

    I too have had cancer previously, about 25 years ago when I was 17, hodgkins lymphoma.  Was treated with surgery and radiation.  Now I have metaplastic BC with slightly ER+ and TN, and some squamous cells.  I have almost finished my chemo- one more to go and then on to more radiation (I hope, as I do have LN involvement).  I had a double mastectomy and am a mb of the facebook page for metaplastic BC- you might also go there for other women with this diagnosis.

    Colleen

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  • 2z54
    2z54 Member Posts: 261
    edited December 2010

    Delray,

    I got dose dense AC/T chemo for TN, too.  But, my onc wanted to start me on Arimidex for the ER+, and I wouldn't do it.  Back in my 30s (I'm 56 now), I had an ovary removed because of severe endometriosis and was put on Lupron for a few months, to get rid of any estrogen. It put me into immediate menopause and the SE were horrible for me; almost unbearable. Even though I'm in menopause for real now, I didn't want to risk going through that again.  It was a QOL issue.  I told my onc I would lose weight and exercise regularly and at my last appointment, she was OK with that.   I had lost 25 lbs from last Jan. through the summer, but have now put 8 lbs. back because I got a new ft job, and can't seem to get exercising as much as I should.  That's my 2011 resolution!

    Btw, I forgot to mention earlier that although my genetic testing was negative, all of the women on my father's side of the family (2 aunts and my grandmother) died of bc.  So, clearly for me, there IS a genetic link!  They just haven't found the marker yet. 

    As for not taking the Arimidex - I don't think the small ER+ bc would have, or will, kill me - or at least not anytime soon. Clearly the TN bc could have!  I've dramatically changed my diet (eat mostly organic, drink alkaline water and see a naturopath, regularly) and intend to lose more weight and keep it off.  And, I will always keep my fingers crossed!

    Wishing you and everyone @ BC.org a happy and healthy New Year!!

    Sue

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