Tumor gone after neo-adjuvant chemo

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

I had 5 neo-adjuvant chemos (mostly ACT all together) and the tumor has disappeared completely as of the last chemo 11/18/10. I just had a cancer tumor marker 15.3 test that came back within normal ranges. The oncologist wants me to have radiation and possibly surgery "just in case" but I am afraid of lymphedema and have heard of recurrence even after double mastectomies and radiation. Is there anyone out there who has foregone surgery and radiation with positive effects?

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  • GrandHillMom
    GrandHillMom Member Posts: 179
    edited February 2011

    You don't really know that the tumor has disappeared completely.  I got that same report after ACT--was it from an MRI?  I had the double mastectomy and the pathology report showed that there still was some cancer present.

     Yes, I also had radiation and now am Stage IV, so perhaps the mastectomy and radiation were  a waste of time..  On the other hand, maybe they kept me alive the four years between my initial diagnosis and my Stage IV diagnosis. 

    I had some lymphedema, but good physical therapy took care of it. 

    I'm not trying to give you gloom and doom.  I just believe you should do all you can to fight this disease. 

    Best of luck to you.

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited February 2011

    My tumor was gone after chemo, but my breast specialist said she wished could call me cured.  But she said that in ordered to be sure it was completely gone was to do mastectomy & to have radiation.  I decided to have a double mastectomy. It was a good decision for me as my non-bc breast had precancer cells & bc side had 5 positive nodes.  I have now made it 2 years NED.  I do have some LE in the arm on the bc side but I went to therapy for it and it is undercontrol.  I wouldn't let the risk of LE stop me from doing recommended treatment, but it's your decision. You need to make the best decision for you.  NJ

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  • NannaBaby
    NannaBaby Member Posts: 510
    edited February 2011

    MRI can miss cancer.  My mass was 1.5 cm as per MRI (after neo-adjuvant chemo).  Post surgery pathology report claims I had a 4.5 cm multifocal area. So, the MRI missed the smaller parts.

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited February 2011

    My friend who had neo chemo with me had the mri after chemo that showed no cancer, then at surgery they found 3 positive nodes.  Not to scare you, but i would for sure have the surgery :)

    Laura

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  • FATPAT
    FATPAT Member Posts: 3
    edited February 2011

    Wow, thanks to everyone for their input. I really appreciate your taking the time to share. My heart goes out to those of you who are going through continuing struggles. I had a surgeon friend tell me that chemo would screw up PET results and could create a false positive or false negative. He thought the cancer marker 15.3 every two months for a couple of years would be sufficient. I haven't found anyone yet who has foregone surgery/radiation. We are people of faith but there is a fine line between faith and foolishness. To answer GrandHillMom's question, I had a mammogram plus ultrasounds over the entire abdominal area.

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  • fightformykids
    fightformykids Member Posts: 4
    edited March 2011

    I am having my third a/c next week. my tumor is almost 6cm after growing so fast! the last ultrasound showed that it was about 50% 'dead' but i am still scared because it doesn't seem to have shrunk.i read that some tn's don't respond.:(

    anyone have knowledge about how long it should take to shrink? i will do 4 ac dose dense and 4 taxol every 2 week. 

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  • Lynn18
    Lynn18 Member Posts: 416
    edited March 2011

    fightformykids:  If I remember right, my onc said at the end of my second cycle of AC, I should feel a difference.  It can be difficult to determine how you are responding.   I feel like ultrasounds aren't that accurate.  Could you ask your doctor for a MRI?  I had two during my chemotherapy; I feel the MRI shows more accurately what is happening, although it is not perfect.  You can pm me if you have questions, I finished neo. chemo back in October.

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011
    hmmm... My tumor shrunk from being nearly 4 cm to less than 6 mm at surgery - but they wouldn't have known that if they didn't do surgery! The tumor had shrunk so much that it was no longer palpable and the mammogram and US came back negative because it was so small! Fatpat - we each make our own decisions based on the information we have available and what we are comfortable with. There is no way that I would have been comfortable leaving even a remnant of a tumor in there! Once chemo is stopped - if all the the tumor is really NOT dead - the possibility of just one cancer cell multiplying again and forming yet another tumor was not something that I was willing to take a chance on. I had a unilateral mastectomy at the time and still had rads as well. My goal was to live as long as possible, preferably without a recurrance. You are the only one that can make this decision... but at a minimum, I would probably still do a lumpectomy. I am a person of faith as well... but in my case, I had faith that God put good doctors in my path to help me through this. Whatever decision you make will be the right one for YOU!
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  • lilylady
    lilylady Member Posts: 1,079
    edited March 2011

      I am headed for neoadjuvant chemo-how do they determine what drugs to us in a TN? I have been looking at as many TNs as I can find to see what they got and for how long. I have my first onc appt Wednesday and want to be as ready as I can when he lays it out for me. I am also expecting him to dose dense? Do you get many good days if you go that route?

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited March 2011

    Hi there!

    My PS was just telling me about a woman who had foregone surgery because her tumor was gone after chemo.  A year later, she was back with a massive (his words) reoccurance in the same spot.  Chemo is more effective on faster-growing, aggressive cancers because chemo attacks the fast-growing cells. So while it is great that your tumor has responded so well, it is also indicative of how aggressive the cancer is.  I am also having a great response to chemo (although the tumor is not yet gone), but I am having a UNI MX and nodes removed to be sure.  Good luck!

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  • Suze35
    Suze35 Member Posts: 1,045
    edited March 2011

    lilylady - given your stats, I would expect you will be offered AC+T dose dense for a total of 8 cycles every two weeks, or TAC, which is usually six cycles every three weeks. They are all the same drugs - Adriamycin, Cytoxin, and Taxol, but with the first option, they are split up, and the second given all together. My doctor agreed to be more aggressive with me, and added Carboplatin to my Taxol rounds, and I had a great response.



    Some variables exist. You can do AC dose dense x 4, then 12 weekly Taxol. Some studies have shown an increased benefit from this, and the Taxol rounds are easier on your body.



    Also, new studies have shown an increased benefit from doing the Taxol before the AC, and it was not insignificant. If I were just starting treatment, I would be pushing my doctor to switch the order.



    I did okay with side effects. I just mostly felt like crap, no mouth sores, no neuropathy. I did need Neupogen my last 5 weeks of chemo.



    Good luck to you - and join us on the Calling all TN thread, the women there have lots of advice about chemo.

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  • lilylady
    lilylady Member Posts: 1,079
    edited March 2011

    Suze35, Since i just found out I was TN I have just started thru their stuff. I had not found that about the Tacol first. Do you remember where you might have seen that? I feel like I am cramming for the biggest exam of my life-and Ireally want to ace it.

    Onc appt is Weds-have my notes-tomorrow I am going to try to condense and get some order to it.

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  • Suze35
    Suze35 Member Posts: 1,045
    edited March 2011

    Lilylady, I just bumped the thread I saw it in recently, "TNBC to start chemo next week". Hope that helps!

    class='post_sig'>DD AC x 4, 12 Taxol+Carboplatin, 4 nodes positive at biopsy
    Diagnosis: 9/17/2010, IDC, 4cm, Stage IIIa, Grade 3, ER-/PR-, HER2-
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  • beccad
    beccad Member Posts: 326
    edited March 2011

    lililady- I am also TN.  I just completed my chemo on Feb. 7.  I had the chemo cocktail of taxotere, adriamycin, and cytoxan (TAC) X6, once every 3 weeks.  I had  BMX w/TE's last week. I do not have my final path report yet, but I do know that I had very good results from chemo.  The PET scan that I had following the final chemo one of the two lymph nodes was not visible and the breast mass was considerably smaller. 

    Oh, I did had the Neulasta shot after every  chemo.  If you have Neulasta try to remember to take Claratin and possibly Advil the day before, and a couple of days after the shot.  It does seem to help with the joint pain,

    Beccad 

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  • Meggy
    Meggy Member Posts: 530
    edited April 2011

    My oncologists at Stanford Breast Cancer Center don't even test for markers.  I was told it was too unreliable. 

    My neoadjuvant chemo did get rid of all of the cancer in my breast but I still had cancer in one node.  Glad that node is not in there now.  Also learning I didnt get pathological complete response (which still does not guarantee no recurrance) is what allowed me to decide and get extra chemo after surgery.

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  • angiebaby1
    angiebaby1 Member Posts: 6
    edited February 2012

    http://www.breastcancer.org/treatment/surgery/reconstruction/ask_expert/2007_05/question_12.jsp

    Good luck to everyone...

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  • TracyT360
    TracyT360 Member Posts: 2
    edited January 2014

    thank you for sharing.you say the MRI showed in only one by 1 tart  I am curious whyyou decided to have a double mastectomy?  I see a lot of people making the decision even though BC was shown omg 

    his decision 

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