what's my chances now?

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vickilou50
vickilou50 Member Posts: 2

Hi to all,  this is my first post....I was diagnosed in July with invasive ductal cancer in my left breast and also am triple negative....I finished 6 rounds of ACT the week before thanksgiving and had a left mastectomy last week with lymph node dissection.......anyway the pathology doesn't sound to great to me and I was hoping for some feedback from others of you with the same dx.  The report said the signs of the large tumor were gone (good part) but there was 'cancer cells throughout the breast tissue, and there were 13 lymph nodes taken and all thirteen were positive as well..........I am suppose to start 5 day a week radiation next, but now I am so scared that this cancer is growing so fast not responding as well as hoped for........I would love to hear of others out there that faced this as well with some turn around with their disease........or at least slowing it down......I appreciate any responses,  thanks to you all,     Vickie    (my staging was 3c at the start of all this)

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  • bak94
    bak94 Member Posts: 1,846
    edited December 2011

    Vickie-I think the radiation will help clean up any cells left. Has your doc mentioned more chemo after rads? I think sometimes they give more chemo after if there are still cancer cells left. Did the nodes have alot of cancer left in them or just a little? My mo was going to continue me on avastin, but I had a good response so I don't think he is going to recommend that, plus I may not be able to have avastin because of the whole fda thing. I know there are several woman in your situation on these boards, so I hope they stop by and give you some better answers than I did!

  • Meggy
    Meggy Member Posts: 530
    edited December 2011

    Hi sister, I wonder whether more chemo is in order....can you get a second opinion from a major breast cancer center?  I think they will let you send your file and give you an opinion.  I just don't know which is better, rads first or just more chemo after surgery.  That is what they did with me...if more chemo...it's going after cancer anywhere in your body.  Rads just the local stuff....but I think they also sometimes say there is a window for using rads to work....I would really try to get an expert to chime in on your case.  I think you need to know what an oncologist who really specializes in triple negative would do.  There is a tumor board at Stanford that looked at my case before I was their patient but that was before chemo and surgery.  Dr. Melinda Telli at Stanford is not my doctor but I believe I heard that she is specifically intersted in Triple negative. 

    Get some expert opinions....I hope they will help you do what is best in your situation.

  • gporgie
    gporgie Member Posts: 4
    edited January 2012

    Hi Vickilou50,

     This is my first post too and I was going to ask a few things but I feel I am quite similar to you so I shall jump right in here if thats OK.      I was diagnosed inMarch 2011 with an invasive non-ductal 7cm tumour in my left breast and my oncologist has described my as "essentially a triple Neg", I had five doses of TC untill end of July , kept my head during this time after deciding that the TC had arrested it myself. In August I had a masectomy and 21 nodes removed, the results were that my tumour had shrunk but not very much and 11 of the 21 nodes were positive.  After the Op I had 3 months of CMF with five weeks of Radiation (Zapping I fondly call it) and took my final Chemo tablets yesterday...... What a year ?? ..... I guess we cant know our chances and all we can do is educate ourselves about the possible treatments and live in the day!   I need to read up on the HER and Progesterone responses but I am essentially a Triple Negative and would like to know what are the treatment options after the chemo is completed.... I think the big thing that has helped me stay upbeat about this sordid business is knowing that worrying about it is only going to mess my head up .    One bit of advice given to me is to take this treatment in rounds : R1-the TC: R2 - The Operation: R3 - The Chemo and Radiation Combination and now I move onward to changing my lifestyle and staying healthy . 

     Hope this helps 

  • ma111
    ma111 Member Posts: 1,376
    edited January 2012

    Vickilou,

    So sorry, but glad you found us here. There are a lot of really good people that will help you out.

    I am one that like to do my own research so I will provide you with some web sites. http://www.cancer.gov/cancertopics/types/breast   http://www.nlm.nih.gov/medlineplus/breastcancer.html

    Radiation did a lot for the nodes that were not rescectable when I had surgery.

    Gporgie, Glad you chimed in and welcome. ER- is not as easy to treat as ER+ as things like Tamoxifon don't work. Neither do some of the chemo regimens. Having over 10 nodes positive is not good. There are a lot of us in the same boat here. Post often and ask all the question you have. Wev'e been there and can answer it from a patient point of view. This site also has a lot of good information. Use the resources above to learn more. It will give you something to do on those sleepless nights.

    I hope both of you have called your docs for an antiaxiety medication like Ativan to help out some. It should come with the dx of that ugly C thing.

    Best wishes to both of you.

  • christina1961
    christina1961 Member Posts: 736
    edited January 2012

    Vicki,

    Was your cancer invasive ductal or inflammatory? I had invasive ductal.  I had TAC x 6 and my tumor shrank some but not much and I had 2 positive nodes. My remaining cancer burden index was 3.2 which is high for recurrence (they measure the cellularity of the remaining tumor and add the length of the largest lymph nodes & include some other info to come up with the RCB.).  After receiving this bad news, I went to two different oncolcogists, both of them considered specialists in TNBC, and neither one would give me additional chemo outside of a trial.  Both  strongly encouraged me to go into a trial for additional chemo, however.

    There are several trials for those who have had less than a complete response to the neoadjuvant chemo.  Go to ClinicalTrials.gov (I tried to copy and paste but couldn't get it to work) - the trial I am in is NCT01401959 (Trial of Eribulin in Patients Who Do Not Achieve Pathologic Complete Response Following Neoadjuvant Chemotherapy.   Another trial (not sure of the status because it has Avastin in it) - and this one is randomized, you may not get the treatment arm (that is why I decided not to do this one): NCT00925652 (Bevacizumab, Metronomic Chemotherapy (CM), Diet & Exercise After Preoperative Chemotherapy for Breast Cancer (ABCDE). I know there are at least two other studies of chemotherapy following neoadjuvant chemo- I could not find the links but one is out of Brown University and has locations in Rhode Island and New Mexico.  There is one out of Indiana (Hoosier Group?)  with a Parp inhibitor and cisplatin I believe..  The trial I am in will let you do the radiation along with the chemo - and there is a cut off date following surgery - I think you have to start within 84 days (but not sure about that.)  There are locations across the US except it doesn't look like there is anything west of Nebraska and Texas for the eribulin trial - don't know where you are located.

    Sending you support and good wishes and if you have any questions about the trial or anything else, please PM me. I'm glad I am doing this trial.

    Christina

  • adgirl5
    adgirl5 Member Posts: 81
    edited May 2012

    I agree with with Christina and ma111. 

    I was all set to have my onc refer me into the Hoosier Group Trial. And, as a BRCA positive hope to get into the ParpI arm.  Your residual must be at least 2 cm total.. nodes included.  There are multi-locations.. hopefully one near you.  I think it's very worthwhile even if you have to travel.. if at all possible.  The other chemo drug is Cisplatin by infusion x 4.  You get Cisplatin no matter what, so there's no placebo involved.  The Parp is in pill form if you get into that arm of the trial.

    Look up Hoosier Oncology Group Trial.  Don't let the BRCA1+/2+ throw you.  You don't have to be BRCA positive to meet the criteria as I understand.

    I didn't qualify.. I got very lucky I guess.  What I felt left of my very palpable small mass was scar tissue of a dead tumor bed. Amen.

    This trial is SO worth looking into, IMHO.  Wishing you the VERY BEST!  Diet and exercise lifestyle changes make a difference too.  Look into the book  "The Anti Cancer" by David Servan-Schreiber.  Also look into the Edge Cam Protocol. 

    AG5

  • christina1961
    christina1961 Member Posts: 736
    edited May 2012

    Just wanted to say that the eribulin trial protocol has changed since the time I entered it.  Now they want patients that have not had radiation first - if anyone is interested in this trial, please check the protocol to see what the requirements are beforehand. 

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