Triple Negative with BRAC2 positive

Options
jfgafc
jfgafc Member Posts: 5
edited June 2014 in Triple-Negative Breast Cancer

HELP I was diagnoised 5 wks ago with TNBC and also BRAC2 positive. I have had a double mastectomy 3 wks ago! My tumor was only 6mm after biopsy only 1 mm remained. Pathology report says margins are clear but grade 3! My Dr does not think the benefits of chemo would out weigh the risks......I am going to DUKE for 2nd opinion this Weds.8th!!! Please let me know all your thoughts!!! I am scared beyond words!

· Share on FacebookShare on Twitter

Comments

  • Luah
    Luah Member Posts: 1,541
    edited May 2013

    Chemo is highly effective for TN because it is aggressive (nearly always grade 3). That said, some docs will forego chemo if the tumour is very, very small because the overall benefit may not outweigh  the risks. However, the fact that you are BRCA+ might complicate the issue I would think... as it's an additional risk factor.

    Good you got through the double Mx and the margins are clear - that's great news! Good too that you are seeking a second opinion. You want to be as informed as possible when making decisions. 

    Try not be too scared (although that's normal) -- there are oodles of us out here doing just fine years later - touch wood. 

    · Share on FacebookShare on Twitter
  • jfgafc
    jfgafc Member Posts: 5
    edited May 2013

    Luah, what would you do?

    · Share on FacebookShare on Twitter
  • Luah
    Luah Member Posts: 1,541
    edited May 2013

    I'd ask lots of questions of both doctors, maybe even consider a 3rd opinion if I still felt undecided. 

    Some possible questions:

    - What are my risks for recurrence, with small tumour, being TN and BRCA+? 

    - Would that risk be reduced by chemo, and if so, by how much? (docs use adjuvant online and cancermath.net is another site I've used)

    - What are the risks associated with chemo for me?

    - Are there other ways to medically reduce my risk (for example, radiation or, at some point, removal of ovaries?)

    - What would you recommend your wife/sister/daughter do, and why?

    When you have good information, you will know what's best. 

    · Share on FacebookShare on Twitter
  • jenjenl
    jenjenl Member Posts: 948
    edited May 2013

    I am also in CLT, NC and would recommend talking with Dr. Steven Limentani.  I am TN and BRCA1 +, he's one of the best for TN in CLT.  I had a 7mm tumor, UMX, 6 rounds of TAC and just started radiation.  He can be very blunt and not always warm and fuzzy but he knows his stuff.  Any questions let me know.  Jen

    · Share on FacebookShare on Twitter
  • jfgafc
    jfgafc Member Posts: 5
    edited May 2013

    Thank You so much, I am going to a Oncologist forum on Tues and then DUKE Weds. Would love to speak to you more, my email is jfgafc@aol.com

    · Share on FacebookShare on Twitter
  • jfgafc
    jfgafc Member Posts: 5
    edited May 2013

    Thank you very much I added questions to my list!!!!!

    · Share on FacebookShare on Twitter
  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited May 2013

    jfgafc - I'm brca2+ also.  I sent you a PM about this.  You can see in my profile what my treatment was and you can also see I got carboplatin at the end.  As I said in the PM, I think only Dana Farber and OHSU are doing this for women with brca BC.  Anecdotal evidence has shown that platin chemos are very effective for brca cancers.  They are doing clinical studies now.  I feel I got lucky to have found the rare MO who is willing to give this chemo now for brca patients, not waiting for the study results.  (It's not a difficult chemo to do, either.)

    http://jco.ascopubs.org/content/28/3/375.long

    · Share on FacebookShare on Twitter
  • jfgafc
    jfgafc Member Posts: 5
    edited May 2013

    Thank You I am going to take this information to my MO! :) Very Interesting!!!!

    · Share on FacebookShare on Twitter
  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited May 2013

    Here is another article that might be of interest.  

    http://breast-cancer-research.com/content/14/6/115

    These look like the trial numbers:

    BRCA trial (NCT00321633, NCT00532727) 

    Article suggests there should be no difference between brca1 and brca2

    · Share on FacebookShare on Twitter
  • jerripi14
    jerripi14 Member Posts: 7
    edited May 2013

    Hi,

      I also have the BRCA2 mutation. I had breast cancer 16 years ago and have it again-same breast but now it is a triple negative whereas last time it was not. I had a double mastectomy on 4/26 and am having reconstruction. My tumor was 1.1 cm, grade 2. I have to have chemo-I'm starting next week. Am having 4 treatments of taxotere and cytoxan. No radiation, because they cannot irradiate the same breast twice. One question I have for you is, did they get a sentinel node on you? If they did,and the node was negative, that is probably the reason your Dr. is not recomending chemo-plus your tumor is smaller than 1 cm, which is the cutoff size, according to my Dr. The Dr. could not get a node on me this time because of the radiation damage from last time and I just missed the size cutoff, so that is why I have to have the chemo.

    · Share on FacebookShare on Twitter
  • Debwarrior
    Debwarrior Member Posts: 72
    edited May 2013

    Hi Jerripi,



    Our stories are kind of similar. I had bc 15.5 years ago on the right and again recently on the right. This one is smaller at 6 mm. I'm BRCA1 positive so will be having bilateral mx after 12 weeks of carboplatin and taxol. Best of luck to you as well.



    Deb

    · Share on FacebookShare on Twitter

Categories