How will being Triple Negative affect surgery and treatment?

Options
JohnLeo
JohnLeo Member Posts: 10
edited June 2014 in Triple-Negative Breast Cancer

Hello.  My wife was just diagnosed with stage 1 IDC breast cancer.  The tumor has a low grade (1) and is about 7mm. She is 40 which is just about the same age her mom was when she died from breast cancer but has tested negative from BRCA.  She is also triple negative which we just found out is a more aggressive type.  We are in between doctor appointments and although I did some research, I still wanted to present two questions to this forum.

The breast surgeon recommended a lumpectomy followed by radiation.  Chemo is a possibility depending on the results after the surgery.  She also said if we were more comfortable with a mastectomy we could have that done.  She told us because my wife is tripe negative she could not have hormone treatments but did not really make it clear to us that this was a rarer, more agressive type of cancer.

So my first question is should the fact that she is triple negative affect whether she gets a lumptectomy or a mastectomy?

My second question has to do with chemo, which I read responds better to chemotherapy.  Should we insist she definitely get chemo, and should it be before or after the surgery?  The doctor said they would evaluate whether to have chemo after the surgery; is that wise or is that all right because the tumor is small and just grade 1?

Thanks in advance,

John

· Share on FacebookShare on Twitter

Comments

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    Hi JohnLeo,

    I'm sending you a private message.  Check your PMs.

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

    Hi, sorry to hear about your wife's diagnosis, it is a lot to absorb at the beginning.

    The answer to your first question is No. For more: http://www.breastcancer.org/symptoms/diagnosis/ask_expert/2008_07/question_20

    Your second question is a very valid one, but it needs to be put to her docs. The vast majority of TNs get chemo, as it is our only systemic weapon; those with very small tumours and uninvolved lymph nodes may get a "milder" form of it. A surgical pathology report is instrumental to deciding what (if any) chemo. On the other hand, chemo prior to surgery can let docs evaluate effectiveness as the tumour shrinks with each treatment. This is often done on larger tumours at more advanced stages. 

     Here are some other very good reosurces for TN: http://hormonenegative.blogspot.ca/   http://www.tnbcfoundation.org/

    Hope this helps.

    · Share on FacebookShare on Twitter
  • JohnLeo
    JohnLeo Member Posts: 10
    edited March 2013

    It seems like most people agree Chemo is the way to go and more, but not all people, think a double mastectomy is safest.  We did meet with a breast surgeon and are seeing the director of a breast cancer center near us soon for a second opinion.  These forums have definitely proved useful and we have whole new sets of questions to ask both surgeons about.

    Thank you everyone.  This is certainly a scary situation and every bit of information helps.

    · Share on FacebookShare on Twitter
  • gillyone
    gillyone Member Posts: 1,727
    edited March 2013

    Alny, there are many, many TNs who have a lumpectomy . It is not unusual at all. Whether TN or not, lumpectomy plus rads equal mastectomy in terms of prognosis.

    · Share on FacebookShare on Twitter
  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    Let's also remember some things why surgeons recommend bmx, mx, or even lumpectomy. Each patient is different.

    We have things such as:  Patient's current health / Patient's family background / Patient's genetic correlation / Patient's age / Tumor Size / Tumor Location / Evaluation of Additional Information from Both Breasts / Results of Pathology, including status of Nodes and Lymphatic System / Results of Any Additional Tests Performed 

    * Perhaps a particular individual has a genetic mutation or a familial connection - that surgeon might recommend a mx or bmx

    * Perhaps the tumor is very close to the edge of the chest wall, and therefore a surgeon recommends chemo before surgery, to better control the excision of the tumor and reduce the risk of stray cells entering the body

    * Perhaps the individual has micromets, therefore they may elect to do chemo first, prior to surgery to gauge the effectiveness

    * Perhaps the tumor is growing so fast, that they want to remove it immediately to stay ahead of it

    * Perhaps someone's pathology report is very clean, and they want to remove tumor, the current and size is acceptable, and then they recommend chemo

    There are just too many variables.  When someone tells us that their doctor recommended X, Y or Z without knowing the reasons behind that recommendation, it is really hard to compare.

    I know of a 26-year survivor who had a lumpectomy.  Also, I've known of people with a bmx who had a recurrence in 6 months.  It really is dependant on so many variables, that you really have to understand what your medical team is suggesting and the reasons why behind it.  It helps to know what the reasons why behind it are, and also, you can ask for them to back up their claims.  They will be able to pull the study, the report, whatever it is to show you where they are getting their data from.

    Also, in the NCCN Physician Guidelines in October 2012, protocols were very very tightly correspondent to the exact characteristics of each patient.  So no one treatment was a given in every condition.  It was  very very individualized based on many findings from the pathology report and on that particular patient.

    · Share on FacebookShare on Twitter
  • gillyone
    gillyone Member Posts: 1,727
    edited March 2013

    Alny you can't have it both ways, saying you've never heard of anyone having a lumpectomy when TN and then when I say this isn't so, you agree that it does happen. Just because you decided mastectomy was the right choice for you, it doesnt mean lumpectomies are not the right choice for others. You can tell us what you chose and your reasons why, but don't tell others what you would recommend. We are here to offer support not medical advice.

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

    It's always interesting to me that many people view Mx as "more aggressive." Perhaps this is because of the cosmetic outcome. However, my BS doesn't regard surgical options in those terms. Her recommendations are based on what she considers proven "effective" treatment for the particular characteristics a patient presents with. Debra has provided a very thorough synopsis of what a skilled and experienced BS may look at.

    Almy, you mentioned "my patients." Are you a medical doctor? If so, I am floored that you would state that you have never heard of lumpectomy in TN. And if not, I would respectfully ask that you clarify and/or retract information that others would find misleading.   

    · Share on FacebookShare on Twitter
  • PeggySull
    PeggySull Member Posts: 686
    edited March 2013

    John,



    I had no choice about having a mastectomy because my tnbc was in several areas of the breast that were distant from one another.



    I had chemo first and will soon have a bilateral mastectomy. My surgeon told me that although having a mastectomy in my (now) healthy breast would reduce my chances of getting cancer in that breast greatly, it would NOT affect my chances of long-term survival. This is because tnbc s often have recurrences in liver, lungs, bone and brain, especially within the first five years following treatment, not necessarily in the other breast.



    I still choose to have the prophylactic mastectomy. It's a decision that feels right to me, given that I'm by nature a worrier, and this breast is one less worry. The important thing for your wife is that she make informed decisions based on not only her disease but her knowledge of herself.



    One benefit of having chemo first is that it gives you more time to research and think about both of these variables. I think that had I had the option of a lumpectomy, my mind would have changed during chemo.



    Anyway, I hope some of this helps.



    Peggy

    · Share on FacebookShare on Twitter
  • adagio
    adagio Member Posts: 982
    edited March 2013

    almy - I am triple negative and had a lumpectomy in September 2012 - it was never once suggested to me to have a mastectomy. I have had chemo and am about to have radiation. Your view on TNs never having a lumpectomy is a completely new concept to me. Now I am very curious to know how many women with triple negative have had a lumpectomy. Any others out there besides myself?

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

    Adagio: There are many, many of us out here who had Lx and are doing fine! Please don't let alny's uninformed comments lead you to second-guess the treatment you received. 

    Alny: Just what information from the medical community would you like to share? Your opinions? Anecdotes? Until and unless you provide credible, medical evidence to support your claim that Mx is "generally recommended for TN," I would ask you to stop sharing misinformation that creates unnecessary anxiety.  

    It is my opinion that each woman should make an informed surgical decision, that feels right to her, based on sound medical evaluation of her condition and accepted research-based protocols.

    To counter any anxiety that this thread has unnecessarily generated, I recommend the following reads (as well as the links I posted earlier):     

    http://www.cancer.gov/cancertopics/pdq/treatment/breast/Patient/page8

    http://thecancermd.com/2011/08/10/lumpectomy-radiation-better-than-mastectomy-for-triple-negative-breast-cancer/

    http://foodforbreastcancer.com/news/lumpectomy-is-not-inferior-to-mastectomy-for-appropriately-selected-triple-negative-patients

    http://ww5.komen.org/Content.aspx?id=19327354168

    · Share on FacebookShare on Twitter
  • Ann360
    Ann360 Member Posts: 15
    edited March 2013

    Like Adagio (lovely name!) I had a lumpectomy in September 2012. Mastectomy was never mentioned; everyone just assumed lumpectomy + radiation. I had T+C chemo (4 sessions) ending on Jan 16, and started radiation 2 weeks later. I will finish on March 22. I had a second opinion at Seattle Cancer Care Alliance; they echoed what the local people recommended, so I felt comfortable with what we did. 

    Ann -- TN, 1.5 cm lump, IDC, clear lumph nodes and margins, Stage 1, Grade 3

    · Share on FacebookShare on Twitter
  • Mumtobe
    Mumtobe Member Posts: 159
    edited March 2013

    Almy - have you changed your user name to logoff? Anywho initially on diagnosis I was told my by BS that I would be having a mx. I had neoadjuvant chemo and because my lump disappeared after the first bout of AC it was then put to me that I had the option of a lumpectomy. I declined but it was my personal choice. There are oodles of ladies on this forum alone who have had lx rather than mx and studies suggest very little difference in outcome/prognosis.

    · Share on FacebookShare on Twitter
  • gillyone
    gillyone Member Posts: 1,727
    edited March 2013

    Mum - Almy did change her name to logoff and apparently has logged off permanently. She explained on the calling all TNs thread why.

    · Share on FacebookShare on Twitter
  • asj
    asj Member Posts: 2
    edited May 2013

    I had a lumpectomy and full radical dissection after 6 rounds of chemo (TAC), and am doing 6 wks of radiation now.  My surgeon and medical oncologists both suggested the lumpectomy over mx, said that survival and recourrence as long as you do rads was no different.  

    ______________________________________________________________________________________________________________

    DX-11/2012, IDC, Stage IIIb, grade 3, triple negative

    Surgery 4/11, after neoajuvent chemo, 6 wks rads. 

    · Share on FacebookShare on Twitter

Categories