New and have question.

I just found out I have TNBC, BRCA neg, 1.3cm, grade 3.  No lymph node involvement that they can feel.  I went and saw my oncologist today, he said i'm in a grey area where there is no right or wrong way.  He said I could have a lumpectomy with chemo and radiation after or a mastectomy with chemo after or chemo before.  I have no clue which would be better.  He said the reoccurrence rate for either one of  them is the same.  I'm afraid if I get a lumpectomy it will come back in one or the other of my breasts.  I go to another oncologist for a second opinion tomorrow.  Any help from anyone would be very much appreciated right now.  Thanks!!

Yes grey area is very uncomfortable for me to hear.  I will have reconstruction, don't know if any lymph nodes are involved yet or not.  I had my mind made up after the diagnosis that I would do a mastectomy and chemo but when I left the Dr's office I was more confused then ever.  Its nice to be able to talk to other people with TNBC.  Thank you!!

EDIT: I just re-read and saw that neoadjuvant is one of your options! Sorry I missed that. :)

I was leaning towards the mastectomy.  I got a call from the Dr. I was going to see tomorrow for a 2nd opinion but he has been on vacation and the flights out have been cancelled, so he may not make it back to see me tomorrow.  I hate to wait since this is such an aggressive cancer.

sunrise

Lots of good advice here!  Sorry for your diagnosis.  I just passed one year since my diagnosis, and I promise, it gets significantly easier as time passes.  The first month was a complete whirlwind for me, but it rapidly calmed down after that.

It's important to note that the reason there's a grey area is that study after study has proven that some of these things are truly equivalent in terms of survival.  The two main choices it seems you need to make are:

1.  Neoadjuvant or Adjuvant chemo (chemo before or chemo after surgery), and

2.  Lumpectomy with radiation or mastectomy.

My understanding is that there is no proof that neoadjuvant or advjuant chemo is better in terms of survival.  However, I think there are a few pluses of neoadjuvant.  Sounds like you are familiar:  opportunity to shrink or even eradicate the tumor so that if you do have a lumpectomy, the surgery is made even more minor; the knowledge of whether the chemo was effective or not (this is a HUGE plus if you are lucky and have a pCR as it comes with loads of reassurance and positivity.  Speaking as someone who ended up with residual cancer, it can be a little less clear--the downside for me has been the crushing knowledge that the chemo did not get rid of all of the cancer.  However, I am still grateful for that knowledge, because there are some "bonus" treatment options at that point, that will hopefully improve outcomes, so I'm glad I can take advantage of that.  If I had my chemo adjuvantly, I wouldn't have known it was ineffective, and I wouldn't be taking my bonus chemo now that has the possibility of saving my life).  Other advantages include the possibility of participating in neoadjuvant clinical trials, etc.  It seems to me that more than half of the TNBC women who have been diagnosed recently pursue neoadjuvant (I think there has been a trend in this direction.....people who were diagnosed even just 3 years ago seem less likely to have done neoadjuvant).

As for the lumpectomy with radiation vs. mastectomy choice, clearly this is another personal decision, as ALL studies have shown these to be equivalent (for BRCA negatives).  So you shouldn't worry that you are being "less aggressive" if you go the lumpectomy route.  They are equal.  The radiation is proven to mop up leftover cancer, and you can feel good making either choice, knowing they have equal odds. (Obviously, if you have a concern about new primary cancers occurring, esp if you are BRCA positive, that's a different story).  There are reasons why for some people mastectomy definitely makes sense, even beyond the BRCA+s:  if the size of your tumor is large relative to the size of your breast, you are unlikely to get a good cosmetic result with lumpectomy.  If your tumor is multi-focal, lumpectomy may not work out.  If your tumor is located near the nipple or another awkward location, lumpectomy may not work out.  I'm sure I'm forgetting other circumstances where your doctors would advise mastectomy.  But if none of those are factors for you, you should feel free to make the choice you prefer, without worrying that one was a "smarter" choice.  Mastectomy is a major surgery, and you will see if you read these boards that many people have a host of surgical complications (and/or complain about long-term issues such as numbness, body image issues, etc).  Certainly the recovery is much more extensive.  But for some people, they just can't get past the mental thought that they "want the breasts gone", so it may absolutely be worth it if it provides peace of mind, even if the studies indicate that you should have the same peace of mind with lumpectomy.  I'm sure if we asked everyone about their choices, we could come up with a long list of pros/cons for each choice, but you can feel safe that if the doctors say your circumstance doesn't require one or the other, that either is an appropriate choice. 

Good luck with your decisions.  Once you have a plan in place, you will feel SO much better.

Tulips

Tulips has given you some great advice and information.  The period between diagnosis and treatment is the most overwhelming time as you've just gotten this terrible news and you have all this stuff being thrown at you and you are trying to navigate through the world of cancer and treatment decisions.  It's amazing we can even function, much less make important decisions regarding our treatment.  Good luck!

Donna

For sure this isn't an easy decision to make. As many have pointed out, some of the decisions are personal. For me, given that mine was not detectable by mammo, MRI or CT, and the large size of the tumour at the start,  it is a double mastectomy vs single. I am not comfortable going on with life after the surgery with 1 breast knowing how fast it grew in my left breast and that no diagnostic imaging could 'see' it despite it being the size of a baseball. You want to know that you've thrown everything at the TNBC at the start that you're comfortable with so that you don't wonder down the road 'well, if only I had.......". Listen to what the oncologist is saying, consider another opinion and then talk with those who are close to you that will support you. 

We are here to support you as best we can, in whatever we can too. Much strength,

The other Jackie

When I was dx in 09, neoadjuvant was mostly used for larger tumors, nodal involvement.  For early stage, surgery was usually given first, then chemo.  I've seen the trend the past few years towards neoadjuvant in all stages.  The advantage would be to know that the chemo was working and the tumor shrank or was undetectable.  The one disadvantage would be the chemo wasn't working on the tumor and it grows or spreads.  In that case, they could try a different chemo or proceed with surgery.  Maybe one question to ask your oncologist is if they know for TNBC patients receiving neoadjuvant chemo, what percentage did not respond and the tumor grew?  I'd be curious to know that percentage.

Donna

Triple negative breast cancer survivors are also more likely to develop new tumors in the opposite breast (contralateral breast cancer).>