Plse help am I stage 4?

Like you I was told I was unique case dx at 29 with triple negative stage IV breast cancer and BRAC 1 positive, I have a cousin and aunt with the same diagnosis.  My cousins all had the test and one of them was positive for the BRAC 1 gene and was told to get a double mastectomy because it would significantly decrease her chance of getting breast cancer.

Did they due a biopsy of your liver? I would definitely get a second opinion from a ONC that has dealt with triple negative/BRAC positive patients.  My doctors actually recommended just taking the one breast off and I made them take both of em off. 

I am currently NED for a little over 18 months. 

HI Ester Lou - I just wanted to check in and see how you are doing. I am also dealing with different doctors having different opinions and if is very hard.  I am so sorry that you are going through this - It sound very scary and you have the right to know what you are dealing with. I would totally support you getting another opinion from a well established doctor at a leading cancer center to help you figure this out.  My thoughts and prayers are with you!

Stichyphish, with your recurrence with metastases to the liver, are they able to get that out of there or do you have to live with it spreading? I am newly diagnosed but mine is over 8 cm, so the chances of it being in the lymph nodes is large. I have a friend who has bladder cancer that has metastasized and they are not able to do anything for him anymore surgically. I just wonder at what point they make that decision. 

I agree on the 2nd opinion because I don't like how the doctors in this case are not being totally clear and forthright with their information.  

Hi J-Bug,

Sorry it took me so long to respond.  I should check this board more often!  Surgery is not an option for me.  I don't think I've ever found out why.  I think it's because I have one large tumor near a major blood vessel and multiple lesions on another lobe.  I am going through chemo now (I'm on my 3rd different drug), so I don't necessarily have to 'live with it spreading'.  The goal is to use chemo to shrink the tumor or to get it to stop growing.  Since I am also ER+, I can use hormonal treatments once the tumor is stable.

 Wow, how exceptionally confusing.  At this moment no one can say if that spot was cancer or not. 

How do you feel about having bilateral MX?  If it would give you more peace of mind, then I would do it.  On the other hand, considering everything, you will be having frequent scans to see what is going on with your whole body.  If something comes up, they willl quickly find it.  It seems unlikely that a breast cancer will turn up and go to an advanced stage before follow up finds it.

So, get a few opinions from some top docs, but you could try doing frequent scans of your whole body and if after a decent interval, like 18-24 months they find nothing, that might mean your liver "spot" was just nothing and bilateral MX might be just the thing to do for further prevention.  Good luck with your case and congrats on your great chemo response!!