My mother New DX 09/14 lots of questions

Hello!  You are asking some very intelligent questions.  Can you get a second opinion from an NCCN facility?  There is a grey area regarding chemo for small tumors.  I believe anything larger than 5 mm, chemo is recommended.  TNBC is more likely to spread through the blood stream so being in the vascular area might be a concern.  How would your mother feel if she didn't do chemo and found out it had spread?  Would she regret having chemo?  Even if we receive chemo, there are no guarantees that it got it all or that there are some microscopic cells remaining.  It's such a tough call.  In my opinion, TNBC is aggressive and doesn't play by the rules.

Thank you so much for both of your opinions... Thankfully we have 7 wks to decide for sure what we should do, we did get a second opinion they one said it might be beneficial due to the growth rate and the cancer found in vascular area the other one said that the benefits might not outweigh the effects of the cancer. That's what makes it more confusing!! My mother was at first thankful that she wouldn't have to go thru chemo but now having second thoughts. I think she is willing to do whatever she needs to do. The chance of it coming back in lungs, liver , or brain is a very compelling argument to do chemo... I know it's not a guarantee of not getting a reoccurance but if it decreases the chances it may be worth it.

Here is a link to all the NCCN Facilities in the US if you would like to get a second opinion for your mother.  

Hello,
I'm new to this site. I was diagnosed in January of 2012 with TNBC. I had 8 rounds of chemo first, a double mastectomy, followed by 32 rounds of radiation.
The cancer was in my right breast. After surgery they told me the margins were good.
But 1 month ago after going in for my routine CT scan they found a lymph node at the bottom of my neck that was enlarged. My doctor said he wasn't worried but wanted to be safe and ordered a PT scan. That came up showing it had went to other lymph nodes and also a spot on my spine. I had a biopsy done and it was confirmed that the TNBC had returned. I'm now waiting as they sent the cells from the biopsy off to a laboratory in Massachusetts which tests the cells to see which chemo drug will work the best the second time. I tried to do everything possible to make sure it didn't come back. But it did. I'm also going to see if there are any trials I might qualify for. I haven't started chemo yet but I'm sure It will start in early December. For my sisters that has had reoccurrences can you tell me how the chemo was for you the second time? Were you as sick as the first time or was it easier? I pray they find a cure for this ugly disease soon.     

Hi Sharon,
I hope you had a nice Thanksgiving. Thank you for sharing what works for you with the flax and chia seeds and also about the exercise.
With your reoccurrence where did it come back? Were there any trails that you could have taken? How many rounds of chemo will you have? With reoccurring cancer do they say how long they it will be in remission?
I'm glad to hear you are doing great! It's always encouraging hearing good news!

Hello, Jolene.  My reoccurrence is between my breast area and my collarbone on the same side as my original cancer.  There is also a small spot on my sternum bone right in the middle below my neck.  There was one trial that they thought I could do but I was disqualified because I didn't "have enough cancer".  I was OK with that reason:)  

Sharon,

When your tumor load is small and if you do not want to wait for copper depletion phase III trial to open, you could use some private doctors who prescribe the medication for copper depletion. Joanie posted a wonderful doctor who does that. Scroll down this page to find her posting: http://forum.tnbcfoundation.org/copper-deletion_topic12078.html?KW=copper+depletion

Rebecca

Rachael,  thank you for the contact information.  I will check it out to get more info.  I am thrilled to hear you are NED for almost two years now! Yeah!  I pray it continues.  

Ok ladies ...I'm in need of advice again!! When last time I posted the, my mom was starting Radiation and the doctors basicly told us her case is "up in the air" meaning we could do chemo if we wanted to but may not be necessary due to her tumor size. We thought, researched and got lots of advice and prayed about it and decided to go ahead with the Chemo after radiation complete. Finished Radiation last Thursday!! YAY!! 7wks of 5 days a week. So we went to our follow up with the oncologist yesterday. We told our oncologist this and he said its too late to give the chemo now?!?!?! We were very clear when we saw him 1 wk post op that we were going to decide what to do after radiation and he said that was fine and that way it would give us time to think about it. He said he wouldn't have recommended chemo this far after surgery. My mom even called early in December and told his Nurse that she was deciding to go ahead with chemo and at that time his nurse said that was fine just to call the office 1 week before completing radiation to set up an appointment. I know that Chemo decreases chances of reoccurrence. No one wants to go thru Chemo but I think because of it being TNBC we want the best chances we can get. We are so upset and frustrated right now. Me and my sister always go with my mother to her appts and so it makes us so mad that he basically is saying we all are lying that he said that! UGGG!! We are going to go to a second opinion but her insurance only allows her to see certain doctors and the 2nd opinion happens to be in network and in his same building down the hall...so not sure how good that's going to do since most time co-workers may not want to step on the others toes. Any advice would be appreciated... moms path report states the tumor has 90% growth rate, grade 2, and present vascular/lymphatic invasion.

The Dr. I had for my initial diagnosis (not the wacky one I'm seeing now for trials) let me do my adj chemo after radiation, said the choice was up to me nothing to sway one way or the other.   Had neoadj chemo before surgery, surgery in Apr, Rads May-June, & 3 last rounds of chemo July-beg of Sept.  I stayed NED for 1 year, mets diagnosed in Nov.   With the info Donna provided above, really wish I would have done the chemo before radiation but did not have this info at that time.  Just goes to show what a great site this is with so much wonderful information.