Topic: Triple Negative Breast Cancer and Chemotherapy

Janice:  Having TNBC is not a guarantee for mets.  There are many TN ladies on this board who have not had recurrence and I am sure they will be here soon to reassure you.  There are some posts that describe their success stories that should help you to feel better.  Your medical group should have been more honest with you, and if you have lost your trust in them, then maybe you should look for another provider.  There are many things you can do to help yourself.... learn everything you can about TNBC, and whatever you can do to prevent recurrence.  I pray that you will be among the lucky ones who will not go on to stage IV... there are many who don't.  Best of luck to you.

JaniceW - I was in so much pain the day the doctor told me about having TNBC that I didn't fully comprehend what he was saying and realized now why he kept asking if I had questions and did I want to talk.   However, when I did research the next day after I had more time to absorb what I was being told and felt like I had been given a death sentence.  Much to my relief I found the threads on this website filled with positive thoughts which have made me feel so much better.  I know we can fight the fight - we will win this battle!!

There are no guarantees in any healthcare, especially any form of cancer.  Triple negative breast cancers tend to be aggressive, grade III, and they do indeed seem to respond to chemotherapy quite well.  The more common forms of breast cancers, that are hormone positive, have follow up drugs like Tamoxifen that can lesson the chance of recurrance long term, unfortunately there are no drugs like that for the triple negs.  Without chemo your chances of recurrance were quite high, most all of us with triple neg have chemo - it's our best chance at long term survival. 

Breast cancer of any kind is not fatal if it is only in your breast, it is once it has moved to another part of the body that it is a problem.  That's why you want to be vigilant in your "follow-up" appointments, in hopes of catching a recurrance before you have it widely spread.  My grandmother had breast cancer (hormone positive, not negative) that spread to her bones, so it was then classified as "terminal".  She lived with "terminal" BC mets to the bone for 17 years!  And it was the diligence and medical care she recieved at MD Anderson in Houston that kept her alive, without that she wouldn't have lasted 6 months. 

You need to read the two threads about POSITIVES about negatives, and the stories of long term survival - try and focus on those.  If those are your two babies in your avatar, you owe it to them to work thru these feelings & emotions, and do everything you can medically to survive.  I would also suggest you find new doctors.  Obviously your faith is gone in the ones you have now, so a change is what you need.  I changed doctors & hospitals after my surgery, I am very grateful that I did.  My new docs are amazing in their thoroughness, explaining everything that happens to me in great detail.  My original surgeon was a pompous ass that brushed off my questions and most certainly never told me what I needed to know.  I promise you, there are better doctors out there!

Thanks to everyone here for answering my question.  I feel a little better now.  Its nice to know that there are good positive women here on this site that i can talk to.

I strongly suggest you hire a new team to manage your follow up.  I have fired my surgeon and hired another.  Here's why:  Finished my treatment (lumpectomy, chemo, radiation) in mid-Apr.  By July I'd worked up the nerve to do a self-exam and felt a lump.  Talk about scared!  The next week I had my port removed and mentioned the lump to my surgeon.  He felt it and said I shouldn't get neurotic about it and just get my scheduled late Aug. mammogram.  Three weeks later I had a follow up appt, and again brought up the lump, which he again felt.  He said I was driving myself crazy about this and I should get the mammogram and he'd see me again in mid-Sept.  Well, I knew I'd be a basketcase by then, so I went to see my breast nurse coordinator and she got me the mammogram and ultrasound that day and there were three lumps,  Turns out they were cysts and I'm being checked again in Nov.  But I did tell my breast nurse coordinator that I wanted another surgeon with a little more compassion to go along with the skills.   She knew just the person and I'm all set, just in case.  So you go get a new team that you feel comfortable with and who will work with you on a more compassionate level.    

Hi,

Your friend went to the #1 best cancer hospital in the US, and that is why when I found out last Friday I am triple negative, I have asked my surgeon to please cancel my bi-lateral surgery scheduled for this Thursday here in FL and I intend to go to UCLA Jonsson Comprehensive Cancer Center (JCCC) in Santa Monica CA.  It has been continually rated #1 by US News and World Report as the #1 Best Breast Cancer Hospital in California and is in the top 10 in the Nation along with MD Anderson Cancer Center in Houston TX.  Thank the lord we have these these wonderful hospitals and these dedicated people doing research.  Hercepten was researched and developed at JCCC.  The Dr I hope to have is Dr Sara Hurvitz who write papers, does studies and organizes trials on Triple Negative.

My sons and grand children live about 150 miles north of Santa Monica, so it will be nice out there with family..we do not have any family here in FL.  I am christian but have not been attending church, but I have dumped this whole thing with my cancer in Gods hands.  I am handling the things I can, scheduling my treatment, eating the way I should and exercising, and he will have to handle the rest!   I fully believe I have at least 10 more good years on this earth, I am 68.  I have a dear friend who had a IDC modified radical of one breast and removal of 6 or 7 nodes in 1979 (30 years)and is 72.  She has had no recurrance, no swelling of her arm and had no radiaiton or chemo!  Treatments have come a long way since then. She is very active, snowmobiles, goes out on her pontoon boat by herself since her husband died, took courses and now teaches bobbin lace, travels, and you name it.  I want to be like her, how about all you ladies?.  We must have a positive attitude.  God Bless you all!

I was sick about my statistics that my onocologist shared with me.  I fixated on these, to the point of depression.  I knew I needed to talk this out with some one, and reached out to the cancer nurse.  Our cancer facility offers free nurses to discuss diagnosis, and offers counselling.  This person totally set me straight and I remind myself this each day.  Each person has a 50 / 50 chance walking out their front door alive each day.  She has a patient who has been BC stage 4 for the last 20 years. 

I hold on to those facts each day, to help me get past the hauntings that come to me.

Chemo gave me 30% greater chance at survival, at 36 I needed any treatment that would be me better odds at survival.

Hi, Dershell, Just to let you know I am a 22 year survivor. First time I was your age and unfortunately 6 years ago a new primary in the other breast. Both triple negative. first time stage 1 2nd time stage 2, exactly the same as you. Your prognosis looks excellant, no nodes is KEY. Where did you get "almost guaranteed to come back"!!!! Are you kidding, so many long time survivors here not to mention the 160,000 women a year that survive breast cancer and are not on these boards. Honey, look at all the positives about your diagnosis, your not going anywhere. . Think you better go over some of those so called facts with your doctor or get a new one, Ya sure it is scary but just walking down the street today is pretty scary if you think of all the things that could happen.
Just want to mention my daughter was diagnosed with breast cancer 5 1/2 years ago, 6 months after me. Cancer was in both her breasts. She is doing wonderful. She also was TN stage one no nodes.
Hope this helps, I will keep you in my prayers. My God is bigger then any cancer. God Bless

NoniJones and others on this thread, sorry I am not triple neg, I am triple positive also very aggressive. But just wanted to say listen to NoniJ she visits us routinely on the Catholics thread and has eased my mind in a big way so many times.
NONIJ your posts are among the most comforting on this site, please come back often you just warm my heart and remind us that this is all smaller than the Divine.

Thanks you are awesome.

Do you really think Mind over Matter works?  I have a very positive attitude...and I am a tough old bird...at least I think I am....

Hi thanks all for the encouragement....i havent been on boards for a while the AC treatment has been rough on me...GOT ALOT OF BODY ACHES..SORES IN MOUTH..CANT SEE OR DRINK ANYTHING...FELT FEVERIST ALL THE TIME ...this last for 8 DAYS STRAIGHT....UGH!.i get my last round on thursday....yeah....but will need to do 12 weekly or 4 cycles  of taxol or taxateres...does anyone know which option is best 12 weekly or 4 cycles? Im hearing the weekly treatments have a better effective rate? ANYONE KNOW IF THIS IS TRUE

Dear Jenn,

They have not compared the biweekly Taxol against the weekly Taxol. But studies have compared triweekly Taxol to weekly Taxol and triweekly Taxol to biweekly Taxol. Indirect inference is that efficacy of weekly is very similar to biweekly but it is gentler.

Dear Cindy,

Curious to know how come you know the specifics of your TN. My pathology report says IDC and NOS (Not Otherwise Specified). How do I find out more?

Ah, frick!  I have a positive sentinel lymph node.  I hate this rollercoaster ride.  Am I toast?

Violet..you are NOT toast!  You  can read all about women that have positive nodes on here and they are NOT toast...I like you too much..don't even talk about being freaking toast.......