Reading about TN online makes me feel hopeless, is this the end?

Hang in there...our triple negs will come on and let you know that there are many things to be done - don't you dare count yourself out yet!

CyberHugs  LowRider 

Come to this thread !

http://community.breastcancer.org/forum/72/topic/752075?page=146#idx_4352

copy and paste if the link doesn't work

They find something else - radiation - surgery - a different kind of chemo

Have you seen an oncologist?

I could have written your exact same post, four years ago. Did and felt, the same thing. Sucks doesn't it?

Hang in there sister. There are boat loads of us TN's on here.

Traci

Hey old timers!  Nordy and Tracy!    Could you post for us every day..maybe a couple of times?  We need you...just kidding..but we newbies and kinda newbies appreciate your posts.

I was in your same situation last year. The first thing that you need to do is STOP RESEARCHING ONLINE, at least for now. You should find a doctor you trust and as many second opinions as you need to feel comfortable, have those doctors agree on a plan of treatment for you and then take things ONE STEP AT A TIME. I followed MD Anderson's treatment protocol and had chemo first. The chemo killed EVERYTHING! When they did surgery there was NO MORE CANCER!! Since I had chemo FIRST we could see exactly how effective it was on my cancer, as opposed to removing the tumor with surgery and then hoping that the chemo worked on any remaining cell. Since chemo kills cells while they are in the process of dividing, chemo is actually most effective at killing aggressive(frequently dividing) cells. This is why chemo affects other rapidly dividing cells(skin, hair, digestive tract lining, etc. Last year I felt doomed when I found out I had TN. But as it turns out for me I have a greater than 94% chance of this cancer NEVER recurring(this is bc I had a complete response to chemo and there was no evidence of disease(NED) at time if surgery.) So while a TN diagnosis was scary as hell, I assembled my medical team with care, followed their treatment plan, and as a result I'm cancer free and fully expect to be forever. Please don't waste you time and energy researching possibly old data and focus on what your doctors tell you. Remember, the statistics are just a tool for the medical community to track their progress. The statistics by definition, are comprised of old data. Old protocols that may of may not be the same still, ALL PATIENTS (older women, women with other medical conditions, women without access to the best care, women in the poverty sector, etc) one thing is for certain, YOU ARE NOT A STATISTIC!!! It is impossible to be only 60% or 40% alive, you are 100% alive now and I have no reason to believe that you won't end up with the same great result as me. Hang in there honey, this is THE WORST PART!! You can do it!!!



Please excuse typos etc. I typed this on my iPhone...

I know that some people are really great at flushing out quality info on the Internet. I was not that person while my dx was still so new. I managed to flush out only the worst case scenarios and doom and gloom statistics and then compulsively ruminated on those bad things. If you do this to yourself(as I did) please stop. I got a list of doctor approved websites to visit and I stuck to those (this was one of them). If you are able to use the Internet effectively then you are blessed. If the Internet scares the living crap out of you (like it did me) then stop the madness. At least while you are still so raw.

I was diagnosed TN 8 days ago.  My first oncologist appointment is Monday.  I know exactly what you are feeling.  Not knowing what stage I am is nearly unbearable.  I found the lumps alittle more than four weeks ago and am so ready to start treatment ASAP.  We will beat this thing together! K

I was diagnosed stage IV TNBC June last year. I've had taxol and Avastin every two weeks. Now clear enough to go onto just Avastin for "maintenance". (have some nodes in neck that will be radiated soon.). please try to keep up your spirits- all is most certainly not lost! God Bless.

Brandy - My doctor followed the MD Anderson protocol as well and I also had chemo upfront. Brandy has great advise about the internet. I never looked up statistics, quite frankly, because I did not want to know. But I would always manage to find some website with doom and gloom. Listen, we all know the raw end of cancer... and it is always somewhere in our minds - sometimes in the front, sometimes in the back... but back then, I didn't want to hear it. I just wanted to focus on trying to live. There were many days that my husband threatened to take the computer away because I would come across something that would really upset me. 

Things are always so hard in the very beginning. Take a deep breath, get all your facts together (not opinion, not necessarily statistics, but facts), put your best foot forward and dive on into treatment. Get a journal and a calendar. Count down the treatments. Write down your feelings. Love your family and friends as best you can. Try to eat healthy when you feel up to it. Take a nap when you feel tired. Cry when you need to. There is no shame in having emotions. This is a tough diagnosis. If you believe in God or another entity - pray. Meditate. Listen to your favorite music. (Okay, so here I am laughing because my favorite chemo music was Linkin Park). Take time for you. If you don't normally let people help you, now is the time to let them - don't be afraid to say what you need. People really do want to help... they just don't know how sometimes. Oh, and be prepared for the uncalled for, not-very-thoughtful comments, that will for sure come from sometimes unexpected sources. Again, sometimes people just don't know what to say... sometimes, well... sometimes there is no excuse and stupid people say stupid things...   

Breast cancer.org is a great resource without being overly opinionated (not necessarily the boards as sometimes we are opinionated - but the educational part of the site) and I also really liked the Livestrong site...

And last but not least... you have a great group of women here all pulling for you when times get tough. Lots of hugs...  

loving_mother - you are welcome. And lots of hugs to you. Hang in there. 

Loving Mother - most triple negatives end up cured as long as it hasn't metastasized. And actually, the thing I was told and keep hearing is that it responds better to chemo than many bc's. The more aggressive ones tend to respond better. If you make it to three years your chance for survival goes way way up (talked to one of my many friends who's past 3 years and she said the stat she was given initally was 70 percent survival and at 3 years it shot up to 85 percent survival) She had it in 3 nodes and I don't remember the size of her tumor. Once you get to five years, it is highly unlikely to come back. I was given 70 percent for survival at diagnosis with a 3-cm tumor and having it in 2 nodes and that was with "fair" overall health.

Loving Mother,

RachelKa wrote:

Loving Mother - most triple negatives end up cured as long as it hasn't metastasized. And actually, the thing I was told and keep hearing is what I noticed others here wrote: it responds better to chemo than many bc's. The more aggressive ones tend to respond better. If you make it to three years your chance for survival goes way way up (talked to one of my many friends who's past 3 years and she said the stat she was given initally was 70 percent survival and at 3 years it shot up to 87 percent survival) She had it in 3 nodes and I don't remember the size of her tumor. Once you get to five years, it is highly unlikely to come back. I was given 70 percent for survival at diagnosis with a 3-cm tumor and having it in 2 nodes and that was with "fair" overall health.

Wow....this post is really encouraging to me! I was just diagnosed, had BMX 3 weeks ago and am waiting anxiously for the "tumor board's" decision on what to do with me regarding chemo. Thanks, ladies, we draw hope and strength from ladies like you.