26 YEAR SURVIVOR HERE

nonijones333

I really hardly ever come here but sometimes someone asks me a question and I come here for an answer...prior to my daughters diagnosis now 8 1/2 years ago I didn't know this even exsisted. That might be exactly why you girls don't hear about the millions and millions of survivors out there. I am here to say TN IS NOT A DEATH SENTENCE...PLEASE. Certainly if you come here you see the newly diagnosed and those dear ladies who are in trouble.. and this information is from around the world so those responding are only a spec. I was diagnosed in 1986 at which time treatment was so different..I new I was TN because tamoxifin was then available and my surgeon said I was not a candidate for it. Nine years ago I had a new primary in the other breast that was also TN, if I had been more pro active and had BMX then I would of not had to deal with that but I guess you could look at it both ways, I was young and kept my breasts for 18 years. BTW I refused chemo, ya say what you like but my choice and years ago no node involvement no chemo so nine years ago I said "lasted 18 years without it and chose again no chemo.....Well I am still here and doing fabulous I might say...I have never felt as good as I do at 65. 66 in June. I am Italian and I love to eat and love my wine, everything in moderation. I have been told I am a fabulous cook and if I had to follow some of the diets you girls are on my husband would shoot me, LOL. Of course when my wonderful beautiful daughter was diagnosed, also TN Brac 1 pos. stage 1, I started doing my homework..ya coming here I didn't hear all the things I wanted to hear but that is why some of you are scared...I know sooooo many women who survive they are all around you, MOST WOMEN SURVIVE keep that in mind. When I was first diagnosed 26 years ago my doctor told me to go to a support group..do you know that everyone of the ladies that I became friendly are still alive today. Keep that in mind. I remember sitting in the doctors office and having small talk with the women next to me and she said "oh you just have breast cancer, you'll be fine". Imagine that, well for 18 years that is exactly the way I felt. Knowledge has maybe changed things but I REFUSE TO HAVE IT TAKE OVER. I can go to the other side and think of what might happen to my other daugher and 2 grand-daughters but they can get run over by a bus also. I am going to be tested for the Brac gene, as I am being forced to do that but if positive I will deal, pour myself a glass of wine and look at all the blessings of my life, thank the good Lord and trust in Him for the future...Some people say they have never met anyone that is so happy. Well I only look at all the good things, and there is so many positive things also. Do you know after 8 years some studies on TN say CURE, can't be said for the others, how about we don't have to take tamox, and after 3 years chances are way down of it coming back...Someone might dispute me on this but go to No Surrender Constantine Kaniklidis article of 10/27/07, will make you smile and if you don't believe that then LOOK TO ME. If you are stage 1 or 2 my thoughts are you are fine..stage 3, know of so many survivors, like I say I've seen so many. One of our neighbors, when I was first married over 40 years ago, was left for dead..many many nodes involved and was in treatment, seems like forever. Well I have since moved and recently went back to see some old neighbors and there she was out in the yard picking weeds, she has to be well over 80 and looks wonderful...and can we go on and on and on. Ladies look out your windows, the sun is shinning don't pass up on one single day cause you are just wasteing a beautiful day and focus on only the good things..I think this is just what God intended for us to do. If you don't believe in God you ought to try it.. For all that are in trouble today prayer is powerful and learning to put it all in the hands of Our God, cause sometimes it is too big for us.. Speaking of stage 4 my best friend diagnosed from the beginning with state 4 lived almost 18 years, and I can tell you she LIVED. Okay she was on Tamox and that was over 30 years ago, tells you how long tamox has been around, well still many stage 4 girls around doing quite well. How about focusing on that..Guess this is way to long but i just had to do it cause there is way to little positive things on these boards. Oh and my daughter is running a 13 mile road race on April 1, 4 miles all up hill. She is amazing and she is a SURVIVOR,just like YOU will be...GOD BLESS ALL OF YOU, LOVE NONI

fmakj

Thanks Noni for posting this.  When first diagnosed, I was refused Chemo by my Onc.  2nd opinion was the same.  I was so scared of what my future would hold with only radiation, and then I am pretty sure I came across a thread by you (I think it was you!) ``No chemo for me`` or something like that!  Your story made me start living again each day as I couldn`t change my future!  Now to see you post again has made me smile!!!  Thanks for the encouraging news, I am soon coming up to MY 3 year anniversary, and try to leave it all in God`s hands! Your daughter, and granddaughters have a wonderful role model to look up to!!  Wishing you many many many more years enjoying life and the things you love to do!

Moderators

WOW Noni! Congrats and thanks for sharing such an inspiring, positive, and uplifting post We definitely can use thoughts like yours every now and again!

And Fmakj-- Congrats to you too!!!

--The Mods

barbiecorn

You've given me such hope...thank you so much...I have been fighting depression since I was diagnosed the day after xmas - BMX on 2-1 - you are right...just have to stay positive and not think the worse which I sometimes do...God Bless You for your inspiring words!!!

Mallory107

THank you!  I come here way too often and always come away with less hope-even though my prognosis is excellent.  I try to remind myself that this board is only but a small snapshot of what is really going on with BC.  I just don't get to see the women out there living there life with this behind them.  Your post was a great reminder. 

Janie-bug

WOW Noni! Thank you, Thank you, Thank you. I can't say it enough. I cried when I read your post. I wish others would come back to the boards every now and then just to let us newbies know that there is HOPE. The Sun is shining here today and I am taking your advice. Its my mother's Birthday so we are headed out into the sunshine. Love, Love your story and thank you again

Wren44

Thank you for posting. It's nice to hear from someone with good survival time. And the reminder to notice the good in each day is well taken. That's the key to happiness at any stage of life.

camillegal

Oh Noni what a beautiful story and u made me laugh. My Mom was in her 40's and didn't have any treatment and had both breasts taken.And she lived to 88. And she always felt good. And u'r story is so bright for all who have such fear, it's great that u wrote. And u'r dgtr sounds like u. Thank u for coming in and sharing. U are blessed and I love the wine part. LOL

sandik

Thanks Noni! I needed to hear that today! 

Hope60

Noni, what a wonderful post!!!  Often we come to these boards when we're afraid or in despair (me included) for the support we find here....and that's important....but it's also SO GREAT to read a story that inspires hope and lifts the spirit!!! I can't thank you enough for sharing this.   And I wish you another 26 years of health and happiness!

bak94

Noni-so good to hear your story. Even though mine was diagnosed at later stages, it gives me hope. I have also been diagnosed twice, but 8 years apart, a new primary not recurrence. Plus I am brca 1 pos. I did have chemo both times because of positive lymph nodes. Thank you for posting! Sorry to hear that your daughter also went through it but glad to hear that she is also doing well!

ToriGirl

Noni-

I love you and your story!  I really needed to hear something like this!  Please keep coming back and sharing your knowledge with all of us!

May God continue to bless you and yours for many, many, many years to come!

Tori 

LRM216

Noni:

Thank you so much for posting.  It is always so joyful to hear of someone's positive status being TN.  I was diagnosed three years ago this past February, and am praying for many more.  Your story gives us all the much needed hope we so rarely hear.  God bless,

Linda

Titan

Thanks Noni..loved your post...I felt like you sat me down in a kitchen chair and told me what's up....I love it, love it, love it..going to print your post out and carry it around with me everywhere!

christina1961

Thank you so much, Noni! 

mccrimmon324

Thank you so much Noni, I really needed your story today. 

meandmimi

I also wanted to thank you for your post. Your story is inspirational to all of us starting this journey. I just finished chemo a few weeks ago and have surgery next week.

LisaThompson

Noni...are you really a 26 year survivor?  I'm sorry, but I just have trouble believing you.

debbie6122

!! @lisa

soleil505

Believe or not believe, this post is great!  Thank you so much for it.  I'm sitting here awake at 3 a.m. thinking gloomy doomy thoughts.  Noni's post cleared that all up.  Its like a big sunshine smile coming in to my room.  I'm going to think about it all day today.  Sounds really good to be happy.

Aussiegirl1966

Great post, thank you

nonijones333

So glad I checked in today, Lisa my heart breaks for you. Yes it is very true I am a 26 year survivor and my daughter will be 9 years in June. My feelings about TN is if you have to have breast cancer TN would be my choice, might be shocking to many and a little crazy, but really, look at all the positive things, bet a lot of you never heard that but it is true...our dear sisters with hormone related cancers after 5 years there odds go up and ours go down and the cure word is never used. There are so many adverse effects of Tamox and other drugs they take and we don't have to. Remember when you come here you are going to hear some negatives but these responses come from literally around the world again only a grain of sand. Sooo many wonderful stories of women who survive...they say 40,000 women a year are diagnosed, seems like the female population would be severly depleted if they all died. Triple Negative is just a word and because they don't know what to do with us they have tagged it with some negative information. Personally think it is a bunch of BUNK. I AM A 26 YEAR SURVIVOR AND I AM CURED..what a wonderful word and I believe most of you on this board will be also. Listen to your doctors I bet most of them give you positive information then you come here and scares the heck out of you. I just can't say enough keep focus on all those who come back with good news..seems like many more good stories if you tried counting those statistics. Women with breast cancer are all around us, if you started asking you would be shocked, and they are the pretty young girl that you look at and wish you were her, or the old lady that you say, isn't she lucky she lived to be an old lady. Once on the today show, when they honor 100 year olds, one women was over 100 and she said she had breast cancer when she was 33 years old..think on that. I will try to come back more cause my heart breaks for those that live in fear..the only thing to fear is fear itself. Go out and start living. GOD BE WITH YOU ALL

Whatashocker3

Noni the first time I read your posting I was very inspired by your words. It made alot of my fears go away and I am so happy for you and your daughter for your many great years cancer free. When I read about your words of the er positive girls the fear comes back to me again. I have reviewed the stats for 5 yrs and for 10 and wondered about them too. Stats are stats and I am unsure as to why the 10 year stats are lower than the five, doesn't make sense to me.



Today I have completed my 6th chemo treatment and rang the bell in the infusion room. I have rads yet to go and tamoxifen to follow but I am pretty happy to have completed the chemo.



You are an inspiration to the tn girls and you words are important words. I am sure you don't
mean to worry the er girls but perhaps as I
am just coming out of chemo I am still a little nervous myself. I am sure you know of some successful er ladies out there too?

kaza

Wow!!!! What a wonderfull post

nonijones333

My reply to whatashocker, no matter what is posted someone will find something that scares them when you are in that state of mind. I want to tell you those that have TN are being told so much negative and need to find some good...all they think of is the first 5 years and so many of them believe their toast..you however have many positive things in your favor and need to focus on them. There are so many women with your exact prognosis that are fine. You have to go and find the good things remember even though they say that er+ after 5 years have a higher risk of recurrance then TN they also say after 5 years most likely your odds are still very much in your favor and that MOST DON'T OCCUR. None of us know what is ahead, we can think of all the awful things that are taking place all around the world, torando, wars, terrorists and never leave our house, well it's really not much different then what you are facing...all the what if's. Just take one day at a time your are in a rough place right now...but hey chemo is done, yipee

LRM216

Lisa:

If you go on over to the Komen board - triple neg section - look for "Rena."  Like Noni, she too is about 28 years out and stays on the boards to give new TN's hope.  Sure alot die, but so do hormone positive cancer gals as well.  It just depends on what your dice come up as in this $hitty game of craps.  The crap part of triple neg is that there are some of us that get a crappy roll of the dice and it pops back up right after treatment.  That is the really aggressive type, and yes, sometimes there just is no chemo that can control it.  But one has to keep the faith that if it doesn't rear it's ugly head so soon after treatment, that one has a real good shot at having kicked the beast to the curb for good.  There isn't a one of us that doesn't wish we could get an affirmative - "you are cured - you will never again have to face this monster again" from our oncs after treatment ends, but that just isn't possible.  So we all have to find what's comfortable for us to live with and to bolster ourselves with to force out the daily fear.  The best revenge to this disease is to live every day of your life as if it was your last - and enjoy your loved ones, keep on trying to fulfill your dreams and try to always look to the sun - as it is always there - even when there sky is full of clouds - that big old shining sun still behind those clouds.

Hugs,

Linda  

Whatashocker3

Thank-you Noni I think because today was my last chemo I am a little emotional today. I appreciate your comments. I know the odds are with me so I must focus on that.

Cyn0619

I just wanted to say thank you for your post. It is so great to hear such a great attitude and outcome ; )

Dianarose

I am new to all the terms here. What does TN stand for?

Noni- it's nice to hear such a positive, up beat story. Thanks

lostinmo

Noni Thank you for your story!  Many will call me naive but I have not looked at this as a death sentence but more like a big wall that's in the way of my life that I have to tear down. I have a long journey ahead and it scares me.  But I know it can be done!

Thanks again! 

nonijones333

lostinmo, that's not naive that's a person with determination and positive thinking, not to mention your strong faith that is most important.