All those dancing with NED (no evidence of disease)
 

Sisters and brothers,
It seems we have had so many losses these last few months. My heart breaks for each and every sister and their families, who have lost the battle to this terrible disease. Many, like Sheila, are struggling with so much right now. It is wonderful to see so many respond with prayers, concern and support. Often I am so overwhelmed with the sadness I can't check the site for days.

My concern is for our new sisters visiting this site. They may find only the sad events and could become discouraged, loosing that much needed hope. With Herceptin being available now to Early Stage BC patients there are many, many positive stories out there. It is only natural to go on with life when you get those good reports and not look back. Sisters like Becky, Jean and others who have not reoccurred, are here to offer their knowledge. I am so grateful to them. Please, please continue. The site needs you!

I think it would be helpful for some long term survivors and others who have not reoccurred to post. I totally believe this site is for everyone, especailly our sisters who are struggling. In no way does this mean we do not feel the pain others are experiencing. But we (I) also need some positive news.

Lets see if we can also hear from our sisters who are dancing with NED (no evidence of disease).

I'll start the ball rolling. I just had my 2 year check up (well almost 2 years, 22 months to be exact). All is well and I am so thankful. I am off to change my signature!
Donna

NED 6 years later
 

Hi - in April 2002 (age 47) I had a 1.8cm tumor, 1+ve node, 9/9 grade, vascular invasion, tumor necrosis (my path report was covered with the recurring phrase "poor prognosis"!).
I had a lumpectomy, ACx4, taxol x4, 37 rads (no Herceptin) and I'm doing just fine. My twin sons just graduated from UW (Seattle) last week, my 17 year daughter went to her first prom last month, and while my husband has recently been diagnosed with "probably MS" life is still very good for our family.

Marianne (in Vancouver, Washington)

reply to NED
 

I am also NED 2 years +
grateful to see my three daughters grow an additional two years
Health to all

Hi Donna,

What a great thread to start - and sorely needed. I don't post often, but I do check in frequently, and wish everyone the best.

As my sig notes, I had treatment and a recurrence, but as of 9/07 I am NED! I ran the Boston Marathon for Dana-Farber to celebrate my end of treatment, in honor and memory of far too many cancer warriors, and to raise money for cancer research so that we and our children may live long lives cancer-free.

There's a possibility (probability?) I may have another recurrence, but research just needs to stay a step or 2 ahead so we have the options we need to fight this @#$ disease.

take care,

Anna

I am 3 years 5 months past diagnosis and dancing away!

Just chiming in..................Praise God for an ALMOST 3 year NED. The official NED date is July 28, 2008.

Thanks Donna for this post.....yes, you are right, along with the sadness there is also happiness. Sometimes that happiness is hard to pull up though......posts like this offer hope and remind each of us that for whatever reason some of us are NED and some are not. We are united though - with once cause - to support and love each other through it all..............whatever that "through it all" might be. I look at this life as a journey and for whatever reason our journey took the direction it took. We've been blessed with one another to love and support - learn from one another and share God's love with one another.

Just earlier while I was praying and thanking God for all His mercies shown me.....I stop and tell Him how sorry I am for those times I doubt and question Him because it so often doesn't make sense to me and my heart is often saddened by someones suffering. I ask God "Why so many good people suffer" .....but in that same breath I know our Loving God knows the whole plan...the whole picture....so I can only sit by and trust His plan....BELIEVE and love while it is still called "today."

We're all in it together - cancer or no cancer....NED or NO NED....it's a journey until the journey ends. While on the journey we take what comes our way and learn from it, grow from it and support and help each other.

How blessed we are...................

Thanks Donna...awesome post.

Mary Jo

Donna, I couldn't agree with you more. This thread is SO NEEDED. When I was first DX all I did is search in vain for people that did not recur. My path report showed a very bad prognosis all over it. My onc gave me no hope. The only hope I found at all was the women on this board that hadn't recurred & remained NED. So this is a great idea.

My signature says it all but I am stage IIIA with 5 positive nodes. I could not have radiation and I recieved TCH and finished my yr of herceptin. I am 2 yrs & 5 months out and NED.

Chelee

Hi Donna,

What a wonderful idea for a thread. I am ashamed to say that I have been very affected myself by the many difficult losses and have dealt with it in the not so healthy way of avoidance. I too remember spending HOURS looking on this site for anyone with similar stats that had not recurred. Not only was I given so much hope by those with no recurrences, but especially from those who had, and were doing wonderfully and had been for many many years.

I just celebrated my two year mark also (May 17), and find it hard to believe at times that I am still here. I have never loved life as much as I do now and can't begin to explain to those around me (who have not had a cancer dx) how my life has changed for the better.

Love, Kelly

Hi everyone,
I celebrated three years out in May, 08.
Best,
karen

Hello,
I am 4.5 years NED and plan to have plenty more!
Best and good wishes to everyone,
Monica

I'm with Pink Girl - I am a realist. I too recognize that woman still die from this horrible disease, BUT more and more woman are surviving it. As long as progress with newer and better drugs continues to be made at the rate it is now (even faster please!), the number of woman who can say they are NED will continue to climb!

Onward and upward!

NED 2 years, 6 months!

I'm a realist too but having said that I just got the results of my three year out mammo today and it's clear!!!
I've lost three friends to this disease since I was dx so although I'm thrilled at this news I know a recurrance can hit anytime.
But for today,I'm happy!

Diagnosed stage IV, almost 2-1/2 years ago. Scans have been clean ever since. I get my scans again in July, so praying for more good news..sherryg693

Getting Anchored In Your Essence
 

Just wanted to chime in, here. I did recur (orig dx in 95 w/ stage IV) -- before we all knew about her2 and herceptin.

I was lucky in that I recurred, into the liver, in august of '98. BECAUSE HERCEPTIN WAS FAST-TRACKED BY THE FDA AND MADE AVAILABLE TO ALL MET BCrs September 28, 1998!!!

And here I am. Just had my every 6 mnth scans and my annual mammo/sono -- and I AM STABLE!!! Sticking w/my Vitamin H ev 3 wks. Joyful, feeling blessed, deeply grateful.

In '95 I had no grandchildren. 1 married daughter. I lived to see my baby married. And to greet 5 new Souls to this world! Life is sweet. Stay strong, brave and determined... Be well. Stay positive and connected to your Spirit at all times. It will guide you.

Always sending loving energy to y'all...
Andi http://cdn-cf.aol.com/se/clip_art/gs...mals-butterfly

Although my prayers are with everyone that they won't reoccur but I honestly believe that all is not lost if you do.

After being diagnosed as Stage IV in October 2007 I am pleased to say that I have been NED after only 3 cycles of Taxotere + Herceptin. I JUST returned from my check up and have now been NED for 5 months.

I plan to just keep on adding up the months!!!

I also GREATLY appreciate the sisters on this site that are participating in the DM1 trial and share so freely about their experiences. Their first hand knowledge give me further hope that if things change, there are a lot of options remaining.

Thanks to everyone on this site for being so inspiring!!

I'm still here too!
 

I am officially 15 months out and doing great!! Living and loving a life I did not think I would get to see.
Thank God for this site and the modern marvel of science.
I have been trying to log in, but have not had much chance.
I am here to say, keep going just like the Energizer Bunny.
We have all taken a licking, but we keep on ticking!
Emelie

3 years, 8 months, all is well.....

I agree. I know how much I clung to positive stories when I was first dx, and there are a lot of us out there.
I'm over three years from a really knarly diagnosis - very large tumor, a pos node after chemo, 9/9, hormone minus, high high scores on all the bad prognostic factors.
Over 3 years later, I'm fit and busy. My twins have survived (thrived) their first year of college and all is well.
Linda

All those dancing with NED
 

Nine and half years after my original diagnosis I am very grateful to be still alive and kicking and getting older.
One year after my diagnosis a surgeon told me I had six months to live. He even wrote it in a letter to my oncologist. I remember thinking "That is not going to happen to me" when the surgeon was still talking. Thank goodness it didn't happen.

Great thread to start! 2 years, 3 months NED. I remember when I was first diagnosed I searched frantically for anyone that was NED after a diagnosis like mine. It helped so much to encourage me. I hope this thread will help many others!! May God's peace and comfort be with all of us.

I love sharing happy news...

this month was my 5 year NED!

I had 10 positive lymphnodes with many of them matted together....

There is lots of hope out there!

Hugs ~ Ruth

I was diagnosed two years ago this past May, it will be two years since my surgery this July. Everything is going great! No problems. Praise God!

It's hard to believe that I have been back and forth with breast cancer for 10 years, but here I am. I feel great! Tykerb and Xeloda have brought me back to the land of NED!!!! Read my bc bio below

Kim

Great idea! I'm four and a half years, yes that's 4,5 years, out from diagnosis. I didn't get Herceptin, because it wasn't available then for early stage disease, and I'm doing fine. Dancing with NED!

I just read on a Dutch site that in my country 85% of those diagnosed with Breastcancer survive at least 5 years. For early stage the odds are even better. When I was diagnosed the number on the same site was 80% survival. In just 4 years the stats have improved that much!

Love

Jacqueline

Just wanted to bump this to the top and say thank you to all who have responded.

You have helped me and so many others regain that deep down good feeling. Lets keep the posts coming!

Thanks again!
Donna

I am almost 4 years out. When I was diagnosed, I never thought I'd see my daughter's graduate. Since then, my oldest (who started college right when I was diagnosed) has graduated college. My middle daughter graduated high school and started college. My youngest who was starting 8th grade will be a senior in high school.

I started my research on bc when I felt my lump in August, 2004. When I had my lumpectomy, I prayed I was not Her2+ and the odds were with me. But of course that's not what happened. I am a different but better person than I was before. I don't take no for an answer and I don't say yes as often as I used to.

I clung to the fact that I could survive and I didn't. I live!

Just remember this: bc is frightening but it is compounded by the fact that before you had bc the only women you heard about were the women who did poorly and died. You never heard about the women who did wonderfully and lived.

More live.

Donna you are a genius ....:)
 

I am now 3 yrs. and 3 months. I can remember clearly
how disturbing the dx. was when I heard Her2, Yikes...
I thought...this is very bad...especially when I found out
that as an early stager I could not have Herceptin.
Well dear sisters new and old never give up...I had
2nd and 3rd opinions and still did my searching..and then I found this site. My second home, well really my first home for a long time, for when I first found the site I could not read enough, I found others who were
thriving and living life -

God Bless All
Huge Huge Hugs to my Dear Sisters
Jean

18 positive nodes - now 3.8 years NED . Great to be here ! Romo9

Two year anniversary this month. Every day is a gift
and life has never been sweeter. My bones ache from
Arimidex but I just keep moving. This site has been
a wonderful, informative, happy, and yes sometime
sad place but everyones support has been a lifeline.
With gratitude
patb

I am 1.5 yrs NED!
Donna, this is a great idea for a thread that you started here!
Thank you!

3 years. Woo hoo! I guess you never know but I'm beginning to feel like I'm done with it. Hoping it was a fluke convergence of hormones and genetic defects. Bev

Great thread Donna!!
 

I was dx in Oct. 06, by accident - I had a breast reduction and my PS found my 1.7 cm. tumour. This was 3 months after a mammogram and breast u/s showing nothing. I was devastated - no BC in my family, and my DH had just suffered a brain aneurysm in Jan. 2006. (he's fine, we were very, very lucky).
Needless to say, when I started reading and investigating about Her2+, alot of the news out there was not exactly + (excuse the pun). But in Dec. 2006 I believe the Hera trials and others came out with the wonderful news about Herceptin - in Canada Herceptin was already available to early stagers, and my onc. was much more positive.
In Jan. 2007 studies were published relating that pre-menopausal, dense breasted women were 6x more likely to get BC. (I fell into both those categories). This has been my mantra - I tell everyone I meet to get checked, and to demand breast MRIs if there is any question of breast density on their mammos and u/s.
Well, I guess I am 18 months out from my MRM, looking forward to that 2 year cancerversary in Dec. 2008.

Living each day to the fullest - The Dh and I celebrated out 25th wedding anniversary in Oct. 2007 with a big catered party at home, my youngest daughter graduated high school in June 2007, and this month, June 2008, my older DD graduated university. I savour every day, and try not to put things on hold anymore.

all the best
caya

I celebrated 3 yrs in May 08!
God is good.

I celebrate my two-year anniversary tomorrow and plan to keep counting! God bless us all!

Congrats Paty on 2 years tomorrow!
Two years and two months ago I had surgery with largest tumor 4.5 and 7 of 9 nodes positive. But here today NED and loving life more than ever. Thanks for the knowledge, support, and love on this site for making the journey so much easier! ma

As I posted earlier, my 6 months checkup this month shows I am also NED. It will be 4 years tomorrow (June 30) that I had the heart attack that led to the discovery of my her2cancer mets. I would never have discovered it otherwise in time. Herceptin saved my life. As many of you know, it has also been 23 years now since my first BC diagnosis in 1985, so I am a long time survivor of BC and also her2. THere is more hope now than there has ever been. Hang in there, fellow warriors! Our prayers for each other are of great value. Hugs, Tricia

Just for the record, I have 2 very good friends here where I live. Both had bc in their early 40s. One was stage 1 and the other was stage 2 with several node involvements. It has been 10 yrs plus for both of these women! They each had chemo but no herceptin since it was not available.

Hey....