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Today, I have reached two years NED

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

and I am celebrating! Some time ago, I questioned my gyne oncologist as to when "NED" officially begins.   I've read here that it is when a woman first heard those dreadful words "You have cancer." I've also heard that it is when adjuvant Tx ended, i.e., chemo or radiation after surgery.  My surgeon said that NED starts with your hysterectomy, as the removal of a woman's cancer is 90% of the cancer Tx. 9% of the remaining 10% of Tx is chemo and/or radiation.

Two years ago today, I had a hysterectomy. I had tears running down my face when I was rolled into the operating room and before I lost consciousness. I fully understood my terrifying situation and the possibility that my situation was dire.  Frankly, I didn't think I would survive this long given my horrible diagnosis and all that I read about how deadly UPSC is. I don't know how long I will live but I have to say cancer has opened my eyes to the importance of living each and everyday as though it is my last day on Earth. My perception of my life, others lives and the world in general has changed- in some ways positlively and in other ways negatively. For example  I have always been outgoing and friendly, but now I find myself withholding parts of my inner thoughts and feeling from others. Keeping my cards close to my chest, sort of speak. Perhaps like molimoli, I am trying to not burden those I love with my problems. Maybe, l am also trying to cushion myself from the suffering of letting go.

Da#n, I hate cancer!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2937
Joined: Mar 2013

We love ya though!  Congratulations and, even though it has been under such terrible circumstances, I am glad I have met you.  

I hope you did something really special for YOU!  A facial, manicure, great meal or maybe some bubbly.  Heck maybe all of the above.  

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Celebrate and then celebrate some more.  You deserve it.  Hugs and prayers, Lou Ann

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

My take on life is - everybody is dying; and very few know how long they have.  One of my friends who never missed a day of school all the way through high school graduation died at 22 when she was thrown off a horse and broke her neck.  She left two little girls along with a husband - they were exactly the same age as my kids.  Another good friend had a heart attack at 27.  She never married or had any kids.  Every year on her birthday I sent her now 90 year old mother a card - she was her only daughter with three boys.  My youngest brother dropped dead at 37 in his living room after coming home from the hospital on a Saturday morning after having an MRI on his shoulder - it wasn't his shoulder; it was his heart.  His 16 year old daughter and his 12 year old mentally handicapped son were with him.

The thing is, life is so fragile and yet so strong.  I know this sounds crazy, but I don't mind having this.  Life is what it is.  I don't believe in a personal god but I do believe there has to be something that is that spark of life that comes at birth and leaves at death.  As with anything in my life, I will work through it and what happens, happens.  I have had a wonderful life and I certainly don't want it to end but I'm a quality over quantity person.

Congratulations on your anniversary, Abby.  I raise my bottle of Lipton Ice Tea to you and offer a toast to many, many more of NED!!

 

Take care,

Eldri

molimoli
Posts: 514
Joined: Aug 2014

Quality over quantity ? BAM<BAM<BAM !!! Nuff said, Me got sealed lips. but heart on a hug fest, HUGS to all my amazing sisters on this blog.

Eldri sorry about your family and friends, but the lessons learnt from those experiences are serving you well, it's shining through.  Showers of NED blessings my sister.

Moli.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I wish I weren't in chemo, so that I could lift of glass of champagne in a toast to you!  Well, I could still lift it, but I'd have to let someone else drink it...

Here's to living life in all of its awful beauty.  May you continue to thrive, love and be loved.

Chris

AWK
Posts: 364
Joined: Mar 2013

I read somewhere that some consider the NED to be a period of rebirth in some ways.  It might seem strange but I think it is a day to mark the Thriver you are and the new perspective you carry - both good and bad. I  know you lost someone very close to you to breast cancer; maybe this is a day to live a little more loudly, enjoy a piece of cake and have a wonderful swim.  

You inspire me and have been a good centering point of calm for me on many days.  Cheers to you.  

Hugs Anne

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

You know that makes perfect sense to define NED as after your surgery if the surgery removed all the visible cancer.  Obviously everybody has cancer cells in their body but your immune system kills them before they can attach and multiply.  That's where we are!!  On October 30th, I will be be one month NED.  Hey, this is pretty cool!!

Take care and look for the positive!

Eldri

ConnieSW
Posts: 1584
Joined: Jun 2012

Great feeling, isn't it?  And it'll be even better next year and the year after and on and on.  Relish every single day.

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

You know, I never thought of it that way! In that case I will be two years NED on Dec 5th! You are so right. From now on, I will consider myself NED from 12/5/2013. I am so happy for you and hope we both continue to dance with NED for many years.  Sandy

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Happy Re=birthday!  There is a framed plaque in my dr.'s waiting room that reads "You became a survior the moment you were diagnosed"!!!   I like the idea of being Ned right after surgery!  My original gyn who found the UPSC said she took three biopsys of the polyop and basicaly got rid of the whole thing that way.

I wouldn't worry about closing yourself off, so to speak.  Sometimes all we are doing is protecting our own heart, mind and soul!  We are human and our inner self can only take so much!  Most of your outgoing spirit will come back.  We all have PTSD over this stuff not to mention the regular life time of crud we have gone through! Anyway, congradulations on your great news!  Best, Debra(Jo)

molimoli
Posts: 514
Joined: Aug 2014

Me too love you lots. Grant her Ned for ever my Creator please,please,please !!!  Stay sweet.

Nuffnuff love,  Moli.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Great news!  Whether you count it from diagnosis, surgery, or post surgery treatment - it's still good news!  It's a long old journey,with many bumps in the road, so we need to celebrate every victory along the way!

Kindest wishes
Helen xx

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1807
Joined: Jun 2015

Time to CELEBRATE!!!!  Congrats on your two years. And heres to many many more for you and all the rest of us that celebrate with you.

I have heard that we settle into a new normal over time. I hope your new normal will bring you peace, calmness and allow you to be open again when you get there.

Love and Hugs,

Cindi

Cucu me
Posts: 214
Joined: Apr 2015

Stay on this board just to be with us for inspiration and never have problems with your health.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Cathy

Happy to celebrate with you.  Sending hugs and continued well wishes!!

 

Kathy

pinky104
Posts: 574
Joined: Feb 2013

Interesting that your doctor told you that survivorship starts 5 years after your surgery.  I'd read many times on here that survival starts counting after your hysterectomy.  However, my oncologist (separate from my gyn/onc who did my surgery) told me congratulations on being officially 5 years out at five years after the end of my last chemotherapy appointment. I wonder if it depends upon whether you're talking to your surgeon or the adjuvant therapy person.  Maybe they each consider what they do the most important thing in your treatment.  Anyway, congrats and may you have many more years of survivorship!

  

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

If you think of NED as being no evidence of disease, that would mean different things to different people.  If, after my hysterectomy, my CT scan would have shown other tumors, then I wouldn't have been NED.  But since nothing showed up in lymph nodes or visably anyplace else then wouldn't that be NED?  

My gyno/oncologist told me that with just the hysterectomy, I had a 50/50 chance they had gotten it all since they couldn't find any other cancer.  But....since it was UPSC there may be many cells of undetectible cancer that the chemo would kill off upping my survival rate at five years to 80 to 90%.

LA123's picture
LA123
Posts: 41
Joined: Oct 2015

I am so glad you reached a wonderful milestone, congratulations! You made my day. :0) 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

 

Believe it or not, I had a quiet evening at home and didn't lift Lipton Tea (Eldri) or champagne (Chris) to my lips!  But I did reflect on my good fortune so far.  Eldri, I am so sorry to hear of the loss of your friends and brother at such young ages.  You have a remarkably positive attitude and I agree that we are all "dying".  Shakespeare said that April is the cruelest month because all around us new life is beginning- well, that is, except for our own individual lives. Kathy congrats on reaching 10 years since your diagnosis and I am wishing you the best with your upcoming surgery.  Sandy, glad to hear that you will reach your two year annivarsary NED on December 5th.  Debrajo, it is like a "Re-Birthday".  I think we do suffer from PTSD.  Cindi, we do settle into a new normal somehow.

I saw my gyn onc yesterday and he told me that I should continue to do as I am doing, that is exercising and eating right. I have been having a pain in my upper back and side and he doesn't think it is related to the cancer, but he could see that I have been feeling somewhat anxious about it, so I will be having a Cat scan sometime soon.  I have now graduated to seeing him, not every 3 months, but every 6 months if all continues to go well.  I am happy about that!

Hug and Love,

Cathy      

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

Time and knowledge are our best friends IMHO.  Unfortunately, getting to the time where we can look back on it all takes - time.  And you can check off 2 years and hopefully move on to doctor visits every 6 months.  That is indeed a big deal.  I'm glad your doc wants to put your mind at ease by doing that CAT scan and you will be able to be assured that the pain is from somthing other than cancer.

Suzanne

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

It does feel good to see my doc now in 6 months. I look forward to reaching 5 years   NED like you have. It would be wonderful to forget about Ca altogether!

Warm Wishes,

Cathy

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

I am SO happy that you are doing well.  My 1 3/4 post chemo. appointment is on the 18th of Nov..  With your timeline, I had my two year NED anniversary on July 28th of this year.  I, too have had some pain in my lower back and a cough that I don't know whether it is sinus, allergy or what but it has been for 6 - 9 months and I have a polyp in my gall bladder, so the oncologist wants to do a CT scan  and check all of it.  Otherwise it would of been just a chest X-ray.  I'm not too concerned as I feel really good right now.  Our stories post diagnosis have been so similar.

What's different is that I am more vocal than I have ever been.  I guess I have something to say and want all to hear my thoughts and feelings.

I don't know what the future holds, but I know Who holds my future and I take joy in that thought.

Celebrating quietly will probably be what I do in Jan. of 2015 celebrating 2 years post chemo. and hoping it is NED.

Someday, maybe we can meet.  :)

Jeanette

AWK
Posts: 364
Joined: Mar 2013

Glad to see you are Thriving too and you have found your voice.  love it.  Prayers and hugs.  Anne

txtrisha55's picture
txtrisha55
Posts: 696
Joined: Apr 2011

Congratulations!  It is a journey I know but two years is great and may it contuniue.  trish

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

We do seem to be following a similar path. I am looking forward to hearing that  your Cat scan is normal and the gallbladder polyp is insignificant. Like you, I am feeling good. I try to get plenty of rest, I eat well and swim as much as possible. I appreciate every moment of every day!

Warmly,

Cathy

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

 

I hope to reach that magical 5 year mark like you have done NED! Way to go girl!

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