Newbie

Welcome to our little club where nobody wants to be a member - LOL!!  NED means No Evidence of Disease and yes, it is a wonderful thing.  I'm Eldri, 63, in Green Bay and was diagnosed in August of 2015.  Total hysterectomy on September 30th and diagnosed with UPSC, Stage II, Grade 3.  I made it through three chemos before I almost died from the side effects.  On March 30th, I will have NED for six months!!

Love,

Eldri

janh_in_ontario said:

NED

Hi Brighton and welcome to the most informative forum ever! You will find ladies here who have been through what you are going through, friends, spouses and children of uterine cancer patients as well. We help each other as best we can with honesty and a safe place to say or ask ANYTHING,

Ned means No Evidence of Disease and is a phrase we all long to hear!  I hope you have a NED experience soon and congrats on finishing the chemo!

 

Jan

 

 

 

 

Welcome to the board! Glad you found us.

Congrats on being almost done with chemo. Major milestone. Please come back and let us celebrate your completion after Wednesday. :-)

I consider myself as NED the day after my surgery since everything was removed and I had no spread.  I was a phase 1A / grade 3 serous. So, chemo and brachy were done as a precaution... My plan is to celebrate my 85th birthday 26 years from now.... My youngest brother tells me I'm being greedy. ha ha ha ha ha....   Since my mom lived under stress her entire life, ate all the wrong things, had just about everything in the world wrong with her, (no cancer though) and she still managed to live until 78, I feel like it is only fair for me to live a bit longer than she did. Time will tell on that front. I'm not in control of the final decision so I'll continue to celebrate every day that I wake up happy and healthy!

Please feel free to ask any questions as you progress through your treatments and post treatments. Someone here will most likely have an answer for you. Good luck on your last treatment. I hope it is gentle to your body.

Love and Hugs,

Cindi

my gyn-onc surgeon plays in a rock band called NED. Check it out on YouTube.  They have been interviewed all over. PBS did a documentary. 

Bestisyettocome said:

my mom

Hello,

reading your post is helping me feel more optomistic! My mom just heard she has UPSC but we don't any other info as of now. She is meeting with gyno oncologist next week to discuss plan. I am just wondering what your first symptom was? I am so hoping she caught this early. She noticed bleeding in late december and a little back pain otherwise healthy. thanks!

Hi Best!  Welcome to you and your mother to our little "exclusive" club.  I really didn't have any symptoms except once in awhile I had this pain on the left side of my stomach.  Come to find out, it was not the cancer but diverticulosis (a little pocket in my colon) that causes that little pain.  Anyway I had to fight to get referred to a gynocologist to do an endometrial biopsy which showed regular old endometrial cancer.  After my hysterectomy they found it was UPSC and it had spread to my cervix (even though my PAP the week before had come back negative).

Hopefully they caught your mom's early but even if they didn't, there are several ladies here with Stage III or IV and are still doing great many years later.  

Keep in touch and let us know how your mom is doing!!!

Love,

Eldri

Bestisyettocome said:

my mom

Hello,

reading your post is helping me feel more optomistic! My mom just heard she has UPSC but we don't any other info as of now. She is meeting with gyno oncologist next week to discuss plan. I am just wondering what your first symptom was? I am so hoping she caught this early. She noticed bleeding in late december and a little back pain otherwise healthy. thanks!

Welcome to you and your mom.  This is a good place to me in a very hard time.  Lots of good information from a group of great ladies who are or have been through this.  I was diagnosed after I went to the doctor with  yeast infection.  No symtoms at all.  I am stage 4 high grade papillary serous endrometrial andocarconoma Diagnosed in Aug. 2012.  i have many more good days than bad, and have found that truely have much to be thankful for.

hugs and prayers to your mom and you, Lou Ann

Brighton said:

UPSC

ok girls another question.  What is UPSC?

Tomorrow is my last treatment and I am so emotional.  Dont know why, I think it may be after tomorrow I go from fighting cancer to waiting.  

My cancer center has a bell you ring at the end of treatment, its kinda a big deal everyone gathers and cheers.  Every time I think about ringing the bell I want to cry.  Am I a big cry baby or has anyone else had this feeling?

Mary Ann 

UPSC = uterine papillary serous carcinoma - it's an aggressive form of uterine cancer and they treat it like ovarian cancer.

I hope you ring that bell loud and long and cry your eyes out - you're entitled!!!  (((Mary Ann)))

Love,

Eldri

Brighton said:

UPSC

ok girls another question.  What is UPSC?

Tomorrow is my last treatment and I am so emotional.  Dont know why, I think it may be after tomorrow I go from fighting cancer to waiting.  

My cancer center has a bell you ring at the end of treatment, its kinda a big deal everyone gathers and cheers.  Every time I think about ringing the bell I want to cry.  Am I a big cry baby or has anyone else had this feeling?

Mary Ann 

I do understand that feeling of all of a sudden being cut loose and left to fend for yourself.  During my treatments, I was seeing doctors regularly, getting regular blood work and felt well monitored.  All of a sudden, that all ends.  Now what?  I've begun working with a naturopathic oncologist to help me keep treating myself, in a sense, to keep the cancer from coming back.  And I am going through that process where every ache and pain gives me pause.  I'm hoping that I do get over that phase, or at least find a way to deal with it in a less stressful way.

But still, ring that bell and be happy that this step is over and done!  Congratulations!

Chris