CSN Login
Members Online: 4

You are here

Newbie

Brighton
Posts: 15
Joined: Mar 2016

Hello, I just signed in and have been reading all the post.  Great information, and very uplifting.  I wanted to introduce myself.  I am 65 years old and have Uterine Cancer.  Had surgery and everything removed on Nov 2, 2015 I have completed 5 rounds of chemo and have my last one is on Wed.  I was wanting to

know what NED means, from the text I think it must be a good thing.  Thanks in advance 

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

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

Brighton
Posts: 15
Joined: Mar 2016

Thanks for the info on NED.  I wish I had found this site sooner.  So much good information.  Congradulations on 6 mo NED.

Hugs

Mary Ann

Bestisyettocome
Posts: 1
Joined: Mar 2016

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!

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

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

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

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

janh_in_ontario
Posts: 125
Joined: Sep 2010

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

 

 

 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1774
Joined: Jun 2015

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

Brighton
Posts: 15
Joined: Mar 2016

Hi Cindi, looking forward to coming to your 85 th Birthday.  I will get the directions to it in 25 years, until then THANKS for the encouragement.

Hugs

Mary Ann

Brighton
Posts: 15
Joined: Mar 2016

Jan,  Thanks for the welcome!! It is a good site.

hugs

Mary Ann

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

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. 

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

glad you found your way here, but so sad you had to join this club.  You will find this a good place to be.  The encouragement and support is awesome.  It is so much better to hear from someone who has been through this instead of statistic from the Internet.  I had a hard time figuring out all th abreviations too.  NED is the one everyone wants to hear.  Hoping your journey to NED is a short one.  Hugs and prayers, Lou Ann

Brighton
Posts: 15
Joined: Mar 2016

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 

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

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
Posts: 15
Joined: Mar 2016

OH Elri, I rang it hard and cried even harder.  Thanks for the explaniation of UPSC.  That is the kind I have also. 

Have a Wonderful Healhy Day

Hugs Mary ANn

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

Ringing the bell IS a big deal! It is a celebration of your victory over cancer! I think I embarrassed my husband when I rang the bell after my final treatment. I rang it long and loud and I did almost cry from the relief of knowing that this part of my battle was over. Next month I will be celebrating my 2 year anniversary of that day and, if I could, I'd ring that bell again! 

So ring that bell and cry if you want. You will be beginning the rest of your life!  Sandy

Brighton
Posts: 15
Joined: Mar 2016

Sandy, I did ring it and did I ever cry, and it wasnt a prettty cry.  They took pictures and my face is all scrunched up and tears all over.  And since I dont have nose hair. my nose was running like a hose.  I may have been ugly, but it was a beautiful thing to ring out the treatment.  I am blessed.

Today is the first day of my post treatment life, and now I can get busy living.  Thank you for the response

Hugs Mary Ann

Anonymous user (not verified)

My last chemo is next week.  I have pictured myself ringing the bell, and each time I get emotional also.  It's a big deal to be done with chemo and I guess that explains why.  I normally am not emotional about stuff, but this time I am.  I also have a dear departed brother in law who didn't get to ring the bell, but was so happy for others when he heard the bell (he was diagnosed with terminal Klatskin cancer in the beginning).  The last swing I take will be for him.  Hugs Nancy

Brighton
Posts: 15
Joined: Mar 2016

I was emotional, but I rang it hard, and cryed hard.  You can too, on a shalllow note,  wear wateproof eye liner, and remember to wipe you nose and eyes in case they take a picture.  I didn't and oh boy, I wish I had. 

Best to you my friend. Let us know how it goes.

hugs Mary Ann

Brighton
Posts: 15
Joined: Mar 2016

I just picked up a whistle my grandaughter left and blew it for your brother in law.  I know its not the same but the though is there.

Take Care and hugs to you

Mary Ann

Anonymous user (not verified)

That is so sweet to blow the whistle for Larry.  My sister (his wife) is my chemo buddy.  I tried to insist she not go with me, knowing how hard it would be, but she wouldn't hear the word no.  He was a patient for almost 5 years at our local University training hospital, and his doctor was amazed that he lived almost 5 years after given a 6 month life expectancy.  He was a guinnie pig for different chemo's and treatments, and his doctor said they gained valuable information on how to treat his cancer.  And, of course, an inspiration for me to stop whining and move on.  And big congratulations on finishing your treatment.  Savor the moments and look ahead to the future.  Hugs Nancy

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Mary Ann, welcome and so sorry that you've had to join our group. I have 3 rounds of chemo left but I already feel that same trepidation about treatments being over.

It's like you put all of your time and energy into fighting this beast, you even have an entire team (or two) of people in the fight with you and then - poof - it stops very suddenly.

I think maybe it's a little PTSD? I will definitely try talking to a professional, staying active on this and other forums and continuing to exercise daily. Getting outside with my dogs also seems to help put everything into perspective.

Congratulations on ringing that bell. It's an important milestone that let's you look back to see how strong you are and far you've come!

Wishing you strength and good health,
Kim

 

Brighton
Posts: 15
Joined: Mar 2016

Kin, good luck on your next few treatments.  I found the first one so scary, because of the fear of the unknown.  Next ones were the same, I just knew what to expect.  But the last one I had myself worked up into a tail spin.  I did talk to a professional about it, helped.  He explained my mind and body were in a "fight or flight mode" feeling a little yuck, but pushing forward just to get to the end keeping emotions high, again fear of the unkown come up with last treatment.  I did it and you can too.  But this morning I feel like a dog chasing a car, after he catches it "now what"  I guess I will join the survivors club.  Now that's a club I want to stay for a long time.

Hugs Mary Ann

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

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

Brighton
Posts: 15
Joined: Mar 2016

Chris, I have had a great surport group.  Great Dr and his team are the best.  My family [4 grown children and their families] and several true dear friends, and many acquaintances and they have all been wonderful.  Yesterday was great 3 cards in the mail 2 vases of flowes delivered, and dinner make for me.  All with congradulations for having it over.  Well it was wonderful, but its not over, "I HAVE ONLY JUST BEGUN TO LIVE" I am blessed in so many ways, but just feel a little sorry for myself.  I know I dont walk alone, I just have to remember that.  There have been many day I only left one footprint in the sand. [know what I mean].  Sounds like you are taking care of yourself with the natural Dr.  I hope the Great Healer eases your mind.

Take care and hugs to you

Mary ANn

 

 

Subscribe to Comments for "Newbie"