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When are you a year NED?

Posts: 83
Joined: Apr 2010

Is it after the surgery, or after the treatment is finished or some other date entirely?
I don't think I have ever heard any information on this topic. Thanks for any help you can offer.


upsofloating's picture
Posts: 473
Joined: Dec 2009

That's a tough one - but I imagine it is from the last time there was evidence of disease. Staging surgery results could definitely factor in. If cancer was well-contained and minimal, it could be from surgery. However, if surgery was determined to only have removed visible cancer, but perhaps pelvic wash was positive, then post treatment or at time ca125 also normal would be dating time. It may be an individual case determination rather than a generality.

bots's picture
Posts: 53
Joined: Sep 2009

According to my oncologist, one starts counting after the last treatment.

libby.sparks's picture
Posts: 12
Joined: Nov 2015

Good afternoon everybody. 

I am so happy to read about the women who are posting their 5 year survival anniversary. What a lift!! Thank you all for posting.

I am reading The Definitive Guide to Thriving After Cancer (Alschuler & Gazella). Thinking about adopting some of their recommendations (diet, dietary supplements). Did any of you endorse taking antioxidant/inflammatory dietary supplements (Omega 3 fatty acids, Tumeric/curcumin, Glutathione, Green Tea, CoQ10)? Is there anything else you've found to help arrest cancer growth?

Here's my story:

January 2015-I ran 50 miles (5K, 10K, half marathon, marathon) over 4 days in Disney world. Felt great. Best race times in years.

April 2015-ran Paris marathon. Noticed mild pelvic pressure, thought I was getting a UTI, but had no urinary symptoms. This went away and I chalked it up to nothing serious.

May June July 2015-developed rapidly worsening bowel changes. Saw doctors in june (internist and GI), neither of whom thought of endometrial/ovarian cancer. The GI diagnosed pelvic muscle dysfunction and ordered a dynamic MRI of the pelvis to assess the muscle function. July 28 MRI pelvis showed an 11 cm uterine mass, abutting the spine, causing bowel obstruction. As a nurse practitioner, I looked at my own films, realized quickly that I was in deep trouble and scheduled an appt asap with GYN oncologist at Johns Hopkins where I work. 

August 4 saw Dr. Edward Tanner (GYN Oncologist). At first he was a bit dismissive about the bowel symptoms. I insisted that we pull up my MRI images. He did a pelvic exam, and turned as white as a sheet. Finally my symptoms were taken seriously. I wonder how many times women's symptoms are dismissed, their cancer progresses rapidly and they become inoperable. So sad to think about this.

August 5 CT scan showed metastasis to bladder, bowel, Fallopian tubes, ovaries, small spot on liver, implants on both diaphragms. CA125 1280 (normal 0-30).

August 7 surgery: radical hysterectomy, ovaries, Fallopian tubes, bowel and bladder resection with clean margins, implants removed from diaphragms and a surface lesion on the liver. Omentum removed. Small intestines brought to the outside (ileostomy) to allow the bowel to rest following resection. 52 lymph nodes resected. One of the left pelvic nodes showed "possible patchy cancer); otherwise none of the lymph nodes showed evidence of cancer. There was very little to no invasion of the uterine tumor (to the myometrium). These are both positive prognostic indicators I think.

August 20 developed abdominal distention/swelling, nausea, vomiting. Hospitalized. found to have bacterial peritonitis-likely from leaking stool through a colon suture. The infection resulted in massive fluid to collect in my abdomen. This was drained over the next week or so. I lost 30 pounds of weight-mostly fluids and proteins. Was really worried that I could die from malnutrion since I hadn't really eaten much all summer, after surgery and now this. 

Sept 1 First chemo Taxol and Carbo. Reaction to Taxol. Horrible.

September 20 developed recurrent abdominal pain-intermittent and severe. CT abdomen showed dilated small intestines. Diagnosed with small bowel obstruction-partial. Treated by withholding food for a week. The ileostomy was a real issue-losing 2 liters of fluid a day. I was treated with IV fluids three days a week to keep up with the fluid loss through the ileostomy.

September 29 Second Chemo. CA125 26

October 20 Third chemo cancelled. Hospitalized for electrolyte imbalance, persistent abdominal pain, nausea, vomiting, dehydration. Small bowel obstruction again noted on CT scan. CA125 13

October 23 Surgery to address small bowel obstructions. There were 5 areas where the bowel had kinked. The surgery entailed bowel resection. Instead of having about 20 feet of bowel, I have 9 feet. The ileostomy was reversed (thank God).

November 17 Chemo 3. CA125 15.

December 4 today. I am eating, drinking, and pooping :). I feel really great and have loads of energy, well compared to my energy status over the last 6 months. 

I'm sure that most or all of the women diagnosed with USPC, have difficulty reconciling their diagnosis, prognosis, and survivability, particularly in the early days. It's hard to stop thinking about what is going to hit me next. If I can get well enough to go back to work, that will help take my mind off the future and I can return to living today. I think that's important.

Anyway I would love to hear how you are coping, what you are doing to arrest the progression of cancer and any other words of wisdom.

Most grateful for this group. 



debrajo's picture
Posts: 1095
Joined: Sep 2011

Glad you found found us, so sorry you had to!  Wow. just Wow!  You have really  been through the mill!  I am UPSC 1a/b, grade 3, six rounds of Taxol/Carboplatin, five rounds of internal radiation.  I am at M.D. Anderson in Houston,Texas.  In Oct of this year, I had my fifth year of NED!  I have had an easy time of it compaired to you and a lot of the ladies here!  Of course, I whined a lot...still do, but with chemo-brain, I forget how much!  Welcome aboard, we are all here to help!  Best, Debra(Jo)

Posts: 1547
Joined: Jun 2012

I feel overwhelmed just reading what you have been through.  There have been several good posts on diet and supplements that you could do a search for.  Here are some ladies who have written things on the subject that I have found interesting:  Tethys41 (mostly on the ovarian board.  She doesn't write much anymore but checked in recently to let us know she's ok), artist44 and Hybridspirit.  You could also PM them.

I wish you the best and look forward to getting to know you.

EZLiving66's picture
Posts: 1471
Joined: Oct 2015

I'm so sorry to hear about all you've been through and I agree that many women, including myself, had to fight to get the care we needed and deserved.  I'm 63 and was diagnosed with UPSC Stage II, grade 3 after my hysterectomy on September 30th and will have my third chemo next Tuesday.  I've had some complications...a UTI, an infected port, esophageal erosion, bad reaction from the Neulasta and pneumonia in my right lung, but life continues.

Take care,


Editgrl's picture
Posts: 903
Joined: Jun 2015

You have gone through so much in such a short amount of time.  Glad to hear that you are feeling great with lots of energy.  In addition to the ladies ConnieSW mentioned, RoseyR has had many posts on diet and supplements that I have found helpful.  She doesn't post much either anymore, but checks in every once in a while.


sunflash's picture
Posts: 197
Joined: Aug 2011

Hi Libby, 

So sorry for all you've been through, but welcome to the group!

I'm another UPSC sister, diagnosed in 2011, so moving towards the 5 year mark with no recurrances. 

This is a very scary diagnosis, and I agree with you that work definitely keeps your mind busy with other things.....and off your problems. I'm a teacher and kept working through chemo, taking days off during the chemo week.

It was the best therapy for me, and was recommended by my wonderful doctor. I stayed healthy during treatment even though I was surrounded by students and teachers getting an assortment of illnesses such as colds, flu, strep throat and the stomach virus. I had the students scrub their desks daily with clorox spray, wash their hands frequently, and sent them to the nurse if they even complained of a headache. It worked!

Let us know of your progress.......sending hugs and prayers your way! 

Posts: 514
Joined: Aug 2014

Oh Libby , your post frightens and educate at the same time, while reading I impulsively hugged all of my body in a protective way. This day ,this moment , this Cancer frightened me. This feeling of fear  was new for me, made me uncomfortable . I swiftly rejected fear, it threatens to weaken. That which made me strong  has the power to totally rip that strength away from me if I let it ,I won't let it, One day at a time is how I'll do this beast and  life , reinforced by your god awful journey, Thanks to the creator all that turmoil left you in a good mental place despite the mountain climbed. 

I admire your strength and your willingness to share, Welcome Libby.we were getting low on 'food for thought' LOL. Yea you got me thinking of Cancer again .Aaaaah!!!

Nuff love, Moli

Hopeful162's picture
Posts: 82
Joined: Sep 2014

I'm sure 2015 is a year of your life that you would rather forget, but it is great that you seem to have turned a corner and can now look with more optimism for the future. UPSC is a scary diagnosis, but it can be overcome!

I was diagnosed Stage 1, Grade 3 UPSC a year ago in September, 2014, so I will be coming up on my one year NED anniversary in January (yes, dates are counted from the last day treatment is finished) and consider myself very fortunate. I will continue with surveillance for five years, but I am in such a better place now than when I received the shock of that first biopsy and then cancer surgery as I had absolutely no symptoms. I can certainly relate to your initial surprise, only to have one more setback after another as the year progressed. So sorry! How old are you, if I may ask...It is good you have found this forum. Welcome!

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

You have had a very hard year.  I am sorry you had to come here, but this is a good place to get advise and comfort.  I had no symptoms, went to the doctor with a yeast infections and "Surprise"  I was diagnosed with stage 4 serous papillay endrometrial andocarcinoma 3 years ago.  I have had 2 short periods of NED.  My cancer has metastisized and is finding new places to hide.  I have been treated with 27 rounds of chemo, 28 external radiations and 2 internal radiation.  I have many more good days than bad.  What I thought was the end of my life has actually turned out to be a very blessed life.  cancer has taught me a lot about love and living.  My faith in God is what has gotten me through this.   I talk to Him alot and that helps my attitude a lot.

I taught school for the 1st 2 years of this journey and my mind was diffinantly buzy with other things than cancer.  I did use a lot of hand santisizer and washed desks.  I never caught a thing from the kiddos, but caught the worst cold ever from an adult who came to church SICK..  Hugs and prayers to you as you continue on the roller-coastr ride.  Lou Ann

Anonymous user (not verified)

Wow Libby, I went into this cancer uninformed, but quickly caught up somewhat.  In reading your story, I was struck with the fact that you're a nurse practitioner.  How scary, and yet how fortunate that you were able to insist on not having your symptoms dismissed.  You're a tough lady, as I have quickly learned are so many of the wonderful ladies on this forum.  I welcome being able to talk with you also, and hope the next year results in good progress for us all.

TeddyandBears_Mom's picture
Posts: 1749
Joined: Jun 2015

So glad you found us! What a ride you have been on. Sorry you had to take it.

There is a thread titled Ladies Going Through Chemo that I think you will find very helpful.  Those of us that are in current treatment are documenting our impacts.

I hope you find many more good days than hard days going forward.

Take care of yourself.

Love and Hugs,


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