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N.E.D.! Whoopee!

seatown's picture
Posts: 262
Joined: Sep 2012

No evidence of disease: how long I've waited to hear that. Saw the surgeon for follow-up today. He was talking around that designation, so I asked what it takes to be NED. "You have no clinical evidence of disease," he said. "In my notes I'll be describing you as NED."

The benchmark CA125 cancer tumor marker has gone up a couple of points to 17, per the blood drawn last week. Not to worry, he says. Worry when it doubles & then doubles again, over any time interval. I told him the oncologist has me persuaded not to be concerned at all unless it leaves the normal range. The surgeon said 40% of patients in my situation will have recurrence. Does that mean 60% can be considered cured? I couldn't think fast enough to ask. And I’m always mindful of what the oncologist said almost exactly a year ago to the day: “You can certainly expect remission, but it will always be a question of remission for how long?”

The surgeon also said Medicare has a new rule wherein they'll pay for 4 PET scans in your lifetime (@ $2000-$3000 a pop). I've already had 2. So, he said, PET scans now have to be apportioned wisely. The PA said airily, when I asked what to expect when I go off Avastin® at the end of the year, "Oh, we'll do PET scans & labs probably every 6 wks." The surgeon said the old-fashioned pelvic exam I had today is probably the very best means of monitoring. 

I know you're all happy for me.  Thank you. Let's hope my good fortune continues, and I fervently wish the same to all of you.



Alexandra's picture
Posts: 1310
Joined: Jul 2012

I am very happy for you. Enjoy! And you can have my license plate



Posts: 152
Joined: Feb 2011

I cannot tell you how pleased I am to hear your news, it is the sort of news I wish for everyone on this board, truely wonderful X

Posts: 75
Joined: Jun 2012

Great news,Seatown. I am so happy for you. I had my Pet scan Friday and see the dr. Wed. Will keep you posted. Take care.


Rosamond M
Posts: 86
Joined: Apr 2013

What fantastic news this is for you

Enjoy your welcome rendezvous

With NED, and dance with glee.

 Huge congratulations from me!



seatown's picture
Posts: 262
Joined: Sep 2012

Thanks, especially for your poem. I'm very impressed with someone who can rhyme with "rendezvous." And thanks to everyone!


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