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NED at 5 1/2 years...

adman's picture
Posts: 338
Joined: Jul 2012

just had my 5 year scans and bloodwork, a few months late. So grateful to report that my oncologist has released me and said I’m cured At 5.5 years.  

I’m a little uneasy about that given the sneakiness of this disease. 

Still, I AM very grateful for my NED Report & the support this forum has provided to me the past 6 years. Thank you to everyone. 

God Bless.

icemantoo's picture
Posts: 3351
Joined: Jan 2010



Talk to your doctor about lesser scans. After 5 years I have had ultrasounds each year with a CT thrown in at year 10. That should connect any snealy thing in the bud.  At 15 1/2 years now.




Darron's picture
Posts: 310
Joined: Jun 2013


I am a trial patient, so I basically have to continue scans per the trial schedule, even though I am nearly 4 years NED. Do you do ultrasounds because insurance won't pay for a scan? Thinking out loud, I almost cant imagine not having a scan every year.

adman's picture
Posts: 338
Joined: Jul 2012

Receiving scans every year at my age (54) would mean I would be exposed to radiation for another 20-25 years, on top of what I’ve had the past (5) years; 3-4 the first few years. I think a lot depends on the stage/ grade of your tumor at the onset. 

According to my Dr. that isn’t a great idea. I do beleive at this stage, a scan every (3) years does make sense. 

The ‘ultrasound’ is a good isea, but according to my Dr., RCC will show up somewhere else, so how do you do an effective ultrasound to cover every area of the chest, abdomen & pelvis ??

Canadian Sandy's picture
Canadian Sandy
Posts: 718
Joined: Jul 2016

Congratulations! May you be Ned for many more years.


Jojo61's picture
Posts: 1310
Joined: Oct 2013

Congratulations! I agree with Iceman....get some ultrasounds as follow up.



APny's picture
Posts: 1998
Joined: Mar 2014

So happy for you! But I agree with everyone; I would continue getting checked up maybe once a year with an US. Or even every other year.

Jan4you's picture
Posts: 1327
Joined: Oct 2013

Glad you made it! 

My surgeon told me he checks for elevated signs of cancer in a blood test.

Maybe you can ask to have that done instead of a scan?

Celebrate your life!

To you and yours!


lobbyist0724's picture
Posts: 467
Joined: Sep 2016

Hi Jan, do you knkw what specific sign he is testing? Would recommend it to my doc as he onky look at the standard value such as GFR and creatine. Thanks.


Jan4you's picture
Posts: 1327
Joined: Oct 2013

Hi Carmen~

I believe the test is caused Lactate Dehydrogenase (LDH)

along with Metabolic Panel. Look up the test and add the word cancer. 

If the number is high, I guess, it means you could have more cancer cells is my understanding. 

Seems our immune system is always fighting off cancer cells, even for those who never had cancer. 

Talk to your doctor about it. I never knew he was using this test till I asked him.


lobbyist0724's picture
Posts: 467
Joined: Sep 2016

Thank you Jan! Happy New Year! Carmen

foroughsh's picture
Posts: 779
Joined: Oct 2014

Congratulations, thanks for sharing

I'm so happy for you


AnnissaP's picture
Posts: 632
Joined: Sep 2017

Awesome. Congratulations!!!

Posts: 111
Joined: Nov 2017

Congrats and enjoy that NED!

daisybud's picture
Posts: 512
Joined: Jan 2016

 Very happy for you

stub1969's picture
Posts: 917
Joined: Jul 2016

For the update and sharing your good news. 


Kat23502's picture
Posts: 179
Joined: Feb 2016

Great news!

foxhd's picture
Posts: 3183
Joined: Oct 2011

Keep doing what you're doing. I think randomly looking for detectable tumors with US isn't worth the effort. You would probably be aware of something wrong, before an US would find a met. Stick to scans with a progressive taper that you are comfortable with.

marosa's picture
Posts: 333
Joined: Feb 2015

That is great news we all love hearing!  

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