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Scanxiety

Ktmg
Posts: 24
Joined: Feb 2017

Getting my next follow up scan tomorrow. I'm just feeling ....eery.

I know the first one (right after procedure) was fine, but what if it comes back? What if the last scan was wrong?

Anyone else have these feelings?

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi Ktmg,

If your tumour was stage 1 or 2 and your first scan was clear then I think it is very unlikely to have any recurrance.  Of course I am no expert.

Waiting for scan results is eery. I think everyone feels it.

Steve.

APny's picture
APny
Posts: 1987
Joined: Mar 2014

I always get scanxiety. I hope all went well today and Uncle NED paid you a visit.

Hd67xlch's picture
Hd67xlch
Posts: 148
Joined: Apr 2016

 Im waiting for my results to show up on the hospital patient portal so I will know where I stand before I even see the DR next week. Im on 6 + years of scans,  the anxiety doesnt ever go away, but it does get alot easier after a few neds. But you got to stay vigilent and keep having the scans because regardless of stage it can come back at any time, good luck.

Ktmg
Posts: 24
Joined: Feb 2017

Are you at least down to annual scans and not every 3 months?

Hd67xlch's picture
Hd67xlch
Posts: 148
Joined: Apr 2016

I was every 6 months the 1st two years, then years 3-5 once a year, then it metastisized to my lungs at the end of year 5. Then I had two lung surgeries to remove it, and have been on scans every 4 months for over a year now, my last 2 scans have been NED again, waiting on results from this weeks scans, hoping for the best. Good luck.

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Hoping for NED results for you Hd67!

Hd67xlch's picture
Hd67xlch
Posts: 148
Joined: Apr 2016

Granted I  dont see the Dr till July 10th, but my scans on the patient portal said no detrimental changes compared to previous scans in March. March is when the Surgeon and Oncologist told me I was NED again, so thats 3 NEDs since my last surgery. Had a different scan Dr read them this time which I hate, since  the last few years it was always the same Dr reading them, and they all word things differently, but it sounds like Im still good.

Hd67xlch's picture
Hd67xlch
Posts: 148
Joined: Apr 2016

from all my scans 2 weeks ago, Dr said still NED, next scans in December 2017, thanks to everyone who wished me luck.

lobbyist0724's picture
lobbyist0724
Posts: 418
Joined: Sep 2016

Congratulations, keep the NED coming!

daisybud's picture
daisybud
Posts: 490
Joined: Jan 2016

Great news!

Ktmg
Posts: 24
Joined: Feb 2017

I'm still at 3 months.

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Hd67, KtmgWishing you both Ned NED results

Ktmg
Posts: 24
Joined: Feb 2017

It wasn't NED.....

CRashster's picture
CRashster
Posts: 236
Joined: Mar 2017

sorry.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Here for you, Ktmg. We'll be here all the way. What happened?

Sending you healing hugs,

Jan

Ktmg
Posts: 24
Joined: Feb 2017

They found an area of "enhancement" but they wont declare it a recurrance. They want to wait three months and do an MRI. I'm not into waiting, but I'm also not into doing tests for no good reason. So, I guess I'll wait.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

I got one of those, too. The doctor pointed out that it was by the surgery site and they'd zapped one edge / margin (cauterized is actually what he said, but I think zap has a little more super-hero feel to it). Anyway, for now he's calling it scar tissue, hope it doesn't turn out to be "scare" tissue. 

Whichever, they're keeping an eye on us, not that long between scans, which is a good thing. Here's to vigilant care teams!

Ktmg
Posts: 24
Joined: Feb 2017

I wonder how they tell the difference between scar tissue and a new growth?

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

This is most likely Kat's territory. 

From my uneducated brain comes this thought: Scar tissue is just going to be there, new growth is gonna eventually be doing some obvious growing (Was that a "wrong answer" buzzer I just heard? Probably...).

Kat?

lobbyist0724's picture
lobbyist0724
Posts: 418
Joined: Sep 2016

I was told that tumor has vascular tissues and scar tissue doesn't.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Mature scar tissue isn't particularly vascular. Healing tissue that's new-ish scar tissue is more vascular. Give it some time for the scar tissue to mature and it will be not-so-vascular.  But for a first-time scan? I think we're pushing it to expect the scars to be "all grown up" already. 

In general, little bitty capillaries have a job of getting the good stuff in (oxygen on the red blood cells, infection-fighter white blood cells, nutrients, etc) and the bad stuff out (carbon dioxide, other cellular wastes, etc). When the jobs of healing and scar construction is going on, I figure there's gotta be a whole lot of that happening.

I think the theme of my external incision scars is, "We'll get there." The biggie is still visible but WAY smaller, there's another of the smaller ones still quite visible, then the others I can see because I know where they are/were.  So I assume it's similar inside. 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

it isn't as bad as it could be. God bless everyone who remains ned. Great luck and fortune. But so many have mets at some point. The fact that you show disease probably means small mets had been released earlier. And like many, you will begin a drug like an antiangiogenesis or an immunolgic. I believe the sooner you start the better off you are. Find the lowest effective dose.  Life is good, your future looks great.

Ktmg
Posts: 24
Joined: Feb 2017

Thank you

Hd67xlch's picture
Hd67xlch
Posts: 148
Joined: Apr 2016

Was it on the same kidney you had the ablation on? If so thats about as good as it can get if its going to recur and isnt anywhere else. Id guess if it returns to that kidney you would probably just have that kidney removed and thats the end of that. Id try to be positive and think that they have not declared it a reccurance, and try not to let your mind drive you crazy, the mental part is worse than the cancer.

donna_lee's picture
donna_lee
Posts: 963
Joined: Feb 2009

rSo, what do you do?  They don't use those simple terms, but I've heard that result twice.  It's scary, maddening, and every other swear word you can throw at it. After you wipe your tears and tell your spouse, you call back and tell them you want confirmation and get the next test set up ASAP.

First Surgery was in 2006 and they removed a lot of cancer and all or parts of numerous organs.  Regular CT scans every 3 months, and the difference in one little node between scan 3 and 4 was enough to trigger the NOT NED Dx. The following week I had a fine needle aspiration biopsy, got the results in 2 days, and called my surgeon's office.  He was at an East Coast conference and his secretary had sent text on a blackberry.  He texted back to contact her and get the surgery scheduled...for two weeks later.

Skip ahead to spring of 2008, and the CT gave similar results, only this one was in a difficult place so I had to wait a week for the mobile PET scanner to be brought to our region. The node lit up with the concentrated sugar solution; decided to have a local surgeon remove it and away we went.

You used the phrase, "what if it comes back."  Well it was never really all gone.  Cells had escaped from the primary tumor and hadn't enlarged enough to show on any kind of test.  What do you do now?  What ever is necessary to remove it from your body has been my attitude.

And thus far, it's been 8 years since the last recurrence.

Best of luck in your decision making and Hugs in the meantime.

donna_lee

 

daisybud's picture
daisybud
Posts: 490
Joined: Jan 2016

I had also had a hyperintense area near the spot of tumor removal on 6 month mri followup that said favored scar.  At one year just said no signs of reoccurence.  I was told just scar tissue  and no need to worry.

Kim

Kim

Deanie0916
Posts: 316
Joined: Nov 2016

Hang in there...I have scanxiety a lot. Doesn't change the result. Anyway, my prayers are with you, God bless.

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