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My first six-month follow-up scan (scanxiety is weird)

eug91's picture
eug91
Posts: 99
Joined: Jan 2019

After my neph six months ago, this is my first time going through this. I mistakenly assumed I would get a yes or no answer - "congrats, no evidence of disease" or "unfortunately, there is evidence of disease." 

Instead, I got "good scan". My abdomen CT scan showed everything looked healthy, except for "mild soft tissue stranding in the renal bed". Radiologist and my doctor think it's only inflammation from the surgery, but it might not be, so we'll be keeping an eye on it. 

So it's... I don't know what to call it... PROBABLY NED? Maybe NED...? 

Scanxiety is weird. For weeks now, I just wanted to get the scans over with. Now that they're done, I want to hurry up and get the next scans over and done with. 

Oh - and one added anxious moment this month. I went to see about genetic testing. Had a great talk with the doc, filled out the paperwork, and sent in my blood. Then I got an ominous-sounding voice mail asking me to immediately call the doctor's office about my genetic test. I was kinda terrified about what they'd discovered. Turned out the reason they called: the company had LOST my blood sample and were sheepishly asking if I'd mind sending in another sample. Anyways, here's hoping this second sample doesn't get lost. 

Also I'm kinda worried where my blood sample went. I'm imagining some thief stole a box off the porch of the genetic testing company - and trying to imagine how disappointed the thief was when he/she found a vial of my blood. 

Anyways, I'll take my probably NED and try to stay upbeat. Hope everyone enjoys a healthy summer! 

 

WeAreWarriors's picture
WeAreWarriors
Posts: 12
Joined: May 2019

i am only 6 weeks out but the thought of even walking back in to the hospital makes me nervous. My first scan will be in October. Last October I was told my CT was normal, but there was a 1.5cm tumor they decided wasn't important enough to inform me about. I learned how important it is to ask for a copy of the report of the scan so that you can see exactly what is there, not someone's interpretation of what the patient needs to know.

I wish you a lifetime of clear scans!

APny's picture
APny
Posts: 1883
Joined: Mar 2014

What does "keeping an eye on it" mean? Do you wait another six months or will they want to check on it sooner? I can see being a bit anxious and I really wish you didn't have to worry about this. Most likely it's nothing more than an inflamation but still, who needs more stress? And they really need to work on that "call us immediately" bit... sheesh, would have scared the heck out of me. Keeping my fingers crossed that all goes well for you. And you too, WeAreWarriors.

lobbyist0724's picture
lobbyist0724
Posts: 372
Joined: Sep 2016

Hi Eug, I will take it as a NED since they "didn't" find any disease. But on the scanxiety side, if it really bothers you, I would request a CT in 3 months or at least an US. My doctor ordered US for me every 3 months for the first year for the peace of mind. 

Best wishes and good health!

eug91's picture
eug91
Posts: 99
Joined: Jan 2019

I have an appointment with the doctor to discuss on Monday. 

lobbyist- Thanks! It never occurred to me to ask for an US in 3 months. I'll mention that to the doctor and see what he says. 

Thanks everyone!

Bay Area Guy's picture
Bay Area Guy
Posts: 374
Joined: Jun 2016

Scanxiety is indeed weird.  I’m three years out from my surgery and every time a scan comes due, I still get wound up and end up with all kinds of psychologically induced aches and pains.  During the day, they’re easy to control, but at night, all the crazy thoughts come out.  Then I get the x-ray, blood test and scan and boom, all the aches and pains evaporate.

LOL.  If I only had a brain.

Allochka's picture
Allochka
Posts: 837
Joined: Nov 2014

Glad about NED (I take it as NED). Everyone gets "lets keep an eye on it" at one point or snother. My husband was being watched for slightly enlarged mesenteric lymphnodes, and for angiomiolipoma. And some polyps in gallbladder. All turned out benign.

He doesn't worry at all :-) I worry for both of us :-)

Floybrian
Posts: 8
Joined: May 2017

Hey, I know how you feel. Just like you and others, I strees before each and every check up. I'm 2 years in and have had to do the watch and wait routine as well. The week (sometimes longer) leading up ti my CT/MRI is ALWAYS tough. My six month follow up after my nephrectomy was basd because the saw an "artifact" on my MRI and went as far as having a second surgery scheduled before declaring it a false alarm. I have found that just living with cancer and the unknown is one of the hardest parts of this mess. 

eug91's picture
eug91
Posts: 99
Joined: Jan 2019

You guys are the best.

CRashster's picture
CRashster
Posts: 226
Joined: Mar 2017

I think we can all agree on that. Ask your doc if you are NED. Thats what I do. The first time I did it, he looked at me weird, like I shouldn't know that word, but then smiled and said "Yes, you're NED." Thats all I needed to hear. Always talk to your doc. Just talk like we do here. Do not leave until you fully understand everything.

JanetF
Posts: 1
Joined: Jun 2019

I never heard that word till now, but yesterday I had my first scan since beginning chemo 9 weeks ago. I was sick with anxiety and emotionality. Could hardly think about anything else. Doc's nurse read me the main parts of scan, and I'll get a copy later this week. My swollen lymph nodes (from ovarian cancer) have all returned to normal size. I seem to be improving greatly.

 

Is the NED comment standard verbiage in all scans if, in fact, no disease is seen. None was seen in mine, but I don't know if that wording was used.

 

eug91's picture
eug91
Posts: 99
Joined: Jan 2019

 

We totally understand the being sick with anxiety and emotionality. Sending you good thoughts and wishes - hoping you enjoy continued healing! 

In my case, they didn't say NED until I asked. Next time you talk to your doctor, definitely ask. 

 

jazzgirl's picture
jazzgirl
Posts: 125
Joined: Nov 2017

How are you doing? Did you have that Monday appointment? Hope all is as well as possible...

eug91's picture
eug91
Posts: 99
Joined: Jan 2019

 

I went in armed with questions and my doc answered them all. Talked about my creatinine and GFR numbers. I had zero clue whether my numbers were good or bad in terms of contrast for my scans, so it was nice to get some feedback that based on my height/weight/age, my numbers are fine (creatinine 1.4, GFR 60). He showed me the CT scan and pointed out all the good stuff - the other kidney, lymph nodes, liver, etc. 

Then he showed me the mild soft tissue stranding where the kidney used to be. It's probably just post-nephrectomy inflammation, but instead of six months, he scheduled my next CT scan for three months from now. He prefers to alternate CT and MRI to keep down the radiation exposure, but in this situation, it'd be useful to have two CT scans to directly compare. So September scan scheduled. 

Also, I asked if I'm officially considered NED. He said, "Oh yeah. You're N-E-D." Man that sounded good.

And I get to do it all over again in three months. :) 

AliceB1950's picture
AliceB1950
Posts: 17
Joined: Jun 2019

Am I the only one that got a PET scan to follow up at around the six month post-surgery mark?  I had a total nephrectomy in September, a CT scan in January, then a PET scan in early April - and a biopsy for an iffy spot that turned out to be scar tissue forming.  I'll have another CT in November.  Meanwhile, I had a mammogram for the one-year mark on breast cancer in early June, plus the cardiothoracic surgeon I saw today for an aneurysm wants to schedule me for a baseline CT (aneurysm showed up on CT last summer).  Ugh.  Last year, starting in July, I had two CT scans and 33 radiation treatments in the fall.  How much is too much scanning and x-raying in one year?  I'm hoping the doctors can coordinate and just do one scan for everything next time.

a_oaklee
Posts: 414
Joined: Nov 2013

You are not the only person who has had a PET scan.  It's so very smart to rule out disease anywhere in your body.  My husband had a preoperative PET scan back in 2012.  It was routine preop just to see if there were any spots in other places.  His kidney tumor was 4.5 cm.  I posted here a long time ago, to ask if others had a preop PET, and there wasnt anyone who responded that they had one too.  Personally, I think you are better off knowing, than not knowing what you may be dealing with.  

Your question about radiation exposure is a very good question for your oncologist.  The facility we go to keeps track of all the radiation my husband has had.  But he has also had radiation treatments for the bone mets, and they must keep track of how much and where.  

This thread has opened my eyes to scananxiety.  I feel it, and I'm not even the patient.  I held back from posting, because caregiver anxiety seems disrespectful to mention.  My husband does not feel anxiety.  It's so strange to me.  But now I understand why he has immersed himself in work to the extent that he has.  No time to think about anything.  Hmmm.  Thankyou for posting.

AliceB1950's picture
AliceB1950
Posts: 17
Joined: Jun 2019

My husband has had more emotional moments through all my medical adventures than I have.  Or at least more than what I've shown.

JoeyZ's picture
JoeyZ
Posts: 190
Joined: Mar 2018

Hey Eug!! SO glad to hear things went well and you are thusly proclaimed to be "NED!" That is awesome news, and I just love to hear it. I had some of that stranding also and no one thought a darn thing of it. I'm getting close to the 1.5 year mark since the surgery. Time flies when you're having fun. <Sarcasm...> LOL.

Scanxiety is very real. Last time I didn't have any, for once. I guess it's getting to be "old hat." BUT, I feel in my bones that the minute I let down my guard, I'll get a bad report. We must stay vigilant at all costs!

Nice to 'see' everyone and read the posts.

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

the scans wont even bother you, I dont even think about them anymore, whats the point, whatever it is it is, and you cant do a thing about it. My oncologist and I joke about getting my hair cut three times a year and getting a lung trimming once a year, its better to try to find some humor in this. Having said that I also got NED scans this week, and thats a good feeling after all the lung surgeries Ive had the last 5 years, good luck.

AliceB1950's picture
AliceB1950
Posts: 17
Joined: Jun 2019

Yeah, except for wondering about radiation amounts, I don't get nervous about scans.  They're an annoyance, but they don't scare me.  I like knowing what's going on.

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

since 2010 that its amazing I dont glow in the dark. Ive had at least 15 chest abdomen pelvic ct scans, at least 50 different chest x rays, and 3 pet scans. The reason for all the chest x rays is once they operate on a lung you get a chest x ray daily everyday your in the hospital to make sure its expanded, not leaking,etc. and with three lung surgeries they add up quick. Just last week I had my nuclear bone scan and full body ct scans, then the bone scans came back questioning something on two of my ribs. So guess what I had to go get 20 bi lateral regular rib xrays to rule out mets to the ribs to confirm the bone scans. Turns out I just have two broken ribs that have not fully healed from my last lung surgery on Feb 20 2019. Did I forget to metion every time you have a lung surgery you get some broken ribs from when they spread them, oh well.

 

It could be alot worse, Im alive,not on any cancer drugs, retired young, live on the beach, smoke lots of high quality medical weed, and drink 2 shots of quality bourbon every night. Forget living healthy its to late for that, now. I live like every day is my last. I realized along time ago that the sooner a person accepts that they're going to die, cancer, heart, hit by a car, motorcycle wreck, hit by lighting, hospital screw up, etc. that I was able to get on with life and really enjoy it.

Im with you I like knowing whats going on, scan away!

Good luck

eug91's picture
eug91
Posts: 99
Joined: Jan 2019

JoeyZ! Thanks for letting me know I'm not the only one with stranding. Hope you're doing well! 

Hd67, that's hilarious. Now I can picture getting a haircut and a lung trimming. Though how much do you tip your oncologist...? LOL. 

 

Apaugh's picture
Apaugh
Posts: 800
Joined: Aug 2016

Eug,

so glad your doing better and your anxiety is leveled out for now.   Keep going forward!

Hugs,

Annie

NYCKidney10
Posts: 7
Joined: Jul 2019

Congrats Eug! Glad you are doing well.

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