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

eug91
eug91 Member Posts: 367 Member
edited June 2019 in Kidney Cancer #1

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! 

 

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Comments

  • WeAreWarriors
    WeAreWarriors Member Posts: 12
    It is scary

    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
    APny Member Posts: 1,995 Member
    What does "keeping an eye on

    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
    lobbyist0724 Member Posts: 483 Member
    Hi Eug, I will take it as a

    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
    eug91 Member Posts: 367 Member
    I have an appointment with

    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
    Bay Area Guy Member Posts: 546 Member
    Scanxiety is indeed weird.  I

    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
    Allochka Member Posts: 993 Member
    Glad about NED (I take it as

    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
    Floybrian Member Posts: 8
    edited June 2019 #8
    Hey, I know how you feel.

    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
    eug91 Member Posts: 367 Member
    thanks gang

    You guys are the best.

  • CRashster
    CRashster Member Posts: 241
    scanixety is weird

    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
    JanetF Member Posts: 1
    edited June 2019 #11
    Scanxiety - thanks

    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.

     

  • jazzgirl
    jazzgirl Member Posts: 215 Member
    Hi Eug

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

  • eug91
    eug91 Member Posts: 367 Member
    edited June 2019 #13
    my appointment went great - thanks, jazzgirl!

     

    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. :) 

  • eug91
    eug91 Member Posts: 367 Member
    JanetF said:

    Scanxiety - thanks

    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.

     

    welcome JanetF-

     

    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. 

     

  • AliceB1950
    AliceB1950 Member Posts: 172 Member
    Am I the only one that got a

    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
    a_oaklee Member Posts: 566 Member

    Am I the only one that got a

    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.

    You are not the only person

    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
    AliceB1950 Member Posts: 172 Member
    a_oaklee said:

    You are not the only person

    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.

    My husband has had more

    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
    JoeyZ Member Posts: 210
    edited July 2019 #18
    Hey Eug!! SO glad to hear

    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.

  • AliceB1950
    AliceB1950 Member Posts: 172 Member
    Yeah, except for wondering

    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
    Hd67xlch Member Posts: 151
    After a few years...............

    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.

  • eug91
    eug91 Member Posts: 367 Member
    thanks everybody!

    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.