What's it called--scanxiety?

ColoradoDani
ColoradoDani Member Posts: 65
in Lung Cancer #1
My husband was diagnosed with 3B NSLC a little over a year ago, but has been NED since August. The next scan is coming up, and we seem to get a little freakish with worry each time this comes. He has a cold right now, and it's so hard not to worry that there are greater implications. We keep saying "it's just a cold" as though we can convince ourselves that this will be true. I guess I'm not looking for advice since we know we should see the doc if we're worried and we are seeing him soon--and I know no one can tell me not to worry, that all will be well. I guess I'm just venting or looking for commiseration. You know, the whole focus is on remission and we're grateful that he is NED and know that many people would love to be where we are, but it certainly doesn't mean the whole cancer thing just disappears. Some days we've both made our peace with cancer's presence, some days one of us is a freak and the other is good, and some days we're both worried. It sucks to have this shadowy monster lurking around. Does it get easier as time goes on?

Comments

  • z
    z Member Posts: 1,414 Member
    #2
    Colorado
    Please let the dr know your husband has a cold before the scan. The dr may want to postpone the scan until the cold is gone, as sometimes inflammation will show up, but there is no way to tell, if its inflammation or cancer, unless there a biopsy. I wish your husband and you well and that the scan is clear. Lori
  • Ex_Rock_n_Roller
    Ex_Rock_n_Roller Member Posts: 281 Member
    #3
    It doesn't really get easier
    Unfortunately, I just landed myself in the situation Z describes (I hope). Scanxiety the last couple weeks, scheduled CT scan last Wednesday, and I get a call from the onco: "Have you had any cold or possible chest infection?"

    They've found something very small away from the known disease area (which is stable) that looks very much like inflammation. And as a matter of fact, I've had one of my perpetual chest congestion things going for the past couple weeks, and was thinking of asking if I could go on something.

    So what I get for not calling is ten days on a real nasty antibiotic, and a six week wait for a repeat scan. Increase in anxiety, money down the drain, and more exposure to radiation (of course with a good outcome not guaranteed).

    Lovely. If he has a cold anytime near a scan, yes, I would recommend calling it in to at least avoid this situation.
  • kado4
    kado4 Member Posts: 80
    #4
    Ex_Rock_n_Roller said:

    It doesn't really get easier
    Unfortunately, I just landed myself in the situation Z describes (I hope). Scanxiety the last couple weeks, scheduled CT scan last Wednesday, and I get a call from the onco: "Have you had any cold or possible chest infection?"

    They've found something very small away from the known disease area (which is stable) that looks very much like inflammation. And as a matter of fact, I've had one of my perpetual chest congestion things going for the past couple weeks, and was thinking of asking if I could go on something.

    So what I get for not calling is ten days on a real nasty antibiotic, and a six week wait for a repeat scan. Increase in anxiety, money down the drain, and more exposure to radiation (of course with a good outcome not guaranteed).

    Lovely. If he has a cold anytime near a scan, yes, I would recommend calling it in to at least avoid this situation.

    Let's get those antibiotics to clear that up!
    Hi Ex Rock n Roller...Just read your post....I know you are worried, but I would try to focus of knowing that you have had chest congestion, and ct scans are very sensative to pulmonary effusions and infilrates, consolidatons.I am an icu rn and famililar with this part.Maybe some mucinex would help to expectorate more from your lungs

    Positive thoughts your way...Cathy
  • ColoradoDani
    ColoradoDani Member Posts: 65
    #5
    Ex_Rock_n_Roller said:

    It doesn't really get easier
    Unfortunately, I just landed myself in the situation Z describes (I hope). Scanxiety the last couple weeks, scheduled CT scan last Wednesday, and I get a call from the onco: "Have you had any cold or possible chest infection?"

    They've found something very small away from the known disease area (which is stable) that looks very much like inflammation. And as a matter of fact, I've had one of my perpetual chest congestion things going for the past couple weeks, and was thinking of asking if I could go on something.

    So what I get for not calling is ten days on a real nasty antibiotic, and a six week wait for a repeat scan. Increase in anxiety, money down the drain, and more exposure to radiation (of course with a good outcome not guaranteed).

    Lovely. If he has a cold anytime near a scan, yes, I would recommend calling it in to at least avoid this situation.

    Thanks, everyone, and hang in there, Ex
    Ex, sorry to hear all this. I have been thinking of you since you'd mentioned on some other thread that you had a scan on the 8th. I wish there was something profound to say, but bottom line is, that sucks and 6 weeks is a long time to wait. I'll definitely be thinking of you and hoping for a clear scan.

    I appreciate your honesty about scanxiety and the advice from all of you about calling to see if my husband should go through with the scan if he's had a cold(we hope it's a cold). We travel 350 miles for scans so he can get medical care in a large research hospital, so it's hard to just come back for a scan in a few days, so this advice is especially helpful.

    Even though we're not stupid enough to compound our problems, I can honestly see how people develop substance abuse problems when they're dealing with the stress of cancer and its aftermath. Pink Floyd's line about becoming comfortably numb has a lot of appeal...

    Dani
  • z
    z Member Posts: 1,414 Member
    #6
    Ex_Rock_n_Roller said:

    It doesn't really get easier
    Unfortunately, I just landed myself in the situation Z describes (I hope). Scanxiety the last couple weeks, scheduled CT scan last Wednesday, and I get a call from the onco: "Have you had any cold or possible chest infection?"

    They've found something very small away from the known disease area (which is stable) that looks very much like inflammation. And as a matter of fact, I've had one of my perpetual chest congestion things going for the past couple weeks, and was thinking of asking if I could go on something.

    So what I get for not calling is ten days on a real nasty antibiotic, and a six week wait for a repeat scan. Increase in anxiety, money down the drain, and more exposure to radiation (of course with a good outcome not guaranteed).

    Lovely. If he has a cold anytime near a scan, yes, I would recommend calling it in to at least avoid this situation.

    EX
    Hello, I had a cold and then had a scan and now we are watching a 5mm nodule in my left lung. Thank you, ICU nurse for explaining what may be found if you have congestion or a cold. I had my scan on 1-23 and the next one will be at the end of April. I am hoping it will be gone. I hope yours will be gone to ex.

    As for the nasty antibiotics, I know I had an infection in my colon after undergoing chemo/radiation for anal cancer. The antibiotics made me feel worse that the chemo. The antibiotics strips away the good and bad bacteria from your colon, so you have to take probiotics (sp) (good bacteria) to replace the good it takes out. My oncologist didn't warn me and I told him he needs to let his patients know so they can feel better than I did.

    I wish us all well. Lori
  • fathersson
    fathersson Member Posts: 121
    #7
    Me too
    I get regular PSA tests and cystoscopy for bladder and prostate cancer...( yup I have both) Thank goodness so far so good. A scare from a chest xray is what brought me here s few weeks ago...After A CT they discovered the area they were concerned with happened to be scaring. It has been 2 years since I began this journey and i defin experience that awful anxiety everytime I go for blood-work or scopes.. and yes i does suck...also the relief experienced when things come back OK.. Hoping things turn OK for you and ex rocker . ( Ex you need an experienced bass/rhythmn guitarist?) (: Best wishes to all..
  • Ex_Rock_n_Roller
    Ex_Rock_n_Roller Member Posts: 281 Member
    #8
    z said:

    EX
    Hello, I had a cold and then had a scan and now we are watching a 5mm nodule in my left lung. Thank you, ICU nurse for explaining what may be found if you have congestion or a cold. I had my scan on 1-23 and the next one will be at the end of April. I am hoping it will be gone. I hope yours will be gone to ex.

    As for the nasty antibiotics, I know I had an infection in my colon after undergoing chemo/radiation for anal cancer. The antibiotics made me feel worse that the chemo. The antibiotics strips away the good and bad bacteria from your colon, so you have to take probiotics (sp) (good bacteria) to replace the good it takes out. My oncologist didn't warn me and I told him he needs to let his patients know so they can feel better than I did.

    I wish us all well. Lori

    Lori,
    Yeah, that's pretty much my situation. Next scan not yet scheduled, but probably early April. So far I've managed to escape the nasty antibio intestinal effects (day 8 of 10), but I'm more worried about a black box warning on this stuff, which is Avelox. I can see why they went to the big hammer right away in view of the LC, but this stuff can cause spontaneous tendon damage especially if you have arthritis, which I do. In view of the fact that I intend to spend my next six weeks of uncertainty hiking out west if I can, I'm not too comfortable about that possible side. The onco docs were pretty unhelpful in that regard. Going to contact my rheumo guy next week.

    At the moment, I'm focusing on that, which is the immediate quality-of-life concern, rather than the prospects of a LC recurrence. Onward ...

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