Scanxiety, or how waiting for cancer tests makes you crazy

Photo: Me in an MRI, by Tara Brown

I had a rough week, this week. I came back from a transformative, restorative trip to Hawaii, where I did lots of creative work for Boing Boing and for personal projects. The morning after my flight home, I dove in to a week of medical tests. My primary treatment for breast cancer is complete (chemo/surgery/radiation), but that doesn't mean cancer's over. I have to take a drug for 5 years (or more, who knows), and there is at least one more surgery ahead that I know of.

But there is also much monitoring ahead. I have to get various blood tests and exams and scans every 90 days, 6 months, and annually. Scanning my body for any new cancer, scanning the horizon for bad news, and hoping it never arrives.

The big thing this week was tumor marker blood tests, which are used to see if your blood shows signs that cancer is returning and progressing. The tests are very much imperfect, a blunt and controversial tool. What they tell us is a matter of debate. Some oncologists don't even use them. Mine does, and I do respect why, and I comply.

When I received my tumor marker results, I flipped out, even though my oncologist's office told me they were "fine." The numbers showed a slight increase in my tumor markers. How the fuck can that be fine?

Bad numbers aren't supposed to go up. I cried. I panicked.

"Need to hear your voice," I texted my boyfriend. "Cancer test scared me."

I spoke to my boyfriend and my cancer shrink and cried some more, and then emailed cancer friends I knew would understand (they did). At some point I stopped crying.

I asked my oncologist's office for details. The numbers I got didn't make me feel fine. I got results that were presented as good news, but the whole process confused and upset me. Why do results from other tests for other tumor markers that my friends with other kinds of cancer get mean one thing, while the numbers from the type of marker we test for in my case mean something completely different?

If my number is up a little bit, does that number represent the first tiny step in a long stairway towards death? Or is that data point just noise, masquerading as signal?

I had to ask doctors (and fellow cancer patients whose take on medical math I trust) to help me figure out whether this score increase meant I was moving closer to dying, or was just a blip of fluctuation that told us nothing bad. It was the latter.

Does this sound like it would make you crazy? It makes me crazy.

If I didn't have cancer, my behavior around the tests would definitely be what you would call crazy. But when you have gone through the ringer with a disease that wants to kill you, and still may, it's not a crazy reaction at all. It's more like PTSD.

And as traumatic as it can be, scanxiety is better than the alternative: being dead, so there's nothing to test, and no odds to wonder about.

I was tweeting yesterday about how frightening and stressful the experience was (I do this sometimes, when I'm upset), and some cancer friends sent along links to two essays that articulate scanxiety beautifully.

Our Wait-and-See Culture, by Robert J. Abramson, in today's New York Times:

As the physicist Niels Bohr said, “prediction is very difficult, especially about the future.” But this is the exact position that many physicians and patients find themselves in. We must make life-altering decisions based on incomplete information. In my case, the decision to follow up in six months appeared to be the prudent one — and it turned out to be the right one as well. My six-month follow-up revealed the lesion unchanged. It was recommended that I follow up in another 6 to 12 months.

Welcome to the “follow-up culture.” The danger here is that we will always be living in the future: the scan was O.K., but what about in a year? No advances in medicine, as remarkable as they may be, will ever provide us solace for this predicament.

And yet, as disturbing as it is, it also provides an opportunity to live our lives to the fullest each day. As some Eastern philosophies tell us, life is like a river, in perpetual motion, and when we flow with it we attain a level of tranquillity. My patients and I will never know what the future holds for us in this new medical calendar, but my hope is that we can come to terms with the river, make friends with it, and allow it to teach us to be present in the here and now.

And, from Tom Roush, who follows me on Twitter, "Point and Click."

The essay describes a response Tom gave to a friend who said about Tom's periodic cancer screenings, “So, you must be used to it by now.”

It's not something you ever get used to, as Tom explains so perfectly here:

“It’s like every six months, someone holds a gun to your head, and they slowly squeeze the trigger. You can hear the springs in the gun compressing, you feel the muzzle shake a little as their muscles quiver, and you tense up, anticipating the explosion. Adrenaline pours through your body. You try to keep from shaking, from crying, because the gun exploded twice before, and you don’t want to go through that again.

This time, there’s a loud “click” of the hammer slamming down on an empty chamber. Just that sound explodes in your ears. Every muscle in your body jolts tight as the sound echoes – then rings away.

No bullet this time.


But it takes awhile to recover.

And no… you don’t ever get used to it.


My tests this week were the first time post-treatment that we compared new tumor marker data against previous (post-treatment) tumor marker data. So, the scariness was amplified by the fact that this process was new for me.

Another 90 days from now, when we test again, my reaction may be different. When we do the next mammogram, MRI, or other periodic screenings, my reaction might be different.

I do have good support resources.

I am getting better at coping with all of this as it goes on.

But that's just it.

It goes on. And on. And on.

To be a cancer patient is to be forever at the mercy of medical math.

It is not easy. And you never get used to it.


  1. I am less than a year from “remission” which means my monitoring tests aren’t all that frequent (every six months) and will go down to annual next year.  I know that anxiety.  My oncologist is pretty awesome and he always says, as soon as I sit down, “OK, your tests all look good, so relax.  Now lets talk details” and we do an extended discussion.  You’ll get there!  At one time I thought all I want is to have a day where I didn’t think about cancer.  They don’t happen all that often but they do happen.  And hours go by without thinking about it now.  Reducing the mind share cancer received was a personal goal of mine.

      1. Thank you.  I’ve followed your blogging and progress.  I’m glad to see you are travelling and living well.  Keep it up.  I’m thinking of you.

  2. I feel for you. That sounds like a regularly scheduled trip through hell.

    And no matter how well a person’s logical brain can deal with the statistical significance of a number, it carries a big emotional impact. Especially when it’s your life that the number signifies.

  3. There is a long term study going on, connected with the University of Chicago Hospitals, that monitors exactly this: the stress levels for women with genetic markers and/or family history of breast cancer who have to undergo regular testing to stay on top of their risk.  Free MRI scans (not cheap, even with insurance) are the main perk.  You can join the study either before you’ve gotten a BC diagnosis, or after 2 years (I could be wrong about the exact amount of time) of being considered “cancer-free”.

  4. On a lighter note….

    The local school nurse, if she calls a parent, immediately starts the conversation by saying “there’s no emergency” before even saying her name, knowing that caller ID will already have parents primed for the worst.

    I chuckle to myself every time, but I’m still really glad she does this.  It’s human to worry.

  5. Oops, just noticed this part….

    “I have to take a drug for 5 years (or more, who knows)”

    Literally, in the time you took to go through surgery/chemo/radiation, they’ve changed the recommendation from 5 years to life.  Obviously different oncos are going to have different opinions, but that’s the new normal for cancer hormone inhibitors.

    Sorry to be the bearer of bad news.

    1. Yes, truly thanks, and I’m already aware of this. I discussed the study results with my oncologist when it first came out. 5 years for me is a long way off; lots of variables. 

      The new possible recommendation isn’t that one takes tamoxifen for “life,” but for 10 years instead of 5, and even then, there are many many variables.


      It’s crazy how quickly things change, though.

      1. I’m 4 years post and frankly I’m happy to take an estrogen suppressant for as long as they recommend. I have a fab oncologist who knows I am a geek and am at least as up on new treatments and tests, etc as he is. My case was mild compared to yours but yeah, the thought demons exist everywhere. Live long and Prosper!

  6. Thank you for this, my friend.  We were with you 100 percent.

    Cancer imprints on your brain.  It takes time before a doctor’s appointment is “just” an appointment; before anything associated with medicine is in the least bit routine.  But it does happen. And we all have this astounding appreciation for how quickly the beauty of our lives can change.

    1. Jody is right.  I grew up with cancer, and made it through times when going to the doctor was high anxiety, and then, the years of hypochondria, and then avoidance of doctors. And now, at 40, going to the doctor is no more or less anxiety-provoking for me than just about anyone else. (Although I bet my questions for the doctors are a little different!)   

      So, over time, things do smooth out to a new normal and you realize what is important to worry about and what isn’t even a blip on your radar.  

      Hang in there. You are doing GREAT so far, and, personally, I’ve been inspired reading every single post you’ve put up, so thank you.

  7. One of the great problems with modern medicine is that it can be precise without being accurate – the decimal points on a measurement are swamped by the noise in the measurement.  This is not unusual in technology but it takes new meaning when your life depends on it.

    [Edited for spelling]

  8. The best part is when they say, “that nodule we didn’t think was anything grew slightly, or maybe it was just the way they did the scan. We’ll just watch it until June. But, its probably nothing.” then why did you tell us about it? 

  9. What my oncologist said was that we are always producing tumor markers (and when I say ‘we’, I mean everyone).  You’re never at zero and the numbers are constantly changing.  She would be looking for a ‘significant’ increase. She never saw a number that alarmed her over the next five years.

  10. “When I received my tumor marker results, I flipped the fuck out, even though my oncologist’s office told me they were “fine.” The numbers showed a slight increase in my tumor markers. How the fuck can that be fine?”

    Unfortunately doctors sometimes say things like that. Some “marker” or result changed slightly, but too insignificant to make any medical claims or justifying some action.

    Of course, they should explain things like this better, because it is kind of obvious how people will react to “a slight increase in tumor markers”.
    Some doctors understand this, some a bit less than desirable. You should always ask a doctor for explanation if you feel puzzled or anxious about the results of a test.

    “Luckily” I got this experience of interpreting test results in my still ongoing treatment of keratoconus and secundary glaucoma. Good luck with your treatment!

  11. I’m 6 years in remission, after a 5 year observation protocol. 

    It does get better, though even after the end of the tests, it just turns into generalized health anxiety. After cancer, you can never again have “just a mole”, or “just dry skin” or “just a lump/bruise/bump” or “just a tommy-ache”. Everything is a potential symptom… 

    The scanxiety never gets better. However you do learn to accept the lack of control over your lifespan.

    The survivor’s burden is that they are forever aware of mortality,  unlike “normal” people who can be thankfully and blissfully in denial. 

    My only consolation is that I survived what I feared most and I know I’m strong enough to do it again if I had to. I don’t want to, but I know that I could cope, because I did cope. 

  12. Your writing on here has been a part of my everyday life for a very long time now. I hope that, for all the hell of it, you continue to get empty chambers. Big love, and good luck. X

  13. I hope you will mend well and quickly, in all ways. Your bravery in the face of the unknown is awe-inspiring. We’re rooting for you.

  14. Oh, Sweetie, I feel for you.

    And like others here have said, it does get better.

    I was getting quarterly blood draws after 8 months of chemo for leukemia, and every time I got a new draw, milady and I would be anxiously awaiting the results, and if the white count was a teensy bit high or the reds low we’d stress until I talked to my oncologist. (who is just an incredible person. I was very lucky.)

    But… that was 8 years ago, and the blood draws are now annual, I’ve learned the blood counts do vary a little bit and it’s been a long time since we’ve freaked over one… but we both are still aware of them.

    The biggest difference now is that both of us are a little more aware that every day is a gift, to be appreciated and celebrated. The concept of “killing some time” is a little more foreign than it once was.

    Best wishes.

  15. Xeni, bless you brave lady.  The best of luck to you and all of those with such worries.  Awhile back my Doctor ordered a CT Scan of my liver and that was quite a jolt so I know a little bit of what you are feeling.  Thank goodness my test results showed my liver was okay.  Hopefully your test results will continue to be okay as well.  Take care.

  16. Thank you very much for writing this. It is brave to write such things, because admitting one is scared, making oneself vulnerable to being pointed to and laughed at, is difficult. But doing so will make other people less scared, and that is truly compassionate.

  17. In a month I will be 19 years cancer-free, but I still need to get scans every 18 months to make sure it hasn’t come back. It’s hard, every single time. I will have to get scans for the rest of my life – and I expect it to be hard, every single time.

    This is a brave, meaningful and true essay. Thank you.

  18. Know that each time you go in for a scan or a blood test – we’re all there with you. Waiting for the results just as anxiously as you are, and letting out a huge exhale when the news of NED comes. Wishing you many many years with NED by your side.

  19. I may be reading this post a little differently than you intended, but it seems to me that your cancer treatment was effective and your test results weren’t alarming to your doctors. This sounds very promising. I’m hoping that your future tests won’t bring you so much anxiety.

    As for your statment:

    It’s more like PTSD.

    I think it is important to keep track of your mental health here. It may not just be like PTSD, it could actually be PTSD. PTSD can occur due to the repeated stresses from a life threatening illness. Since you are seeing a cancer shrink, that may be something you want to discuss. If it is PTSD, you will want to get it treated as early as possible. I did a quick search, and PTSD is fairly common for people who are afflicted with cancer.

  20. I used to call it the Schroedinger’s CAT scan – when you have to think about the possibility of death again, and then wait, not knowing whether the odds are for or against your continuing to be alive, until you hear what the results are from your doctor. It’s a really hard thing to get through, especially at the beginning. But it does get better, believe me.

    Best wishes and hang in there…

  21. I’m basically better, but i really wish the WNYC/NPR morning show wasn’t sponsored by various cancer clinics. Every morning i get the news plus a little dose of “don’t forget”. 

  22. I’m about seven months out from three surgeries and six weeks of radiation treatments to treat a rare cancer in my cheek.  It will probably be years yet before I am considered to be “out of the woods,” and even then there are no guarantees.

    Thanks to the aggressive radiation treatment, I not only have to be tested periodically for the recurrence of cancer, but also to make sure that they didn’t nuke my thyroid.  (I hate it when that happens.)

    There is so much opportunity for anxiety here:  I could worry about one test result or another; I could worry that my constant pain presages something new, rather than the diminishing consequences of previous surgeries; I can fret about the months between appointments before I even get to be tested.

    The only thing I have found that works for me is:  Do everything you can–that is, learn, discuss, decide, act.  As for everything else, put it out of your mind. You’ve done what you are able to do, the rest is up to the river.

  23. Eesh, flashbacks to when routine HIV tests took a week to come through.  I was the grumpiest bear that week.  

    It’s that hanging-at-the-top-of-a-rollercoaster sick anticipation thing, not knowing if the track is there at all.  

  24. Darling princess of the internet and all you survey…   Yes, cancer sucks.    but?   we all find ways to try and muddle through it.

    I despise PET scans,  you know where the medical tech puts on a lead radiation suit, pulls a syringe out of a big lead cylinder, says “man, this stuff is hot”  then injects it in us and says  “sit in this chair for an hour, try not to pee”   an hour later, you lay in a CaT scan like tube, for about an hour, as they measure the radiation dissipating out of your blood.    you know,  to make sure you are not still sick.

    ANYHOW,  I like to make the best of it.

    first?   by asking what happened to the cat.  I liked the cat scan,  where they pour milk all over you and a cat licks it off?    MUCH more fun than just a generic pet,  I mean,  what if you got a ferret on a bad day???  who knows?

    second?  I close my eyes a lot, and remind myself,  I am doing this so I can be here for a few more years.

    Third!   I go pee.    screw them,  I cannot hold water for an HOUR,  what are they thinking.

    All my best for continued recover, good health, solid humor,   and please, continue your wonderful and amazing adventure of a life.  


  25. I just got cleared by genetic science that didn’t exist a year ago.  A nodule on my thyroid was considered worrisome enough that surgery to remove it was called for.  I protested and the doctor gave me a new “molecular” test by Veracyte which can rule some people out for surgery. 

    I waited two long weeks while wondering if I should be researching the surgery or waiting and trying to get on with my life.  Just got the results today: surgery is not called for.  Yeah!

    But it looks like I will have ultrasounds for the rest of my life.  Makes me Scanxious.

  26. just figured out how to get a comment on this site :))….I thank all of you for being good support not only for Xeni but each pains me to read of her upsets but then it reminds me that this is a healthy genre to be able to express and NOT kept inside…she is a dear friend and i love her a lot

  27. This is a huge problem for patients and doctors. In some cancers it is proven that we should do test X during followup – e.g. HCG in testicular cancer, CT abdo at 12 and 24 months for colorectal cancer. But in most cancers we don’t have RCT evidence to guide us, some patients expect to do tests rather than “just” clinical review, some healthcare systems encourage physicians to do tests and undermining it all are the competing tradeoffs of sensitivity and specificity of tests and the question of actionability of results. For example, does one reinitiate chemo on rising CA125 or upon clinical symptoms in previously treated ovarian cancer? And then the cherry on the top is when the result gets faxed to the wrong number, or the scan isn’t reported yet, or the blood test didn’t get processed by the lab…! Testing times.

  28. This is a little off topic, but something I would like to mention as I am very fond of my motherinlaw an her courage. To those elderly who are feeling like maybe they don’t want to go to the bother of going through a treatment that may or may not work, please consider my mother in law. At 78ish she was diagnosed. All of her children were over 50,Her youngest grandchild was already 12 or 13 and she wasn’t sure she wanted to  put herself through the anxiety and pain that is treatment. She chose to do so, and now she is the light of her 2 year old granddaughters life. She is now 83 and going strong. Its was hard for her to go through treatment, but she accepted that cancer treatment has changed and improved since she was young and she took the chance and got to meet someone she never thought would exist.

  29. Ten years on from my mother’s remission from ovarian cancer, we all still hold our breath at the 6-month blood test.  Xeni, thank you for your so very insightful writing through this process.  You have me nodding my head all day long.  May the FSM bless you. 

  30. Over the past two months I’ve had two MRIs, three biopsies, and the best thing my doctor can tell me right now is “we don’t know.” I’m going to be having my Parotid gland removed in a week so it can be sent to pathology. I’m still trying to figure out how I feel. My wife has periodic freakouts. I have days where I’m fine, and days where I can’t stop getting into a mental loop over the whole thing.

    Scanxiety is exactly the word I’ve needed. Thank you, Xeni. These articles help so, so much.

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