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Scanxiety and results - can anyone relate?

I think I post something like this just about every year, but this forum is the only place where people really seem to understand.

My five-year mammogram is coming up in about 10 days, and my scanxiety is in full swing. As before, experiencing the procedure doesn't bother me too much, but the idea of receiving my results is almost panic-inducing.

Logging into MyChart is way too scary, because that's how I found out my initial mammogram 5 years ago needed follow-up. The emails that tell me I have new test results? I've set up a filter so they go straight to spam. Have I received plenty of perfectly happy normal results in MyChart over the years? Why, of course; in fact, except for the cancer stuff, I can't remember ever getting test results that truly concerned my doctor. Doesn't matter. Can't check MyChart unless it's something really, really, really boring, like a bone density scan or maybe cholesterol.

Waiting for a phone call is also too scary, because that's how I found out I actually had cancer, then received additional concerning results from other tests over the next couple of years.

I've asked for diagnostic mammograms a couple of times, shortening the waiting period, but then I have to go back to the cancer center. Plus, waiting in the gown while they read results in the next room is just about as stressful as waiting at home for a longer amount of time.

Last year I got a regular mammogram at a normal clinic, thinking that if I acted like a regular person getting a routine screening I might FEEL like a regular person getting a routine screening. Didn't work. I was irritable and on edge for days, bracing myself every time I noticed I had a voice mail. Finally, about a week later, after they hadn't called and I was pretty sure the results HAD to be in, I got the letter in the mail and felt safe opening it. Which meant I'd spent almost a week being irritable and anxious and on edge while my good results had been sitting unopened in MyChart.

Why does my brain work like this? And does anyone have strategies for this?

Comments

  • alicebastable
    alicebastable Member Posts: 1,934

    Can you try to think of mammograms and other scans as routine maintenance? I have to get both mammograms and CTs, now just annually, and I've found it really helps to think of it as taking the old car(cass) in for a routine oil change. If they find a problem, it's caught early before it becomes a big problem. Or think of scans as our robot friends, who exist to help us.

  • purplecat
    purplecat Member Posts: 222
    edited January 8

    Thanks, Alice - you've recommended that strategy before, and it does help. Also - carcass, haha!

  • doodler
    doodler Member Posts: 34
    edited January 8

    I can definitely relate. I'm early in this game. My brain is overloaded at this point, and tends to drift towards worst-case scenarios. I'm not great at accurately deciphering the information in the reports that pop up after tests in the patient portals.

    For an upcoming CT scan, I'm going to do everything in my power to resist looking at the report before my MO can walk me through the results. I think the MO can frame things a bit better for perspective. I can check the details later on if I decide to. For now, I think I'm better off listening to the docs first.

    @alicebastable A voice of sanity, here. Thank you.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Boy do I get this. What can help me is reciting facts to myself. For example, tomorrow I go get my annual ultrasound of my thyroid to monitor my years old nodules and I want to jump out of my skin. However, I am reminding myself that this has nothing to do with my breast, I have no symptoms of thyroid issues and they've been stable for five years so why would they do anything different now? Anyway it help to repeat facts to myself instead of fear based what if's.

  • ctmbsikia
    ctmbsikia Member Posts: 749

    I can relate. I had a tough first 3 years of mammos and MRIs coming back Birads 3, so I was going every 6 months. Finally had a biopsy right by my surgical site and it is fat necrosis. Since then, everything has been fine. I am an absolute portal stalker after a test, even blood work. I have gotten better in not reading too much into anything right away if something appears off or out of range. I like to read my results first just in case the phone does ring. I'd rather not have the phone ring and be like, what?

    This past year I did not have an MRI, the order has now expired, and I didn't go back to the SO. I go to the MO next month. Just had a DEXA. Hip scored better but spine got worse. I don't know what that means or how that could be. I am on Prolia. I am high risk of late distant reoccurrence, (according to the CTS5 calculator tool) so I am still taking the AI. Should there be an issue with my insurance and Prolia, I may just stop the AI. If MO pushes for an MRI this year, I'll probably go. Can't believe it's been over 5 years. That means I'm also due for a colonoscopy. Getting ready to schedule that. Also, my dentist referred me to a periodontist. Not looking forward to that. I'm wondering if the AI and being on Prolia is affecting my jawbone and gums. If this doc thinks it's possible, then there's another reason to quit the AI.

    Lastly, my primary switched to a concierge service which I cannot afford to do. I can stay with his office but would see the NP, who is a young gal right out of school. I wasn't impressed with her the one time I met her. I signed up with a new GP. Need to transfer everything soon before that appt. I still have that 10 day before anxious window. I still sometimes cry in my car when I leave a test or appt due to the stress-BUT- in the end, I'm doing fine, and I'd rather be doing all this (maintenance) then be dealing with active cancer.

  • purplecat
    purplecat Member Posts: 222

    Doodler, Kay, and ctmbsikia - thanks for responding!

    Doodler, sometimes I wish patient portals had never been invented. I was perfectly happy, years ago, to wait for a call from my doctor. Not that the wait was easy, but at least the doctor could explain what was going on and I could ask questions. I’ve asked if there was a way to set the portal up so results could be released to patients only after a conversation with a professional - or at least to have the option - and there’s not.

    Kay, facts help me sometimes too. I’ve had six breast biopsies in 25 years (or more, if you count sampling multiple places in the same procedure) and only one of them ever came up with cancer. I’ve been taking tamoxifen diligently for five years. All my recurrence scores are low. Lately, what’s helping me most is the thought “I am not alone. So many people around me are facing, or have faced, scary medical things, and those that won’t probably will if they live long enough. I haven’t been singled out for the universe for some kind of special persecution here, it’s just my turn.”

    CTM, I think we may have communicated before about similar issues with scar tissue requiring extra surveillance for a while. I had biopsies of the scar area at 3.5 and 4 years after surgery/rads, and both turned out to be a laundry list of scar tissue, necrosis, etc. Had my 4 year mammogram shortly afterwards, and now it’s time for the next one. I think that’s why I’m so nervous about this one — if the scarring process hasn’t settled down, there will be more changes that they may want to biopsy. Also, like you, I’ve stopped MRIs. I was told that they haven’t been proved to affect the long term survival rate and are likely to produce the false positive/unnecessary biopsy/horrible anxiety cycle I experienced a year ago. I was happy being told that I could get off that roller coaster, but I’m realizing how reassuring it was when they came back clean. Anyway, it sounds like things did calm down for you, and I’m going to hope they do for me as well!

  • kaynotrealname
    kaynotrealname Member Posts: 346

    “I am not alone. So many people around me are facing, or have faced, scary medical things, and those that won’t probably will if they live long enough. I haven’t been singled out for the universe for some kind of special persecution here, it’s just my turn.”

    I love this. Thank you for sharing.

  • purplecat
    purplecat Member Posts: 222

    Coming back to reread all the helpful words after a new finding this morning. Background: I had two biopsies of the lumpectomy site in six months in 2022, first because I’d noticed some new faint redness and stiffness near the scar area, and six months later because my MRI had showed changes in the same area. Both turned out to be scar tissue from the surgery and radiation - in fact, the MRI report even suggested that some of the changes might be scarring from the six-month-old biopsy, which was sort of maddening. This morning in the shower I noticed a new red/stiff spot on the other side of the scar. It looks and feels exactly like the first one did when it first popped up, and seems to be connected to one of my previous biopsy scars, so it seems highly likely that it’s going to be more darn scar tissue, possibly caused by the needle from the MRI biopsy that was caused by the previous. Or maybe one of the other ones - I can’t keep track of all these biopsy needle marks anymore. Still, my lizard brain is taking over.

    It’s also possible that this has been faintly pink and crunchy since the other scarring started, and I just somehow never noticed it because the other spot is more obvious, and am now fixating upon it because of my anxiety about the upcoming mammogram. I think I’m going to tell the tech that it’s highly likely I’ll get a callback, and ask her to take extra close-up picture of the lumpectomy site to save a step.

    I catch myself thinking, if I get another cancer diagnosis, I can get a BMX and get off this roller coaster for good…

  • doodler
    doodler Member Posts: 34

    @purplecat I'd still want to get that, or anything unusual checked out. Worth it for some peace of mind if nothing else.

    One thing is for sure: the scans never seem to end, once they're started. My first CT scan is tonight. Whatever the findings, treatment will start soon, and periodic scans every so often, indefinitely, after that.

    It's tough.

  • purplecat
    purplecat Member Posts: 222

    Thanks, doodler. I have an online appointment with my PA a few days after the mammogram, so can mention it to her then and see if she thinks it warrants coming in — unless the mammo results already require that, of course. Just so sick of this stuff.

  • doodler
    doodler Member Posts: 34

    Scanxiety has turned me into a "patient portal stalker" today. (One of my favourite low-key features about this forum is the useful terminology I'm picking up. It's the new "doom scrolling" I guess.) I fidget too much to begin with, now I'm doing that instead.

    I was convinced I wouldn't look up scan results, but curiosity and cats… the recent breast MRI and bone scan both showed an area of concern in my cervical (neck) vertebrae at C2 and C3, which was pointed out in a neck MRI back in mid-November (that MRI stemmed from a separate medical complaint, prior to my mammogram and biopsy).

    Now I'm waiting for CT results; just had that scan last night. A PET scan will be coming up on Friday. I am meeting with my MO this Wednesday. So, I'm not sure if the MO will have the CT results by then. Hoping he will so that I can get a treatment plan going.

    I'm not going to look up dr. google's cervical spine metastases info, I can't decipher it anyway. I have scoliosis and had a spinal fusion in my teens. I can only imagine the complications that MAY arise. I just want firm answers, or a path to answers, soon…sigh

  • purplecat
    purplecat Member Posts: 222

    Good call on avoiding Google, Doodler! Wish I could do the same. I’m suspecting I may be developing a bit of lymphedema, so looked that up yesterday and somehow ended up on an article describing an very unusual presentation of a breast cancer recurrence that was initially thought to be the kind of scarring and inflammation I have, the stuff that’s been biopsied in three separate spots. My impression is that cases end up in medical journals precisely because they are so unusual, but reading it re-activated my lizard brain anyway. Ugh. Resolving not to google any more, but it’s so hard. I really hope things turn out well for you!

    I think my skin thing is OK. Heat from the shower does tend to discolor my radiated skin and all the biopsy marks, and I think I just looked at it at the worst possibly moment and then spent the day poking around instead of letting it calm down. I’m just looking at it once per day now, first thing in the morning before my anxiety ramps up, and I’m not seeing anything that particularly catches my rational brain’s attention. Still, I’m glad my mammogram is coming right up.

  • kotchaj
    kotchaj Member Posts: 205

    Scanxiety SUCKS! I am now going on 4 years out from my initial diagnosis this coming May. I have a dexa scheduled in March and I'm already dreading it. I do look at my patient portal, remind myself I don't have a medical degree, and do NOT let myself talk with Dr. Google.

    I love the reference to the car and taking it in for routine maintenance! That is a helpful way for me to look at it. Thank you for that. It's helpful.

    The reminder that we are not alone, that we can come here and someone, at least one, will remind us we are not by ourselves in how we feel, is the BEST thing for me. It makes it all the better.

    I just did the Signatera test a few weeks ago, waiting until the end of the month for that baby to pop in. Actually, it won't pop in until my doctor reads it first this time, thank goodness. You can request they hold back.

    Sending hugs to all of you,

    Amanda

  • purplecat
    purplecat Member Posts: 222

    Thank you, Amanda. I wish I could request to have results held back from my patient portal, but apparently that’s not an option with whatever software they use.

    For what it’s worth, I was very nervous about DEXA too, even after being assured multiple times that the ONLY thing it measures is bone density and has nothing to do with bone Mets. Anxiety does not always respond to rational, thinking, unfortunately!

    just got back from my mammogram. It went OK. I didn’t burst into tears, hyperventilate, or throw up, so I’ll call it a win. I get tomosynthesis because of dense tissue, and it’s always been just four pictures. The tech told me they’ve recerntly bumped it up to six for dense patients, and proceeded to take two extra shots for the axillas. That’s good, I guess, but now I’m obsessing that somethings going to pop up in the axilla pictures, and because they don’t have anything to compare it to, I’m going to have to go back in. If I don’t have to go back in anyway. Results probably won’t be ready until the middle of next week.

  • threetree
    threetree Member Posts: 1,158

    Purplecat - you might want to ask your provider about holding back results. I prefer to get mine, but I asked the staff at my clinic once what someone could do if they wanted them held back. They said a person could make a special request to them and it could be done. I don't think the patient portals offer an option on the site, but the clinic can apparently tailor it on their end. Just a thought.

  • purplecat
    purplecat Member Posts: 222

    Thanks, Threetree - I’ll check into that. Maybe they’ve added a feature since I last asked about it

    Yesterday went by without a phone call from the cancer center. No news is usually good news, so this morning I decided to take advantage of the awakening hour before my anxiety ramps up. I checked the hidden email folder where notifications from MyChart go, and indeed, I had been notified almost 48 hours earlier that my results were in. Took a deep breath, opened up MyChart, and saw the good-news letter. I am officially at five years!

    I think the 5-year mark definitely contributed to the heightened anxiety this year. Also, several people around me are currently going through breast cancer treatments or preparing to start, including a close relative whose initial diagnosis appeared to be much like mine but is now proving to require ALL the treatments. Another close relative is getting a hematology cancer worked up. It didn’t seem possible that I was going to get good news, and even getting it brings some mixed emotions. I think it’s time to check in with my therapist again.