Can't sleep or eat... Should I be worried?

berries · May 2020

I had a CT scan on Monday afternoon (ironically, I asked for it as a 6 month follow up from my last clear CT). I don't know what I was thinking and didn't think I would be so anxious. The fear is practically debilitating. I can't eat or sleep and I have been crying for the past two days.

I know the results are in and I messaged the care team yesterday; the RN responded that my MO hasn't reviewed them yet. Fast forward to today, and I still haven't heard anything. CT results are usually posted the same day and it has already been almost 2 days.

I meet with my MO tomorrow so I'm just worried that she is just waiting for tomorrow's visit to give me terrible news. I would think she would know that a simple "all good" note would bring me down from the edge, but it sounds like maybe something is wrong?

Has this happened to anyone? Is this normal if a scan is clear not to hear back the next day?

vlnrph · May 2020

Oh yes, scanxiety is a real phenomenon. Report intervals and communication patterns at your clinic may have changed due to the pandemic but waiting for results is the worst. Let the staff know how you feel.

You are still fairly new to this game so, if your doctor has not made something Ativan or Xanax available, ask for a prescription. Not sleeping can snowball into making other symptoms grow in severity.

Until tomorrow, try to distract yourself if you can. Sometimes, allowing a half hour (or less) for catastrophic thinking then saying “OK now I'm done" will let you shut down that tendency. You've been through a lot!

berries · May 2020

Thank you so much. I emails my MO and her nurse an hour ago and have not received a response yet.

The crappy thing is I KNOW she has the results and I KNOW she can take one peak at them and ease my sheer terror and misery, but she is not. I have taken 2 ativan daily and it has only helped slightly. I will take another.

I can't stop crying.... I'm literally on the floor trembling in terror. This is an awful way to spend life.

berries · May 2020

my MO emailed back from her iPhone and said:

Hi, I was out yesterday and did not have access to the computer. I will call you later today

omg, what does that mean?????

Spookiesmom · May 2020

Nothing. It means she was out, and will call you.

Breathe.

berries · May 2020

Thank you Spookiesmom... I've never felt this type of terror before in my short life.

Its like any minute now, someone you've barely known for 6 months could call and tell you that you will die or you're accepted to live and I just don't know which one it is.

Spookiesmom · May 2020

Her email meant she’s human and took a day off from the rat race of life. I’ve been told I have cancer a second time. The world did not stop. I deal with it. You will too, if it’s back.

Beesie · May 2020

"my MO emailed back from her iPhone and said:

Hi, I was out yesterday and did not have access to the computer. I will call you later today

omg, what does that mean?????"

My interpretation is that it means she was out yesterday, is busy with appointments and catching up today and knows that you are anxious, so she'll call this afternoon once she's had a chance to look at the results. I don't know what your results will be, but there is absolutely nothing ominous in your MO's reply.

I hope all your worry is for nothing!

berries · May 2020

Thank you all SO much. You have helped me immensely. I don't know who to turn to and your responses have really helped to calm the devil on my shoulder.

Do you think it is possible to recur so early? I just finished chemo dd chemo 3 months ago and had clear bone and CT scans just 7 months ago before starting treatment. I have no symptoms, but it was my bright idea to ask for a follow up CT for piece of mind.... well this is just the OPPOSITE of that as I sit and wait.

My blood work results came out yesterday and everything was perfect.

Am I worrying just to worry? Any chance it could be bad?

Beesie · May 2020

Any chance it could be bad? Yes there is, just as there's a chance that when I have my colonoscopy later this year (delayed due to covid-19), that I'll be found to have colon cancer, even though I have no symptoms and this is just a standard 5 year follow-up screening.

In other words, anything can happen at any time to any of us - there are no guarantees in life. But with no symptoms and good bloodwork, there is also nothing in your current situation to suggest that there will be a problem.

So are you worrying just to worry? Yup, but that's scanxiety - it's so common that it has a name. It's certainly pretty normal for all of us after we've been diagnosed with breast cancer. What you need to do understand is that the worry is normal, but worrying doesn't mean that there will be bad results - there is no connection between the two. Once you recognize that, you can work on managing your worry and figuring out how to minimize it as you wait for test results. If you focus on how you can best deal with the worry, you might think less about the cause of the worry!

edj3 · May 2020

Hey--even if it IS bad, will all this worry and terror change any of that? No of course not.

Go for a quick walk, take a look at the birds and flowers and trees. If it's sunny, enjoy the sunshine on your face. That will help you refocus your emotions.

berries · May 2020

I know you are right. I wish my doctor was more respectful to how these test make her patients feel.

I told her I have not been able to eat or sleep over the anxiety since the CT on Monday and to me, responding from her phone that she was out and she would "call later" is not a good answer or care. I have my husband as the baseline for how to treat patients.

Last week, he drove over to a patient's house to drop off medication and gives them his cell phone number in case they need to talk to him.

Beesie · May 2020

As a general rule, yes, I wish doctors had a better understanding of how anxious patients are as they wait for results. If you'd had your scan on Monday, you knew your doctor had the results but she left you hanging over the weekend - yeah, that would be bad. And unfortunately it's something I've seen happen around here too many times.

But having a scan on Monday and having the doctor personally respond to your email message and tell you she'll call with the results on Wednesday seems pretty darn good to me - a lot better than most, in fact. I'm sure your doctor is busy - who knows what she was doing yesterday that made her unable to access her computer. You say you have an appointment tomorrow; if your MO is anything like mine, she's probably got back-to-back appointments today and needs to squeeze in the time to review your results and call you.

Your doctor should be caring and responsive, and judging only by what you've described here, it sounds like she is. You are over-the-top anxious, not because of anything your doctor has said or done, but because you are waiting for the results of a test you specifically asked for. Your MO accommodated your request; the anxiety is on you, not because of anything she has done. You are not her only patient and she probably has patients in active treatment or who are Stage IV who are dealing with serious issues. I'm not meaning to be harsh, but all your posts are pointing the finger at your MO, suggesting that she has done something wrong or hasn't done all she could and that she has put you in this situation. No, breast cancer put you in this situation. Waiting for test results is something we all have to learn to deal with. And we all should be so lucky as to get our results within 2 days.

berries · May 2020

You're absolutely right, Bessie!

I have very high anxiety even before BC and a strong fear of dying and death. When I was little, I used to look at framed photos of my mom and dad, cry so hard and mourn their lives and cry that they were soon going to die. They were in the next room to me, perfectly fine!

Rewind years later, I wake up often in night sweats thinking that my dad has passed away or something terrible has happened. This anxiety has been going on for years. Last week, both my parents didn't answer their phones for an hour, which is very unusual for them (my mom is glued to her phone), so my mind jumped to the conclusion that someone horrible happened. Three of my aunts and uncles went to their house and they were just sitting there, snacking on the table while their phones charged.

I recognize this part of me and I so badly want to change it. I am seeing a psychologist that specializes in Young Adult cancer and trauma, so that has helped slightly, but the fear is still there.

I've expressed this to my MO that these tests give me a lot of anxiety. I told her, I can't sleep or eat or think or work, yet she has had these results since Monday. All I was trying to say is, a little compassion could go a long way.

I am not her only patient, this I know. But I'm probably one of a few that have Thanatophobia and breast cancer, so waiting for test results that could potentially mean I could die is especially hard for me. No blame is being put on anyone but my mental health.

gb2115 · May 2020

I hope you hear news soon. I have to say though, working in the medical field, that you really have to allow them time to do their work. You don't know what is going on in the office, and even though you are anxious, she could have 20 highly anxious patients that need attention.

berries · May 2020

You are right, gb. and I am trying to put that into perspective. I know she was not in the office or near a computer yesterday, and she promised she'd call today. Those are facts and what my mind does is weave in micro stories, like she must not want to break this bad news to me or she is delaying telling me... the facts are that I got a CT scan 7 months after a perfectly clear one and after finishing treatment, I decided I wanted to do another one. My MO agreed and I scheduled it on my own for Monday. She did not see results yesterday and will review them at some point today.

I'm resting in the fact that my prognosis is good. I had clear margins after surgery. I am doing well on adjuvant Xeloda (again, my idea) and the changes of a CT so soon after treatment is probably rare.

Like I said, these are facts, but sometimes my mind makes tries to find reasons for why certain things are happening and I have to remember that the things my mind creates are not actually facts, but fear.

xx

Moomala · May 2020

berries I have anxiety like that and I just lost a ton of weight because of it between a scare in my lungs ( I have lung mets but this looked like lung cancer) Covid and then last week's scans. Nothing can stop it, I seem to be wired that way. I've been sick since Saturday( recovered yesterday) and today I had to have a Covid19 test. I was so anxious I threw up before we left for the test. As we pulled into the parking lot for the test suddenly I started to calm down and realized ok I'm doing this, I terrified of the test but I'm doing it. I did it and was not that bad. Now let's hope the results are negative.

I am getting better at scanxiety but it has taken a long time. I wait a week or more to see my oncologist for results. I can't change that - it's her schedule. Medications for anxiety, like anti-depressants, do not work for me. I take alprazolam at night for turning my brain off. I have been metastatic for a little over a year and I am just now getting better at it. Give yourself a break and feel how you feel. My mother always tells me I know nothing until the doctor tells me something. That mantra has helped me quite a lot.

I am sure you will be getting great news soon! From your anxious friend Moomala!

berries · May 2020

Hi all, thanks for all your positive energy, but it looks like i was right to be worried. The CT scan showed 5 skeletal foci, mostly in the ribs and sternum area. my MO is concerned and is going to biopsy and I will have a full bone scan as soon as possible.

This is not what I expected, but in worrying, I think prepared myself.

Beesie · May 2020

Damn, sorry to hear that.

Good luck with the biopsy and bone scan.

MikaMika · May 2020

Hello,

Sorry about your scan.

Did you finish radiation a few months ago?

Maybe it's just radiation damaged your bones slightly? My RO suggests to wait 2-3 months after the last treatment, and then get scans (if possible, of course).

berries · May 2020

hi MikaMika

Yes. I just finished radiation on my left side a few weeks ago (where the lesions were found), holding out hope that this is what it might be, but I’m prepared as I think someone can be. I just thought I had more life left. I wanted kids and grow old with my husband.

MikaMika · May 2020

Fingers crossed for your good results!

🤞🤞🤞

Can't sleep or eat... Should I be worried?

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