Struggling with Recurrence Fears

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seastarz
seastarz Member Posts: 7
edited November 2019 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello, I'm new to the site, but am amazed at all the helpful information I've found here already.

I've been really struggling emotionally since I finished radiation in September. I was relatively fine from an emotional standpoint through my diagnosis, through chemo, through surgery, and through radiation. I started taking arimidex a few weeks ago, and so far it's been ok. Just mild side effects - general achiness.

I've been really struggling with my fears of a recurrence the last week or two. I'm very anxious all the time and I cry very easily (very unusual for me), and am having trouble not over-analyzing every little ache and pain. For instance, I've had a pain in my shoulder blade for the last week that feels like a bruise (but there's no visible bruise), and I've spent hours online trying to figure out if it could be bone mets. Before breast cancer, I wouldn't have even given it a second thought. I'm not sure if it's something I should be concerned about or not, to be honest.

This anxiety is completely new to me, and I'm not sure how to manage it. Is it "normal" to just start experiencing this anxiety so far into the process? Could it be a side effect of the arimidex?

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2019

    Seastarz,

    Welcome to Breastcancer.org! We're so sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find our Community and incredible source of advice, information, and support -- we're all here for you!

    Fear of recurrence is a very real and very common thing, for sure. You're sure to hear from others soon who can empathize with you and offer some tips to help keep these fears to a minimum.

    We look forward to hearing more from you as you navigate the boards. We hope you find some relief soon!

    --The Mods

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  • Euphoriaa
    Euphoriaa Member Posts: 235
    edited November 2019

    Hi seastarz, I understand you. I have finished active treatment (rads) in October and I also feel fear, bc has become an obsession for me. It is my last thought before sleeping and the first one upon waking. I have read in these forums that it is a very common situation and it is normalizing a bit over time ... I hope so. I'm taking tamoxifen and I definitely notice that my anxiety and depression have increased considerably. I guess it will be the same with AI. Could the pain in your shoulder be due to rads? I have persistent pain in my radiate side, shoulder / shoulder blade / arm / fingers.

    I hope you get well soon

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  • seastarz
    seastarz Member Posts: 7
    edited July 2020

    Euphoriaa, thank you for your response! Everything you wrote is so relatable to me. Also, I never considered that it could be from radiation, but my pain is on the radiated side, and I definitely still have some other lingering tenderness from radiation, so maybe so. I'll call my oncologist if it lingers, of course. But mostly, I appreciate your response and knowing that I'm not the only one obsessing over all this stuff. This whole life after bc thing is trickier to navigate than I'd anticipated.

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  • smc123
    smc123 Member Posts: 71
    edited November 2019

    Seastarz, I can totally relate to your anxiety. You could look into counseling. My treatment center offered free counseling. Good luck.
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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited November 2019

    seastarz, wondering about recurrence is very, very normal. A general guideline given by many MOs is if any new ache, pain etc lasts two weeks get it checked out. Doesn't prevent worrying but does help to have the time limit, at least for me.

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  • wallycat
    wallycat Member Posts: 3,227
    edited November 2019

    Unfortunately, sometimes the further out we are, the more anxious we can become. There's less monitoring and less hands-on-care, so you feel you've fallen through the safety-net of constant vigilance. And we all read the stories of x-years out and having a recurrence, so the worry never goes away, sadly.

    I've had shoulder blade pain from exercise or something as simple as sleeping wrong. Best to you.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited November 2019

    It’s like after you finish active treatment, you have the brain space to worry about other things. I had these weird butt bone pains a few weeks ago and of course started googling bone mets. However, after a day or two my rational self returned and I realized I was being silly. If you’re getting fearful and can’t shake it, it might be time to talk to someone. However, I also think keeping busy can help. Lots of holiday stuff coming up to distract us, right?

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  • umakemehappy
    umakemehappy Member Posts: 42
    edited November 2019

    Hi Seastarz!

    I am a little further along than you but wanted to chime in that I have the EXACT SAME shoulder blade pain you describe. I've googled the heck out of it and am not finding anything (so, good news???) It's barely a pain, more like a bruise or pulled muscle. Everyone always says if you have the pain more than 2 weeks, have it checked out, but my random pains of the last year have all lasted a month or two before finally going away. And each one is of course another sure sign of mets (just in my mind, thus far).

    I've just recently found myself really sad (and mad) that I can no longer just have a little headache, or a cough, or a sniffly nose, without fearing death. This is a hard phase, for sure. ; ( Ingerp is right, distraction is the best medicine. On busy days, these thoughts never even cross my mind......

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited November 2019

    Totally normal feelings. Could also be PTSD. See that a lot around here. You have experienced a trauma, the same as war, or abuse. We all process this differently. Really suggest seeing someone who specializes in this.

    Best wishes.

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  • seastarz
    seastarz Member Posts: 7
    edited July 2020

    Very helpful advice from everyone. Thank you all so much for responding.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited November 2019

    Since I am far out from treatment (and like you was Stage IIA, Grade 3, did chemo, radiation, and took Arimidex), I thought it might be helpful for me to chime in. First of all, what you are going through is totally normal. When you are in treatment you are in a 'fight mode' at all times. It's a whirlwind of shock, harsh treatments, and (for me anyway), you just have to get through it. And suddenly, BOOM, you are done and sent out the door and things are supposed to all go back to normal. Well, they don't. Along with healing physically, you have to heal emotionally, You have to process all you have been through and try to make some sense of it, and maybe figure out how to MAKE something positive come out of it. I once read that however long you are in treatment, it takes that long again to heal physically (I'd say double that time). Emotionally, I think it took me about a year to process the whole thing. Here are some things that helped me move forward: get lots and lots of exercise (which will help with both the physical & emotional healing, plus help manage Arimidex creakiness), keep busy (especially doing fun and/or meaningful things), use this experience to get out of things that you really don't want to do and into things that you've wanted to do that you haven't taken time for in the past, update your wardrobe, hairstyle etc. (if you look good, you really do feel better), take a fun vacation (my niece was getting married and I remember being scared to book plane tickets 6 months out because I was afraid that would be good luck......just book the tickets, it will be liberating. When I would have an ache or pain, I would write it on my calendar for two weeks out, and I would NOT let myself think about it until then (taking a guided relaxation class or buying some meditation CDs can help). I had a lumpectomy so was obsessively checking myself for lumps. I put that on the calendar for once a month & do not poke around looking for trouble until the calendar gives me permission to do so. Make a big purchase, I remember being so nervous buying something expensive (which I needed) because, again would I be jinxing myself. Buy it anyway. This is what I eventually came to realize; I did all the medically advised treatments. I was doing all the things I could do to minimize recurrence chances (exercise, keep the weight down etc.). So it was either going to come back or not (which statistically it shouldn't for either of us). If it didn't, I was wasting a lot of physiological energy for no reason. If it did, I better get out and make as many memories as I could right now!!!! I hope some of my ramblings will help.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited November 2019

    I would echo the suggestions to consider a session or two with a counselor, perhaps someone who could also prescribe a short course of meds for anxiety and/or depression. A good support group may help too.

    The anti-estrogen effect of our therapy is another complicating factor in regulating mood and the ability to control obsessive tendencies. I did OK on tamoxifen, had poor tolerance of aromatase inhibition and am getting by on fulvestrant injections every four weeks now that I have metastatic disease.

    Realize that the same coping mechanisms which got you through early stage treatment will be there if the unlikely scenario of recurrence happens. You will be strong and do what needs to be done!

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  • seastarz
    seastarz Member Posts: 7
    edited July 2020

    Thank you ruthbru and vlnrph for the additional words of wisdom and encouragement. All of these wonderful comments have really helped me to put things in perspective. Also, on the advice of so many of you, I just called to schedule an appointment with the counselor at my cancer center. I'm hopeful that will help me figure out a way to better manage my anxiety going forward.

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