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How do you control the fear of recurrence?

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How does everyone cope with the fear of recurrence? I was diagnosed in dec 2019 at age 26 with triple negative IDC stage 2 grade 3. My cancer was tough and it put up a good fight, it was extremely aggressive but finally knocked it out with AC and had a complete response at time of surgery. All my treatment is below if you want to read it and I’m currently on a low dose chemo pill every day for a year to keep it from coming back but every single day I’m constantly worried it will come back. I’m right at 6 months cancer free and some days are better than others I try hard to not think about it, but every single day I think about it. I’ve had some pain in my cancer breast the past few weeks and we have an ultrasound scheduled to look at it. We think it’s just scar tissue and there’s no lump we’re just getting the ultrasound to be certain it’s scar tissue but it’s so hard to not think the worst. Every single day I think about cancer and scared about recurrence even though I’m currently on a chemo pill so I shouldn’t worry but I still do. Is the worry normal this soon out? Does everyone else worry daily?

Comments

  • mountainmia
    mountainmia Member Posts: 857
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    hray, the worry is completely and totally normal. It is very rational. You had a very bad thing happen, and you are still vulnerable. Of course you're afraid. Please don't worry about the worry! Except, if it is anxiety that gets in the way of taking care of your life, then do get some help for the anxiety.

    I was diagnosed early in 2019, just short of 2 years ago. TNBC, stage 1, grade 3. I have said many many times that it is harder mentally than physically. I still worry, every single day. I doubt it will fade for a long time.

    I wish we could sit together with a cup of tea (or a shot of whisky) and talk it through. I think it's something people who haven't experienced it, they can't quite get it.

  • hray1993
    hray1993 Member Posts: 220
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    I definitely think people can’t get it if they haven’t experienced it. Everyone keeps telling me to quit worrying and move on but it’s not that simple. And I’m stressing about this ultrasound I have coming up even though it’s just to make sure nothings wrong but the ultrasound I got when I was diagnosed was to “just make sure it’s a cyst” but no it was cancer and my mind keeps going back to that. And I try hard to stay positive but it’s so hard and I feel like I talk about it way too much in my every day life but it’s constantly on my mind even before this ultrasound coming up, but now with this it’s so much worse. I try to get my mind off of it but I just can’t and people don’t understand how hard it is to not think about cancer after you’ve had it

  • kmom57
    kmom57 Member Posts: 177
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    Hray, I think you are right that most people who haven’t had cancer can’t really get what you are going through. I think that’s partly because We’ve heard so much about how BC is so curable, early screening always catches it before it’s bad, etc, that they don’t really get the reality that is. Or how hard it is. We’ve kind of pinked it up and stuck a bow on it. I also think that some people are unable to be of support because it scares them too much. They see someone who did “all the right things” and still got breast cancer. Or who, like you, was young with no genetic risk factors, and still got breast cancer. I think that’s scares some people, because it could be them. My advice would be to know who those people are, and don’t subject yourself to the frustration and hurt of trying to get support where you won’t find it.

    As to how to stop worrying about fear of recurrence, I wish I knew. Whether it’s normal to worry so much this soon, I don’t know. But I do too, every day, and I’m not far ahead of you. But there are many people on this board who have been where we are, and they say that there will come a time when it won’t be the biggest or only thing on our minds. I believe them. So hang in there and we will get through this. And maybe, maybe don’t try to “be positive” all the time. Instead, look for the moments of joy. They are there. That’s what my daughter and I do, and there have been many. Maybe if we can fill up the day with enough of them, there won’t be much room left for fear. What do you think?

  • peregrinelady
    peregrinelady Member Posts: 416
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    The first year is the hardest, although it never really goes away. At least that is how it is for me. The best advice I heard on this board was that there is no point in worrying since it won’t change the outcome. And if you do recur, you don’t want to have wasted precious time worrying. I know, easier said than done, but I now go for hours and hours where cancer doesn’t even cross my mind.
  • norcals
    norcals Member Posts: 207
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    Hray1993,

    I was diagnosed with stage 3c, grade 3 TNBC in June of 2019. My treatments are listed below and are similar to what you went through, except I had Xeloda for 6 months instead of a year. After each treatment, I was so worried about recurrence, that it stressed me out every time I had to wait for the next treatment. When I started Xeloda, I developed headaches, which freaked me out, so I had a brain MRI, which came out clear. Then during the middle of Xeloda, I developed a cough, and again, CT scan showed lung inflammation/infection but no cancer. When I finished Xeloda, I was ready to start another treatment because it was frightening not to have the safety net of treatment. It’s been over three months since I finished Xeloda and all active treatment. Every ache and pain makes me a little stressed. I have been taking the advice of the women on this website and I wait two weeks to see if the pain goes away before talking to my oncologist. I don’t think my fear will subside until after the 5 year mark. I think a lot of TN patients have the constant stress and fear the first few years after active treatment. Daily walks and spending time doing things that are enjoyable everyday, even binge watching tv, help me a lot with the stress and fear

  • peregrinelady
    peregrinelady Member Posts: 416
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    I wanted to add that after thinking about my previous comment, that I really only think about cancer when I come here. I usually check in daily, less when the weather is nice and I can be outside, and the rest of the day I really don’t think about it at all. Except.... when I have an appt. coming up as I do this Friday with my oncologist. NorCal is correct, at least with triple negative, you can breathe a sigh of relief after 5 years when your risk is reduced. I am considered high risk after 5 years according to BCI, so I need to manage the worry for the rest of my life, basically. That is why I try to limit my worry time to when I visit the board.
  • moth
    moth Member Posts: 3,293
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    I went back to school full time in an intense compressed program, while still doing rads. I was too busy to worry about this as I was worrying about exams, clinicals, my kids, my dogs....

    I did implement what was evidence based - exercise and some green tea. https://community.breastcancer.org/forum/72/topics...

    My diet was good before so I just tweaked it a bit. But I made sure to not skip exercise and sip my green tea and enjoy myself as much as I could. Those things i could control. The rest I couldn't but I felt like if I did what I could, I'd have no regrets.

    I think speaking to a counsellor regularly is also a good idea.

  • redkitty815
    redkitty815 Member Posts: 18
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    I am still in treatment and have so many of the same worries. I wasn’t cancer free after chemo and I had a positive node (still positive but no longer bigger than most people’s primary tumors) after chemo. My pathology changed from Her2- to Her2+ between biopsy and chemo so I am just hoping that hitting it with radiation, an extra round of chemo and a year of Herceptin will mop up what’s left. But I am at high risk of recurrence and I can’t change that and so I worry about it.

    The advice here is really good-I try to give myself a time and space to worry and then actively push it aside afterward. I try to control everything I can-I exercise daily. I cleaned up my diet. I have lost enough weight to be at a healthy BMI. I also force myself to take breaks from these boards. It is a wonderful comfort to be among people who understand, but spending time here de facto means thinking about cancer and sometimes that’s the wrong thing for me. Like others have said, I hope and trust I will get to a time in my life where I don’t worry daily, but I’m not there yet.

  • 2019whatayear
    2019whatayear Member Posts: 468
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    I sure wish I knew a great way to not have so much fear of recurrence. It sucks!!!!! I will say the time leading up to a scan is the most difficult- and the waiting for the results of a scan are excruciating.

    What works for me - I only come here max 1x a day. I exercise daily to relieve stress and b/c that is supposed to reduce recurrence and I keep a journal. Each day I tell myself I am allowed to choose to be happy. I still worry a ton I think I am going to try MSBR or is it MBSR ? Whatever it is I think it could help.

    Big hugs

  • mountainmia
    mountainmia Member Posts: 857
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    2019, it's MBSR, Mindfulness Based Stress Reduction. If you have a place to do that, I recommend it. I think it's a good way to learn some strategies for anxiety management.

  • Nigia
    Nigia Member Posts: 1
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    I'm still learning how not to worry. I check my breasts for lumps 100 times a day. It used to be more, but I'm getting better. I keep a journal to write out my anxiety and I got a therapist just to talk about my BC. I love my husband but I don't want him to feel obligated to try and fix something that can't be. Fingers crossed that this might help you.

  • obsolete
    obsolete Member Posts: 333
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    Hi, life can be so very unfair. I'm especially sorry for those of you who are so very young, struggling with the uncertainties of BC recurrence. You are my daughter's age.

    Many of us have gone thru and continue to experience similar feelings of personal grief. It's so very personal, and it is "grief" on any level. The following insight might be helpful, but the feelings may have seemed to disappear from my life after 7 years, on the surface, but deep down my feelings of fear never really have completely gone away forever. But time does heal the majority of those fears and greatly ease the emotional pain & anxiety. It varies on how deep and personal our lives make it.

    You have many good years ahead of you, so please give yourself permission to grieve. Special hugs and best wishes to you all for gentle healing.

    https://www.healthline.com/health/stages-of-grief

  • B-A-P
    B-A-P Member Posts: 409
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    I get it. It’s really hard not to worry especially when you’re so young. My diagnosis was made late because the medical professionals wouldn’t listen to me due to my age (was 27 at first symptoms and 30 at dx) So I was de novo metastatic from the get go. I responded beautifully to treatment and was given curative intent. I had my drs floored and they didn’t know how to proceed with monitoring. For a while I felt amazing but the fear was still there everyday. I almost got to two years NED before I got the dreaded recurrence. I haven’t been able to update my sig, I can’t figure it out , but anyway , the worst happened and no amount of worrying prepared me for the blow. I wish I hadn’t worried so much. I wish I lived a little more freely , and did the things I wanted to with my clean(Er) bill of health.
    It was a big wake up call. Just live. It would be unrealistic to say not to worry. It really would be . But if you can worry less and be in the moment more , life will feel better. Try a journal. Spend 15 minutes getting your worries out on paper, close the book and try to have better days. Easier said than done I know <3

    There’s a quote that resonates with me .. it says something like “when you worry about something you’re suffering twice” It put a lot into perspective for me

    <3

  • sunshine99
    sunshine99 Member Posts: 2,644
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    It is hard not to worry. I do remember, when I was first diagnosed in 2007, that cancer filled my thoughts every day and night. Ever so gradually, it went to the back of my mind and not the front. I do remember one day, after finishing active treatment, that sometime in the afternoon, I realized, "Hey, I didn't wake up thinking about cancer this morning!" That was a great day!

    It's your journey, though, so don't let anyone tell you how to feel or not feel.

    Carol

  • lovelau
    lovelau Member Posts: 42
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    hi sunshine and others, I am 4 years out. I have constant anxiety and fear. The oncologist said after you had a dbx you don't need tests, so when I read about people getting markers and stuff like that I wonder if I am doing ok. I want to resume my life again. It's hard with covid. I do lots of prayer. I exercise by walking every morning and then do some Bible study ( did not do that prior to bc) and dr appts but other than that I have not gotten back to my life.

    I had dbx with no recon. Seeing therapist and a class for dbt, and she said "all therapist have cbt and you don't need someone who specializes in cbt for breast cancer, and besides you don't have bc anymore so you can just forget it " I don't know why it doesn't seem to work for me. I want to have a whole day without thinking about it. My brother says keep busy. When I tell people my activities they say I'm busy but I think I'm not busy enough or my thoughts would change.

    I'm in Honolulu and have not found anyone who is a specialist in cbt for breast cancer like that.

    If there is anyone who had that kind of reaction, and was able to pull themselves out please let me know exactly what you did. I really want to feel better and forget what I went thru. The doctors said I am looking for a magic pill, I'm looking for a way to get my mind to forget for a while.

    Thank You

  • minustwo
    minustwo Member Posts: 13,147
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    Nothing wrong with a "magic pill" if that's what you need to get over the anxiety. And breast cancer certainly caused anxiety - only ramped up by people locked in with COVID precautions. Ask for a referral to a mental health group - psychologist or psychiatrist. Four years down the road you need to learn to let it go.

  • mindig66
    mindig66 Member Posts: 41
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    @Hray - lots of good words from others! I just will chime in my 2 cents! I was dx 17 years ago after the birth of our 4th child. I was 37 and knew no one my age who had been where I was and was scared to death! I completed my surgery and treatments and was cancer free for 17 years and I will tell you I was a mess each year before my mammogram and I over-worried about every ache and pain and let myself be robbed of too much time! Cancer continued to steal from my life far too often!

    This past summer I was dx with a 2nd primary (never heard of such a thing and I apologize if that now goes into your worry column) BUT what I want you to hear is this - God forbid you ever hear those words none of us wanted to hear, my experience is my worry was as bad if not worse than the reality! I hate cancer, but I am still standing! I will not let my peace of my mind be robbed this time and I thank God and medicine that I am cancer free once again and my advice to myself and to other is simply do not rehearse a tragedy! Don't let your thoughts destroy your peace of mind. Thoughts come and hope you have people in your life who you can talk through things!

    I am so glad for this community!

  • palbuddy
    palbuddy Member Posts: 7
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    I'm very glad I stumbled across this thread. I am almost 3 years out from diagnosis. Over the last few weeks, my lymph nodes got backed up and there was a tiny bit of swelling in the arm by my elbow. And I've been freaked out ever since. I went for a lymph drainage treatment today and it seems to have cleared them up for now. I guess. I'm told it's more likely to be maybe a bit of lymphadema than a recurrence, but I've gone into such panic mode. Bordering on panic attack really.

    I emailed my Oncologist about the arm and the Physician Assistant said she didn't understand - was I concerned about lymphadema? Wanted me to send a photo and there's not much to see...and I guess they can't be that worried if lymphadema was what came to mind. It's a new Oncologist (to me) because my wonderful one died suddenly.

    Anyway, I think someone said something about the worry being as bad as the cancer? Or something like that. mans, I am going around in fear circles...

    May try a Xanax...Hope my fear doesn't stress anyone else out..



  • 2019whatayear
    2019whatayear Member Posts: 468
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    Listen, today I did an online yoga thru my library and when we started there was some centering breathing stuff, and all of a sudden I was having a PTSD moment because the yoga breathing triggered my mind --to the breath holds from radiation.

    We have all been through serious trauma, managing the fears are a constant work in progress as far as I can tell.

  • palbuddy
    palbuddy Member Posts: 7
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    MindiG56 - I keep panicking again and then coming back to read your post.

    Just wanted to let you know it was inspiring. 💕