Topic: How do you control the fear of recurrence?

Forum: Mental Health: Because Cancer Doesn't Just Affect Your Breasts — Meet and support others who are affected by these issues around anxiety, depression, and other emotional effects.

Posted on: Jan 29, 2021 10:06PM

Posted on: Jan 29, 2021 10:06PM

hray1993 wrote:

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?

Diagnosed at age 26 with no family history and no genetic mutations. Cancer doesn’t have an age. 5% ER+, 20% PR+, HER2-. Treating like triple negative Dx 12/19/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy 2/13/2020 AC + T (Taxol) Immunotherapy 2/13/2020 Surgery 8/3/2020 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 12/1/2020 Xeloda (capecitabine) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Jan 31, 2021 03:40AM Nigia wrote:

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.

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Jan 31, 2021 07:07AM obsolete wrote:

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.

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Jan 31, 2021 10:17AM b-a-p wrote:

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


Dx 8/17/2018, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy 9/18/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery 2/26/2019 Mastectomy; Mastectomy (Left); Mastectomy (Right) Radiation Therapy 4/29/2019 Whole breast: Breast, Lymph nodes, Chest wall Targeted Therapy 10/1/2021 Ibrance (palbociclib) Hormonal Therapy 10/1/2022 Faslodex (fulvestrant), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC, Stage IV, metastasized to liver, ER+/PR-, HER2- Chemotherapy Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery
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Jan 31, 2021 12:13PM sunshine99 wrote:

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 Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External Local Metastases 5/5/2020 Radiation therapy: Bone Radiation Therapy 5/12/2020 External Local Metastases 5/12/2020 Radiation therapy: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Feb 3, 2021 03:45PM lovelau wrote:

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

Dx 10/2016, LCIS/ILC, Right, 1cm, Stage IB, Grade 2, 1/24 nodes, ER+/PR-, HER2- Surgery 1/1/2017 Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy (Left); Mastectomy (Right)
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Feb 3, 2021 04:36PM minustwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 3, 2021 05:02PM mindig66 wrote:

@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!

Dx 7/3/2003, IDC, Right, 2cm, Stage IIB, Grade 3, 2/13 nodes, ER-/PR-, HER2- Dx 7/18/2020, IDC, Left, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR-, HER2- Chemotherapy 10/8/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/3/2021 Hormonal Therapy 4/1/2021 Femara (letrozole)
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Feb 4, 2021 08:53PM PalBuddy wrote:

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..

Dx March 2018. Left breast, 3 tumors -1.3cm, 1.2cm, 0.8cm. ER+PR+ HER-. Stage 1, Grade 3. Lumpectomy & Radiation. On 5 years of AI Letrozole. Oncotype: 19.
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Feb 4, 2021 09:04PM 2019whatayear wrote:

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.

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Feb 7, 2021 07:30PM PalBuddy wrote:

MindiG56 - I keep panicking again and then coming back to read your post.

Just wanted to let you know it was inspiring. 💕

Dx March 2018. Left breast, 3 tumors -1.3cm, 1.2cm, 0.8cm. ER+PR+ HER-. Stage 1, Grade 3. Lumpectomy & Radiation. On 5 years of AI Letrozole. Oncotype: 19.

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