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 & other emotional effects.

Posted on: Jan 29, 2021 09:06PM

Posted on: Jan 29, 2021 09:06PM

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 2/12/2020 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 29, 2021 09:53PM mountainmia wrote:

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.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Jan 29, 2021 10:41PM hray1993 wrote:

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

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 2/12/2020 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 30, 2021 12:33AM KMom57 wrote:

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?

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/14/2020 Prophylactic ovary removal Surgery 5/17/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/30/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole) Radiation Therapy Breast, Lymph nodes, Chest wall
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Jan 30, 2021 12:54AM peregrinelady wrote:

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.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy; Mastectomy (Left) Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy; Mastectomy (Right); Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole) Hormonal Therapy 7/19/2020 Femara (letrozole) Hormonal Therapy 3/3/2021 Arimidex (anastrozole)
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Jan 30, 2021 01:14AM norcals wrote:

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

Dx 6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/23/2019 AC + T (Taxol) Chemotherapy 4/5/2020 Xeloda (capecitabine) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Jan 30, 2021 09:05AM peregrinelady wrote:

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.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy; Mastectomy (Left) Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy; Mastectomy (Right); Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole) Hormonal Therapy 7/19/2020 Femara (letrozole) Hormonal Therapy 3/3/2021 Arimidex (anastrozole)
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Jan 30, 2021 12:05PM moth wrote:

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.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Hormonal Therapy 12/15/2020 Femara (letrozole) Radiation Therapy 3/2/2021 External Local Metastases 3/2/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy)
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Jan 30, 2021 01:11PM redkitty815 wrote:

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.

Dx 11/26/2019, IDC, Left, 3cm, Stage IIB, Grade 3, 1/12 nodes, ER+/PR+, HER2- Chemotherapy 12/18/2019 AC + T (Taxol) Targeted Therapy 7/11/2020 Herceptin (trastuzumab) Chemotherapy 7/11/2020 Navelbine (vinorelbine) Surgery Lymph node removal; Mastectomy; Reconstruction (Left); Reconstruction (Right)
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Jan 30, 2021 09:02PM 2019whatayear wrote:

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

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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Jan 30, 2021 09:11PM mountainmia wrote:

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.

The rain comes and the rain goes, but the mountain remains. I am the mountain.

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