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Topic: Stressing over 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: Jul 13, 2021 12:11PM

ARmom4 wrote:

Hey yall! I'm 17 months from diagnosis. Stage 1A. Triple positive. Ki-67 55%. ATM mutation. BMX. Attempted chemo- allergic. Herceptin and now Tamox. Also, total hysterectomy. NED.

Lately I find myself sort of obsessing over the possibility of a recurrence. I'm looking up stats, reading posts about recurrence here, and have read numerous studies(Beesie I need you!). I find some that are promising. Like lower stage and BMX mean risk is low. Some are not great like high Ki67 and Her2+ meaning more aggressive and therefore more likely to come back. Then, there's the ATM gene. My DNA has a problem repairing itself.

How do I move on? How do I just let it go? Is that even possible?

Diagnosed age 35. ATM gene mutation.Severe reaction to Taxol and Taxotere. Just Tamoxifen now Dx 1/3/2020, DCIS/IDC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 2/10/2020 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy 3/26/2020 Herceptin (trastuzumab) Chemotherapy 3/26/2020 Taxol (paclitaxel) Chemotherapy 4/16/2020 Taxotere (docetaxel) Hormonal Therapy 5/28/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/30/2020 Prophylactic ovary removal Surgery 3/2/2021 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/7/2021 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 13, 2021 12:23PM ElaineTherese wrote:

Hi!

One thing to keep in mind is that HER2+ cancer is most likely to recur in the first 2-3 years after diagnosis. So, your level of worrying should go down after 2023. ((Hugs))

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Jul 16, 2021 03:56PM ARmom4 wrote:

bump

Diagnosed age 35. ATM gene mutation.Severe reaction to Taxol and Taxotere. Just Tamoxifen now Dx 1/3/2020, DCIS/IDC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 2/10/2020 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy 3/26/2020 Herceptin (trastuzumab) Chemotherapy 3/26/2020 Taxol (paclitaxel) Chemotherapy 4/16/2020 Taxotere (docetaxel) Hormonal Therapy 5/28/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/30/2020 Prophylactic ovary removal Surgery 3/2/2021 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/7/2021 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 16, 2021 04:49PM Spookiesmom wrote:

I was stage 3, grade 3 at first dx. I was told I was high risk for reoccurrence. When? We don’t know. Did I worry, stress, loose sleep? No. I just picked up my life, carried on. No Dr Google, just sort of paying attention to any changes.

So I found a lump. Yep, it was back on the other side. Surgery and rads. Ibrance and letrozole. Will I have a 3 dx? Don’t know. Suppose it’s possible. Am I worried? Not really.


First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Jul 16, 2021 10:39PM 2019whatayear wrote:

It's really hard not to worry when you are out of active treatment. You can try different stress and anxiety reduction techniques, some classes might be available via the medical center where you had treatment?

Big hugs I understand the worries

I do writing to help sometimes I blog about it, and I have been having some success with an imaginary worry box.

I can take out the box open it up and then write about my worries for 15 minutes (I set a timer) and then when the timer goes off then I close the imaginary box and put it away until tomorrow. The hardest part for me is around any medical tests or appoitments.

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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Jul 19, 2021 03:16PM ARmom4 wrote:

ElaineTherese- There's the silver lining! Thank you.

Spookiesmom- Glad you're not worried. I am.

2019whatayear- Thank you for your understanding and the wonderful suggestions! Love the worry box idea.


Diagnosed age 35. ATM gene mutation.Severe reaction to Taxol and Taxotere. Just Tamoxifen now Dx 1/3/2020, DCIS/IDC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 2/10/2020 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy 3/26/2020 Herceptin (trastuzumab) Chemotherapy 3/26/2020 Taxol (paclitaxel) Chemotherapy 4/16/2020 Taxotere (docetaxel) Hormonal Therapy 5/28/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/30/2020 Prophylactic ovary removal Surgery 3/2/2021 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/7/2021 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 3, 2021 01:04PM Maja2213 wrote:

ARMom I read your post and saw that, 11 years ago, my diagnosis and treatment were very similar to yours: Stage 1A, triple pos, but I was 44 years old. I was treated with Herceptin and Taxol and just finished, in April 2021, 10 years of Tamoxifen. (I didn't go through menopause til sometime in year 8 of Tamoxifen so I was never switched to an AI.) I just recently found out that I have an ATM gene variant.

None of us can predict what the future may hold, but I wanted to share that not only am I here 11 years later, I have also had no signs of any recurrence. Not even an abnormal mammogram of any sort. Of course, the annual mammogram is still very nerve-racking and probably always will be.

I hope that 10+ years from now (any many more years beyond that) you will still be recurrence-free and able to encourage other survivors. And remember, research and treatments are always improving. I hope this helps even if just a little bit.

Dx 10/1/2010, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Sep 3, 2021 01:19PM Racheldog wrote:

Glad this thread was started. I am still in active Herceptin treatment and hope to finish soon. Has been a long year. I am older but this fear of recurrance has really messed up my thinking about the rest of my life. I had plans in retirement but not this. I started a few sessions with an NP/psych-oncology person who is experienced. I don't know. Telling someone to stop going to Zoom meetings (not a bad idea as too many patients in those groups were there with recurrances) but also to stay off blogs like this site too. I try to get off googling information but that has also been difficult. I am early stage but this dang HER+. It is nice to hear some on this post who are out so many years.

Also, what is the Ki-67? I was never offered that test as Her2+.

Dx 9/2020, IDC, Left, <1cm, Stage IA, Grade 3, ER+/PR+, HER2+ (IHC) Radiation Therapy Whole-breast Chemotherapy Other Surgery Lumpectomy: Left
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Sep 3, 2021 01:30PM ARmom4 wrote:

Thank you Maja2213. It does help.

Racheldog: KI-67 was included in my surgical pathology report. It tells how fast the cells are dividing.

Diagnosed age 35. ATM gene mutation.Severe reaction to Taxol and Taxotere. Just Tamoxifen now Dx 1/3/2020, DCIS/IDC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 2/10/2020 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy 3/26/2020 Herceptin (trastuzumab) Chemotherapy 3/26/2020 Taxol (paclitaxel) Chemotherapy 4/16/2020 Taxotere (docetaxel) Hormonal Therapy 5/28/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/30/2020 Prophylactic ovary removal Surgery 3/2/2021 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/7/2021 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 21, 2021 07:32AM sunshinegal wrote:

Oh, that anxiety is so real isn't it?

The best advice I've read on this site is not to rehearse a tragedy.

Somehow that one little phrase cut through all the catastrophic thoughts I was having and I really connected with the idea that I was only punishing myself by pre-worrying about something that hasn't happened, and is not necessarily ever going to happen.

I hope that helps if even a little bit.


Dx 10/7/2010, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/4 nodes, ER+/PR+ Dx 3/22/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Sep 21, 2021 07:52AM ruthbru wrote:

I did a couple things that helped. This sounds dumb, but I scheduled "worry time' on my calendar. When I started having negative thoughts, I 'had to' set them aside until then. I also kept really busy. I took up some hobbies and activities that I hadn't taken time to pursue before. I researched, planned, and took trips to new places, and I started to exercise a lot (good for you mentally, physically, and the biggest non-medical thing you can do reduce your chances of recurrence). If you make a full, interesting life for yourself, with time, your worries will recede.



"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Sep 21, 2021 11:48AM ARmom4 wrote:

sunshinegal: It's the worst! I think "What if this is something? If I don't get on top of it now, it might be really bad later." But it probably really is nothing. I hear you about pre-worrying. Thanks for that.

ruthbru: I am definitely trying to have a fuller, happier life. I struggled with depression for a long time. I'm trying to be better.

Diagnosed age 35. ATM gene mutation.Severe reaction to Taxol and Taxotere. Just Tamoxifen now Dx 1/3/2020, DCIS/IDC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 2/10/2020 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy 3/26/2020 Herceptin (trastuzumab) Chemotherapy 3/26/2020 Taxol (paclitaxel) Chemotherapy 4/16/2020 Taxotere (docetaxel) Hormonal Therapy 5/28/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/30/2020 Prophylactic ovary removal Surgery 3/2/2021 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/7/2021 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 21, 2021 12:56PM ruthbru wrote:

I found this quote just the other day:

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-

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