Stressing over recurrence

ARmom4

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?

ElaineTherese

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))

ARmom4

bump

Spookiesmom

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.

2019whatayear

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.

ARmom4

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.

Maja2213

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.

Racheldog

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+.

ARmom4

Thank you Maja2213. It does help.

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

sunshinegal

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.

ruthbru

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.

ARmom4

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.

ruthbru

I found this quote just the other day: