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Constant fear of reoccurrence

Constant fear of reoccurrence

Posted by Sh0384 on Jan 8, 2021 6:51 am

I cant stop worrying about my cancer returning and it being terminal:( a little about me. I was diagnosed june 2019 at the age of 35 with stage 3 invasive ductal carcinoma. At the time I was diagnosed 95% estrogen positive. Progesterone negative her 2 negative. I did 4 months of chemo. Ac/taxol. Had a double mastectomy nov 2019. Started 35 rounds of radiation in Jan. Was supposed to be done after radiation. Well when they did my mastectomy they found a small secondary tumor fused to my large one. That one was her 2 positive. I started herceptin in feb 2020. I have 4 herceptins left. I'm excited to be done but I'm also so scared. I feel safe while getting treatments. Like I'm.fighting anything that could come back. The thought of Just playing the waiting game for the next 5 years is causing me so much stress and anxiety. I'm a single mom to 7 kids. Age 2-13. They need me and I cant stop freaking out 😭 they had me on zoladex and anastrozole but my body reacted so badly to it they took me.off and put me on tamoxifen. My oncologist told me in the beginning because I was 95%estrogen positive he didnt feel tamoxifen was strong enough for me. I was offered a full hysterectomy by my gynecologist  because of constant cysts on my ovaries and my cancer. Anyone have a full hysterectomy at a young age and be ok with it? My body didnt handle the medically induced one so the thought of permanent also scares me lol sorry for the long post I just needed to get it out somewhere. I stay so positive and put a smile on my face for my kids and family but inside in a nervous wreck. I'm speaking to a therapist but it doesnt seem to be helping either. Thanks in advance 

Re: Constant fear of reoccurrence

Posted by Kims1961 on Jan 8, 2021 5:45 pm

Sh0384‍  Your post hits the nail on the head about the journey of cancer.  There are 2 parts - the physical ( treatment side) and then the emotional ( mental health side).

Picking Up the Pieces :    was recommended to me . It discusses that fear of recurrence and strategies to help. 

The other resource is:  Life After Cancer - from CCS:  https://www.cancer.ca/~/media/cancer.ca/CW/publications/Life%20after%20cancer%20treatment/32060-1-NO.pdf

The Life After Cancer publication has some great tips about developing a "Wellness Plan" or sometimes called a Survivorship Plan  - how to take care of yourself after treatment, in particular , your mental health.  That fear may never really go away, but we can "store" it away so that it doesn't interfere with living.

You are not alone in this.  Take care.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Constant fear of reoccurrence

Posted by JenDavid on Jan 9, 2021 8:20 am

I am also on Tamoxifen though I'm older than you....49....still premenopausal. I have a bunch of physical side effects to this drug but several of my fellow survivors describe more serious mental and emotional side effects from Tamoxifen like anxiety and depression. This may be amplifying your feelings. Do you have access to a support group? This forum is good plus it's good to connect with others (even virtually these days!) so you know you're not alone.
I can also share the one thing that keeps me going when I have these panic attacks about recurrance (and I'm pretty sure everybody has them...some have them more often...). I know everything that cancer has taken from me and I say to myself, "cancer is not going to take my serenity and I'm not going to give it any more of my time because my time is precious and though my future is uncertain, I have more important things and people in my life to think about."

I also think about this meme that someone sent me. Ha, ha, I know, philosophical advice from a social media post. But it was Snoopy and Charlie Brown. Charlie Brown says, "One day we're going to die." And Snoopy says, "Yes. But on every other day, you're not." So I focus back to today and choose to be grateful for this day I've been given.

Re: Constant fear of reoccurrence

Posted by Lala74 on Jan 9, 2021 8:42 am

Sh0384‍  I agree with what everyone has said so far.  I’m 46 diagnosed TNBC with 3 kids ages 9-14 yrs.  I was diagnosed in October 2020. I’ve just received my first infusion of AC (which kicked my butt).  I’ve just woken up and can still recall that moment between dream state and wakefulness when I don’t remember having cancer.  2 seconds later the awful reality comes flooding back to me.  TNBC comes with its own set of concerns.  Primarily,  metastasis to distant areas of the body.  So while I fight the good fight now I could still get sick and die in the future.   It’s terrifying.  I agree that while the treatment is gruelling, it provides a safety net of sorts. I have to keep reminding myself to live day by day.   I’m sorry I can’t provide more supportive words and strategies but only because I completely emphasize with you. 

PS 7 kids!  Kudos to you mama.  You’re already my hero 

Re: Constant fear of reoccurrence

Posted by Tabby9 on Jan 9, 2021 10:22 am

Hi Sh0384,

You’re not alone in your fear of recurrence. I was Stage 3 HER2+ and ER+ 90% and PR+10% in my right breast and Stage 2 HER2+ ER- and PR+ in my left breast. My breast cancer journey started in Nov 2018. I started with chemo, then a bilateral mastectomy and finally 25 rounds of radiation. 
A couple of months ago, I had my ovaries and Fallopian tubes removed as a precaution. 
A little over a month ago I felt my lymph node just under my collarbone was, and still is swollen. I have an appointment to see my surgeon this Thursday. I’m hoping it’s nothing but I’m thinking ahead about what I will do if it has returned. One thing I do know is that I’ll fight it again if it has come back. Never ever give up. My children are all grown up and gone. You are so strong to have gone through this cancer AND have al your little ones!

I think we all secretly worry about recurrence, but this keeps us vigilant and aware of our bodies. But don’t let it stop you from enjoying life. We’re here NOW, TODAY! Your a strong woman, and your not alone! If you want to chat more just drop me a message.😀