Having terrible scanxiety to the point where it rules my life

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LtotheK
LtotheK Member Posts: 2,095
edited August 2014 in Life After Breast Cancer

Yes, I should probably get therapy, but I have so many doctor's appointments in my post-cancer care that I really have been trying to coach myself. I was treated 4 years ago for a grade 3 IDC. I was young. It was small, stage 1. 

Every year, starting in June I work myself up about my August tests (mammogram and MRI).  Now they are a week away, and I've resigned myself to getting cancer again. Every year, it feels like they find something to worry about.  It feels like a matter of time before I have to go through this all again. I don't know if I could do it again. It took me four years to get my mental and physical state back.  I heal very, very slowly.

I need encouragement. We just adopted a gorgeous baby boy, and I'm having so much pain, suffering, anxiety and panic. I'm a normal, balanced, measured person. I get that no one has guarantees, I just feel like my attitudes are some kind of PTSD.

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  • linzer
    linzer Member Posts: 164
    edited August 2014

    I'm still in treatment so I feel like I'm the last one to offer you a suggestion although I certainly want to encourage you. You start by saying that you should go to therapy, which may be a good idea, but it probably won't work until you truly feel ready. I wonder if you had anxiety prior to your dx, or not. I think that makes a difference in how you approach it - but I could be wrong. 

    I would imagine that what you are feeling, to some extent, is typical. I am sure that I will be anxious when I'm done treatment and anticipating scan time and I'm not an anxious person by nature. If you could try to shorten the weeks of time that you "allow" yourself to be anxious that may be the best you can expect. Also, someone posted on another thread I read a few weeks ago saying how she worried a lot about recurrence and it didn't stop it from happening. That really resonated with me. I think the hardest part of the whole thing is that we do not have any control over our destiny. That's what makes it so tough to manage. If there was something we could do, we would.

    Congratulations on your adoption! My children were adopted as infants and I am so thankful and blessed to have them. Try to lose yourself in your child and maybe try to find someone to talk to (even if not a professional) so that you don't keep all of this bottled up. Also, this may sound weird, but maybe giving yourself X minutes per day to think about / worry about recurrence and then "put it away" till the next day. It will take discipline, but may be possible. If you truly think you're having a PTSD type of response, you should strongly consider seeking professional help because that is not something you should try to manage on your own. 

    I wish you well as you try to navigate this. I'm sure others who are post-treatment will have better advice and encouragement. 

    Linda

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2014

    I love your feedback, Linda. It is a kind of meditation.  I'm so happy to hear from another adoptive parent. Our baby is so beautiful and amazing, and it's like I am putting myself on hold in fear. I turned here because honestly, I feel like my friends--who are all wonderful, btw--just don't understand and are sorta "yesterday's news" about it.  I had one friend yesterday say, "well, we are all dying." Yeah, get it.  Not what I was looking for.

    During my first year after treatment, I had a mammogram, and they did what I now understand is pretty usual: they kept calling me back. As it mounted, I finally started weeping, unable to get it together.  I do think it is PTSD.  I think this is a poorly studied area for BC patients.  (Totally had anxiety before, tho ; )

    I am wishing you a thousand good wishes as you get through your treatment.  Truly, no one understands but us!

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  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2014

    The fear factor is alive and well in all of us. I was a basket case before I was DX so you can imagine how I am now. Had my last mammogram in May. While I was pacing in the waiting room I noticed 2 ladies calmly sitting and reading. One was 5 years out and the other one just had a recurrence after 7 years. I was so over the top scared. I asked them how they remained so calm and they said they were resigned to just dealing with whatever happened. I said how do you do that? They said practice. 

    I am a worrier by nature so I have to really practice hard. Not sure I'll succeed but am determined BC will not control my life. 

    Diane 

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  • 208sandy
    208sandy Member Posts: 2,610
    edited August 2014

    I am a lifetime worrier but after my Stage IV diagnosis (almost two years ago now) I have become resigned to whatever comes my way and it is SO freeing.  That said I do have an ongoing prescription for Ativan which around scan time I use quite liberally - rest of the time I hardly take it.  I have shortened my worry time to the day before first scan.  Please try to lose yourself in that baby boy, you are both so lucky to have one another - I am adopted as were my brother and sister and we had the best parents in the world and I know your son will grow up to know that about you too!

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2014

    I really thought there was something wrong with me that I can't be more "together". It sounds like this is normal stuff.

    Ironically, now that I have everything to live for: a new baby, sabbatical, a nice grant, a teaching career that is going well, I feel like the dark cloud inevitability is upon me.

    I already practiced this morning while holding my baby: the thought enters, I refuse it.  Read a book, going on a walk, and probably having a whiskey later today ; )

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  • jwilco
    jwilco Member Posts: 486
    edited August 2014

    My mammo/ultrasound is every August too.  It's been three years this Oct and I still get very worried.  But, I'm working on it!  I try to breathe and meditate to calm my nerves.  I've also started to look at this annual appt as my reassurance that all is well.  It does get a little easier but it never fully goes away...that worried anxious feeling at each appt.  

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  • leggo
    leggo Member Posts: 3,293
    edited August 2014

    Take it from someone who spent the better part of ten years stressing and worrying about the cancer coming back. It took a much wiser person than me to smarten me up.....my ten year old son (at the time) who's words will forever stick with me. "what difference is it gonna make in the end if you worry about it? It's not going to change anything." I really love that kid. Looking back, if I'd have had someone wake me up sooner, perhaps it never would have come back. I'm sure the worrying and stressing about it played a part. If it turned my hair grey at 40, I'm sure cancer was brewing in there somewhere. I regret the worry like you wouldn't believe. Don't let it eat you up. Hard lesson learned.

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2014

    I really needed comfort from my community today, and you all gave it in abundance.  Thank you! It is also so nice to hear from the adoption community, which I'm so grateful to have lived long enough to be a part of.

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  • linzer
    linzer Member Posts: 164
    edited August 2014

    L2TK - I am so glad that you brought this up. It's turned out to be a wonderfully supportive thread that will help me when I'm ready. Adoption is an amazing way to build a family. Assuming you are from the US, was your son born here or internationally? My children were born in South Korea. 

    I teach too! Sounds like you might be higher ed. I teach elementary and love it!

    Yes, it is meditative! I hesitate to use that sometimes because not everyone is open to trying it. I'm a restless meditator at best. I keep trying :)

    Leggo - lucky you to have such a wise young man! It will serve him well.

    Jwilco - I love how you turned it into something positive - reassurance!! It is the same as how I repositioned chemo from being poison to a healing ally. Sometimes it is just a shift in mindset that we need to get us through.

    Diane - ah, practice! That's a good thing. It means being around long enough to have a chance. I like that!

    Sandy - I love how you worked to shorten your time but also allow yourself the Ativan or whatever else you need to get through. I think sometimes we get ourselves convinced we always have to be the strong warrior... and sometimes that just isn't possible.

    L2TK - you bring up a great point about friends. Mine are great too, but I'm finding already who my "core" is and I'm just at the beginning. I think lots of people glaze over and don't really get it or want to truly hear about it. It's making me rethink how I may have been to others without really meaning to be insensitive. 

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2014

    You know, I can't blame folks. Life is about living, not worrying about dying.  I've learned it takes a person of extraordinary fortitude to walk through cancer with a friend with strength to manage the fear and pain. Our culture is so "all better now" that it's hard for people to wrap their brains around recurrence.  I've also learned that friends have multiple dimensions. My one great friend bombed completely on the care front.  No card, nada.  But...she is a huge supporter of my art, and has made a huge impact in that way. Anyway, the support thing can be exhausting to navigate, and I am not quite sure who I can call and be terrified with.  Some of my friends care so much that I just work them up into a lather.  Not worth it. And that is why you all mean more to me than you can imagine.

    And YES!! I try to remember that there is someone out there that perceives my behavior as I perceive some folks who walked away.  We are not perfect.

    I am in higher ed. One of our great colleagues just passed from cancer. Cancer stole her life, it also stole her greatness from the rest of us.

    We couldn't go international because they want a 5 year clean bill of health, and some countries have pre-existing conditions clauses.  We happily went domestic, and were about to give up after 1.5 years of waiting.  Adoption tends to reward stay at home parents and backyards--at least, that was our experience--and we'd been rejected for the academic/cancer surviving/urban apartment types we are.  Then, an amazing woman who loved us for all the things that make us who we are appeared, due in 10 days. We are in an open adoption with her.  So far, it's great--seeing her at the end of August.  It's challenging, especially on the love and possession front.  But what I am learning about people and the evolution of a family has been so rewarding. I'm so proud of adoptive families, and of being one!  It is the closest thing to a miracle I've ever witnessed.

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2014

    Hi all, Hi, Robo47! We actually have had our child for three months now, I probably was really unclear.  It has been so great. A huge adjustment, but he's laughing in the swing as I write this, who could ask for better.

    I'm glad to hear the PTSD thing is real.  I honestly think more attention needs to be paid to it.  What we have to do to get through chemo, rads, and the constant barrage of social weirdness to wind our way back to life is really so unlike any other experience that it needs special counseling.

    I'm doing better since you all reached out. When the negative thoughts arise, I quickly say "moving on" mentally.  I have been keeping busy.  It helps.  I'm still scared sh**less, but I don't feel quite as insane as I did earlier this week. I found a script for Valium from when I started treatment.  Hopefully, they are still active and I can pop one for next Tuesday...

    Hugs to all.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    LtotheK - Congrats on the new little one! BTW - how are you sleeping these days? Lack of sleep causes all my beasties to come out to play. That was always the first question my Stephen Minister would ask me when we were meeting after my dx. Oh yeah - PTSD is alive and well. If there is one thing I've learned in the past couple years is you either deal with it now or you'll deal with it later. Meeting with someone is an excellent idea.  I can't tell you how excited I am for you about the baby! Hooray!

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  • ChemicalWorld
    ChemicalWorld Member Posts: 172
    edited August 2014

    I can relate to this.  My yearly mammo is not until January and I've already started worrying about it.  Not all the time, but it is there.

    You mention that things are good with the new addition to your family (congrats!).  For me, I find the greatest fears creep in when things are actually going well and I am happy. 

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2014

    Wow, y'all speak my language!  ChemicalWorld: exactly. Things are going SO well right now that I assume something horrible has got to be right around the bend.  I also have some strange survivor guilt--why did I deserve to live, and my colleague not?  Totally irrational, just very sad, and existentially complicated.  Babies do help. It is simple, pure and lovely.

    Being the Virgo type, I did some research on exactly what is the risk of a second primary?  My situation is complicated and compounded by a few things: I have a second degree relative who just got a second DCIS after four years, and I was under 40 at diagnosis.  For the average person, the risk is somewhere around 8 - 11% in 20 years, less with treatment.  In my case, it might be as much as 24%.  But that's still the minority.  Sure, I was on a bad luck losing streak when I got this, but it's not a foregone conclusion by any means.

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2014

    Just wanted to let everyone know that I had my tests, and they are clear this year. I am grateful, but most important, I learned a lot from this discussion on taking it one step at a time.  I definitely had a little mini melt at the mammogram, but sailed through the MRI and by the time I did it, really felt like I am doing my best and we will deal.

    Thanks so much for the support, all.  Baby says thank you, too!

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  • jwilco
    jwilco Member Posts: 486
    edited August 2014

    Yeah!  Glad for you.  Now that you have that reassurance, take a breath and relax.  Do something fun!  Smile!  Enjoy life!  These are the things I think to myself as I leave my annual test appointments.  It's a work in progress to change from being a worrier.  :-)

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  • christmasgirl1960
    christmasgirl1960 Member Posts: 19
    edited August 2014

    Wonderful, wonderful news, LtotheK!  I know the anxiety all too well.  After two cancer diagnoses (breast and melanoma), I feel like cancer is always lurking on the horizon.  I get myself worked in to a frenzy before each appointment :(  I'm afraid my life will never be the same as it was pre-cancer.

    You've had the best news ever!  I hope you can go and celebrate with that precious baby of yours! 

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