Totally frightened!!!

claireinaz, 

Emotions around breast cancer can be unpredictable, as you can tell so many members posts on the boards. The worst part is always waiting for upcoming appointments.  Do things for yourself, take walks with friends, read a book, or go to a movie.

Keep posting, vent and we in the community will support you.

(((The Mods)))

Claire,

Oh, I know this feeling SO well.  Before these appts, I always try to will myself calm, but it never works.  I always feel like THIS will be the appt where my good luck ends and I feel angry that it effects me so much.  I always have to warn my drs at BS and onco appts that it's the anxiety that drives my BP up to stroke-prone levels.  When I complained to my psychiatrist that the klonopin dosage he had Rx'ed didn't touch my anxiety at these appts, his comment was that I wasn't taking enough!  I too have through the roof medical anxiety at all appts but the dentist.  

Sadly, no words of wisdom to offer, but want you to know you have a sister in anxiety in snowy NY.

Edited to add:  I do not have ILC, but venture to guess that these feelings cross diagnostic boundaries...

Dear Claire, 

Been thinking about you all day. Only now have a min to write.

I am about a year ahead of you (I think, dx in July 2010) and I still have a rough time w scans. I am better w Dr appts, but I think that's because my BC was dx during a scan, my routine mammogram. I do think that one of the hardest things about BC has been having this sword of Damocles hanging over our heads, this incredible fear of recurrence. 

There are a few things that have helped me; maybe they'll help you, too. One, I make myself think of people who have had BC and are long term survivors, famous and not. I am friendly with a woman who is a healthy 30 year survivor without any tamoxifen or AI's, just a unimx, and I know others like her. And then I love to think about celebrities, like Julia Childs...had a double mx and then lived many years after, also sans drugs. There are many like them. More typically, they've mostly moved on, aren't posting on bc.org, so we don't hear as much from them. Don't get me wrong, I love bc.org, and this is really my support group, but our experience of talking about BC is a bit skewed since we are mostly coming here with our fears and concerns. One could think that the world of BC is more gloomy than the stats actually show. Many women w BC, even more advanced BC, survive for many years, even w recurrences. Important to do that reset in one's mind now and then.

But the fear is very real, purely emotional at times (my DH thinks it's PTSD, which makes sense to me) and it is logical that we can't reason ourselves out of this. The other thing that helps me is to just give up control. I know this must sound counter-intuitive but here goes...I used to be terrified to fly and this became crippling when I moved halfway around the world, away from my extended family. I needed to be able to get on a plane. I am a control freak, so the thought of putting my life in the hands of a pilot steering a tin can 35,000 ft the air put me into a complete panic. And then I had an epiphany. Simple, but I decided that the plane would either crash or it wouldn't. I had no control over this, and if it was meant to be my time to die (in such an unimaginative way:) then it was my time. My part was just to buckle my seat belt (and ok maybe take a xanax or 2 (or 12.) Since then, I've been able to fly. I don't think I'll ever love it, but I can do it. I see BC as similar. It will either come back and kill me, or it won't. In the meantime, I'm doing my part (buckling my seat belt) by taking Femara, exercising, eating well, etc. When I get myself worked up (usually the 2 wks before my mammogram or MRI) I tell myself this (I call it my airplane mode) and it helps me cope. BC is a total crapshoot, I'm convinced, and we really do have limited control. Realizing this is somewhat liberating.

All this being said, I still indulge in anti-anxiety drugs now and then. This is just plain hard. That, I guess, is the third thing. Accepting that this will always be hard and maybe not fighting it. Chances are really in your favor that you'll be fine. But you'll probably always be loony before check ups, possibly unevenly (I was worse at year three than year one, go figure...) I think it may have something to do w other things that are going on in our lives, or reading about a spate of bad diagnoses, or maybe just irrationality. My Dad was a 22 year survivor of Leukemia and he said the yearly blood tests never got easier. So this may be our new reality, but if we can dance between the raindrops and enjoy the rest of the year, we're ok.

Sorry to all for rambling. Hope this helped a little and please keep us posted, Claire.

Shari