Is it just me?

When I was first diagnosed all I could do was think about the cancer and what decision to make if I was offered treatments. I never did think it had spread any where else except maybe my lymph nodes. I had my mastectomy Dec 11 and my report came back good, no cancer in my lymph nodes or outside margins. Everyone has different thoughts.

You are not alone. I also have IDC and have done the same obsessing.

Today, I feel like that...overwhelmed, wondering whether it's spread...or rather where? I'm just stuck. I was feeling ok this morning until a friend whom I told last night that I had BC called me back and was so worried/negative It was not what I wanted to hear.

not only did I fear it had spread but in the beginning, I would just have overwhelming feelings of fear. I would sit along and cry and just say out loud, I am so afraid and believe me, that is normally not my personality. I am usually one to meet something full steam but this was just so shocking and you feel so out of control of anything and to think that something is taking over your body and you dont' even know it. Its been 6 months and I'm doing a little better but I do still read the stats and just about assume, at some time, its going to come back. Just scary.

I had one known malignant node at diagnosis, so did have scans and follow up scans. I was having a flare up of some bone pain from a much earlier fracture as well so of course my mind went to all sorts of dark places. It was a terrible time.

I didn't want to tell anyone (other than my husband) yet as we didn't know how bad it was nor what the treatment plan would be and did not want to inflict that uncertainty on anyone else, so BCO stood in for my sister, my best friend, my dad (!) and anyone else I would have turned to.

I've gotten better at re-directing my thoughts when I find myself drifting that way and, of course, as you adjust to the diagnosis the terror diminishes.

Hang in there. We all get through this part of it, somehow, but we all know it's not easy, either. Chances are it hasn't spread and that your mind/body connection is in overdrive. Ask your MD for some Ativan or Xanax if you need to. I'd never taken anything before but it certainly helps to have it on hand.

oh yeah...and stay away from stats they do not dictate our paths

what I found really helped was some of the best advice I got from my husbands aunt who had gone through this, she told me to start a grateful journal. I really didn't feel too grateful but figured I would try. The beginning was the hardest and sometimes I would just post a picture I had taken (I used an online journal app called Maxjournal). But pretty soon I started writing a bit more. Before I knew it, I was excited to find something each day that brought me happiness. This totally changed my perspective and the dark scary thoughts left me. I'm happy to say that this serenity has stayed with me. I no longer journal (after a year ) but may again because I found it so beneficial. I think it would be nice for my kids to read at some point. It's only normal to feel the fear and each of us has to find a way to deal with the uncertainty. For me it was realizing I have a really great life and there are so many things to be grateful for.

In the beginning I did something out of character and unanimously paid for two police officers breakfast. It wasn't much but made me feel good and unselfish. Stay strong ladies!

Not just you, completely normal, and if anything, based on my own experiences, I think it is healthier to express these feelings in the beginning.  I tend to bottle my feelings and so I kept a lot to myself during treatment (although I did blog).  Part of that was the rush of going from diagnosis to surgery to treatment etc, and generally being a little naive about everything.  I remember going for my CAT scan and muga tests, bloodwork etc and I remember concern, but not like what I go through now.  Everything sort of hit me like a ton of bricks months out of treatment.  Around  that time, I got hooked up with a therapist, but the focus was so much on getting me back to work (it was linked up with my insurance/disability/RTW etc), that I never really dealt with anything either, and left it after I went back to work (the therapist wasn't really a fit for me either, another story).

I encourage anyone going through this now to ask for help in the early days if you are experiencing this, and feel comfortable doing so.  Usually oncology units have a Psychologist on staff or know who to refer to, but find someone else you're comfortable with if you don't like them.  Just because someone works with oncology, doesn't mean they'll be a fit for you.

I agree, but I guess the problem is sometimes, we are so vulnerable, and not necessarily at our strongest at that point.  It can be hard to stand up for ourselves.  All the more important to have advocates on our side that treat us properly, with respect and knowledge.

I also recommend a cancer patient navigator if your hospital has one.  I wasn't hooked up with one until just this past year, but she was very helpful, and I'd wished she'd been around in the beginning !

I went from possibly being stage 0-1 to stage 2b after my lumpectomy. I did have node involvement so chemo and a mastectomy were next. The worst time was the first 30 days. I had a PET scan after surgery and there was a small nodule on my lung. Too small to measure so the MO felt it was just a scar from bronchitis or something I was exposed to. She did order two CT scans after that, one in the middle of chemo and one last month. There was no change so she won't scan me anymore. I was so sick to my stomach until I got the PET scan results and it had not set up shop in another organ or my bones. Since then I have felt confident that I am cancer free.

Shelley, I am comforted to know that I'm not the only one who feels like I'm waiting for the other shoe to drop, so thank you for starting this thread and expressing that.

I see so many women on here who seem to believe that doing 'everything possible' means that it's gone and there's just no guarantee of that. that just isn't. Sometimes I wonder if those women are kidding themselves or whether I'm the one with the overly-cautious mindset?

Particularly for ER+ cancers, the recurrence rate years from now is still a LOT higher than I'm comfortable with. Additionally, as I read this board, I see so many women who were stage Ib or IIa, IIb at dx. and a few years later they're back as stage iv, despite having done all recommended treatments. That really gives me the heebie-jeebies!

I hope you WILL do great and go another 70 years without a recurrence, Shelley. Maybe at sometime during those 70 years a definitive cure will be found and we won't have to live with that brick hanging over our heads. Hang in there, friend.

Shelley, yes!, that's my thinking about the percentages, too. I am so glad to know that there's someone here who understands my thinking. (Not that I'm glad you're on here, of course.) Sometimes it feels pretty empty to be surrounded by all these women saying 'I can beat this' or 'I've beat it' when we know there can still be stem cells floating around just waiting...

Thank you for understanding. I hope you're healing well from your surgeries now that they're over. And I am so glad to see your low Oncotype score. Thank goodness for small mercies, yes?