waiting and depressed

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snowinginmybrain
snowinginmybrain Member Posts: 5
edited October 2016 in DCIS (Ductal Carcinoma In Situ)

I'm so unhappy!!!! I know that the way I feel is expected and "normal", but I can't get out of my funk. LOGICALLY I know that my problem is minuscule compared to what others are going through. Emotionally, I can't get out of my own way.

I'm still struggling with whether I do lumpectomy or mastectomy. I'm convinced that the surgeons don't see everything that's there and I'm going to end up with much larger problems once they do pathology. Meanwhile, I have one of the best surgical oncologists at Dana Farber in my corner. Why can't I trust that? I feel like what I read on the posts show me that more often than not, they have to go back in for DCIS to get clean margins. I asked my surgeon what percentage of times he's redoing his lumpectomies and he said only 12% of the time. I still worry that mine isn't what it appears. I'm so torn with feeling like I should trust the doctors that do specifically this vs trusting my gut (i.e.: fear).

I also feel like I've run out of places to go with this. I was diagnosed on 9/28, saw the surgeon on 10/11, and am scheduled for my lumpectomy on 11/9 (back up plan is mastectomy on 11/21)… With all of this waiting, I process. 24/7. I wake up in the night thinking about it… If it's not actively coming out of my mouth to my husband, it's circling in my head. It's consuming. I feel so alone. And tired.

I got the BRAC1 (etc) testing back yesterday - all negative. I should feel relieved, but I don't. WHY?? I'm thrilled that my two daughters won't have to worry about that - but it puts the burden of deciding back on me.

I "know" that I'll end up doing a lumpectomy and then waiting to confirm the TRUE diagnosis, but I can't find any comfort or solace in that decision.

Thanks for listening… I fear my husband is going to reach his threshold with my "process" any minute. :(

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2016

    Hi snowing,

    Thanks for posting -- sometimes it just helps to get your thoughts and concerns out of your head! We want to reassure you that you are NOT alone -- especially here. You're sure to hear from many others soon who have had the same worries, thoughts, and fears as you. But, we know that the more you find out about your diagnosis, the better you'll be able to focus on the task at hand and treatment ahead.

    Please know we're all here for you -- vent as much as you'd like, ask questions and keep coming back for support. Let us know how else we can help!

    Big hugs,

    --The Mods

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  • LAstar
    LAstar Member Posts: 1,574
    edited October 2016

    Yes, this is all normal. I wish there was an easy fix, but you just have to get through these next weeks. Waiting is the worst! I gave myself windows to challenge myself not to talk about it and to try not to think about it. 5 minutes feels like a break at first! If you can distract yourself with something that occupies your mind, it helps (for a little while). Exercise is a great way to sweat out your worries, clear your head, and feel strong.

    Don't feel like you have to know your treatment path yet. You just don't have enough information yet. You will have a pathology report in a few weeks that will give you a lot of missing information. Congrats on getting a negative BRCA test! That's one hurdle cleared!

    A lot of the women who have a successful lumpectomy and don't have a lot of bumps in their treatment path often don't stick around on this site. I think that those of us who went through some setbacks are more likely to stay around to repay the support we needed. We are the cautionary tales and not necessarily representative of the standard treatment.

    Hang in there!

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  • Molly50
    Molly50 Member Posts: 3,773
    edited October 2016

    Hi snowing,

    Your spiraling out of control thoughts are very normal. Your fear that there's more to the picture than what you know now is also very normal. One thing to consider with lumpectomy vs mastectomy is once your breasts are gone there is no changing your mind. Reconstruction can be complicated and lengthy. Emotionally mastectomy can be difficult as well. If you trust your doctors then consider requesting an MRI (your insurance may not okay it but why not try?) to ease your mind. Having an MRI would have saved me a surgery. I don't regret having the lumpectomy but it ended up being a surgery I could have skipped.

    In the meantime, come join the Lumpectomy Lounge there are several ladies who had lumpectomies posting there.

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  • Kkubsky
    Kkubsky Member Posts: 231
    edited October 2016

    you sound like me when I was first diagnosed! I couldn't turn off my brain! It's been 9 months since initial Dx and I am finally settling down.

    I had a lumpectomy and radiation with no complications. Didn't have to go back for better margins and healed quickly from surgery. I did have some skin issues with radiation but it was temporary and you wouldn't know now

    Dana Farber is a wonderful hospital. A friend of mine had inflammatory breast cancer and was treated there. Glad to say she is doing great!

    It can feel like information overload at first. I decided at some point to trust my Drs and it has helped me to move on. I still jump on the merry go round every now and then, but less and less.

    I don't come on here too often anymore. Every once in a while to see what's new.

    Hang in there!

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  • snowinginmybrain
    snowinginmybrain Member Posts: 5
    edited October 2016

    Thank you all for your posts :) It's nice to have a place to vent that isn't my family. Everyday has been a rollercoaster ride of emotions, but mostly I'm just frustrated. The fact that you all know what it's like is so valuable! Thank you!

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  • Annette47
    Annette47 Member Posts: 957
    edited October 2016

    You are in the worst part of things now, so just hang in there - it will get better. I remember during the waiting period being depressed/terrified etc. and my thoughts were all mixed up. I was almost the opposite of “normal” though - instead of being worried that it would turn out to be worse than originally thought, I was almost afraid it would turn out to be nothing at all ... I guess I didn’t want to think I’d gone through all the stress of thinking I had cancer and then not have it? Not sure and it sounds silly now, but I was not exactly in a completely rational place at the time, which is the point I’m trying to make.

    For what it’s worth, I had an uneventful lumpectomy, SNB, and radiation with no problems. I’m coming up on 4 years from diagnosis in a few more weeks and things are MUCH better now.

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