Waiting and questions that no one can answer ;)

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faerywings
faerywings Member Posts: 173
edited June 2014 in Just Diagnosed

So here I am, another post with nothing that anyone can really help but I find the need to get off of my chest (so to speak?)

I was dx'd 2 weeks ago with DCIS. I was supposed to have an appt with a surgeon on the 23rd, but a pipe burst int he office and it was cancelled at the last minute. I am rescheduled for this Wed and the 2 week wait is starting to wear on me.

This is going to be a rambling post so forgive me in advance.

I just wish I knew what to expect. I wish I knew how I am supposed to feel. Cancer sounds so scary but I don't feel like there is anything in my diagnosis (yet??) that I need to be scared about. How soon does it usually take between first appt with surgeon to surgery? Recovery time? Working, parenting? I have Chronic Lyme and I see my Lyme dr in 2 weeks, and would love to know how the cancer will affect the lyme and vice versa. I have never been good with uncertainty and this is one *huge* question mark for me.

I read Beesie's DCIS post, several times, and I think some of the info is starting to sink in. But man, I am tired of waiting to know what my next few months are going to look like.

I know, no one can actually answer these questions, (an I am sure I have more rolling around inside my brain) but I just needed to get them *out.* 

Thx for reading  and not thinking I am too crazy. (Key word: Too.)

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  • SallyS70
    SallyS70 Member Posts: 947
    edited February 2014

    faerywings, waiting for appointments was hard for me too, and I frequently read comments by others about how hard it is for them.  One of the things that made waiting a tad easier was taking daily short walks.  Rereading a series of books that I had enjoyed also helped.  Since I was already familiar with the characters, it was like visiting old friends.

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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited February 2014

    faerywings - Hi, again!  You are not crazy, (but sometimes this process and the stress will make you feel that way).  When I started out, the first thing my BS did after reviewing my films with me was send me for a stereotactic biopsy.  Once the results were in from that, he performed an excision three weeks later.  More evidence of cancer was found during that procedure and I opted for the BMX.. All of this happened within seven weeks, but a lot depends on how aggressive / conservative you and your BS are and what your DCIS diagnosis is.  As is said a hundred times a day in here, everyone is different.  I saw a post last night from the moderators where they referred to us as 'snowflakes' - no two alike - and it's true.  You have a new twist in the fact that you're dealing with Lyme disease and I have no idea how that will effect your treatment.  The most important thing is how much confidence you have in your BS and whoever else is on your team.  You need to be able to trust them and their judgment implicitly.  If you don't, find one that you do.  See?  I started rambling...  Anyway, best of luck to you on Wednesday and please let us know how it goes and what you find out! 

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2014

    Faerywings, 

    As other members have said waiting is this worst part.  It helps to keep busy and distract yourself.  Please keep us posted!

    Best, 

    The Mods

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2014

    waiting is indeed, awful. I know you want answers, and want them now, but the whole diagnostic process unfolds slowly. Distraction is your best weapon for now. Take care.

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  • vbishop
    vbishop Member Posts: 616
    edited February 2014

    The best advice I received when I was diagnosed was to "do not borrow trouble; go with what you know".  You know you have DCIS, which means your cancer is contained.  That is good news as it pertains to breast cancer. 

    The next month or so will be a whirlwind, with all the tests, doctor appointments, etc.  My rule of thumb was that my health was my #1 priority, so when the nurses called to schedule a test or a follow up appointment, I would arrange my schedule around the appointment and not the other way around.  Your doctors (surgeon, oncologist, possible plastic surgeon, primary doc, etc) should keep each other informed.  If not, insist that they do (I am so blessed here; my medical team, although in different specialties, clinics, and areas of the city, communicate with each other on a regular basis, sometimes just through email, other times on conference calls).  Waiting is the worst thing, but I had a nurse that was fierce about tracking down test results.  If I had a test on a Monday, she was calling me Tuesday afternoon with results....without me asking!  My experience, doctor wise, has been fantastic! 

    Best of luck!!

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  • vbishop
    vbishop Member Posts: 616
    edited February 2014

    Oh, brief time on my stuff:

    Diagnostic mammogram on 9/5; breast biopsy on 9/13, lymph node biopsy on 9/25, CT scan on 9/26, surgery on 10/8.  So, for me, about one month from mammogram to surgery.

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  • faerywings
    faerywings Member Posts: 173
    edited February 2014

    Thank you all so much for your advice and support. My BS appt is set for tomorrow. But the weather forecast is calling for 8-12 inches of snow and ice. I called the office yesterday to see how they handle inclement weather. She said that they do everything possible to stay open, which is great. But they don't do cancellations/re-schedules until the Day Of. 

    meanwhile, I live about 35 minutes from the office without traffic/snow, and I live up in the mountains of NJ, notorious for bad roads. I am trying so hard to not freak out but it is getting harder and harder. :(

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  • newby63
    newby63 Member Posts: 2
    edited February 2014

    I think the waiting is the hardest part. Waiting for the next test, next procedure. I was diagnosed last week. Immediately I had no appetite, no energy, very withdrawn. Very disappointed that my surgery consult is not for 3 weeks.  I always have such positive energy, this is quite a blow.   The only thing that helps is reading the posts from those who know my fears. Thanks.

    ---------------------------------------------------------------------------------------------------------------------------------------

    Grade 3, Mets, Stage unknown, 0/3.

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  • juneping
    juneping Member Posts: 1,594
    edited February 2014

    wings - how did it go?

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  • faerywings
    faerywings Member Posts: 173
    edited February 2014

    June-- I already love my BS and her office!! They called me the day before the storm (we ended up getting about 10" of snow topped with ice, no way I would have been able to get down there) and asked if I could get in that day. I was at work, (for a woman who had a DMX 2 years ago and has MS and is funny as hell) but literally dropped everything and RAN! I knew she would understand.

    You would think that b/c she was squeezing me in that they would be rushed. Not at all. The BS spent an hour with me and my DH, going over options and drawing diagrams, the whole bit.

    I am waiting for BRCA test results but am scheduled for a lump on March 3rd. I am still doing a lot of waiting, but at least I feel like I am moving fwd.

    Thx so much for checking in!!! <3

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  • faerywings
    faerywings Member Posts: 173
    edited February 2014

    newby- so sorry to hear all of this. :( Hang in there. Hugs!

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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited February 2014

    faerywings - So GLAD you like your BS and that a plan is coming together for you.  We'll be right there in your pocket on 3/3/14!  You know we're all here for you - you are not alone in this!

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  • faerywings
    faerywings Member Posts: 173
    edited February 2014

    thank you AZ!! These forums have been a godsend!

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