Feel like I can’t breathe!!

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Egirl
Egirl Member Posts: 4
edited July 2018 in Just Diagnosed

I was diagnosed 2 days ago with stage 1 Dcis and invasive. A nurse called and told me on the phone while I was camping with my children. I feel uniformed and terrified.

I've been dealing with iron deficiency anemia for a year now and being insanely tired. Now I've convinced myself it's actually in my lungs and I've been staged wrong. Can this be true? Can I have lung cancer too??

I don't see a doctor until Monday and am sure they have missed something.

I feel like I can't breathe!! Can anyone relate? I'm terrified

Comments

  • molliefish
    molliefish Member Posts: 723
    edited July 2018
    I am so sorry this happened when you were away with your family. I believe with DCIS you may have less risk of metastasis right now but every single one of us is different and only more follow up with MO and surgeons will tell you for sure. I think your feelings right now are more related to the situation you are in. I know I'd be in a state if I wasn't close to home and able to follow up right away. Hang in, try to concentrate on the positives (dCIS) until you can get more succinct information.
  • Moderators
    Moderators Member Posts: 25,912
    edited July 2018

    Hi Egirl-

    We know how scary the first days and weeks after diagnosis can be. You're in the right place for support, and we hope that once you have some more information, things will start to become more clear for you. You're not alone, we're all in this with you!

    The Mods

  • Egirl
    Egirl Member Posts: 4
    edited July 2018

    Hi all - I was told that my first appointment would be with a surgeon on Monday. When I asked about seeing the oncologist they told me not to worry as all of those conversations take place “behind the scenes". I'm feeling quite uninformed and uninvolved. I'm a planner and control nut by nature so this isreally pushing my limits.

    Is this normal?

  • Egirl
    Egirl Member Posts: 4
    edited July 2018

    thank you for the reply. I'm trying to understand my own diagnosis but feel like I'm readinga foreign language! Lol!

    The report says that if “breast conservation is important to the patient",.... it references doing double mastectomy as a result of “possible" findings in the right and dcis with small focus of invasive on the left. It also says there is a tumor that cannot be clearly seen due to dense tissue that may increase level of invasiveness. Seems weird to do surgery without being sure of things.

    I also got a call from my insurance saying that my MRI was approved - I told them thank you and that I didn't know I was having one!! Is that a normal next step? Should that happen before meeting with the surgeon

    Anyway - thank you for replying and reminding me that I'm not alone. What a goofy club to find myself part of. :)

    Cheers and Happy Thursday!

  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited July 2018

    Egirl: my advice is this: please be an advocate for yourself. Ask lots of questions. Do you like/trust your doctors? That’s the most important, in my opinion. The waiting is the most grueling part, but don’t be afraid to speak up. Call them to inquire about the upcoming MRI.

    Well wishes heading your way.

  • Cindymb
    Cindymb Member Posts: 206
    edited July 2018

    Egirl,

    I too am sorry you are having to go through this. I was recently diagnosed and am just now finishing surgery prep. My first appt after the biopsy was with the surgeon. The MRI is good because it gives them a better image of the breasts. Doesnt necessarly mean something else is wrong. Then i met with the plastic surgeon because he is doing a lift at the same time as the lumpectomy. I dont meet with the oncologist until after surgery. Will probably be the same for you. You will feel better after you meet with the surgeon and a plan is in place. It really looks like it was caught very early for you. Come back as much as you need to, everyone is so helpful.

    🤗 Cindy

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited July 2018

    It's pretty normal to have an MRI prior to surgery. Often they can rule in or rule out areas of potential concern. Get copies of all your results and keep them in a file. You'll want to have these when you see various doctors or if you go for a second opinion.

  • Runrcrb
    Runrcrb Member Posts: 577
    edited July 2018

    Egirl,

    I will offer some advice. This initial period is hell. Try not to over think everything. Grab a notebook and keep it nearby - put all of your questions in it and refer to it at each doctor visit. Find a friend who will go to appointments with you to take notes (and ask him/her to type them up and send them to you). Your spouse, if you have one, may be too close to the situation to take good notes.

    After my initial diagnosis my PCP got me in to see a breast surgeon quickly. We thought lumpectomy and radiation based on what we knew from the first biopsy. He ordered an MRI and I remember him saying "Let's take a good look at both breasts because we don't want to miss something now and have to have a second surgery later." He also warned me that MRIs find lots of things and to expect more biopsies but often those are benign. My MRI technician had a good inkling that she saw things that would need biopsies and knowing other pressures I had (sick husband) got me on the biopsy schedule before I heard from my doctor. That was my only surprise appointment.

    The MRI and any additional biopsies will provide a great deal of information to guide your next steps. As Rrobin0020 said, advocate for yourself. If the results indicate radiation or chemo, ask to get consults with radiation and medical oncologists. I saw both as well as two plastic surgeons prior to my mastectomy. I was also able to have a sentinel node biopsy prior to the mastectomy and the results put me on the path for chemo. It took about 6 weeks of consults, tests and follow ups to develop my plan of treatment. Breast cancer is a personal crisis but rarely is it a medical emergency. But do ask questions until you understand and be comfortable asking the same question multiple times.

    Try to take deep breaths and continue with as much of your normal routine as possible. If you exercise, keep it up as fitness going into treatment is a huge piece of managing the impacts / side effects of treatment. I would also advise you to keep the circle of people who know what's going on small until you have the knowledge and plans in place that make you feel comfortable. The last thing you need is to have people crying on your shoulder or telling you horror stories.

    good luck.



  • Egirl
    Egirl Member Posts: 4
    edited July 2018

    can anyone tell me how reliable ultrasound of lymph nodes are? My doctor speaks so confidently that it’s not in my lymph nodes, but how do they know that?

    She said they will step take one during surgery, but not worried about it.

    ??

  • new2bc
    new2bc Member Posts: 559
    edited July 2018

    Egirl,

    I think the MRI will reveal some info about the lymph nodes. But they take a few lymph nodes during surgery to test them. If they are cancer free, they will not any more lymph nodes. If you are worried about your lungs, you can ask for a pet scan before the surgery. I hope this helps.

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