Just Diagnosed- Get Prepared

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Comments

  • MTwoman
    MTwoman Member Posts: 228
    edited June 2017

    Oh goodness suzannewierikko, you are so NOT ALONE! There are so many of us here. There is information and experience here as well as support. If you've just gotten your diagnosis, you are probably overwhelmed and scared. What do you need from us? How can we help? There are forums and specific threads that deal with almost anything that you might be interested in. Please just ask for what you need. Sending you big and gentle ((hugs))

  • minustwo
    minustwo Member Posts: 13,384
    edited June 2017

    dimetra - did you start chemo? Sometimes it gets easier once your treatment plan is in place. Also with that many nodes removed, you might see about getting a lymphadema consult with a certified LE/PT. Below is a link to a site set up with the input of many BCO experts.

    http://www.stepup-speakout.org/


  • Tappermom383
    Tappermom383 Member Posts: 401
    edited June 2017

    Suzanne - as MtWoman said, you are most definitely not alone. The wise, wise women here have helped me through this unasked-for adventure. Getting that diagnosis is the scariest thing. But I can tell you that once you meet with your professionals and start to get your treatment plan in place, things really start to calm down. At that point you start moving forward - you get unstuck - you can actually take a breath again.

    You did the absolute best thing by reaching out to all of us here. Please keep posting and let us know how you're doing. Ask questions - if the women here don't have answers, they'll point you in the right direction.

    Best of luck to you. You can do this. We've all got your back and, as the ladies say, "we're in your pocket."

    MJ

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited June 2017

    Thank you to those that responded to Suzanne, great advice from all

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited June 2017

    This query came up about ambulance transport on another thread. I though it appropriate to add here with qualifying info deleted. :)

    "I saw the last page re: ambulance ride. I have the provider side experience with that. The outcome is cost and necessity, worded right you owe nothing.

    If your call was determined that you needed transport by ambulance, there are two systems

    1. EMS county/or city is the primary responder and transports in all situations ...OR

    2. EMS county or city is the primary responder and contracts with a private service, to transport non -life and limb threatening transports.

    Each is covered by insurance. But each will try to bill you as an individual.

    The county/ city service bills insurance to try and recoup cost. If you receive a bill after insurance payment from the county or city, respond with " This was covered by my taxes, advise further why my taxes didn't cover this transport when the responders determined that transport was medically necessary". Bill will go away. If the bill doesn't go away, call your council person or the EMS Community Relations Specialist.

    With the transport by a private company. Once county or city Ems personnel releases you to a private service. The private service will try to get you to sign a responsibility for service form. Don't. Big time don't. Reason. The transport was recommended by the Primary Responder of EMS. That means that there was a need based on assessment for transport. Medical Necessity. They have contracted with the county/city service to provide medical transport in non-life or limb situations. They are double dipping. Of course, they will always describe that they are loosing on there costs.

    If you call a private service, you are bound by their costs.

  • Kimberly-B
    Kimberly-B Member Posts: 3
    edited June 2017

    I was just diagnosed yesterday. IDC grade 1. It's in my left breast. That's all I was told over the phone. I have an appointment with an oncologist first thing Monday morning, so I'll find out more then. I guess I'm still in a bit of shock. I told my 19 year old daughter last night - planning on telling the other kids today. Just now crying for the first time. Yesterday when I woke up, it was just the usual. This morning I woke up to a different world. I always say that Life's a Journey..... I just didn't see this one coming. But I guess no one does.

  • moderators
    moderators Posts: 8,699
    edited June 2017

    Hi suzannewierikko and Kimberly - Welcome to BC.org. We're sorry for what you're here, but we're glad you've joined this amazing Community where we're sure you'll find lots of encouragement and support to help you along the way.

    Besides the helpful information and advice you'll find in this thread, we would recommend you to take a look at the Breast Cancer 101 -- Breastcancer.org section, a place designed to help you sort through all of the information on our site to find what is more relevant to you right now, like questions to ask your doctor, understanding your pathology report, and more. We hope this helps!

    Kimberly, please let us know how it goes Monday morning.

    Best wishes,

    From the Mods

  • SJI
    SJI Member Posts: 32
    edited June 2017

    Kimberly-B: Sorry you got the diagnosis. The forums on this website are a great resource. A lot of us have found that the most stressful part of this journey is the waiting. I'm now in the last week of radiation and then will go on anti-estrogen pills. So I am almost done but I know the worst times for me were the days just before appointments. I got really anxious about what the latest news would be. Once the treatment plan was decided upon, it was a huge relief. A lot of my anxiety about bc went away. It took from January 10 to mid-March before my treatment plan was finalized. I think a lot of people get theirs sooner. Hope things go swiftly for you. Today's treatments are really tailored to the individual and light years ahead of what women went through before.

    It is overwhelming at first. I knew nothing about the types of bc before. With this site you'll be an expert before you know it and gain confidence in what questions to ask your docs.

    Hang in there.

  • Kimberly-B
    Kimberly-B Member Posts: 3
    edited June 2017

    Thank you for your kindness. I spent most of the day sharing with my inner circle and beginning my education....there's a lot to learn, and this site is a great resource. Understanding the pathology portion seems most important to start. It seems too like forming connections with some people going through similar things will be important.

    Again, thanks for the kindness - it means more than you know - especially with you having just walked this path yourself

  • Kimberly-B
    Kimberly-B Member Posts: 3
    edited June 2017

    Hello there, and thanks for the helpful link. I read for a while today about pathology and I liked the suggestions about what to ask the dr. I'll let you know how it goes --- thanks

  • suzannewierikko
    suzannewierikko Member Posts: 2
    edited June 2017

    I just found June 9th that I have grade 2 breast cancer in my right breast. it's scary .that why I came here after I was told by friends and family to come here and look them up. I am just waiting for an operation for masteric removing both breast.

    sorry for the spelling. But it runs in my family. on my mom side and my mother had breast cancer servies for 15 year and my auntie she 79 years old and 24 year cancer free.


  • MTwoman
    MTwoman Member Posts: 228
    edited June 2017

    Suzanne, so sorry you've had to join our club. If you fill out your stats with what you know so far in the profile section and then make them public (so we can see) we can help direct you to specific forums that might give you useful information.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited June 2017

    The goal of this thread is to give initial support and get you to the right thread. I'm so apprectiative of MTW and the mods helping that to happen.

    Anyone not finding a place, keep posting and we will make it happen. Love & Hugs&Prayers sheila


  • Heidihowie
    Heidihowie Member Posts: 1
    edited June 2017

    Results are positive, 2cm IDC grade 1 ER+ PR+ Her2-(yay!). Don't know stage yet. I am going in for re-excision and sentinel node removal on 7/6. With that, I will have radiation, won't know about chemo until the node report. This site has been awesome, teaching me how to read that god awefull oncology report. I have had quite the ride up until now. 3 separate core needle biopsies that came back negative. So glad that I have a persistent Doc!

    My questions are as follows:

    I am a 32H hard to find bras that fit, support and not made out of teflon, or SteeleScared. What have others with large Ta ta's worn post surgery, and during radiation. I cannot go braless, and the uniboob from no wires is super uncomfortable and sweaty. Which is what I am currently weareing after lumpectomy on 6/14.

    I am a very fair redhead that burns just looking out the window, and I have psoriasis. I worry about how my skin will respond to radiation. I see the aloe treatment as one solutions, anyone else similar? Have suggestions?

    Emotionally I'm doing ok, I have a plan, and am ready to be done with treatment, even though it hasn't started. I know it will be a wild ride, I know I will have some really low points. I'm ready, I am a warrior! Besides I have all 18 gazillion of you to help!

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited June 2017

    Okay Hiedi. we must get you to the right thread. Not sure what it is at this moment. But trust me there is a right thread. Hi I'm sassy, I wandered into BCO many years ago. I wandered into the wrong place . That's why I created this place. We need to launch you into a place that suits you. How to do that. Troublesome b/c you describe yourself as a problem with psoirarias

    I have much experience with skin stuff that is outside the accepted dermatology stuff It goes back to the old days. Vry old days



  • lightseeker
    lightseeker Member Posts: 36
    edited July 2017

    Diagnosed about 5-6 wks ago, ILC, Triple Neg. Scheduled for port implant on Wed, just so terribly sad, moments of reprieve but, only very short ones. It's like (figuratively) gasping for air, all the while knowing that this could literally happen to me. Of course, it's not fair...it makes most other injustices seem so small, in comparison.


  • MTwoman
    MTwoman Member Posts: 228
    edited July 2017

    lightseeker,

    have you been to either the TN or the ILC forums yet? There is also a forum 'chemo - before during and after' that might connect you with others going through similar treatment at the same time as you are. Sending you healing light and warm ((hugs))

  • flauto
    flauto Member Posts: 1
    edited July 2017

    Very thorough and well thought out - thank you for posting this list Sassy!

  • vl22
    vl22 Member Posts: 471
    edited July 2017

    Lightseeker - you are not alone. I'm IDC TN and it is very scary. It's like you keep thinking it's a bad dream and you never imagined it would be you. I wish I could go back to being only two ER+ tumors - that is how f*cked up this disease can be! The worst is the beginning - then you realize you have to keep living life and do all you can to survive. It isn't fair, it isn't easy and it hurts - but it is. What keeps me sane is that people survive this and we can too. Also, don't ever be ashamed to cry and yell and be angry. But don't let it consume you

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited July 2017

    Vl sending pm

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited August 2017

    up


  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited October 2017

    bump

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited November 2017

    bump


  • atkinsod1
    atkinsod1 Member Posts: 1
    edited November 2017

    Thanks for posting this information. Makes me feel more comfortable on getting ready before surgery and all the procedure that followed. I was just diagnosed this last Tuesday.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited November 2017

    I was going to add something here. Then decided not too. But I dislike blue boxes.

  • webmastercomerce
    webmastercomerce Member Posts: 1
    edited December 2017

    apppreciate you posting. I believe there are many out there with great ideas.

  • tessieb1904
    tessieb1904 Member Posts: 21
    edited December 2017

    This is my first post.  I am thrilled to have found this forum to have a place to share and ask questions.  I was diagnosed with colloid carcinoma to my right breast on November 20, 2017.  The prior week my doctor had aspirated what for years have been cysts.  This time he had trouble draining the fluid and commented it was thicker than in the past.  I have had trouble with cysts since in my late 20s and I am now 48.  I had a mammogram and ultrasound shortly thereafter which showed the mass on the right side and something small was seen on the left.  Next week Tuesday I will have the core biopsy procedure on both as well as ultrasound to the right underarm area (I do feel some swelling).  I was told that these results will determine what the surgery will be and the surgery will determine what the treatment will be.  It has been overwhelming and so far I have only shared to news with my husband, one sister and my boss.  I want to wait until I know more before telling everyone and I don/t want anyone to worry about me.  I think telling others will be one of the hardest things.  But this waiting and not knowing anything is such a struggle.  As someone else mentioned earlier, it does feel like a bad dream but I do not wake up from it.  My stomach is constantly nervous and it is so hard to concentrate while at work, although it is good to keep busy.  I have always been a very strong person but I am finding this a little more than I can handle.  I am sure once a plan is in action I will feel better.  This seems common from what I have been reading on these forums.  

  • MBPooch
    MBPooch Member Posts: 40
    edited December 2017

    Tessieb - Sorry you've found yourself here. I was just diagnosed with Pagets of the nipple in October and felt very similar to you in every way, I just turned 46 and have no family history of BC. Had genetic testing done and that came back negative as well. Try not to get too ahead of yourself. I did lots of over thinking and lots of googling that led me in places and situations that were completely different than mine which in turn led to a lot of senseless worry. After my initial diagnosis I had a negative mammogram but my MRI indicated a mass under the Pagets as well as another mass on both the left and the right. I did a core biopsy on all 3, DCIS was found under the Pagets but both other masses were benign. My underarm on the Paget side had been sore and slightly swollen as well but turned out to be nothing. I just had a BMX last Thursday with immediate silicone direct to implant. Still waiting on final pathology but my nodes were clear which was a huge relief. I did get a prescription for xanax for bedtime shortly after diagnosis. I found that was the time I really let my mind wander into some dark places. Once you have a firm diagnosis and plan in place you will feel so much better. Hang in there and keep us in the loop!

    Michelle

  • tessieb1904
    tessieb1904 Member Posts: 21
    edited December 2017

    Thank you Michelle for your response and encouragement.  This must have all gone extremely quickly for you.  Strange this would happen to you after negative genetic tests but I have read the same from some others.  Good advice on not googling because I was making myself crazy.  I will try to stick to this site!  I hope that you get good news on your final pathology report.  I cannot believe how at ease it makes me feel to chat with others who have or are going through the same experience.  So many strong and courageous women.

    I do have family history with my maternal grandmother, aunt, and 36 year old first cousin all having had BC.  All had successful mastectomies.  My core biopsy appointment got moved up to Friday this week due to them having a cancellation.  That was great news as it cuts down the wait time for a proper diagnosis.  Also gives me the weekend to recover.  I will keep you posted!