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Freaking Out!!

ktsmitty Member Posts: 15
edited September 2022 in Just Diagnosed

So I was diagnosed back in July. Nothing I saw, but the past few years there was something there because I had to keep repeating my mammograms, until this year, the radiologist recommended a biopsy. Yep, it was cancer (6 o'clock). Went and saw two separate breast surgeons, both seem to agree on the treatment. One Dr. orders a MRI, which I get the next day. The MRI finds another lesion, so they recommend another biopsy. Other Dr. sees something on the ultrasound and additional mammogram and orders a third biopsy (same breast 4 o'clock). MRI biopsy doesn't happen because a different radiologist says he believes it to be a tendril off the original tumor. I get the other biopsy, of which I still don't have results for as they've ordered more staining tests. So, fast forward to today, and I'm a total basket case and freaking out. Why wasn't all the staining done from the get go? Why would more tests be ordered unless they knew it was also cancer and they need the new stains to isolate the type? I feel like a yo-yo and honestly know what the heck to believe or not believe. How can one Dr. see one thing and others see something else, but they don't agree on either? I've already fired my gynocologist because she didn't even have the decency to call me and tell me about the original diagnosis, she had a nurse call and leave me a voicemail - how awesome was that? I'm seriously on a cliff right now.


  • mavericksmom
    mavericksmom Member Posts: 999

    As someone who understands what you are going through, I can't tell you what you want to hear. What I will tell you is that I was just diagnosed with breast cancer for the third time. I had a mastectomy with reconstruction in 2019. (I had it twice in same breast, IDC in 2003 and ILC in Dec. 2018) I wanted both breasts removed, but my surgeon refused. I went to a very well-known cancer hospital. He said that my chance of getting cancer in the opposite breast was almost zero! He said it was hospital policy not to remove a healthy breast unless the woman was BRCA positive, which I am not.

    I just had suspicious mammogram in July, biopsy Aug 2 and here I am, looking at another mastectomy with reconstruction! Thankfully, I switched to a local hospital, and I got to know my surgeon and trust him before getting diagnosed. That makes a huge difference!

    I can tell you that waiting for results is the worst part!

    You sound young! You probably have so many questions and no real answers. On the upside, if you had cancer, most likely they would have told you by now. My first two biopsies were on a Tuesday and I got results the following Tuesday. This time I had my biopsy on a Tuesday and my surgeon called me to tell me it was cancer, two days later. I still needed to wait until I saw him the following week to get the full pathology report. What you have going on could be benign. Some staining just takes longer, as does finding out the hormone receptors.

    Try to keep yourself busy! I wish I could take the worry away from you. Having just gone through that myself, it is fresh in my mind! I know it is torture!

    I hope you get answers soon!!!!!

  • moderators
    moderators Posts: 7,271

    Hi ktsmitty, and welcome to,

    We're so very sorry for the reasons that bring you here, but we're so glad you've found us. As you can already see, our Community is an amazing space full of helpful members always willing to offer advice, information, encouragement, and support -- we're all here for you!

    As mavericksmom says, the waiting is the worst part. Try to keep calm and stay positive. Keep yourself busy while you wait for the results, so you aren't dwelling in the worry. We know it's easier said than done!

    Please keep us posted with what you find out. In the meantime, we're sending good thoughts your way! Let us know if there's anything else we can help with.

    --The Mods

  • alicebastable
    alicebastable Member Posts: 1,926

    Aw, Mavericksmon, I'm so sorry you're having to go through this again.

  • meow13
    meow13 Member Posts: 1,363

    Deleted my off topic post.

  • mavericksmom
    mavericksmom Member Posts: 999

    Thanks Alice! Believe it or not, there have been a lot of positives this time around. I met with my surgeon before being diagnosed this time so I trusted and chose my doctor as opposed to being assigned one. My biopsy was 100% as good as one can be, caring wonderful technician and radiologist and top of the line equipment. Local hospital where I gave birth to my children so it feels like home! Also my mindset is different. I was totally surprised to need a biopsy, but unlike the former two times I wasn’t in denial. When the surgeon called me I was so happy to hear from him a day earlier than I was told and when he told me I have breast cancer again, I wasn’t blindsided. I know I have a tough road ahead, but I survived twice before, I have every intention to do it again!

    Ktsmitty, hang in there! Things will get better once you get more answers! I re-read your post, so they already said you have cancer. What type? They should have told you that much. Invasive vs In Situ? Don’t worry, you have a surgery date. You have your plan. Whatever they learn likely won’t change that.

  • mavericksmom
    mavericksmom Member Posts: 999

    meow, I am having a mastectomy with reconstruction! Had I had my current surgeon in 2019, he would have removed them both. I went to the city because mylocal hospital had just hired my current breast surgeon, but his office wasn’t ready for business yet. No use looking back so I am looking ahead! I know things will go well. I just don’t know what type of reconstruction I will have because I already had a DIEP in 2019.

  • tb90
    tb90 Member Posts: 278

    Hello Ktsmitty:

    First of all, you said you do have cancer. Sorry the responses have misinterpreted and gone another direction altogether.

    You are encountering what I too found to be so difficult and astonishing. Science is not definitive. There are too many variables. You will find yourself getting second opinions and conflicting advise throughout. Take a deep breath. You have time. Become as informed as you can and advocate strongly for yourself. BCO is typically or has been a great place for the most up to date info and support. If you are not getting it here, please start another thread.

    You are not alone and the majority of breast cancers do NOT lead to death. Focus now on educating yourself. Knowledge is powerful. Surround yourself with supporters and start self care now.

    Like most of us, you will become an expert. Whether or not you want to. This is not an emergency. It feels like a crisis. It is a crisis, who am I kidding. But you can and will do this. As you receive more information, please come back for more support.

    And breathe. Hug

  • alicebastable
    alicebastable Member Posts: 1,926

    Mavericksmom, I get it. My first cancer was endometrial back in 2008, and that scrambled my head for a month or so. It didn't help that the surgical oncology gynecologist was a total paternalistic shit who would say things like "I have cured you! Go home and don't worry your little head about it!" 🤮🤮🤮😡😡😡. In 2018, when I got the breast cancer diagnosis, I was surprised how calm I was - I like my surgeon and felt like she was my partner in the whole thing, but right from the start it was different. Then I got told I had kidney cancer a few weeks later, and I think I freaked the doctor out because I just gave him a big grin and said, "Let's get rid of it!" Okay, the grin may have been a little hysterical. But it's strange how relatively calm I felt about the most recent ones. Maybe we're similar about "That didn't kill me, so maybe it's no big deal this time, either."

  • ktsmitty
    ktsmitty Member Posts: 15

    I appreciate the responses, thank you. Second biopsy results arrived last evening, Atypicallobular hyperplasia; modular stromal sclerosis. Not sure if it's a sign of the cancer I already have or not. Same course of treatment, Dr will try to remove it with the other. I'm still a hot mess.

  • specialk
    specialk Member Posts: 9,189

    ktsmitty - glad the additional biopsy is complete and you have the info. I think most of us are a hot mess at diagnosis - it is a pretty natural state of affairs, but usually does improve as you get the plan of action together and start moving in a direction forward. A lot of the initial diagnostic period is one step forward, one back, wait, do more tests, etc. It is a lot! As far as some of the pathological tests go - not all hospitals have the capability for all tests related to breast cancer - it is not uncommon for some to be send outs and take a bit longer. Often the staining is actually time controlled and the results take a number of days. Nobody tells the patient that and you're left wondering why it is taking so long! I ended up having both atypical ductal hyperplasia and atypical lobular hyperplasia in the non-cancer breast, but this was not discovered until the surgical pathology was done. I am glad your surgeon has a full picture because it will help with their surgical recommendation. Have you spoken to your surgeon now that this additional biopsy is complete? What are they advising? Hang in there!

  • mavericksmom
    mavericksmom Member Posts: 999

    ktsmitty, so glad you got your results! I am glad we have this platform to learn and to vent. I think I am going to take a break from it for a while. I don't know about you, but sometimes I need to share thoughts and fears, and sometimes I just want to share with my family and close friends.

    I wish you the best! We will both get through this!

  • lw422
    lw422 Member Posts: 1,366

    ktsmitty--so sorry that you find yourself here, and that you are having anxiety around the diagnosis. I can tell you that practically every person on this forum understands how you are feeling and that your emotions are all over the place. Most of us settled down a bit once treatment plans are made and treatment started. Many of us needed medication to help with the overwhelming anxiety, so if you feel that might help then please ask your doctor for it. There is no shame in needing a little help to get through the terrible anxiety. My very best to you.

  • ktsmitty
    ktsmitty Member Posts: 15

    Many thanks to all that replied. I’m doing a bit better now. Surgery is scheduled and since I’m considered Luminal A, no chemo, just radiation. Long road ahead, but I’ll get there. Thanks again.

  • ktsmitty
    ktsmitty Member Posts: 15

    It's been over a month since I posted and wanted to give an update and say that I'm 'freaking out' again. I had my surgery on Sept 12. He took out the tumor and the ALH. He also took 2 sentinel lymph nodes. Went back yesterday for post-op and pathology results. Tumor was 1.5 cm, was also IDC, DCIS, had ALH, and ADH. The lateral margin had IDC 5 mm from the true margin. But, one of my sentinel lymph nodes was positive for Micrometastases and that's what got me very concerned. I guess they'll never know if any got away unless it comes back, right? Then, would it be too late to treat it? My radiation treatment is the same (3 weeks) but I'll also get radiation to the arm pit. My MammaPrint was low risk, so no chemo.

  • quietgirl
    quietgirl Member Posts: 165

    I wish I had the right words to say but I know I don’t. Experts and others can give you all sorts of statistics and probabilities but in the end because we are each individuals and unique no one can tell you exactly what the future holds. So while a positive node increases your chances it does not guarantee you will have future issues. So you take the steps that you are willing and able to balanced within your personal situation. Often times there is a difference between treatable and being able to cure something or completely prevent something. So one step at a time, try not to worry away your present on what might happen in the future. Focus on getting through this part of the treatment. And make sure you moisturizer your armpit during radiation because that will help get through that. Sending you healing thoughts and positive energy

  • rah2464
    rah2464 Member Posts: 1,192

    ktsmitty glad your surgery is completed but sorry to hear you had some surprises on final pathology. One of the most difficult emotional aspects of this disease is when things feel like they abruptly change on you. You kind of think you have in mind what the results will be, wrap your head around that, then you can get what feels like a left turn somewhere.

    It sounds as though you have a very competent team who are doing everything to manage correct treatment for you. You have clean margins but now an issue in a sentinel node which will be addressed with radiation and possibly anti hormonals (wasn't sure of your hormone status). The though of movement to that sentinel node can be frightening, however another way of looking at it is your body was doing its job. Filtering and stopping the cancer at the gateway to the rest of your body. I hope some other ladies on here that had micrometastases to one or more lymph nodes will reach out and let you know how they are doing.

  • ktsmitty
    ktsmitty Member Posts: 15

    Thanks for the feedback. It is all just so overwhelming. My head is all over the place with all of this.

  • alicebastable
    alicebastable Member Posts: 1,926

    ktsmitty, my surgery took one sentinel node and it had a micromet. I still had a low enough Oncotype score to not need chemo. I think it's up to three micromet nodes are still considered not worrisome. The only difference it made was more extensive radiation, 33 instead of the previously planned 22 sessions, and zapping my axilla and clavicle areas.

  • edwards750
    edwards750 Member Posts: 1,568

    My situation was exactly like Alice’s.