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Going crazy, waiting is the worst!!

PiperGrl
PiperGrl Member Posts: 15
edited May 2021 in Waiting for Test Results

It has been over a month since I had my first imaging (April 9), and I've had to wait for each appointment for what feels like forever.

I had a diagnostic mammo, ultrasound, MRI (bi-rads 4), back to ultrasound-guided biopsies which failed, so now waiting for the MRI-guided biopsies next Monday.

I was prepared to wait some time for results, but I didn't expect it would take this long... just diagnose me please! It's the not knowing that kills me.

Rant over.

Sorry, I really had to let that out.

PG

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Comments

  • sherri11481
    sherri11481 Member Posts: 1
    edited May 2021

    I get it. Hang in there sister. its a total mind challenge too. challenging your strength and emotions daily. one day up one day down.

  • PiperGrl
    PiperGrl Member Posts: 15
    edited May 2021

    :) thank you

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 149
    edited May 2021

    the hardest part of this is the waiting unfortunately. I’ve gone through two birads 4 biopsies. And the second one which led to the cancer diagnosis was literally the hardest period for me to get through. Being told i had cancer was hard but waiting was the hardest. I think because in that waiting period we are powerless. Once we are given information (it’s benign or cancer) we can either move on or begin the process of treatment.

    My cancer was small ans hard to find on ultrasound. It was originally found on MRI but the biopsy was done via ultrasound. They said I was lucky they could find it via ultrasound because I would had to have had the biopsy via MRI which is not easy. Sorry you have to go through all of this

  • JuliePink1959
    JuliePink1959 Member Posts: 18
    edited May 2021

    I have my core biopsy on Monday the 17th. Birads 4b. I'm beside myself with fear. Trying to chill, but man, this sucks.

  • JuliePink1959
    JuliePink1959 Member Posts: 18
    edited May 2021

    So sorry you've had to wait so freaking long for this stuff! It's like an endurance test, I'm sure.

  • PiperGrl
    PiperGrl Member Posts: 15
    edited May 2021

    I'll think of you while I get mine done. We're not alone <3

  • Zoey86
    Zoey86 Member Posts: 2
    edited May 2021

    hi, I'm waiting aswell. Had a biopsy done on a BIRad 4 lymph node this past Tuesday. I was told results by Friday but yeah that didn't happen and I was told to try to enjoy my weekend, umm I don't think so. Nothing enjoyable about waiting to find out if you have cancer. Sorry your wait has been so long. Anyways just dropping by to say you aren't alone in this and I hope all turns out ok.

  • alicebastable
    alicebastable Member Posts: 1,933
    edited May 2021

    Zoey86, I went to a concert the next night after my biopsy, and I certainly had fun. I kept on having fun up to my surgery date, and then afterwards. And I remember the fun stuff more than the medical things from that year.

  • Zoey86
    Zoey86 Member Posts: 2
    edited May 2021

    That's good you had fun and that you were able to go out and have fun, not saying that in a phony way , really that is good you did and I hope you are doing well. Everyone is different.

    I just don't feel like having fun right now. I been having increasing back pain and issues with fatigue and my appetite so maybe that's part of my overall crankiness. I did go for a walk but my back is really making things tough, I think I need a MRI.

    Anyways I would love for you to share some insight on how you had fun instead of just dropping a quick line that kinda made me feelguilty like I should be out partying right now what's wrong with me? We are all here for support during a difficult time after all.

  • PiperGrl
    PiperGrl Member Posts: 15
    edited May 2021

    I hear ya Zoey86, I have no appetite but have eaten way too many cookies. My husband is doing his best to keep me distracted but my mind constantly wanders right back to it.

    I have not been able to sew (I sew bags as a hobby), or read, or really get anything done at work. It really has taken my life hostage in a way.

    I know the wisdom is to take one day at a time but I'm not coping well with that either :(



  • alicebastable
    alicebastable Member Posts: 1,933
    edited May 2021

    I certainly didn't try to make you feel guilty. I just said what worked for me as a suggestion of coping with the waiting all of us have had to do. It's going to be the same amount of elapsed time no matter what you're doing, and I preferred to enjoy myself instead of worrying about something I couldn't do anything about until I had more information.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 149
    edited May 2021

    in the months leading up to my own cancer diagnosis I had been caring for my sister who also has cancer. Between that and other things in my personal life I was exhausted. I’m generally an upbeat, active person. But there were days that I just allowed myself lots of time resting. There were days I chose to stay home instead of being with friends. Usually after a period of days I’d have the energy and interest to do something. Maybe that was hiking by myself or maybe that was going to a birthday party. I think the most important thing is to honor your feelings no matter what. You will get through this.

  • salamandra
    salamandra Member Posts: 719
    edited May 2021

    Something I read/heard a while ago that really stuck with me is that humans are a lot better at remember what we DID than how we FELT.

    So even if you're feeling bad, if you're doing something interesting, meaningful, enjoyable, when you think back years later you are much more likely to remember it positively.

    In my life I've found this to be true at least 95% of the time, if not more. The exceptions are pretty clearly extraordinary, like my family trying to celebrate my 21st birthday two days after my mother's death. On the other hand, the trip to a friend's wedding in the immediate aftermath of the break up of the most important relationship of my life, which I know I was feeling and mourning, is actually now a wonderful memory for me.

    Now I try to find the right balance between honoring my feelings and giving myself something good to remember. When I think of it in those terms, providing something good for my future self, it feels less oppositional, less like fighting myself, and more like caring for myself. Something good to remember doesn't have to be partying, it can be a walk in the park or a playdate with a friend's dog or a movie you've been meaning to watch.

    I also found the waiting very very difficult at every step of the way. I definitely remember that clearly. But having some good memories from that time really helps.

  • eviec1
    eviec1 Member Posts: 80
    edited May 2021

    Salamandra, thank you for that post. I needed to hear that right now.

  • JuliePink1959
    JuliePink1959 Member Posts: 18
    edited May 2021

    Freaking out over my core biopsy tomorrow. Feels like the stress is killing me. I keep googling and looking at my ultrasound info. Mass is in axillary tail. Ill-defined margins. BIRADs 4B. Please God, calm my terror.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 149
    edited May 2021

    thinking of you, update afterwards.

  • PiperGrl
    PiperGrl Member Posts: 15
    edited May 2021

    @Julie -- I'm right there with you. I had a terrible night sleep. I think I'll need a mantra for the actual biopsy time. I've heard MRI-guided biopsies can take a long time. They gave me a 3 hour appointment 😳

    Wishing you and I good luck today, hoping that they find whatever is there easily.

  • PiperGrl
    PiperGrl Member Posts: 15
    edited May 2021

    Now waiting for results. They had to apply quite a bit of compression for the MRI biopsies and at the end there was a mess of discharge... hopefully pathology will have answers soon ish.

  • JuliePink1959
    JuliePink1959 Member Posts: 18
    edited May 2021

    Piper, I got through my core biopsy today but I'm still freaked. Glad yours is over, too. Now we wait together. I'm praying for both of us.


    Monarch! Thank you for being here with us. The minutes go by like hours

  • JuliePink1959
    JuliePink1959 Member Posts: 18
    edited May 2021

    Piper,How in the heck do ultrasound guided biopsies fail? I hadn't even heard of that, but then I'm learning an awful lot on this forum.

  • redcanoe
    redcanoe Member Posts: 72
    edited May 2021

    a biopsy is considered discordant when I doesn't explain the images on the ultrasound. My discordant biopsy came back as normal breast tissue which didn't explain what was seen on screen.

  • PiperGrl
    PiperGrl Member Posts: 15
    edited May 2021

    the lesion is extensive in the MRI but cannot be seen in the ultrasound... they thought that after having the MRI they could find it with the ultrasound (area is about 15-16cm),but they could not... the MRI was about 1.5 hrs without moving, I got such a neck cramp! but other than that, the doctor did a good job numbing the area.



  • AprilMoon
    AprilMoon Member Posts: 7
    edited May 2021

    Hi Ladies,

    I've been reading through what you are all going through and feeling a little less alone. I go in for 2 biopsies tomorrow and feel like my life is just standing still (and I know I will still have to wait for biopsy results!) Last week I was woken up in the middle of the night with pain on one side of my breast. The next day I used cold/warm compresses but it did nothing. My breast started really looking bruised and discolored so I went to drs the next day. They immediately did a mammogram and ultrasounds. They have no clue what the redness is from, but say there is focal asymmetry measuring 28mm right in that area. While they were there they happened to find an intraductal lesion with internal vascularity (only 7mm) right above my nipple area. That was surprising. They set me up for the biopsy on the 19th and its been the longest week of my life. I see that it is a BIRADS category 4B, which I've read all about now.

    I'm just exhausted... they have me on antibiotics, hoping that that will clear up whatever was causing redness and the antibiotics are wrecking my gut. The pain in that area has decreased, thankfully. But they said they will still probably biopsy that area (along with lesion) tomorrow. I am having a hard time eating and I'm tired all the time. I feel so silly since really, this could all mean nothing. But, its the big what if.

    If you've read this long, thanks! I've really enjoyed reading about your experiences too... Its just good to be somewhere where people understand how crazy this all feels.

  • JuliePink1959
    JuliePink1959 Member Posts: 18
    edited May 2021

    RedCanoe and PiperGrl, thanks for those explanations! I feel as though this is one steep learning curve.

    April, I know exactly how you feel with the exhaustion and having a hard time doing just daily stuff like eating and functioning. It does help me to come here and see what REAL people are saying about their experiences, vs. reading the cold, hard statistics and percentages of malignancies, etc. April, I hope the antibiotics help a lot to clear up whatever the mystery area is.

    PiperGrl, dang! The neck cramping is rotten. Did they use contrast? I'm worried that I'll have to have a breast MRI and I am utterly incapable of getting inside the tube. Even with anti-anxiety meds. When I broke my arm and shoulder blade and tore a shoulder muscle, I had to have an MRI and they had to use the "open" one. I don't think they use that for breast MRIs. Also, my shoulder is "frozen" now and I can't lift it above my head, so hoping I don't need more imaging. Don't you hate it when your brain (or at least mine does) gives you an even longer list of things to worry about? SO OVER IT!!! :)

  • PiperGrl
    PiperGrl Member Posts: 15
    edited May 2021

    April,

    I'm so glad you went to the doctor right away! It does feel like someone takes the floor from underneath you. I hope they are very kind to you with the biopsies... have you considered probiotics? I'm not one for supplements but I've had so many antibiotics lately and they've been a stomach-saver!

    You are definitely not alone 💜

    About the biopsies...

    I wish they had told me I might be out of commission after the MRI-guided biopsies! They asked me to bring a sports bra (which I don't own).. it would have been useful to know that they will use surgical tape on top of the wound, then gauze. Then you put the bra on, and they bandage on top of the bra. They asked me to keep it for 24 hours without removing the bandages... I would have purchased a sports bra had I known. Instead, I wore a compression cami as I assumed they wanted to have sometimes that would hold a cold compress... oh well.

    best of luck!!


  • AprilMoon
    AprilMoon Member Posts: 7
    edited May 2021

    Thank you so much Julie and Piper! Piper- yes I've been doing lots of probios and drinking Kombucha (I love it anyway- so its not hard! LOL)

    I was wondering- how painful was the core needle biopsy for those of you that have had one? I know that everyone is different, I just am curious. I'm a person that does better just knowing exactly what to expect.

  • PiperGrl
    PiperGrl Member Posts: 15
    edited May 2021

    the actual poke was well numbed, way less painful than the root canal I had a couple of weeks ago. It's after it wears out that I felt pain. Well, after they finish, they have you turn and someone applies pressure to stop the bleeding (I didn't look so I saw no blood, yay)... that compressions did hurt somehow because it involved parts of the breast that were not numb, it felt like she was squeezing the jelly out of me (kid expression).

    Laying still in an uncomfortable position was the worst of it so I consider myself lucky.

    I feel so off thay it's increasingly difficult to figure out what hurts lol.

  • AprilMoon
    AprilMoon Member Posts: 7
    edited May 2021

    okay, thank you, that helps a ton. I keep telling myself it cant be worse than the dentist (I absolutely loathe the dentist). I'm more worried about the poke, so hopefully they just numb it well and it will be okay. I will prepare myself for the after part for sure! Thank you again!!

  • JuliePink1959
    JuliePink1959 Member Posts: 18
    edited May 2021

    April, for me it was definitely not worse than the dentist. This is the second one I’ve had thus far in my life. The numbing shot stings for maybe 10 seconds and then the procedure itself is just a little bit of pressure. In both instances for me, I was out of commission the following day because my breast was so freaking sore. It helps to put on a comfortable bra and to keep ice on it like once an hour for 10 or 15 minutes. Also, the first time I had it I had a giant dark bruise on my boob but this time I haven’t bruised. Probably because it’s a different kind of location and they went in just under my left armpit to access the place at 2 o’clock on the left breast. You’ll do fine with the biopsy. It really truly isn’t that bad and I am a big wimp when it comes to all things medical. Ha ha.

  • JuliePink1959
    JuliePink1959 Member Posts: 18
    edited May 2021

    PiperGrl,

    I got a laugh out of “squeezing the jelly out of me.“