Fill Out Your Profile to share more about you. Learn more...

Can't believe I'm back here again

Options
AnxietyGirl85
AnxietyGirl85 Member Posts: 37
edited September 2022 in Waiting for Test Results

Hello all!

It's been a long time since I've been active on here, but after nearly a full five years since I started this ride, I find myself back in limbo once again.

So, brief catch-up - you can see from my signature what happened with me previously, and I'm happy to say that, since finishing treatment in the summer of 2018 (and being NED since Dec. 2017), I've been well. I go for my 6-month check-ups with a lovely nurse practitioner who specialises in cancer patients and survivors (that's literally the only kind of patient that she sees, she's with the Cancer Agency here), and my annual mammograms, and everything has been smooth sailing, fortunately, no concerns, no scares.

Until now.

This past spring, my annual mammogram was a bit late being scheduled, due to the mess that the healthcare system is in here right now. By "late," I mean about 2.5 months late, not SUPER-late. I always experience a ton of anxiety before these scans, for no actual concrete reason, but this time, I couldn't shake the sneaking feeling that, it was scheduled a bit late, so it would be just my luck that something would come up now.

Went for my appointment, it was quick and straightforward, as always, and was sent on my way. Two days later, I had an interview for a great new job and was feeling confident about everything... until my NP called that afternoon and said they wanted me to come back for additional imaging. The reason was that there was an asymmetry seen on one of the angles. No mass or anything like that, an asymmetry.

I panicked, of course (this is my first time being recalled after a mammogram, post-treatment), but I had my regularly-scheduled 6-month checkup just a week or two later, so that was a good chance to talk to my NP about it. The exam was fine, she told me that everything looked/sounded/felt fine, and she didn't observe anything to be concerned about with my physical (and she is always very thorough). I told her I was stressed, and she looked at the info she had about the mammogram results and talked me through her thoughts on it, and how she felt there was a good chance that it's nothing - she didn't make any guarantees, of course, but based on the info available and her knowledge (remember, she specialises in this sort of thing), she thought there was a very good chance that it would be fine.

Fast forward three months, because that's how long it took to get a follow-up appointment from the cancellation list (and how long it took me to talk myself down from the blind panic I was experiencing!), and back I went for a diagnostic mammogram and ultrasound. They were VERY thorough because of my history, lots of images on the mammogram (and re-doing some of them several times to make sure the images were as clear as possible), and a full hour of being ultrasounded, taking lots and lots of pictures at the request of the radiologist. By the time they sent me home (after two full hours of imaging, no exaggeration), the info I was given by the technicians was that there were no distortions, no masses, no growths, in any of the images, but that the doctor was seeing something, MAYBE, probably calcifications, that they THOUGHT was a new thing, compared to all my previous scans, but they weren't ENTIRELY sure of just what it was and if it was ACTUALLY new (because it's possible that it may have been in all my previous imaging tests, also), and that they'd get another opinion on it but that the follow-up would likely be another follow-up appointment in 6 months.

A week and a half went by, and by then, I had kinda talked myself down again, telling myself that, this is about the usual timeline post-scan when I get a call from my NP telling me that it's fine and all that, especially since after my previous mammogram, she'd called me two days later to tell me I needed more tests. Sure enough, the phone rang 9 days after that appointment and my NP tells me that... they want me to come in for a biopsy. She has no information on why except that there appears to be a couple of calcifications that they want to look at. There's no information on whether they want to biopsy the calcifications because they're suspicious or because they're new and they want to be extra-careful due to my history.

And back comes the panic. :(

And it's all so triggering, because right now, the wait time is "a couple of months" for an appointment, which would mean I'll probably get a call in November to come in, which is the same time that I had my PREVIOUS biopsy that led to my cancer diagnosis in 2017, and all of the awful memories are flooding back in, all the awful feelings, all the fear. All I can think is, "Of COURSE it's happening like this, of COURSE it's happening on the same timeline as last time, it's just my luck for this to happen now, in this way, this close to the 5-year mark, and just as I was getting my life on track." (Anxiety sucks.)

And with precious little info to go on, and no information as to the BI-RADS score, my anxiety has taken me to all of the deepest, darkest places and possible outcomes. It's been a couple of weeks of waiting now (and jumping out of my skin every time the phone rings), and I've been through all of the stages of grief about six times already. It just feels like everything is falling apart all over again, after all this time and after so much hard work to get back on my feet and get my life together again all on my own, and it's so disheartening. It's hard to sleep, it's hard to focus, and I'm afraid to feel optimistic about the outcome because I talked myself into feeling optimistic after the LAST two appointments, too, and the results have just gotten progressively worse.

It also feels like everything has just frozen in time, like my entire existence is up in the air, everything is on hold, everything has ground to a halt. I keep thinking about the nightmare that the whole process was last time, and how close I came to losing EVERYTHING, and how I was only just now starting to think ahead a little bit after nearly five full years of being afraid to make plans for my life and how it all feels like it's crashing down around me again, like I've been robbed of the little bit of stability I've been able to eke out for myself just as I was finally in the home stretch of the 5-year mark. It's just a lot to think about, and a lot to carry, and having anxiety doesn't help at all. I keep thinking and overthinking about what I've been told and what I haven't been told, looking for meaning and hints (like, my NP asked if I had someone to support me through this - she knows I'm single and live alone here with no real social network in town - and my anxiety immediately ran with that and decided that that means the worst is happening, because why else would I need support??), and I'm really struggling with it.

I was going to make this a short post, but I guess I really needed to get all of this out of my brain. I know nobody can reassure me or make promises that it'll all be OK, but it's helpful to share with those who understand, I don't have anyone in my life who knows what this is like because I'm 37 and nobody else in my circle of friends and family has ever been through this, and I'm glad to have a place to come to talk.

Thanks for listening, all, I'm glad you're here. <3

Comments

  • quietgirl
    quietgirl Member Posts: 165
    Options

    you need support because you need support not because someone thinks the worse is coming, so try not to read anything more into your doctor trying to be anything more than supportive I know me saying that isn’t instantly going to make it better but I hope reading it will at least make you feel like it’s okay to find support even when you don’t know what the outcome is going to be, the support is for the now so you can deal with the now. And if the only support you have at this moment is this board than KNOW you have it. While no one can give you answers at least we can be here to lean on. Hugs to you.

  • AnxietyGirl85
    AnxietyGirl85 Member Posts: 37
    Options

    @quietgirl, it always helps to hear it from someone else. I know, logically, that a lot of this is my anxiety talking (I call it my Dark Passenger, and it's so loud in my brain), and that I shouldn't be jumping to any conclusions or making assumptions on anxious interpretations of how someone phrased something (my NP is really great, I've been seeing her for years, she knows my anxiety and I know she wouldn't purposely mislead me or keep me in the dark), especially when I don't have all the facts yet, but it's so hard to fight my brain, my anxiety can't be reasoned with, and it helps so much to hear that logic from someone who DOESN'T live in my anxiety-ridden brain. <3

    (Doesn't help that my previous experiences with the medical system here have left me with a lot of trauma and trust issues, and all of that is bubbling up so badly right now. Calm logic from others who understand is so appreciated in this moment.)

  • parakeetsrule
    parakeetsrule Member Posts: 605
    Options

    Waiting sucks! No doubt about it. I would highly recommend talking to your doctor about taking anti-anxiety medication, and if you are already, increasing or changing it. That will help a LOT.

    As for why they want the biopsy, you answered that question in your post: "there appears to be a couple of calcifications that they want to look at". That's literally all the reason they need! And yes, that's because calcifications can sometimes be a sign of something concerning, because it's new, and also because of your history.

    There's no other secret reason for biopsy that they would be hiding from you.

    Waiting is stressful and not knowing is stressful but almost every breast cancer patient will tell you this is the worst part! It will get better when you have concrete answers, regardless of what the answer is. And hopefully you get an answer soon!

  • mavericksmom
    mavericksmom Member Posts: 1,128
    Options

    anxiety85, seems we are on a similar journey, except mine is going a lot faster! When it comes to breast cancer moving through tests and treatments fast is easier to deal with.

    I had IDC in 2003, 2 lumpectomies, chemo, radiation

    December 2018, ILC same breast, 2019 mastectomy, DIEP reconstruction.

    Transferred records from cancer hospital to local hospital in July of this year for what I thought would be a boring yearly visit with screening mammogram. I too was about 2 1/2 months past due, but that really isn’t much! Unlike you, I was lucky to meet with my new breast surgeon and his PA, and he wrote my script for screening mammogram. That was on a Thursday, his office got me a mammography appointment for the following Tues. I went to my appointment expecting it to be quick, after all, I only have one real breast! Nope, needed more views, then the radiologist needed to speak with me, he showed me a group of calcifications in about a 5cm area that we’re not seen on last years mammogram. I had a biopsy the following Tuesday and Two days later my surgeon called to tell me it was breast cancer, but the luckily the “best” possible kind....well almost, maybe second best: High grade DCIS, with microinvasion. My surgery is in October.

    The point is, if you have cancer again, it most likely will be found early. I was in a shock the first two times I was diagnosed! This time, not as much! I feel more annoyed than anything. I was denied a bilateral mastectomy last time. I shouldn’t be gong through this now, upending all my plans, my work, my family, everything! I GET how you feel! I feel it too! All the waiting, and mine wasn’t anywhere near as long as yours, really puts your life on hold!

    I don’t know about you, but I find no peace of mind in hearing “80% of biopsies are negative.” Crazy as it sounds, I find it easier to believe it will be cancer! I was totally prepared for the diagnosis, extremely annoyed, but prepared! In the end, we deal with it the best we can.

    You have a lot of support here. Anxiety meds are a good idea if you can’t calm your nerves. I used them with my first cancer. One word of caution if you take anti anxiety medicine, when you no longer need them, do not stop cold turkey! Check with your doctor first as some medications need to be slowly decreased.

    I hope this helped you! You can vent to me anytime, here or PM (private message)



  • AnxietyGirl85
    AnxietyGirl85 Member Posts: 37
    Options

    That's just the thing, though, @parakeetsrule, I had the reality of my imaging test results hidden from me the last time I went through this process, they wouldn't tell me anything about it whatsoever and ignored all of my questions (they wouldn't even tell me WHY I needed a biopsy, they just pushed me out the door, terrified and in tears), then didn't even tell me the full truth AT the biopsy appointment (I know this because I have copies of the reports, I know what they knew then and refused to tell me), I felt very misled by the people entrusted with my care, and I don't trust that they're not doing that to me again.

    So much of this anxiety now is coming from THAT experience. I keep thinking, "So they told me ___, but what are they NOT telling me??" I've only done this one before, and I was misled and kept in the dark about what was happening and the seriousness of it, and I can't help but worry that it's the same thing all over again. Doubly so because I had so many negative experiences with doctors after diagnosis, through the whole treatment process. I just don't trust the medical professionals here, not after that.

  • edwards750
    edwards750 Member Posts: 1,568
    Options

    Bless your heart you are really on an emotional roller coaster. Having to wait so long to have your biopsy seems criminal to me. I am the world’s worst for waiting. You are right none of us is qualified to tell you it will be okay because we don’t know either. What we can tell you is we are your support team. We have all been there, done that.

    My SIL had BC and was called back multiple times because they “saw” something and it turned out to be scar tissue every time.

    I was informed by a PA that all the lung nodules I had that showed up on an X-ray needed to be taken care of immediately as in go back to the Cancer Clinic where I had my treatments. However, the radiologist said it was normal because of my radiation treatments so it was okay.

    My point being sometimes it’s better if they are overly cautious even though it doesn’t help your anxiety especially when they can’t do it sooner. I would think if they thought it was more serious they wouldn’t delay your biopsy would they?

    Keep the faith and keep us posted.

    Diane

  • maryjv
    maryjv Member Posts: 269
    Options

    Anxietygirl,

    We are kindred spirits! I was diagnosed in 2019 w TNBC and I am 38 years old...unfortunately, I go down the rabbit hole every time I have a new s/s! I cannot tell you how many times I have had: brain MRIs, bone scans, CT and MRIs since diagnosis. For me, I prefer to have a scan to give me peace of mind-but my oncology team only request scans w/ new and ongoing symptoms. I too had a horrible experience with my initial diagnosis and mistrust with the imaging and care team! We are with you, sending prayers your way!

    Mary