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

Not diagnosed, waiting for results

Options
emwilson
emwilson Member Posts: 7
edited August 2023 in Not Diagnosed But Worried

I have never posted in anything like this before. I was given a BI RADS 5 rating with an axillary lymph node with 7mm cortical thickening. There’s zero family history, I’m 45 years old, I’ve never had an unusual test result before and other than a few extra pounds I am very healthy. This time I felt a lump but it came out of nowhere and was big. It measured 4.1cm in the ultrasound. I am scheduled for core biopsy on the lump and also on the lymph node. Something that keeps creeping into my mind is that I happened to have covid and also had to have a tetanus shot just three weeks prior to the mass appearing. What are the odds that they could all be related and the biopsy results come back fine? Am I grasping?

Comments

  • recoveringbelle
    recoveringbelle Member Posts: 22
    Options

    Welcome. I'm more of a lurker here than frequent poster but have been around the block w/r/t surprising test results back when I was 39 and now again at 57. I'm glad you posted.

    So, my two cents worth is that first, worry even to the point of rumination is more common than not, and normal! You'd have to be working a pretty intense Zen program for the past 20 years to just "let it go" when you're in between tests, reports, & appts. Second, each person needs to decide the degree to which self-education, including reviewing case histories here, reading layperson's guides, and/or going straight to peer-reviewed research, feels empowering & calming vs unnerving. I for one like to read everything I can get my hands on, because it gives me a sense of control—but others find that makes them feel more out of control and defer to their doctors. Both ways are fine.

    Third, if you review a lot of current peer-reviewed research, you may you're more informed about a particular study or issue than one of your providers—in this case, maybe "challenges in differential diagnosis of lymphadenapathy vs invasive breast carcinoma in post-COVID patients," so don't let that freak you out. They can't read 500 manuscripts a year about every permutation in potential BC. OTOH, you're reading just about your particular situation. And if you raise any findings that suggest one vs another dx pathway w/ your provider, and they're threatened or snarky, find another one.

    Fourth, I don't think you're overreacting by having the biopsies. (Maybe I misunderstood about whether you were considering not going through with it? Strategically disassociating, I cancelled my first biopsy back in 2005, actually, until the radiologist gave me a reality check about my kids. I was like, this can't possibly be real, and I've got a life and work to do, so it's going to go away by my cancelling the appointment.) Seems to me it's entirely possible like you intimate that your situation could have infectious etiology, or that there's a third or even potential fourth explanation for your situation—perhaps the lump is a fibrotic growth but the lymph node warrants more concern, or vice versa. So it doesn't seem to me that you're grasping but rather thinking critically. But if it were me, even w/ alternative scenarios in my head, I'd be sure to keep the appointment.

    Please keep us informed about your results. Hope you can get clarity soon—the "scanxiety" can be as bad as coping w/ an official dx, because before clarity, you may have 10 different dx in your head. In the off chance it's positive, at least you'll know what it is and have great resources these days to help you decide next steps. God bless.

  • emwilson
    emwilson Member Posts: 7
    Options

    thank you for your thoughts, they were helpful! I am 100% going for the biopsies, waiting for the results will be tough but I’m remaining hopeful.

    I also read everything I can, that provides me with something to focus on. I’d rather research and be familiar with terminology than not.

  • moderators
    moderators Posts: 8,051
    Options

    We'e so sorry you find yourself here with this worry, @emwilson! We know this can be a lot to process, and the waiting is especially hard. When do you have your biopsy scheduled! Please do keep us posted on what you learn!

    The Mods

  • needs.a.nap
    needs.a.nap Member Posts: 190
    Options

    Welcome @emwilson. We are so happy you came here and felt comfortable posting. I found this forum when I was Googling everything I could possibly find about Bi-rads 5 earlier this summer. I wasn’t thrilled with the odds given with that category but found so much helpful advice here. I’m really glad you found this forum also!


    I’m so curious if having Covid and a tetanus shot recently has any bearing on this. That would be such a relief!! It sounds like you are equipping yourself with some knowledge and starting to mentally get prepared, just in case. Better to be prepared and not need it! I felt compelled to do the same since I knew nothing about breast cancer.


    Mine was a smaller tumor than yours with no lymph node involvement - Bi-rads 5 category. I had a second spot opposite in the same breast that I was told I didn’t need to get biopsied but I got a second opinion, they gave it Bi-rads 4 and so I ended up having both biopsied. It was four weeks from feeling the lump and two weeks from the day of my mammogram/ultrasound to actually getting my biopsy results, a rather long 2 weeks! I think I came here every single night for comfort and wisdom.


    The bigger one ended up being early stage invasive ductal carcinoma (super common) and the little one ended up being DCIS (ductal carcinoma in situ, pre-cancer). Although family and friends tried urging me to be positive before I got the news, I actually had a strong feeling it probably was cancer once I was told I needed a biopsy only because I had been struggling for a couple of months prior with unusual fatigue and nothing else seemed to be causing it. All my bloodwork looked perfectly fine, thyroid was good, they even ruled out Celiac’s. I blamed other things but in the back of my mind I was wondering what in the world was going on, never imagining cancer. Maybe it wasn’t really causing the new and unusual fatigue but it seemed like a logical explanation. I had my surgery 2 weeks ago and must say, I’m feeling kind of good! Goodbye and good riddance cancer!


    In the beginning it felt like each day was in slow motion and was not real and waiting for the next appointment or test result took forever. I was in a state of weird shock, on autopilot I guess. A split brain … half acting and sounding normal but the other half constantly thinking about the lump and what next. It’s hard not to think about it!


    For what it’s worth, a mistake I made the day of my biopsy (on the advice of my now ex-primary care provider) was I took 4 ibuprofen (800mg) beforehand. Apparently that was not a good thing and I developed an immediate big hematoma bruise in the one spot. Oops! I guess I needed a printout of What to do/What not to do before getting a biopsy. I didn’t feel a thing during the biopsy but was rather tender afterwards because of the lovely bruising … icing it off and on really helped. Normally I Google everything to double check but for some reason when my ‘doctor’ said take 800mg ibuprofen I never even thought of calling the breast care center and checking or even Googling it. Go figure!

    I hope you can get your biopsy done soon and can get your answers. There are quite a few other possibilities that are not cancer that get called Bi-rads 5 as I learned in all my obsessive research so there is definitely hope! Warmest wishes and please keep us all posted if you feel like it.

  • emwilson
    emwilson Member Posts: 7
    Options

    Hi @needs.a.nap! Thank you for your thoughtful response and your tip about biopsy day. My biopsies are tomorrow morning. As ready as I am for that appointment, everytime I think about it my stomach turns upside down. Fortunately, they told me the turnaround is 3-4 days, hopefully I hear before the weekend starts.

    This whole experience has been surreal so far. Like you said, I’m on autopilot, I go from panic mode to hyper focus mode. I can’t stop reading everything I can find.

    My husband and I have three kids (19, 17, 11) and we aren’t telling them anything until we know what’s going on. Acting normal has been exhausting! My middle knows something is up, he’s a true empath and doesn’t miss an energy change.

    I’m glad I found this forum last night, I think it’s going to be a big help, it already has been.

    How are you doing now? Where are you in treatment? ❤️

  • emwilson
    emwilson Member Posts: 7
    Options

    @moderators thank you for having me, I’m already finding this to be a huge help.

    My biopsies are tomorrow morning, can’t wait for it to get here. They told me I should have results in 3-4 days, I really hope that’s true because I can’t even imagine going through another weekend not knowing.

  • moderators
    moderators Posts: 8,051
    edited August 2023
    Options

    @emwilson - It's great to hear you find our community helpful. Wishing you luck tomorrow! We understand how awful waiting is, so please vent here anytime. Don't forget that we're all here to support you, no matter what the results.

    The Mods

  • needs.a.nap
    needs.a.nap Member Posts: 190
    Options

    Good morning @emwilson. I think you are going to be amazed at the love and support you will get from your children, if this turns out to be anything, which it may end up being just a crazy scare, we hope and pray! I’m 49 years old and have a husband but no children. But our nieces and nephews (ages 15-21) and friends’ children have surprised me with their comfort and love. It truly has surprised and comforted me in a unique way. Trying to act normal is exhausting because there is nothing normal about this!!! The mental strain alone requires extra naps (or physical activity, whichever is your outlet).


    I had never had a biopsy before but had recently had a colonoscopy and plenty of dental procedures over the years so I wasn’t nervous about the procedure itself, but definitely anxious about the results. Will you be able to have someone with you? My husband was allowed in and sat by my head and I really appreciated not being alone. I would have managed ok alone but I’m trying to allow others to support me and not pretend I’m a tough “warrior” because I so am not.

    The procedure itself should be painless and if you feel anything, be sure to say something. They needed to get about 8 core samples in total from my two areas of concern and on one I felt a little tiny brief discomfort and said something and the doctor immediately gave me more numbing stuff. The initial injection of numbing stuff was fine, barely noticeable. They put me in a super compression garment thing afterwards that helped and I wore that for a few days because of my extra bruising. The second biopsy site had almost no bruising or discomfort so I can see how typically it’s no big deal and you may feel fine the next day.


    My biopsy was on a Tuesday afternoon and I was told 3-5 working days, sometimes longer for results so I was prepared to wait until Monday or Tuesday for results. They called me Thursday afternoon with my results and then she immediately called my primary care doctor to get a referral because I wanted all treatment done there (about 45 minutes away) at the university hospital.


    I can see why you want to wait before saying anything to your children. I’m sorry that must be almost impossible to not share with them. Moms really are all superwomen in my opinion!! Fiercely protecting their children always! If and when the time is right, if needed, you’ll know and they will surround you with love and compassion!


    We had decided to tell our family and friends from when I first had my mammogram and ultrasound, based on the Bi-rads 5 information. It was a bit overwhelming, all the conversations and questions that I couldn’t answer but now I see it was good for us to immediately start getting support and softening the blow of upsetting news a little. And to start adjusting our busy summer work plans to make room for medical stuff. I had to reassure everyone that I’m fine and going to live and be just fine, eventually. Everyone here has helped me realize that! I truly am learning how to take it “one day at a time”.


    Sorry I’m so long-winded! In answer to your only question for me … I had a mastectomy on one side with a tissue expander put in for future reconstruction with an implant. That was two weeks ago so I’m in the process of healing and not using my arm. I was told no radiation is needed and I’m waiting to meet with my oncologist in a couple of weeks to find out what’s next. She already discussed the most likely treatment I’ll need but they had to wait until after surgery to get all the results and they are doing an Oncotype test that will help determine if I’ll benefit from any chemo. Hopefully I won’t need that and will just begin anti-hormone treatment (probably Tamoxifen) since mine is all hormone positive and my lymph nodes were clear. Very early stage but too much to safely save the breast. At first everything seemed overwhelming and catastrophic but looking back over almost 3 months, it was actually filled to the brim with family and friends, love, some fun summer memories, definitely a lot of stress and weirdness, but overall, a lot of joy!

    P.S. I went plant shopping at an amazing nursery before and after my biopsy that same day and it helped distract me! Now we go plant-looking or shopping after each appointment just to keep happy memories linked with everything and a feeling of normalcy. We’re gardeners and plants bring me joy!

  • kaynotrealname
    kaynotrealname Member Posts: 392
    Options

    Emwilson, no you're not grasping at straws. It's uncommon for bi-rads 5 to come back benign but it does happen. Hopefully this will be the case for you especially considering you've had two immune provoking events in the last few weeks.

    I had an almost 17 year old when I was diagnosed. I do definitely recommend not saying anything until you know exactly what is going on. If worst case scenario happens, they will need to know what the plan is and that it is handled. That is a huge comfort. I was so worried about my kids (almost 15 and 17 when diagnosed) but once I explained everything they didn't miss a beat. They were a tremendous help, too. I expected them to be. I didn't want to over burden them but it was all hands on deck and they responded beautifully.

    Also, know that a breast cancer diagnosis is awful, yes. But it is also common. So common that tons of money and research has been thrown at it and the care is regimented. Most of us go in and come out fine. I had a double mastectomy, chemo, endocrine therapy, and then reconstruction and still came out fine at the end. Maybe even a little better than before. My new breasts certainly are at least. So just hold on. This is the most awful time, the waiting period, the wondering what's up. But it's moving fast for you and once you know, no matter what, you quickly find your footing, adjust, and just get on with it. Many hugs sent your way.

  • brendamejia89
    brendamejia89 Member Posts: 16
    Options

    Mine was BIRAD-5 too and it ended being a benign desmoid tumor. I waited a week for the results and it were the most anxious days of my life. I have 3 young children: 12yr, 5yr and 6mth. God was my strength during those days! Regardless of the outcome, rely on what you trust the most and don’t let your mind control you. You got this!

  • emwilson
    emwilson Member Posts: 7
    Options

    @brendamejia89 thank you for sharing your experience. I’m so anxious for c the biopsy results, it’s crazy how consuming it is.

    I’m so happy you had a benign tumor! Did they suggest removing it still? How big was it?

  • brendamejia89
    brendamejia89 Member Posts: 16
    Options

    yes I’m having surgery tomorrow

    It has a high recurrence rate but it hurts so much to have it there specially prior and during my period. And I refuse to do chemo or radiation, due to the exposure.

    2.5cm sized a month ago.

    Wishing you the best and stay positive! Regardless of what it is, you got this!

  • emwilson
    emwilson Member Posts: 7
    Options

    I will keep you close in thought tomorrow, sending you healing energy!

  • brendamejia89
    brendamejia89 Member Posts: 16
    Options

    thanks! Very kind of you. Surgery went well, waiting for final pathologist results, standard procedure.

    Please keep us posted!

  • emwilson
    emwilson Member Posts: 7
    Options

    Well, got the official news today. TNBC Stage 3b. I’m at a loss, frankly. I have been told that chemo will likely start within the next week, maybe two. Meeting with oncology Friday morning, PET scan Monday morning, MRI Wednesday night. Im so overwhelmed with everything.

  • harley07
    harley07 Member Posts: 287
    Options

    @emwilson - I’m so sorry for your diagnosis. I have no experience with TNBC or chemo but want you to know that I will be thinking of you. I’m sure other members will be along shortly to offer support. A common saying on BCO is that you don’t have to be brave, you just have to show up. Take it one step at a time and know that we will be here for you. (((Hugs))).

  • kaynotrealname
    kaynotrealname Member Posts: 392
    Options

    I'm so sorry, Em. Breast cancer sucks. I didn't have TNBC but I did have a grade 3 hormone positive tumor so needed chemo. It wasn't a good time but I will still able to live a normal life throughout it. If you have any questions or just need to vent, we're here. We all know what the first few weeks are like but know it does get better and better quickly.

  • brendamejia89
    brendamejia89 Member Posts: 16
    Options

    Hi Emwilson, you were in my thoughts and prayers lately- thanks for keeping us posted and good that you are making all of these appointments to start going and beat this FC!! You got this!! We are here if you ever need to talk.

  • moderators
    moderators Posts: 8,051
    Options

    We're so sorry to hear that, @emwilson. Hang in there! You will find plenty of support on the boards. If the plan is to begin chemotherapy within a week or two, you might want to join the group "Starting Chemo September 2023", a place for the September sisters to meet and support one another!

    You may also find this popular discussion helpful: More Tips (and a Shopping List) for Getting Through Chemo

    Hope this helps! Please know that we are thinking of you and we are all here to support you.

    Warmly,

    The Mods

  • needs.a.nap
    needs.a.nap Member Posts: 190
    Options

    Oh @emwilson. I am so, so sorry!!! It’s a huge shock to get that news. You and your family are specifically in my prayers.