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What to ask at first appt?

ellegaunt Member Posts: 7
edited March 25 in Not Diagnosed But Worried

I need help understanding what to ask and how to advocate for myself at my appointment tomorrow.

First, my condition:

My right breast has hurt for five weeks, it’s really sore, but not hormonal sore. Totally different feeling. Sometimes it’s a low key burning sensation, sometimes a shooting pain, sometimes throbbing, but usually dull and sometimes itchy. It was mostly at the bottom but it seems to be migrating towards my underarm. My nipple is extremely tender, and it has a dull burning feeling like it’s being hollowed out by something bad. When anything touches it, it hurts, like from the depths of my soul. I feel like I can’t wear any of my bras anymore. I’ve never been uncomfortable in my bras.

I have no kids and am not pregnant— no chance. I’m 42 but not sexually active at all. No fever, no clear related symptoms. My joint have been achy but that seems unrelated.

I have a little discoloration at the bottom. The right breast is larger than the left one but not bulbous. Same shape, just bigger. I really don’t remember it being this much bigger before. I just noticed the size last week. I first read about IBC after noticing how much bigger my boob became. I was frustrated that after a full month it still hurt and finally broke down to google.

No peau d’orange, no inverted nipple, no huge red rash. I have some pain in my right armpit as of yesterday, and I think I felt a hard little lymph node that hurt like hell for a long time after I pressed it.

But who knows, I’m always freaking out about something. I’ve never looked for lymph nodes in my buggle, maybe that’s not actually what I felt. Maybe I have a pulled pectoral muscle from hunching over my laptop in my bed all the time, and it still hurts because I’m constantly rubbing it to make it not hurt. Maybe the discoloration is from rubbing it, too. I usually don’t imagine things but I’m not a doctor and I do run pretty anxious.

I mentioned this to the doctor who oversees my meds and she said after five weeks of pain I need a diagnostic mammogram. Tomorrow morning I have an appt with a nurse practitioner who reportedly is familiar with IBC at Johns Hopkins and on Friday afternoon I have a diagnostic mammogram with ultrasound. My general practitioner moved in January so I don’t currently have a doctor. I don’t know what to ask or how to make sure the doctors know what to look for. Do I need a breast MRI? Do I need a diagnostic mammogram before Friday? Am I going to lose my boobs and spend all my money and then die anyway and leave my two beautiful sweet kitty cats orphaned?

Thanks. I’m pretty scared.


  • kaynotrealname
    kaynotrealname Member Posts: 422

    I'm not sure what to tell you to advocate for because your doctor is moving pretty quick on this and you seem in good hands. I will say that I wish you comfort and a completely benign explanation for this. If you have any questions after speaking to anyone, we're here. Good luck!!

  • ellegaunt
    ellegaunt Member Posts: 7
    edited March 25

    I don’t have a doctor. I’m moving myself quickly. I was on the phone for eight hours last week to try to get help.

    I finally broke down and called the breast center at Johns Hopkins to ask if I could talk to someone to understand what I should do. It’s a two hour drive from me but I was at my wits end. They told me I could make an appointment with a nurse practitioner, which is what I did.

    If I had a good doctor (or any doctor) I wouldn’t feel so disoriented. My doctor left the practice in January. I have no doctor to turn to who knows me or is invested.

    The appointment was ok. She didn’t seem as experienced as I would have hoped but she was responsive to my self advocacy. She said if my ultrasound on Friday doesn’t show anything she’ll order a breast MRI.

    Essentially a random doctor referred me for a diagnostic mammogram. I emailed her a followup question and she told me to find a different doctor, basically (she’s crazy busy, it wasn’t rude).

    It’s really on me to self advocate that’s why I’m asking for advice here.

  • moderators
    moderators Posts: 8,278

    @ellegaunt yes, you are correct, self-advocating seems to be the name of the game. It sounds like at least you're getting some diagnostic testing, which is good. Hopefully they will then refer you to someone who will discuss the test results and can follow up with you. It sounds like it's also a good idea to just have a PCP to refer to, and who can help you to navigate things in general. Make sure not to leave Friday after the test with clear follow up with a doctor!

  • ellegaunt
    ellegaunt Member Posts: 7
    edited March 25

    I’m definitely looking for a new doctor!!! It sucks not having one.

    Thank you for your time and validation. It felt surprisingly challenging to self advocate today. I had so much doubt. My attitude has been “it’s better to be wrong and know than right and too late” but actually facing a NP today made me feel less confident about my self advocacy.

    I appreciate all of your advice.

  • anxious66
    anxious66 Member Posts: 32

    Hello. I know this was posted over a month ago but I was wondering if you ever got any answers regarding your symptoms. I am experiencing something similar and have had a clear mammogram and ultrasound as well as an armpit exam where no lumps were found but it’s now over 18 months later and my symptoms still persist. I’m terrified and need some of your advocating skills. I hope it all turned out fine for you.

  • ellegaunt
    ellegaunt Member Posts: 7
    edited May 4

    Hi @anxious66 !

    it was completely fine. I have a fibroadenoma. I guess they aren’t aupposed to make the whole boob hurt but for some reason mine did. I’m going to have a breast MRI at some point to be positive, but honestly I want to encourage you not to freak out. The internet isn’t good for researching this kind of thing. It’s either mastitis or IBC, and I knew it wasn’t mastitis. I learned a common cause of breast pain is also cysts so small they don’t appear in imaging. So please get checked out again, find a good doctor. Let them know how weird this is and that it’s important for you to find answers, but don’t freak out. I know it can be hard to get into action without panicking but you’ll be glad you stayed grounded either way.

    I have one thing to say about self advocacy:

    as women, it will almost always feel like breaking the law the self advocate. The key in my perspective is to never get angry but never take no for an answer. If something doesn’t feel thorough enough to address your needs just say “I respect your expertise and simultaneously it’s important for me to understand more than I currently do.”