What tests should I insist on? (Possible ibc)

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LunaSunset
LunaSunset Member Posts: 2
edited May 2018 in Not Diagnosed But Worried

Almost 2 weeks ago I had a pain in my underarm area that felt sore like I was working out but in a very pinpoint location. I was wondering if it was a lymph node issue and got a little worried because my mom has leukemia. Well in a couple days the pain faded and then on Sunday 5/6/18 I woke up with my boyfriends arm over my chest and a very bad pain on my right breast. I thought maybe it was the position but the pain persisted after I got up.

When I looked in the mirror later there was a big red mark on my breast (maybe the size of a kiwi) like someone had slapped me (no one did). The pain was very bad and there felt like internal itching. I showed my bf later that night and he tried to examine to see if there were any lumps. There weren't but when he touched me i shrieked in pain. So obviously I go to Dr Google and the things that came back in the search results were either mastitis or inflammatory breast cancer.

I've been on antibiotics for a couple months for acne and so I am not sure if an infection would happen. My symptoms have changed some - still a mark but looks like a bruise but today it got a little inflamed. The bruise/redness is on the top of the breast near the nipple. At times it's a hot/stingy pain and always aches. Pain is both at the nipple and near the collarbone. The ache is not like when you get your period though. My underarm is kinda tender and I have pain in my shoulder (to be fair my shoulder bothers me a lot).

A few days later after reading everything possible about ibc, I decide I need to call the doctor. I never go to the doctor (the antibiotics I got from an online dermatologist) and haven't had a pcp in about 15 years. I call and because I'm new I had to wait til this Friday to get in and it's with the np not the dr. So I'm pretty scared. That being said, I need to find a way to insist on getting the appropriate tests. From everything I've read, mammograms won't detect it. So my question is this- what can I do to advocate for myself in this situation? What tests do I need to ask for? I am not very assertive and to be so is terrifying but I need to be 100% sure I don't have this. I’ve looked through previous forum discussions and can’t find a great answer. Any advice would be appreciated!

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  • bella2013
    bella2013 Member Posts: 489
    edited May 2018

    Luna, do you have a gynecologist? Your gyno would probably be able to diagnose exactly what is going on and set the wheels in motion for mammo, ultrasound or some other diagnostic procedure. Do you have a hospital with a breast cancer center close by? If so, ask your pcp to refer you for evaluation. Hopefully, the np you will be seeing will be a woman who will see the urgency of the situation for more evaluation.

    It’s quite possible that if you don’t have a gynecologist and called one with the urgency of possible inflammatory breast cancer they might see you right away.

    You have to advocate for yourself! If you are not comfortable with the evaluation or diagnosis push for referrals to a BC surgeon.

    Praying that it’s benign...whatever it is

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  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited May 2018

    I did not have IBC, however I have seen several other women on here that got "pushed" off or delayed for one reason or another. If you really feel it is possible....even the very slightest---don't let them push off. IBC moves fast. As Bella said, obgyn's are great at getting the ball moving.

    Depending on your age, that can be your hardest hurdle. If you are young, some doctors can push you "off" as being too young for breast cancer. Don't anyone tell you, "chances of it being cancer is so "small" don't worry about it". Cancer dosn't care about statistics...I have the "cancer you want" and yet I have continued to prove the statistics wrong.

    I am not trying to scare you, just EMPOWER you. You have a right to have solid answers, not "probebly xyz". If your NP blows you off, call another doctor like Bella mentioned a cancer center/obgyn. Honestly, I live in a place with a 2 month wait for new patiants....I got in in a week. And when I said I had a new lump, I was in the next morning.

    Peace of mind is worth its wait in gold...no mater how "unlikely" it is anything. Keep us posted! We are here with any results.

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  • bella2013
    bella2013 Member Posts: 489
    edited May 2018

    please go to the discussion group, “Worried and need advice.” Dom7mom posted on April 24 very similar symptoms to what you are having. The symptoms may not be the same but it might be worth reading.

    Keep us posted!

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  • LunaSunset
    LunaSunset Member Posts: 2
    edited May 2018

    Unfortunately I do not have a gyno, I’ve only gone to planned parenthood for birth control. I have a bit of a doctor phobia and it takes me a lot to even go to urgent care. I’m getting better but I still struggle. My appointment is in 2 days and depending on what happens, I was considering a breast specialist. I am lucky in that I actually live very close to Fox Chase in Philadelphia and from what I am reading has one of the top ibc doctors in the country if it’s worse case scenario. In general there are a lot of good hospitals near me that deal with breast cancer. I am almost 36 so not too young but I am afraid they will think I’m too young for bc. I will check out the discussion group when I get home! Thanks! I know this could be something else but I am preparing for the worst.
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