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AlwaysBelieve
AlwaysBelieve Member Posts: 9
edited November 2020 in Not Diagnosed But Worried

Hi,

This is my 1st post. I’ve read several posts & see there are a lot of us concerned with IBC. I’m another one.

I moved 900 miles 8 weeks ago & have several medical conditions. Because of that, it was important to me to find a PCP to establish care. It took 4 weeks to be seen & we just went over my history & discussed a few concerns. I had my DXA scan that day & was to be referred to 2 other docs & for a mammogram (I was overdue), as well as scheduled my annual physical. I ended up having to call twice before finally receiving a call to schedule my mammogram 2 weeks after my appointment.

The first opening for the mammogram is Dec 15.

I am 54, adopted, complete surgical menopause 20 years ago-no HRT. I also have diagnosed disorders of my sympathetic & autonomic nervous systems.


My concerns don’t quite fit IBC to a “T”. I’m pretty versed in medical issues so I’m not throwing all my eggs in the IBC basket. Here’s my concerns/symptoms:

Left breast: greenish bruise above areola; 2 inch red area (looks mottled almost) on inner side; noticeably larger than right. I haven’t noticed any skin thickening/puckering. My left nipple has always been inverted.

Right breast (I know, this is where the IBC gets very unlikely): Sept 27 I had a flat, red spot that had like a piece of skin on it-I took a tweezers & pulled the skin off (no pain, no bleeding, nothing). Two days later, after my granddaughters birthday, my daughter noticed a spot on my shirt. When I later got undressed, that ‘spot’ had bled through my bra & onto my shirt. A film-like scab resulted eventually but the red area is quite a bit bigger now (was marker-tip size now almost dime-size). I noticed 2 nights ago a quarter-size purple area on the other side of that breast.

Anyway, I’m sure it’s nothing but am concerned about waiting another 6 weeks for a mammogram. I called another place & have a message in to my PCP for a new referral for that place




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  • moth
    moth Member Posts: 4,800
    edited October 2020

    I would go back to the PCP and have them examine these spots. You may need referral to dermatology. IBC often doesn't show on a mammogram. You still need a mammo but I'd approach this from several angles.

    Is it possible the bruising is insect bites? I've had some which caused bruising, esp on tender skin.

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  • AlwaysBelieve
    AlwaysBelieve Member Posts: 9
    edited October 2020

    Thank you for understanding. I am in the learning curve with this PCP, her office staff & healthcare in general in this area. I'm starting out pretty dissatisfied.

    I was able to get my annual physical moved up 6 weeks. I'd like to see if I can get the mammogram, etc moved up as well to be done before my annual. That way, the derm referral will be easier. I'm currently at 2 weeks waiting for calls from neuro & rheumatology & they *just* called yesterday to schedule the mam.

    The bruise was at the edge of the areola & I never noticed a bug bite there. I have thought the red spot might have been a bite that's just not healing well.

    I think my initial thought is: if you have a pt with a concern (I showed her a pic to which she audibly groaned), why are they waiting 8 weeks (total) for a mammogram?

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  • AlwaysBelieve
    AlwaysBelieve Member Posts: 9
    edited November 2020

    A couple updates.

    Advocacy: I had a very medically challenged child whom I had zero problem speaking up for. Myself, on the other hand, is a very different story. Thanks to this community-I’m finding my voice!

    After my 1st post, I emailed my PCP. I called to follow up but there was no answer. I was ready to give up (my other health issues factored into this place). I called the place where initial mammogram was scheduled for Dec 15 & asked how the referral was written & explained a bit of my concerns. She said “we’re going to cancel this because you need a diagnostic mammogram, not a screening.” That was my thought as well, so I felt relief that it wasn’t just me. I called PCP today, amazingly got a call back quickly & was told the diagnostic order would be sent. I called a mammography center & now have an appt for next week!

    Concerns: The weird continues. In my “giving up” place, I was sitting outside for a bit. I suddenly felt this incredible searing, burning pain in my left breast, followed with a heavy, tight, engorged feeling that lasted 10-15 min solid. As I was getting ready for bed, there was a new red, thick ‘streaky’ looking area, right where the burning pain seemed to have been.

    As of today, the red area is now pink; the breast feels ‘sore’ and tender.

    I’m not sure what any of that means-if anything-I’m just grateful for this community & hoping I can cross one worry off my mind next week.

    💞

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  • AlwaysBelieve
    AlwaysBelieve Member Posts: 9
    edited November 2020

    Now that it has been over a week since the burning pain, soreness & red streak...

    Diagnostic mam was supposed to be tomorrow but the tech had a family emergency. Re-scheduled for next Wednesday.

    The red streak faded but the pink area where it once was expanded. There is still a lot of soreness, especially if I reach my arm over my breast. I have noticed the pink/reddish area sometimes fades & returns.

    I’m trying to think of all other things that could be going on while waiting for next week. Thank you all for being my sounding board!

    ~AB

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2020

    Those streaky pink things almost sound like stretch marks. Whatever they are, I hope you get answers soon.

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  • AlwaysBelieve
    AlwaysBelieve Member Posts: 9
    edited November 2020

    Thank you Alice.

    I guess streak maybe wasn’t a good descriptor. The red was more like a blob with a tail. I do have areas that look mottled, but definitely not stretch marks.

    ~AB

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  • Mountainlover
    Mountainlover Member Posts: 89
    edited November 2020

    Your description (the streaks, the blob with a tail) reminds me of when I had mastitis while breastfeeding. I read mastitis , although it's rare, can occur even in men and non-breastfeeding women. Is the area warm to the touch? I hope you have clarity soon .

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  • AlwaysBelieve
    AlwaysBelieve Member Posts: 9
    edited November 2020

    Thank you MountainLover.

    I have thought this as well, especially with the pain/discomfort I've been having. (ETA)It’s not connected (the blob & the tail), it’s not necessarily warm to the touch either.

    The diagnostic mammogram/ultrasound is next week. My biggest fear at this point, and I'm hoping someone here can offer insight, is: Since I am already experiencing pain, is the mammogram going to make the pain worse??

    ~AB

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited November 2020

    I imagine it could. You may want to call your breast care center, making sure they understand what you're experiencing and see IF they might recommend something different.... hopefully others will chime in...

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  • AlwaysBelieve
    AlwaysBelieve Member Posts: 9
    edited November 2020

    Thank you LivinLife.

    It was a bit difficult getting this properly scheduled in a timely fashion, so I’m not sure I want to rock the boat at this point.
    it is scheduled for ultrasound as well, so maybe they will do that first & be able to see enough that they won’t need the mammo...???? (🤞🏻)

    I have had a chronic pain diagnosis for 6 years, so I’m kind of used to pain, it just helps me to mentally prepare for those increases.

    I think as the time until the test dwindles down, my anxiety over these things is increasing.

    ~AB

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  • AlwaysBelieve
    AlwaysBelieve Member Posts: 9
    edited November 2020

    ***Update***

    Mammogram & ultrasound were clear. Radiologist referred to dermatology.

    Thank you for continued support! 💞

    ~AB

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited November 2020

    That has to be a relief Always....!!! So happy for you!!! Best with dermatology!

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2020

    That's good news! Thanks for letting us know. And hopefully dermatology can resolve your issues.


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