A-Typical???

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rlehnig
rlehnig Member Posts: 4
edited June 2014 in IBC (Inflammatory Breast Cancer)

For the last several days (5?), I was really sore in my breasts. I thought maybe I was pms-ing (I don't keep up with my schedule), but nothing ever came.

This morning, as I was getting dressed, I noticed that my right was much larger than left, and that in fact, the right one was the only one tender. I really hadn't given much thought as to the tenderness in previous days. Mainly tried to ignore it. Upon looking in the mirror, I saw that it wasn't my imagination and my husband concurred.

I've made an appointment for the doctor tomorrow, but I'm driving myself crazy. My mother died a few years ago of ovarian cancer (was 51 when diagnosed, died at 56). Another very aggressive cancer that was ignored and diagnosed late.

All I have is the swelling and tenderness and its more tender in the area closest to my underarm. I thought it was warmer than the other, but now I'm not sure. I don't have a rash or redness, or apparent thickening of skin. I don't have a fever as one might expect with mastisis (sp?). I train horses and it does not feel great to ride.

What I'm wondering is how IBC first appears? Logically, one could assume that you don't just wake up one morning with every single symptom... that it builds over time (even a short amount of time). Being that I'm limited on symptoms, should I still worry? Has anyone else had so little symptoms?

Appreciate any insight.

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  • rlehnig
    rlehnig Member Posts: 4
    edited May 2013

    Oh, and I'm only 32.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    hi rlehnig, I'm sorry you are having pain and soreness. Its always a good idea to check out any unusual changes and you are the one who knows your body best and what is normal/not normal.



    IBC is such a non typical form of breast cancer that its hard to definitively say what happens first and in what order or how long. Over the years, I've seen photos and heard the different accounts and each seemed to be different.



    Normally, IBC grows in 'sheets' and doesn't present with a lump at the start if ever. Mine did and I ignored it since I've always had lumpy breast. Lumps would come up that were sore and tender and then go away in a matter of 6 weeks to a few months. I notice a small lump in June and wasn't really concerned until August when I noticed a small red/pink spot over the lump area. I put it down to where maybe the bra was rubbing. However, once the red spot appeared, it took off and by September, it was a bright tomato red rash like the pics of AmyLeigh on another thread here. By October, I also had developed a puss filled blister like bump about an inch in diameter and started desperately trying to get in to see a doctor. I had no gyn at the time as I was such a healthy person before bc that I NEVER went to a doctor. I finally got in to a doctor in November and by that time they started fast tracking me through the process.



    The gyne took one look at my breast and within 10 minutes had me in to see a wonderful breast surgeon who knew what it was. He put me on a week of antibiotics and then did an excisional biopsy with lab standby. I woke up with my port inserted and 2 days later was fast tracked into chemo. We didn't even wait for any types of ct scans, bone scans, etc.



    That is MY experience but ask anyone else their experience on being diagnosed and what their symptoms were and what order and you will get something different. IBC is a rare form of bc and doesn't seem to have a standard development path other than a few generalities.



    I know that doesn't help you much. The best way to know for sure is with a biopsy.

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  • rlehnig
    rlehnig Member Posts: 4
    edited May 2013

    Thank you for responding. I was putting together that ibc is just A-typical anyway, that its hard to tell... until, like you said, you have a biopsy. I even saw one that had a biopsy, with negative results, doctor not satisfied, another biopsy, and positive for ibc. We've had issues with doctors dismissing symptoms that I'm hesitant to trust them, and my mother's ovarian cancer has put me at a high risk for other reproductive cancers. Ugh.

    I wish you the best with your recovery.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    Thanks, please let us know what the doctor says. I'm a 9 year survivor of IBC and am doing very well.



    It probably wouldn't hurt to get a second or even third opinion until you are satisfied as to what is causing these changes. Be your own advocate.

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  • rlehnig
    rlehnig Member Posts: 4
    edited May 2013

    Mammo and ultrasound next week... Dr mentioned Fibrocystic disease, but since its not fluxuating with my cycle and its only in one... going to breast specialist too

    We'll see

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