African American Women/IBC

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djoycethomas
djoycethomas Member Posts: 10
edited June 2014 in Black Women or Men With Breast Cancer

Hello to all!

I was wondering if anyone here or if anyone here knows someone else that has dealt with inflammatory breast cancer? I have some issues of concern with me right now like itchy breast, rash, redish, pain, and "pitted" looking breast skin. My gyn put me on antibiotic right now and it seems to be helping but the rash and redness did spread to another area on my breast. I also have been scheduled tomorrow for a diagnostic mammo. After all the research I have done about IBC, I know it's rare, aggressive but more common in younger, african american women. Also a pain in the butt to diagnosis because the symptoms mimic so many other possible problems. By the time this type of cancer is caught the patient is like stage 3-4 because of the delay in diagnosis. My gyn says she doesn't think it's IBC so for now it's just mastitis to see what the meds do and outcome of my mammo. Mammograms do not pick up IBC! I really want a skin biopsy or MRI but I'm going to try it her way 1st. If my breast does not clear up by Wed (end of meds) I will go back and demand a rule out for IBC. Does that sound like to much to ask? After all it's my life and it's not like the dr's isn't getting paid. Any thoughts or words of advice are greatly appreciated in advance.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2008

    Howdy, djoyce. I don't think demanding a rule out for IBC is gtoo much to ask. You are right: it is your life and you should do all you can to protect it. Sounds like you've done your research, too...

    Hoping all goes well with your mammo and with your doc. Please keep ups posted on how things are going. There's a great section on the boards about IBC with a wonderful thread on how women were diagnosed (find it at http://community.breastcancer.org/forum/81/topic/693866). Hope it is helpful to you...

    All the best to you! You'll be in my thoughts and prayers... 

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  • Roya
    Roya Member Posts: 346
    edited November 2008

    You are doing the right thing to be pro active about this.  IBC needs to be diagnosed and caught early on.  You must insist!.  I have read that not too many docs are aware of the significance of symptoms related to IBC. 

    Here is a thread that I found on these boards:

    « Forum: IBC (Inflammatory Breast Cancer): Just diagnosed, in treatment, or finished treatment for IBC. Topic: 'To be, or not to be conerned '

    • Posted on: Nov 18, 2008 09:37 am

    djoycethomas wrote:

    Hello Ladies,

    Over a year ago I actually did a report on IBC for a class I took and created a slide show presentation. Not long after that I had persistant itching in my right breast. It started in my nipple then proceeded to the outside of my breast. I developed a rash and I ended up seeing my primary physician. With IBC fresh in my mind I told her my concern so she prescribed some cream and ordered a mammogram just in case. Mammogram came back clear and my rash cleared up with time. Six month later I developed another rash in the same breast in a different place. Same scenario.....I itched and Itched, rash, applied over the counter hydrocortisone cleared up after time. Now again, two weeks ago I had persistant itching on my left breast this time, starting with terrible itching with my nipple, and so on, now there is a nasty rash that is red/pink discolored, and what I believe to be is the texture of an orange because I have the dimples in it. I already have my annual GYN appt tomorrow so I will definately bring it to her attention and the history for the last year with this. I have pain that is off and on, no real swelling of the breast and no inverted nipple. I have not changed anything as far as detergents, skin products, or anything of that nature and I don't wear perfume. Now considering I am 32yo, an african american female, I'm obviously high risk, I am a smoker (shame on me!) and no family history of breast cancer but my maternal grandmother had cervical cancer at 32yo. I'm just wondering if I'm overreacting because I have educated myself with this type of cancer or if this is just a coincidental case of a typical breast infection. I have read so many different stories of how women have found out that they actually have IBC and not one story or symptom seems to be the same. Any questions or advice would be greatly appreciated. Thank you.

    --------------------------------------------------------

    Go there and check out some of the responses.  Study the IBC threads.  They will even lead you to other websites to read.

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  • PinkyLee
    PinkyLee Member Posts: 648
    edited November 2008

    I don't want to sound grim, but my sister was 44 when she lost her battle to IBC.  for several years she kept telling her doctor something wasn't right after her first episode of cancer and chemo.  No one listened.  when they finally did diagnosis, it was too late. 

    You must fight for you.  Only you know what is normal for you and what feels abnormal to you, usually is.  Insist on an affirmative answer to your questions.

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  • djoycethomas
    djoycethomas Member Posts: 10
    edited December 2008

    ****UPDATE****

    Hello, well I finished up the antibiotics (capsules) about a week ago and now my breast just has a big black mark on if from on side across the top to the other. I have now been on Nystatin cream for 4 days and still not much of a change. I still have the itching but the appearance is not as red. It is actually geting red in another spot closer to the middle of my chest. My mammo came out clear which is good. Now I am in the process of trying to find a dermatologist.

    I would like to know specifically from african american females what their symptoms & appearances of their breast were before their dx. I have read other stories about how it is more difficult to dx us than caucasian women, and we are a higher risk. Thank you all in advance. 

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  • Lcharmie
    Lcharmie Member Posts: 430
    edited December 2008

    Hello djoycethomas,

    I am sorry to hear that you have to deal with this and changes.

    I really do hope that your Dr. will do a biopsy of the places, to put your mind at ease.

    I had red spots in my chest--it looked like bug bites---flat, red, it did not itch--we watched it for awhile--and finally done a biopsy--it was breast cancer of the skin.  Right to this day, that is my problem--the scans show nothing else where---just in my chest--these days the places are longer and look a lil more angry---next week I will see what treatment we will do--I just finished Navelbine chemo and Tykerb chemo for the last 15 months.

    Before all of this my skin looked normal--I had a lump in my left breast--I discovered it, 5 months after a mammogram--the size of a pea.  Never felt better in my life at that time---Wheeee

    Best of luck to you---and hang in there!!!!

     Linda C.

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  • djoycethomas
    djoycethomas Member Posts: 10
    edited December 2008

    WOW!

    ILinda,

    That is scary! So none of the other common symptoms like swelling, warmth, bruise, itching, orange d'peu, or inverted or flattened nipple????? That is sooooooooooooo scary. I would of never thought just the red dots would of been cancer!

    This is why I am asking specifically african american women their symptoms because it seems our symptoms and appearance obviously may be different than caucasian women. I don't know about anyone else but I have a caucasian gyn and she claims she has seen cases of IBC already and that she doesn't think that is my problem. I'm wondering if she has ever seen it on a black woman? When I went to the office to get my mammo (which came out clear), the tech examined the appearance of my breast and thought it looked strange. She did say she has seen cases of IBC and how nasty it looks, but again I am wondering if she has only seen it on caucasian women.

    Any thoughts, concerns, or comments are greatly appreciated from all.

    Take care!

    I think on a black woman our symptom will appear different or not look as bad because we do not have fair skin. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2008

    And agree with you, DJT. If in doubt, get another opinion and ask if they've seen or are familiar with IBC in non fair-skinned women. You can't ever be too careful. I see it like this: if my doc makes a mistake, he/she may be upset, but his/her life isn't really changed that much at all. My life, on the other hand, may be completely turned upside down as a result. "Opps - sorry about that!" doesn't quite seem like enough, you know?

    Bottom line: you know your body better than anyone. If it doesn't feel right, it may not be. Better to get it checked and have the bad stuff ruled out for your own peace of mind than not and have the unthinkable blindside you later on down the road.

    I'm just sayin'... 

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  • Lcharmie
    Lcharmie Member Posts: 430
    edited December 2008

     djthomas,

    There is a long story to this--in the beginning when I first ever found my lump 1998 there were no changes in my skin or breasts.   When we found the lil red spots, it was after my masectomys  2002.   Lil red bumps came back on my chest and we watched it for awhile and then biopsied it and it had cancer cells in the lil places---this was 2003  I have had 5 occurrences it has been up here in my chest---red places--some of the meds will take them away for a while.   

    It does sound scary--but it can happen,  take care of you.

    Linda C.

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  • ebann
    ebann Member Posts: 3,026
    edited January 2009

    I have IBC and my story sounds very familar to yours. I was treated first with antibotics cause my doctor thought it was mastitis. Which the antibotic did not help me out at all. I had the same symptoms as you did as well. It is a process and spreads fast. I  was treated for that for a month. Then they did a mammogram & ultrasound. Nothing! The tech looked at it and said you need to see a breast surgeon. So the tech called my doctor and my doctor referred me to the surgeon. The day I saw her she did a biopsy. It came back as IBC, stage 3B. I have  done chemo, for 6 months, then had surgery and they removed a 12.5 tumor. I am alive though,  then they found 3 positive lymph nodes, and cancer along my chest wall. I am a triple negative and so my risk is even higher for recurrence. I did more chemo for 3 month. Now I am done with chemo and radiation. I do not have my PET scan until March to find out if I am cancer free. I am sorry I am not African American and have been told that is it is more common in your race. I will pray for you for I wish this upon nobody. I do wish you the best and would insist on going to a breast surgeon. You hired your doctor he works for you. Stand strong.

    In God's Grace; Elizabeth

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