"rash" on boob pics- help?

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dmcmomwife
dmcmomwife Member Posts: 8

IBC rash?IBC rash pic2?I can't seem to find any pics online that look like mine. http://picasaweb.google.com/lh/photo/c6cN9kMQy5ow8zOtDtMd8LntdLbJFLZpy0xHlo0qGjA?feat=directlink  and http://picasaweb.google.com/lh/photo/tC4yY8vE5UoprRK0nzYxxrntdLbJFLZpy0xHlo0qGjA?feat=directlink

 I emailed mine to a good friend and she freaked out and told me to get to urgent care right away.  I made an appt for the next day w/my reg doc and when I suggested the slight possiblilty of IBC, they rolled their eyes at me and "ASSURED" me it wasn't anything near cancer.  "Possibly a BUGBITE started the rash" they said...or "some type of TRAUMA"...that I don't remember?  Could anybody give an opinion on this pic?  I am NOT trying to get y'all to "diagnose" me or anything.  This rash started as a tiny spot and a small bruise-like thing at LEAST 4 months ago and has slowly grown and gotten darker.  I thought maybe it was ringworm at first, but there's been no itching or flaking.  The doc said NO ringworm...  but she was sounding like she had to convince herself about whatever was coming out of her mouth.  THANKS SO MUCH- want to find the truth!!http://picasaweb.google.com/dmcmomwife/IBCHealth?authkey=Gv1sRgCPOTjfr2gLiyWw#

Comments

  • kcshreve
    kcshreve Member Posts: 1,148
    edited October 2010

    I can't comment on your photo, but would suggest you see a breast surgeon, who has indeed seen all kinds and forms of cancer.  Get it ruled out.  You'll have peace of mind with the right person taking a look. Generalists are just that: generalists.

  • lorieg
    lorieg Member Posts: 802
    edited October 2010

    IBC clinical appearances seem to come in all forms.  My enture breast became red and hard literally overnight and didn't look anything like your rash.  That being said, it is hard to get a good view in an online picture.  See a breast surgeon and ease your mind.  Know that, thank God, almost everyone who posts here with concern about IBC does NOT have IBC.  See a breast surgeon though, that's my recommendation.

    Good luck,

    Lori

  • 3boys
    3boys Member Posts: 3
    edited October 2010

    It is true that IBC clinically presents in many different forms and so it is impossible to say that I have what you have, but... 

    I was diagnosed over two years ago with stage IV IBC and have frequently visited various boards.  I have always been strengthened by others but have never chosen to become a member, until I saw your pictures because your rash looks EXACTLY how mine looked. 

    My husband is a family medicine doctor and initially had the same thoughts as your doctor, but fortunately after a week of 'watching' it he decided I needed to get in for a mammogram.  Although IBC isn't always detected on mammogram, mine was and the radiologist was familiar with IBC.  Right away she indicated that there was a strong possibility it was IBC, but also said it could have been some sort of mastitis. We got the biopsy results the next day and I immediately started chemo. 

    It makes me so sad to write this email, but knowledge is power.  A dear IBC-friend that I met in chemo went undiagnosed for almost a year because so many doctors are not familiar with IBC. Don't stop pushing until you know for sure what it is!

     God bless! 

  • dmcmomwife
    dmcmomwife Member Posts: 8
    edited October 2010

    3boys- wow- thanks.  i'm not being sarcastic, either.  :)  I went to the dr again yesterday and they "humored me" by checking to see if this was ringworm. (it isn't) and of course they INSIST that it does NOT look like any kind of cancer.  (uh...duh?  it's rare?)  they have me set up for an ultrasound.  i'm really freaked out cause an ultrasound for this type of thing is like looking at your throat to see if you have an ulcer.  i tried to push.  i even asked for a referral to a specialist by name.  she reminded me that this is most likely nothing, and i have to jump through their hoops first.  i "get to" see my pc (not even a dermitolgist!) because he's "really experienced" with "skin conditions"....  i printed out info for the dr about IBS, reminded her that everything she's telling me was told to all the others...and i asked her for at least ONE favor if she was not going to take me seriously:  "google IBC tonight and find out what it REALLY is."  she said she would.  who knows.  I wonder how many people have had to die because of the doctors that already "know" it's not "cancer". 

    by the way....are you a real person?  you're not someone trying to get me to freak out are you?  how is your cancer now?  if you were in stage 4, isn't that like....really really bad?  sorry to be blunt, i'm just in a weird frame of mind lately.  thanks...   write me back.

  • 3boys
    3boys Member Posts: 3
    edited October 2010

    Unfortunately I am a real person ;). I was 36 years old when I was diagnosed and had only been married for 4 years.  Life was so good!  Life is good now too, just a 'different' good.

    Yes, stage IV IBC is a really really bad thing.  Over the passed two years I have been jealous of just about every other type of cancer there is!

    Finding out that I have IBC rocked our world. I was given 18-24 months to live and so far I've beaten the odds and made it 30 months.  I even had a completely clean scan in September!!

    It has been a long 2 years, but we have a 'new normal' and find happiness in things that we used to take for granted. 

    Initially, I had 12 weekly taxol/herceptin treatments to get the cancer to a point that it was operable.  I opted for them to take both boobs even though only one was affected. A week later I had my thyroid taken out because I a thyroid cancer, which was completely separate from the IBC. After I had recovered enough from surgery, I then had 4 anthracycline treatments (which kicked my butt!), followed by 3 or 4 weeks of 2/day radiation.  I then did a radioactive treatment to kill the rest of the thyroid cancer and a week later started another 4 months of chemo. I had about 4 months of just maintenance therapy, but the breast cancer ended up spreading (9cm) to my ovary.  I had my ovaries and uterus removed and have been on chemo for the last 7 months. I began a maintenance program about a month ago, so I'm getting a some hair back and should probably start shaving again...

    One day at a time Sister.  One day at a time!

    God Bless! 

  • dmcmomwife
    dmcmomwife Member Posts: 8
    edited October 2010

    oh my word.  wow.  are you on FB?  i'd LOVE to get to know you more.  you seem like you've been so brave.  what else is there though?  do you have any kids?  that is probably a painfully loaded question, and i totally don't mean to stir anything up.  i hope we can connect more.  I'm Danielle, by the way.  i feel like telling my H about your msg, but i don't really think he cares.  :(  oh well.... i'll try and get seen by someone who actually knows something.  my thing is, if i'm over-reacting and it's nothing....no biggie.  if everyone is UNDER-reacting and i ....DIE?  hmmm....epic FAIL.  ;)

  • dmcmomwife
    dmcmomwife Member Posts: 8
    edited October 2010

    HEY- you don't happen to have a pic of yours before surgery do you?  also...mine hasn't itched, or had an inverted nipple or anything....not sure if it's been "hot".  think i'm over-reacting?

  • dmcmomwife
    dmcmomwife Member Posts: 8
    edited October 2010

    DERRRRRRRRRRR... i'm such a DORK.  of COURSE you have kids!!  "3 boys"??? DUH.  sorry bout that.  long night.

  • 3boys
    3boys Member Posts: 3
    edited October 2010

    I wish I had a picture, but things happened so fast and I didn't think of it at the time.  My skin started changing back to normal as soon as I started chemo.  My husband is part of a family medicine faculty and we have lectured to residence together to try to spread the word about IBC. It sure would have been nice to have a picture.

    I didn't have an inverted nipple or the orange peel looking skin.  I just had the bug bite looking rash that was perfectly symmetrical. Initially you couldn't feel a lump or anything, which is pretty typical because IBC forms in sheaths, but my tumor ended up being 9 cm x 11 cm.

    My blog is jsfight.blogspot.com  I haven't updated it since early summer, but it gives a good summary of how life has been.

    I don't want to freak you out, but please keep pushing.  Jump through whatever hoops you have to.  Find a listening ear!   

  • ibcmets
    ibcmets Member Posts: 4,286
    edited October 2010

    Danielle,  It took me 3 weeks to get into even an obgyn.  She escalated the ultrasound & mammo.  I had all the symtoms:  itchy rash, larger breast with firmer tissue, warmer than the opposite breast and orange like skin .  I still have a touch of redness after chemo but it feels the same as my opposite breast.  I will be doing a mastectomy early next year.  I hope yours is entirely something different.

     Terri

  • huntersmom
    huntersmom Member Posts: 28
    edited November 2010

    Keep pushing - 2 Drs told me was an infection -

  • dmcmomwife
    dmcmomwife Member Posts: 8
    edited August 2013

    well- here's the short version for all of you:  i've been demanding to be heard, and ultimately had to pay for a biopsy myself due to it being "unnecessary to further treat with no typical symptoms of breast cancer."  (read.....REGULAR breast cancer)  i get my biopsy "results" back today from the "specialist" who told me "it's probably not IBC, because IBC starts in the NIPPLE."  yes- you read that right.  i picked my results up at the end of last week because i didn't want to wait until today (good grief!) to find out what's up.  unfortunately, the medical terminologies are beyond me.  FORTUNATELY, my aunt is a pathologist, although admittedly only "somewhat familiar" with IBC.  She DID however state (not sure if this is true) that the IBC cells are "distinctly different" than regular BC cells.  IF that is true, it is entirely possible that my "specialist"  (notice how i keep putting him in quotes? haha)  didn't tell the pathologist to SPECIFICALLY look for ibc cells, and he not finding any if he's not looking for them, said there is no breast cancer. 

     I WAS however able to see on my report that there shows inflammed cells right under my skin, and also cells that are falling apart.  they know it's NOT a fungal infection (which my gp prescribed cream for even AFTER the skin scrape came back negative), not a bacterial infection, and not a virus.  it says that it may be some sort of autoimmune disease, but they're not entirely sure.    so that's just GREAT.  (sarcasm)

     and the gp doc that would NOT refer me originally suddenly "cares" about me and wants to know my results!  (yes the results of the biopsy he would not refer me for.  makes complete sense, right?)  they were pretty much demanding my "specialist" give them the results, and thank God (once at least) for HIPA!  the base claims that since they're my medical facility, they have the right to those results!!!  (uh...>DERRRRR>>>>>NO?  anyone could say that then!)  but the biopsy office is holding strong, telling them "no referral, no results."  HA! 

    (didn't i say this was the short version?- sorry!)  so i ticked off the base doctors so much (i think the truth is they realize they were wrong and could be in BIIIIIG trouble if they don't get me back "in the system") that the CHIEF OF MEDICINE of the base hospital wants to meet with me to "discuss my results".  i think i'm going to demand them put IN WRITING  that if the results show that something is indeed wrong- no matter WHAT IT SAYS IT IS, they MUST refer me to as MANY specialists as it takes to figure out the TRUE problem.  THEN and ONLY then, will i share my results.  hhhhhhhhhhhhhhh.....

    meanwhile, my "rash" is getting bigger and spreading out in an odd pattern, if you will.  when i lift up my breasts the same on each side (they're huge so i thought "what would they look like at a normal level?) and the nipple on the affected breast has inversion.  i have been having a lot of soreness and pain in that breast as well.  hope i'm not causing this from all my worry. 

  • dmcmomwife
    dmcmomwife Member Posts: 8
    edited August 2013
  • solasola
    solasola Member Posts: 20
    edited November 2010

    dmcmomwife, are you okay? Did you get the results? That looks like a really suspicious rash. I can see why you are pressing the issue. I hope the discussion went well.

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