could use your guidance

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christina024
christina024 Member Posts: 11

I've been reading through all your posts trying to find some answers, but still feel lost. A couple of weeks ago I found a red swollen area on my breast I also noticed dimples which now have gotten worse, went to the doctor and he thought it might be an infection put me on antibiotics but sent me to get an ultrasound just in case, all that showed up was thickened area with lots of blood flow, I'm almost finished with my antibiotics and the redness seems better but its still swollen and very dimply like an orange peel. Should i go to a regular doctor or skip that and see a breast doctor? I'm 26 and worried they will not take me serious because of my age.

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited March 2010

    See a breast specialist.  You need/deserve to have your concerns addressed by someone with more experience than a regular doc.  Be your own advocate, don't stop until the answers you get make sense to you.

    If you have the records and/or the ultrasound films from the previous visit, take them with you.  But I definitely think you'll feel better and get better care if you see a specialist.

    Wishing you the best.

  • Connie07
    Connie07 Member Posts: 636
    edited March 2010

    Hi Christina,

    I understand your concern, about them not taking you seriously, but your symptoms sound like they do need the attention of a breast doctor. Keep in mind that most of them are surgeons and they like to cut things, but don't let that stop you from seeking medical attention.

    My daughter was 27 when she actually had a stroke!  the ER docs treated her for nausea and were going to send her home. We said,,, no... no... were not here for nausea, we're here for DIZZY.. ... OH,, then they started doing scans and redid them 3 times because they didn't believe what they were seeing.

    I would advise looking for a hospital or area that says "Breast Care". And do it tomorrow, make an appointment first thing. Request special consideration for a speedy date, like tell the appointment desk that you are in pain, and you wish to be seen right away. It's surprising how quickly they'll get you in if you ask.  

    Do come back and report what happened. you will be amazed at the support you aready have!

    Good Luck,

    Connie

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

    Christina,

    I know you are young; but I feel you need to make sure you don't have ibc or any other type of cancer.  ibc is aggressive and rare.  You need to find out ASAP before there is any metastasis.  Metastasized breast cancer is treatable but not curable.

     Good Luck and report back to us.  We are all here to help you.

    Hugs,

    Terri

  • christina024
    christina024 Member Posts: 11
    edited March 2010

    Thank you so much for your replys, I tryed to make an appt with the breast center who did my ultrasound but they told me I'd have to see my doctor first so im seeing him on monday. I've been trying to find what else could cause the orange peel skin to ease my mind and i know an abcess can but thats been ruled out through ultrasound.

  • pheosky
    pheosky Member Posts: 18
    edited April 2010

    IBC is one of the most misdiagnosed and ignored breast cancers.  The Susan Komen foundation  had no information on it until 5 to 8 or so yrs ago.  I've been reading as many posts as I can on this and am not shocked by so many drs treating it as nothing but inflamation.  Yes it is inflamation..."caused by cancer".  IBC is the "fastest" growing cancer anyone can get.  I went to bed normal in sept 2008 and woke up with my right breast the size of a watermelon and bright red.  I was in a GYNs office the next day.  He said signs of "orange peel" possible cancer.  4 days later I had a biopsy and was diagnosed with ductal stage 2, IBC stage 3b (all IBC starts at stage 3) and HER2U at 1.99.  The mamogram I had while waiting to see the surgeon showed nothing.  Plus the steriotactic biopsy missed the area and came back negative.  I fought for 8 months to recieve herceptin and had to wait until it reached 2.03.  Everything says it should start at 1.00.  But insurance cos refuse treatment until it reaches 2.00.  If you have IBC....you have a 99.999999% chance of also being HER2U positive.  I've done it all, 6 months of TAC chemo.  Matectomy, with 19 lymphs removed, when only 6 were positive, leaving me with lymphodema.  Radiation, 33 treatments and then finally proved my HER2U numbers and received  10 wks of gemzar along with herceptin.  I am still on herceptin every 3 wks, but it ends in may.  After reading about all the drs who refuse to do biopsys and keep shining the women off with what I see as lack of treatment.  It just shows how little is still known about IBC and how many health profs still have no knowledge.  Go to a GYN and DEMAND a referal to a surgeon for a biopsy.  I guess I was lucky that my IBC was still contained to the breast and just 6 nodes.  Most women don't get the proper treatment until it has spread all over the body including the brain.  Yeah IBC "loves" the brain.  I have 2 friends at oncology who it has spread to their kidneys and brains.  I do a lot of research and shook for a wk after reading the odds.  Ductal state one, 62%, stage 2, 52%.  IBC.....2%....a 98% chance of return to "some" place in the body and a 98% chance of death from it in less than 1 year.  I am going on 2 yrs out but am still sometimes scared out of my wits about it.  But life goes on no matter what so I am now in the first stage of a diep flap reconstruction.  That the lymphodema is raising pure hell with, it is now in the breast.  So now I'm researching the new proceedure of lympatic transplant that is having a 60 to 80%....100% reversal rate.  I found a study....12 women....2 had no improvemet, 6 100% improvement, 4 some improvement.  I can not move on to stage 2 of the diep flap reconstuction until the swelling is gone.  So now I have one up there and one still blowing in the wind.  I don't mean to say scary things about IBC...but it's all right here on the web.  I found news videos about it and interviews with women who had been incorrectly diagnosed, way to late in the spread of IBC.  The susan komen foundation has a news story abuot having no knowledge or information until it was mentioned to them.  In the past redness, swelling, change in shape with no tumor showing up in a mamogram was just treated as nothing more than a bug bite or some kind of possible infection.  The death rate even 5 to 6 yrs ago from IBC was almost 100% most in less than a year.  There is a very sad news story about a 16 yr old girl.  She was embarassed to ask her mother about the redness and discoloration on her breast, she was dead before she turned 17.  Although IBC used to be and is still right now considered "rare"...it no longer is.  It is no where as "rare" as was once thought.  Any discoloration with no lumps....should now be "immediate" suspect IBC.  Remember this...YOU hire the dr....he or she is YOUR employee.  Do NOT take no for an answere for a biopsy.  My oncologist now has a going on 7 yr survivor, a couple 5 yr survivors and the rest of us going on 2 or 2 plus yr survivors.  So the odds are going up from 2%, I think they are now 50% and getting better due to better treatments each day.  But you have to get a dr who knows what it is and treats it as what it is and not a bug bite or bruise.  Then do everything you can, all the chemos, the mastectomys, radiation, more chemos and reconstruction.  Then all the tests and scans, especially all the scans because like I said before IBC does not show up on a mamogram.  It saddens me to see your ages...I'm 63 and fighting like hell against this.  There is zero family history of any kind of cancer...I'm the first and got the worst.  If this had happened just 10 yrs ago..I would have been ashes for many yrs already.  Bless you all and I hope all of you not receiving the treatment you need find a dr that will do what is needed.  May we all live out new "normal" lives and yes it is a new normal for many many yrs to come. 

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