We are 196,325 members in 81 forums discussing 144,696 topics.

Help with Abbreviations

All TopicsForum: IBC (Inflammatory Breast Cancer) → Topic: IBC DIAGNOSED, LETS SHARE OUR STORIES!

Topic: IBC DIAGNOSED, LETS SHARE OUR STORIES!

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Oct 16, 2007 04:31AM - edited Mar 29, 2008 12:30AM by mrs_X_Sunneedazee

mrs_X_Sunneedazee wrote:

I would love it if all who have been diagnosed with Inflammatory breast cancer would share their story.  Because this form of breast cancer is rare, please post your process of being diagnosed.  Also tell us when you were diagnosed, what treatments you have had, and how you are currently doing. 

I know when I have read about the prognosis of this form of BC I felt like I would be dead within months. I think it would be most helpful for others to be able to read about actual womens experiences....

So here is my story....

 I was diagnosed back in May 2007, when I was 28 years old.  I had been having problems with my breast for almost a year.  I was nursing a baby, so the dr kept on attributing my symptoms to that.  At first my breast was horribly itchy, no matter what I did it itched and drove me crazy.  Then, one day it got really painful and swelled, bright red skin.  Doc said mastitis.  Gave antibiotics.  Got worse.  Ended up in ER with IV antibiotics.  Bright fiery red color went away.  Breast was still enlarged and pinkish purplish bruised looking.  Breast continued to grow and grow.  Nipple inverted, orange peel skin, stabbing pain into my armpit.  Dr said scar tissue blocking the milk ducts is causing the swelling and discoloration.  Skin steadilly gets thicker and covers a bigger area.  Read about IBC on THIS website, said OMG that is what I have.  Demanded an appt. with dr.  Saw him next day, insisted it was scar tissue from milk ducts.  Another month goes by, I don't feel right.  See DR again,  Demand a biopsy.  Refers me to a surgeon.  Have an ultrasound, only see cysts.  Surgeon one wants to aspirate the cysts.  See 2nd surgeon.  He looks extrememly worried.  He checked my lymph nodes in my armpit. Not a good sign.  Gets me in for a mammo the next day.  Mammo takes almost an hour, taking pic after pic after pic.  Then they want to do an ultrasound.....  Radiologist comes in...  This is really serious.  WHAM, we believe you have inflammatory Breast cancer a rare agressive form of cancer...  HMmmmmm  oh really????  Biopsys next day, as well as bone scan...  (I had been going to 4 different drs for horrible pain in my back and hip as well.....  cancer was found there also).  Mets also to a spot in my lung.

Started Herceptin the following Tuesday with Zometa.  Port placed thursday.  More chemo on Monday Taxol.  Have been doing weekly Taxol and Herceptin since.   I have one more treatment, and then I will be moving on to my MRM next week.  Once that heals, I will have radiaiton, and then be on weekly herceptin, um, forever.  Cause that is how long I am gonna live!

Please, please post and tell us about your diagnosis and treatments.  I would love to connect with others who are battling the same monster that I am.   

Every day is a gift...........www.amberchase.weebly.com Dx 5/10/2007, IBC, 6cm+, Stage IV, Grade 2, 3/5 nodes, mets, ER+/PR+, HER2+
Log in to post a reply

Page 15 of 15 (424 results)

Posts 421 - 424 (424 total)

Log in to post a reply

Jul 10, 2017 04:58AM Traveltext wrote:

So, Triplep, the concern is IBC returning to the breast that had a mx and rads, but without traditional IBC symptoms? Perhaps they are more worried about a bc recurrance than an IBC recurrance. Best get it checked, I'd say.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

Log in to post a reply

Aug 2, 2017 05:35PM NYClady wrote:

hello -my mom has Stage IV triple negative inflamatory breast cancer at age 82. She had a masectomy and removal of about 15 lymph nodes. Last November, we were told that she only had a "few months" left and nothing could be done. She is still hanging in there, but going downhill fast. Her skin is broken out everywhere and she has a nurse come every other day to put bandages on them. But, she is very uncomfortable. She sprays some over the counter itching spray on the raw areas for relief. Does anyone have any ideas on other medications to use to help the uncomfortableness? She has percasat for when she is in pain. But the doctors here in PA haven't seen this form of cancer very much so they aren't very helpful. any advise?

NYClady

Log in to post a reply

Aug 2, 2017 05:47PM sbelizabeth wrote:

NYClady, sorry to hear of your mom's struggles. Has she been enrolled in hospice?

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Log in to post a reply

Aug 2, 2017 06:14PM Traveltext wrote:

NYClady, Where else has her cancer spread to? Is she on a cancer medication now?

You may get more advice here, but you could also join this IBC Facebook support group: https://www.facebook.com/groups/inflammatorybreast... since there are hundreds of people there offering support.

This is a hard time and I hope your mom can heal and get adequate pain relief.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

Page 15 of 15 (424 results)