Topic: IBC after Chronic Mastitis?

Forum: Not Diagnosed But Worried — For those who are experiencing symptoms or received concerning test results, but haven't been diagnosed with breast cancer.

Posted on: Jun 8, 2017 02:47PM - edited Jun 8, 2017 02:49PM by 08labend

Posted on: Jun 8, 2017 02:47PM - edited Jun 8, 2017 02:49PM by 08labend

08labend wrote:

I'm 31 years old. I've had chronic mastitis (although I'm not pregnant or lactating) in my left breast for the past 2 years. The mastitis recurrence finally stopped in January 2017 which I credited to some new supplements I begin taking.

In mid-April I had another "flare up", although I remember thinking at the time that it just felt *different* than it used to. I began work with a new surgeon (recently moved, so starting in a new hospital network) who made a small incision to drain the infected area and put me on antibiotics. Ultrasound at that time was only a BIRADS 2.

The infection went away, the incision healed but a hardness remained under my skin and has spread into my nipple and skin thickness continues to grow around the area. The nipple was inverted and only became more deeply inverted and the areola has changed texture and now the whole area looks deformed.

Follow up ultrasound and mammogram mid-May were inconclusive so I was sent for an MRI with contrast, on 5/31. MRI results are a BIRADS 4 with moderate suspicion. Also showed "at least one" axillary lymph node being prominent. No lump seen, but diffuse periareolar enhancement, into the nipple.

We've scheduled an excissional biopsy for Monday 6/19 but the more time goes on the more I have a gut feeling this is IBC. Over the past few weeks I've been experiencing a burning/itching sensation in that breast and shooting pains straight through the core of the breast. The skin thickening and nipple changes continue to expand. I'm worried the surgeon didn't have a sense of urgency and if it is IBC, waiting 2 weeks for the biopsy may be risking my life.

As it stands, here are all of my symptoms:

  • Weight loss (20 pounds since January)
  • Burning sensation/itching
  • Shooting pain
  • Palpable hardness under skin, but not a "lump"
  • Skin thickening
  • Inverted nipple
  • Nipple/Areola skin changes
  • Worsening conditions/changes after mastitis healed

Note: the hardness and previously infected area isn't painful, as if infection or a cyst or abscess is present. That is the pain I'm used to from mastitis. It's painful because I feel a lot of PRESSURE from the swelling, and then the random shooting pain on top of it.

Has anyone with IBC had a similar experience, with previous mastitis? It's so hard to just WAIT and stay calm.

Thank you in advance for any comments!! <3

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Jun 8, 2017 04:06PM kicks wrote:

Not me! I've never had mastitis. Did not have issues going on for 2 yrs as you say you have had either.

Something is going on and has been. You definately do need to find out what it is. There are MANY possibillties - IBC being among the least likely. IBC is rare - only between 1 to 4 women out of every 100 women who actually get a DX of BC (DCIS/IDC/ILC/IBC), will be IBC.

Your Breast Surgeon undoubtably knows what IBC is and if he/she had any thought of IBC with you would have 'jumped on it' now. I had a new mammo which turned into an US and FNBs (Fine Needle Biopsies) immediately by the Radiologist.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Jun 8, 2017 04:14PM 08labend wrote:

Thank you Kicks!! Definitely trying to trust the surgeons judgement and take things one step at a time. Counting down the days until the biopsy and results for some answers and hopefully peace! Thanks again!!

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