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JaKris24

I have been having problems with my left breast since November 2011. It first started getting hard in one spot on the side.  It was also very sore to touch. The soreness went away but the breast continued to harden and is now completely hard all the way around.  My mother had breast cancer, went into remission, then she developed liver cancer and passed away from that.  My dad had esophageal cancer, went into remission, but it came back as lung cancer and he died from that. I finally went to my ob-gyn on 06/20/12. After doing a breast exam she said she had never felt a breast as hard as mine.  She said she had felt 1000's, if not 10,000's by now and had never encountered anything like it.  She sent me to have a mammogram today and an ultrasound.  They did the mammogram and the ultrasound and sent me back to a room to wait for the doctor to give me results.  They came back and said she wanted some more images of my left breast.  Sent me back again to wait for results and they came back and said the doctor wanted to do the ultrasound herself.  She said, she had never seen anything like it either.  I asked about capsular contractor which I have read about and she said, NO that isn't what it is. She found pockets of fluid on the outside of my implant, but said my implant appeared to be intact.  She said she isn't sure what it is so she has set me up for an MRI. Can anyone tell me what this could be?  I am going insane without some type of explanation.  It worries me because two doctors that do this all the time have said they have no idea, and haven't ever felt anything like it.  Please HELP!

dlb823

JaKris, I can't tell you what's causing the hardness, but if I was in your situation, the specialist I would want to see is a breast surgeon.  They diagnose all sorts of breast issues -- not just conditions requiring surgery.  I don't think I've ever heard of the type of hardness you're describing as a symptom of breast cancer, so unless the MRI reveals something, I don't think I'd worry too much about that at this point.  But I do think a breast surgeon will have the expertise and experience to figure out what's going on, as well as possibly advise and guide you if they feel your family history indicates high risk for bc in the future.

Breast surgeons can be found at larger teaching hospitals, such as the ones on this list: http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

Good luck, and please keep us posted!    Deanna 

JaKris24

Thank you so much for responding.  I appreciate the link as well...

mawhinney

I would definitely seek the opinion of a breast specialist and would obtain written copies 0f all my test reports. Ask to have your mammograms and mris put on a disk that you can take with you when you are getting a 2nd opinion. You want to see doctors that specialize in breast issues. You also want a radiologist that frequently reads breast imaging to read your screenings. Not all radiologists read breast images on a regular basis.

Shar1

I am so sorry you are dealing with this.  I had a questionable mammogram last week and was called back for a lateral spot compression yesterday, like you they asked for an ultrasound and then had the doctor come in and do the ultrasound himself.  I have very dense breast tissue and there is a spot near my chest wall that is difficult to see because my rib casts a shadow.  I am having a BSGI test when I get back from vacation next week.  BSGI is a molecular breast imaging test that can reveal cancers immediately.  You may want to ask your doctor if this test may be helpful in your situation.  You can look at the website  www.molecularbreastimaging.com     Good luck!

Sommer43

I have applied to trial in this in the UK, the molecular breast imaging.  So I shall be interested to know your results Shar. 

JaKris24

I wanted to update everyone that has been kind enough to reply to my question. I received a call from my doctor and she said the FDA had sent out an alert to all doctors and hospitals about a year or so ago warning of a rare type of cancer called Anaplastic Large Cell Lymphoma that is a blood cancer (not breast cancer). This cancer is rare because it usually presents itself in organs in the body. However, in 34 women in the U.S. (60 worldwide) this cancer presented in the breast of women who have textured implants. I also received a call from Dr. Brody from USC who has been researching this cancer for the last few years. He is following my case because he believes I'm at risk for this rare cancer. My symptoms 1. late onset of capsular contracture, (it's been 10 years since my implant surgery), 2. fluid (seroma) was found on the outside of the implant, 3. Swelling of the breast 4. A textured implant. I was scheduled for an MRI on July 5th, but the breast center called and scheduled me for June 29th. They felt I needed it sooner. Yesterday I went to see a breast surgeon who has had 1 patient with ALCL and he said our cases are very similar. He called the breast center to have them do an aspiration of the fluid while I was having the MRI to be sent for pathology report. However, the breast center called me and said the insurance was denying payment for my MRI. So, she put me back down for July 5th while she tries to get the MRI approved. It went to pre-certification dept. But they said it would be at least 2 days before they would have an answer. This has been going on for nearly 8 months now and I desperately need these test to be properly diagnosed. Treatment should have been started before now.

dlb823

Well, at least it sounds like you're on the right track!  And kudos to Dr. Brody for reaching out to you!  Where did he hear about your case?  

It would be wonderful if it turns out that ALCL isn't what you're dealing with, but I'm happy to know that your medical team is moving as fast as they can to figure out the problem.     Deanna 

JaKris24

Yes I believe I am. Dr. Brody contacted me because I contacted the FDA about ALCL literature and they contacted Dr. Epstein which forwarded my email to Dr. Brody.  Hopefully it will not be the case. I will know for sure once I get the pathology report. Thanks so much for all your help, you guys are wonderful. And may God bless each of you dealing with this disease.

JaKris24

Yes I believe I am. Dr. Brody contacted me because I contacted the FDA about ALCL literature and they contacted Dr. Epstein which forwarded my email to Dr. Brody.  Hopefully it will not be the case. I will know for sure once I get the pathology report. Thanks so much for all your help, you guys are wonderful. And may God bless each of you dealing with this disease.

Shar1

Sommer43--  I will keep you posted on the results of my molecular breast imaging test.  The Moderaters deleted my post -- I guess it was because I posted a website, this is the first time I have ever posted on the forum--maybe I should have read the rules better.  It can be very mentally exhausting waiting on results---I wish you luck.

Shar1

Hello all! 

I did have the BSGI/MBI test and I wanted to share my experience
so everyone would have a better idea of what this test involved.  I had the procedure at a local breast center
and it took only about 30 minutes for the test and I was there for about an
hour total.  I received an injection of a
tracer that accumulates in the cancer cells and makes them "light up" on the
computer screen.  The test was similar to
the mammogram except you are sitting down while they do the images.   They took three images of each breast and it
showed no evidence of cancer in my breasts. 
I do, however, have an issue that requires further
investigation-probably calcification on a rib or a bone spur----but not cancer.  The test was extremely easy and I would
definitely recommend it to anyone that is not comfortable with the results received
from their mammogram or ultrasound and wants to ease their mind.

Right before my test, I did have the opportunity to meet a
patient that had a cancerous lump that did not show up on her mammogram and was
found by the BSGI/MBI procedure.  She was
incredibly inspiring and really made me thankful that this test was available
to me.

Best wishes to everyone!