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Topic: Is this ILC?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Aug 13, 2007 04:30PM

melevebos wrote:

I have had a distinct lump for over a year now. The lump is firm and about 1.5 - 2 cm. I was referred to surgeon who sent me for a mammo and U/S. Both were negative despite him saying that he was concerned about the feel of the lump. That was a year ago and he told me since U/S and Mammo were negative not to worry. Because I am 31 I didn't expect the mammo to be of benefit. Since that time I also now have a about a 3 cm area just below the lump that is thickened and hard, but not a "lump" per se. How do I get the doc to look into this further? I am un-insured so doctors are slim pickings. I have a family history of both breast and ovarian cancer but can not afford genetic testing for BRCA genes. HELP! I will also add that I have had chronic pain around the quadrant of the breast that the lump is in, that is non-cyclical. Again doc blows this off saying it is fibrocystic pain, but why just one breast and just one area???

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Aug 13, 2007 05:01PM wallycat wrote:

Hi and sorry you are joining us.
I think I responded to your post in a different section but will repost some of it...
Can you find another doctor? One who will take you seriously? My lobular had no lump, no mass, nothing on ultrasound, mammogram and neither my radiologist, mammo tech nor my breast surgeon could feel anything...breast mri showed a 9mm mass and they had to send me back for the breast MRI to do the biopsy as the ultrasound still could not find the mass that the MRI located.
I had no thickening, no pain.....just a gut feel.
I hope yours is nothing but I would not sit and wait.
Find someone who will take you seriously and have a biopsy. It is really the only way to know.

Best to you.
Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Aug 13, 2007 05:14PM nash wrote:

I just responded to you again over on the Not Diagnosed board, but I'll continue over here.

Taking the uninsured part into account, it's going to be harder to switch surgeons, as I advised in my last post over on the other thread. But unfortunately this guy is not giving your issue sufficient attention. You need an MRI, and then if there's a suspicious area on that, you need a core biopsy. It probably wouldn't hurt to biopsy the lump and thickening even if nothing shows on MRI just to be sure.

I had both a lump and a thickening, and pain. Your's is hopefully nothing, but from what you're describing you absolutely have to get yourself checked out thoroughly. It drives me crazy when treatment decisions are driven by economics. I wish I had some advice on how to get around the insurance issue. Maybe if you post a separate thread on how to get good care w/o insurance, some ladies who are in that boat will have some good advice.
Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Aug 13, 2007 09:03PM rue2u wrote:


I would ask for a copy of the ultrasound and mammogram report. What do they mean by negative? My mammograms were considered "negative" because of the characteristics of the lumps that showed up. The radiologists thought I had cysts but the ultrasound did show that something was suspicious. Even the surgeon I was referred to suggested that I waited 6 months and have tests again but I asked for a biopsy which resulted in my infiltrating lobular diagnosis. Turns out it was multi-focal (several small areas in the breast). Hope you can get someone to help you but you can insist on getting a copy of the report to see what it says.

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Aug 14, 2007 03:50AM melevebos wrote:

No cysts, masses or calcifications were identified. However the mammogram did note that the tissue in the upper outer quadrant of the left breast showed more "density" than the right. This is the area of concern. I have read that lobular carcinoma an appear on mammo as increased density especially in younger women, but again doctor says that the findings on mammo are not a concern.

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Aug 14, 2007 04:48AM conniehar wrote:

Yes, you need to get this checked out. My lobular tumor presented as a thickening. It was not seen on mammo or US. The radiologist felt it and recommended a biopsy. Prior to biopsy, the surgeon sent me for an MRI which finally showed the mass. It was 10 cm and mammo and US could not see it!!!

I thought I read somewhere on another post about required care for those unisured, but it may have just been a right to a mammogram. I agree that you should post another post about being unisured to catch someone's eye in that situation.

Good luck and let us know how you are doing!
Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Aug 15, 2007 03:25AM Valsul wrote:

my tumour presented just like yours. including the pain, which everyone assured me ws a good sign.

I don't want to alarm you, just that I resolved to get the message across that you insist on proper care. get it biopsied as soon as you can. Go back and insist on the proper care, insurance or not.

Big hug
Don't just smell the roses - become the rose

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