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Topic: What are symptoms of ilc?

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

Posted on: Aug 14, 2008 01:40PM

ksj29 wrote:

Hi everyone I have been posting in the worried board because I have not yet had any diagnosis.  Let me first explain what is going on with me.  Almost 2 months ago I had a sharp stabbing pain in my left nipple for about two days.  At first I did not think anything of it then I noticed that my breast was about a cup bigger than my other one, this is not normal for me.  About a week later and a visit to my gp i noticed that my supraclavicular lymphnode was slightly swollen.  Went back to my gp who was concerned about the lymphnode and not the breast and said that the breast was probably swollen d/t outside source of estrogen.  I was not happy with this so I went to another gp who did not think that the breast and lymph node were related but did set me up for a mammo/us.  Had my mammo and us done, by this time I had another lymph node swell in my neck i think that it is my posterior cervical lymph node.  Nobody at the mammo us place thought anything of it.  Had us done because of dense breast tissue.  While us was being done the tech, made a comment about the thick tissue in a couple of areas.  Nothing was spotted with us.  Now I have a third lymph node swelled in my neck.  I do have an mri scheduled, just waiting for the appt to come up now.  My question is what are some of the symptoms of ilc?  When I have been doing a bse since all of this started i feel these weird cord like areas in my breast I really don't know how to expain it.  No lump or anything just harder areas.  My breast is still larger than the other and I have read alot about ibc, but I haven't been able to find as much info about this.  So any input would be great.  By the way I am 29.  Also the pain in my breast comes and goes, not a constant pain, and I have also been having a burning sensation on my skin.  It almost feels like a chaffing, but there isn't anything there.  This is also not a constant pain, it comes and goes too.  Once again any adivce would be wonderful.  Thank you in advance.

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Aug 14, 2008 06:21PM Kleenex wrote:

Hi, ksj29 -

I'm sorry to hear of your perplexing symptoms - and also a lack of definitive input from medical specialists. I was diagnosed about two months ago with ILC, and as far as "symptoms," I have a small "lump" like area that really feels like an exaggeraged section of rib. It's up in a very nothingness section of my breast. It changed size and sensitivity with my hormone cycle - probably due to where it is. It's out of the field of mammography, but when I directed the technician to it, it clearly showed up as "something" on the ultrasound - "BIRAD 4" - suspicious and in need of biopsy. The biopsy indicated that it was ILC. No lymph nodes have given me problems, I have no superficial skin pain, no breast swelling, no shooting pains. You are young, so you probably have breasts that are fairly dense - did they not see anything of interest on the mammogram or sonogram? I also had MRI's done, and my ILC did show up on that. In my early 30's (15 years ago), I did have lymph nodes swollen around my collarbone that eventually resolved without a reason being found for that. I had young children, and it was likely that I had some odd virus from them, the doctor said. So perhaps there really is no connection. My understanding is that the lymph nodes under the arm are the first affected by breast cancer or other breast issues. Also, when I was nursing, I had mastitis one time and issues from how my daughter was latching on at another that caused the kinds of things you described. So perhaps other hormonal issues could be at play in your case. It must be scary for you to wonder what this is - I hope you find some answers soon! Doesn't sound like "classic" invasive breast cancer to me - but I'm new to this stuff...

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 14, 2008 10:57PM bbmom wrote:

I don't think I've ever seen anything about symptoms of ILC. Other than the lump that I found I couldn't tell you if I had other symptoms or not. I was tired, but what women is not these days when so many of us work and take care of families not to mention teh things our children are involved in.

I can remember having a node in the superclav area swell on and off for several years. I mentioned it to my gp and he didn't think much of it. I also had the shooting pains in the breast on and off. I can't even remember how long these things happened  before my dx. From the time I started going for mammos I had a dense area that they kept checking but the cancer never showed up until  I actually felt a lump. I've read somewhere that by the time the lump can be felt the cancer has been there about 10 years.

"The Will of God will never take you where the Grace of God will not protect you." Dx 11/25/2009, ILC, Stage IV, Grade 2, 14/17 nodes, mets, ER+/PR+, HER2-
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Aug 15, 2008 07:29PM ksj29 wrote:

Thanks for your input.  I have only a little over a week now until my mri, but I am still wondering what could be wrong with me.  Kleenex the best of luck to you with all that you have ahead of you. Thank you for taking time to answer my question, really means alot.

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Aug 16, 2008 08:47AM LauraGTO wrote:

About two weeks prior to me finding the "lump" (never showed up on Mammos), I had a tugging/ pinching feeling. It only lasted for a few I didn't think much about it AND never thought it could possibly be bc. Two weeks later when I did feel the lump, a few days after that, a dimple developed (kind of like a pulling of the skin). There's no black and white with this disease...I don't want to scare you, but I think any change can be indicative of a problem...not necessarily bc. Sorry you have to wait so long for the must be going crazy in the meantime...I know I would. Hang in there...continue to be diligent...go to a third Dr. if you still aren't feeling 100% confident. Also...Get copies of EVERY test, report, etc. you've had to date, and then request copies as you continue with tests, etc. It's much easier than back tracking - in the event you ever need to refer back to them. Best wishes to you...hope your MRI is spotless.
With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Aug 16, 2008 02:08PM JanDun1 wrote:

Good for you for being so pro-active with your health. I experienced the stabbing sensation in my nipple but thought that it was hormonal changes. At my annual mammo they discovered a irregular area, no lump or thickening just visually irregular. A biopsy confirmed ILC.  

Dx 6/10/2008, ILC, 6cm+, Stage IIIA, Grade 1, 3/25 nodes, ER+/PR+, HER2-
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Aug 16, 2008 03:28PM nash wrote:

I had pain, a lump, and a shrinking breast. The pain was over my rib under the tumor, b/c the tumor was starting to grow into the muscle. Good luck with your MRI, and keep us posted.

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 16, 2008 10:05PM - edited Aug 17, 2008 08:18PM by KC1

Mine was a thickening, no other symptons. 

Dx 10/10/2006, ILC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 17, 2008 06:09PM ksj29 wrote:

Thank you all for your responses.  This last month has been so slow for me and I do find ease looking at these boards and seeing how concerned everyone on here is for one another, this really makes me feel like I am not all alone in this.  I am just glad that people have different symptoms because it makes me feel better knowing that I am not just hung up on the idea of bc since I do not present the usual symptoms of it.  I hope that when I come back it will be to tell you all good bye, and thank you again all for taking time out to answer questions for all of us not knowing.

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Aug 21, 2008 01:25PM conniehar wrote:

Mine was a thickening that I noticed.  I also had breast shrinkage which I didn't notice until my plastic surgeon mentioned it after I was diagnosed.  Then it was very apparent.  Mine did not show up on mammo or U/S, but did show on the MRI.

 Best wishes to you.

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Aug 21, 2008 08:25PM - edited Jul 6, 2010 11:10PM by Maire67

This Post was deleted by Maire67.
Dx 6/2005, ILC, Right, 5cm, Stage IIIB, metastasized to bone, 1/9 nodes, ER+/PR+, HER2+ Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Lymph node removal; Mastectomy Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab)
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Aug 23, 2008 09:42AM LauraGTO wrote:

ksj - hoping you're hanging in there...

Wanted to add one more symptom:

About a year before I found the lump (left breast) that changed my life, I had noticed that the left breast just all of a sudden kind of "died". In the past, both breasts became swollen and tender during my period, but the left one stopped responding monthly. It just remained the same (didn't swell, didn't get tender) each month, unlike the right one. I asked my GYN about this and he said it was nothing. I still get angry when I think about this. I wish he would have taken it more seriously...and I should have been more resourceful by doing research. I trusted his opinion...big mistake! Again proof that ANY changes NEED to be carefully and thoroughly investigated.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Aug 24, 2008 09:27PM melmedic06 wrote:

i had 2 palpable- good sized benign cysts removed from my left breast (over a 4 year period) that i found myself and that were both painful- with my ILC cyst i had a feeling of an electrical shock thru my nipple area up into the axillary area for almost 6 months with nausea every day around 4pm- i did not feel a lump but my gyn did- it was very clear on the mammo and ultra sound and oh so present on the mammotome even though it was only 0.9 cms- thankfully negative nodes- good luck on your journey- keep us posted and keep the faith ladies

 ILC- october 04 (left breast) 0.9 cms  lumpectomy radiation arimidex

DCIS- august 05 (right breast) found on mammotome- surgical tissue benign- lumpectomy- radiation and continue on with the arimidex

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