Fill Out Your Profile to share more about you. Learn more...

What were your ILC symptoms before diagnosis

jessie123
jessie123 Member Posts: 134

They say ILC doesn't usually cause lumps in the breast and it doesn't usually show up on Mammo's-- so what prompted further testing in your case that led to finding Lobular C? It's scary because every year after a mammogram I feel relieved that I don't have cancer -- but now I know that's not a reality. I did have a lump that took me to the doctor. However, since they say lumps aren't usual what caused you to have additional testing.

«1

Comments

  • gracejoy
    gracejoy Member Posts: 21
    edited November 2018

    From my experience what I have learned was the best thing is to have different test besides mammogram such as ultrasound or MRI from time to time like every other year or so. Also if you have occasional pain don't ignore it check it out immediately

  • moderators
    moderators Posts: 7,886
    edited November 2018

    Hi ladies!

    It's true that invasive lobular carcinomas tend to be more difficult to see on mammograms because the cancer cells normally spread to the surrounding tissue in a line formation, not as a lump. In other cases, is a thickening or hardening area in the breast the first sign of ILC. You can visit our main site for more information on Signs and Symptoms of ILC and Tests for Diagnosing ILC.

    We hope this helps!

    The Mods

  • Runrcrb
    Runrcrb Member Posts: 202
    edited November 2018

    We found ILC after I'd found the IDC. My breast surgeon ordered an MRI after my IDC diagnosis to ensure that we only needed to focus on that one area. Unfortunately, the ILC was found in other areas of the breast so mastectomy was the decision (over lumpectomy).

  • claireinaz
    claireinaz Member Posts: 679
    edited November 2018

    I did find a lump---outer edges of my right breast, close to my armpit. I could feel it because I'm small-breasted and could feel my rib cage underneath.

    My PCP said it felt like normal breast tissue, but my friend told me no matter what, get any lump in your breast checked out. So I pushed for an ultrasound and voila, it was cancer.

    I have dense breasts, which can hide problems. I had 5 clear mammos for 5 years before I found this on my own.

  • jessie123
    jessie123 Member Posts: 134
    edited November 2018

    I have excellent retired state employee insurance and I doubt they would have paid for an MRI or double breast ultrasound unless there had been unusual symptoms. That's what is scary to me. I've read most lobular is found by the patient -- if I had known that I would never have been relieved after a mammogram because I had fibrocystic breast and found lumps all the time.

  • jessie123
    jessie123 Member Posts: 134
    edited November 2018

    Clairnaz ---- that's exactly where I found my lump -- my breast are large and I'm through menopause so my dense and fibrocystic breast are gone --- but I doubt I would ever have found the lump if I hadn't felt a quick short pain there one night which made me reach to that area of the breast. My internet couldn't even feel it because it was so deep.


  • momand2kids
    momand2kids Member Posts: 118
    edited November 2018

    Hi

    years of completely clear mammograms-- then pcp finds a lump in my physical and turns out to be 2.5 cm ILC which they say could have been there for 8-10 years. No mammogram ever picked it up. I now have an MRI every other year along with an annual mammogram. As for symptoms, there were really not any- except in the 5-6 months before dx I was really tired (unlike me) and there is a picture of me about 6 months prior in Central America and I look horrible--- and I recall really dragging myself around that summer--- it was strange-but of course now I know why!!!!

  • jessie123
    jessie123 Member Posts: 134
    edited December 2018

    So far it sounds like people are finding lumps --- which is what the literature says is uncommon. Wonder how uncommon it really is (-: I hope more people provide their experience. I'm really curious.

  • Astrid
    Astrid Member Posts: 1,033
    edited December 2018

    I could not have mammograms since dmx im 2002. 2012 I felt rock hard parts in my reconstructed right breast. Thought it might be tissue necrosis from reco in 2011. But nope

    Was dx'd through ultra sound then biopsy.

    I found my own cancer 3 times. The only extra ones were found during mastectomy or when DCIS showed up originally in right breast 2002. It has always been rock hard.



  • divinemrsm
    divinemrsm Member Posts: 5,996
    edited December 2018

    I had a big dimple in my breast. I'm not one to look at my naked body in the mirror, but weeks prior to diagnosis, I happened to be in front of the bathroom mirror after a shower and noticed there was something weird about my breasts. My life was so busy and hectic, and not focused on me—another of those women putting everyone else first—and I wasn't sure what I was seeing. My breasts are ample and the dimple puckered the underside of the breast. Well I had no tme to dwell on this. Perhaps it was huge denial. And I can’t say I ever understood dimpling to be a sign of bc.

    Then I went for my annual mammo. About ten days later, I was lying in bed and scratched an itch on my midriff. My fingers brushed against the underside of my breast and touched what felt like a gnarled mass underneath the skin. Oh, I knew immediately it was bc and turns out it was ilc.

    As I was waiting to tell dh later that morning, the mammo center called and said due to an “assymetry" on my mammo, they needed me to come in for more testing. I said, “I felt a mass in my breast today." They said, no, the mammo doesn't show a mass and I said firmly. “There IS a mass."

    So you can see my signature line what unfolded after that.

    And I don't care who says it doesn't happen, medical personnel or other, but my belief is that the pressure of the mammo pushed that mass closer to the surface and I felt it.

    An MRI determined the mass to be 6.9 X 4.3 X 1.8 cm. I’m not good at understanding centimeter measurements, so I have stored in my notes that those measurements equal 2.7 X 1.7 X .7 inches.

    Neoadjuvant chemo shrunk the mass way down tho not completely and I was able to have a lumpectomy.

    The mass or lump did not feel like a pea or a marble, as I hear some people say. I describe it as a gnarled line, sort of like what a bumpy scar that didn't heal right might feel like underneath the skin.


  • claireinaz
    claireinaz Member Posts: 679
    edited December 2018

    momand2kids,

    Isn't that funny about your look back and realizing maybe your body was trying to tell you something. I discovered my problem mid-August, and all summer long I felt like there was an umbrella of doom, so to speak, hanging over my head. I love summer--it's my favorite season--, but couldn't shake that feeling. I know why now.

    Claire in AZ

  • dtad
    dtad Member Posts: 771
    edited December 2018

    Hi everyone...my ILC was found on a preoperative MRI for IDC. Had I not had IDC, they never would have found it. The ILC was missed on both 3D mammo and ultrasound. Only picked up on the MRI. So yes, it is sneaky!

  • peregrinelady
    peregrinelady Member Posts: 416
    edited December 2018
    DivineMrsM, I agree. My lump suddenly appeared shortly after my mammogram and I also believe that the pressure squeezed it out.
  • 60notpretty
    60notpretty Member Posts: 43
    edited February 2019

    my ILC wasn’t found on mammo or biopsy. I was dx with DCIS and the ILC was found with the lumpectomy for DCIS. They now have to check the lymph nodes after I heal from the lumpectomy. I do remember feeling very sluggish this year. This was not like me at all but because there was no history of BC in my family I didn’t even consider it.

  • beach2beach
    beach2beach Member Posts: 245
    edited February 2019

    My Ilc was not found on mammo. I had a sono that showed a small area that they could not tell what it was. After biopsy found out it was cancer. I had no lump. My dr. said it probably would have been another year before it would have been felt or seen on mammo.

  • dani444
    dani444 Member Posts: 215
    edited February 2019

    it was an inverted nipple that led me to go to my doctor. That along with noticing a large indent in my breast tipped me off. I did then feel a hardened area under the skin but it was flat, not a round lump. A pathologist I work with said that was probably scar tissue I was feeling from the cancer, he also told me it had probably been growing for years.

  • veeder14
    veeder14 Member Posts: 269
    edited February 2019

    Mine was found on MRI only, I had no symptoms. I was given a yearly MRI due to being BRAC2. Couldn’t feel a lump and didn’t feel sick. Good thing I was getting MRIs

  • Kstinekd
    Kstinekd Member Posts: 12
    edited February 2019

    I had a lump at the top of my breast/chest. Ends up there was a substantial tumor across the bottom of my breast and the lump was just a pronounced area of cells that didn't qualify as a tumor, just some little guys who made themselves known, thank goodness! The lump tested positive. Then had an MRI where a hint of something showed up across the bottom of the breast which tested positive. Ended up being a very sneaky 10cm ILC tumor.

  • jessie123
    jessie123 Member Posts: 134
    edited February 2019

    Those little guys were your little angels.

  • Yogijen
    Yogijen Member Posts: 2
    edited March 2019

    My ILC was not seen on mammo but picked up because there were calcifications in the same area (thank goodness) that prompted a biopsy. It surprised us all. It was caught super early (less that 1cm).

  • moderators
    moderators Posts: 7,886
    edited March 2019

    Yogijen, glad you found us, and indeed glad the calcifications prompted a biopsy! Medicating

  • Cin17
    Cin17 Member Posts: 41
    edited March 2019

    Pain about 5 months after my 2017 3D mammogram. Went to the gynecologist, NP examined me and said she didn't feel anything so I took the vitamin E she said might help with the breast pain. Intense fatigue set in about 5 months after that which I thought came from dealing with my husband's cancer; then a week before my 2018 mammogram I noticed my breast had changed shape and that's when I knew. Had my mastectomy on 3/14/19, about 11 months after I went to my doctor for breast pain

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited March 2019

    I remember bumping into something one day and noticed that there was a painful area in my breast. When I felt it there was a "thickening," like a knot. I let it go for a couple of months, and it would throb now and again, sometimes worse than others. I had read that breast cancer does not usually cause pain, but couldn't get it out of my mind since it kept reminding me it was there. Finally went to get it checked out and my gyn said it just felt like glandular tissue to him. Didn't even bother to mention it on my mammogram order. It barely showed up on mammogram, and my BS later said he had seen similar findings get overlooked many times. This was likely true in my case, because I had gotten annual mammograms religiously for at least several years prior to this one. An MRI showed "extensive" disease of the breast, with it extending into tissue around the original tumor. ILC is very sneaky, I've come to find out, and I am thankful for the person who read my mammogram!

  • morningdove
    morningdove Member Posts: 11
    edited March 2019

    My story is I had not been getting yearly mammograms with my last mammogram being in 2011. I don't know why I just let myself each year say next year and kept putting it off. I am 61, have large dense breasts and had gone through a triple biopsy in 2011 on my left breast that turned out to be nothing. In 2013, my older sister at 58 years old was diagnosed with Breast Cancer where multiple types of cancer were found in her breasts and she had a mastectomy. Still each year would come and I would have the intention of getting a mammogram but not follow through. Maybe subconsciously I felt safe since the triple biopsy showed nothing, I'm not sure. My Primary Care Physician kept reminding me how important it was to go and this year of all the years before, I listened and went and they found early Stage 1A PILC (Pleomorphic ILC) in my right breast with my left breast fine. I had absolutely no symptoms at all. There was no lump to feel, no change in my breast and only the mammogram revealed a very small area of clustered micro calcifications that triggered a call back and a biopsy. How fortunate am I that I went this year. I believe divine intervention played a part along with my Primary Care who kept bringing it up on each visit. Please don't do what I did and go to your recommended mammograms and other screenings. Just go.

  • beaglelove
    beaglelove Member Posts: 8
    edited April 2019

    I had no symptoms just a annual Mammo and radiologist saw architectural distortion in both breast. Left breast was radial sclerosi and right had a 1.7 cm ILC mass. Lumpectomy 4-1-19 Micrometastasis in 1/2 nodes. They have sent for Oncotype test and am waiting for appt with oncologist and post op visit. I was very upset about the node as all test showed no node involvement but the same tests were right on target.No family member on either side has had breast cancer. I had 3 children and breast fed all 3 for a year. Only risk factor was dense breast. I don't understand why after years of regular mammon's it's just there suddenly. I need to stay off Google because it ages ILC sound like it will reoccur I'm so frightened


  • jenney75
    jenney75 Member Posts: 3
    edited April 2019

    Hello! Can I ask what they did once you were diagnosed with ILC? Did you have to have a mastectomy? My story isn't quite like yours, but close. I put off getting my first mammogram. I got it a couple weeks ago. Was called back that same day to schedule more imaging. Heard that was normal so didn't think anything of it. Went back for spot compression and US. After the spot compression, I was taken to see the radiologist. He cancelled the US and ordered a biopsy. I have some architectural distortion in my right breast. He said it could be scar tissue from the breast reduction I had in 2004, but it could be something else as well due to age, asymmetry and family history. I asked why the US was cancelled and he said it wouldn't tell him anything he didn't already know. Okay, like that's reassuring. My biopsy is April 19th.

    How long did it take for you to get the test results back. It's been horrible just waiting to get the biopsy, I'm sure it will be worse waiting for the actual results. I told myself if it does come back as cancer, I will take a day to freak out, but then we are back to business. Was a lumpectomy an option for you? I'm not so concerned about my boobs, they can take them. However, my OBGYN said they won't take both. If that's the case, I'd rather them not take either and just do a lumpectomy.

  • meow13
    meow13 Member Posts: 1,363
    edited April 2019

    I had no symptoms 2 tumors found on annual mammogram.

  • lyzzysmom
    lyzzysmom Member Posts: 285
    edited April 2019

    I had a history of cysts and an unrelated rash just before my annual physical. It had improved but my PCP sent me for a precautionary ultrasound and it showed up on that. Fortuitous rash!

  • Maryellen6
    Maryellen6 Member Posts: 3
    edited April 2019

    Hello...I had tiny pin prick pains in left breast,inside lower area. I did breast exam and found an area that felt like a mushy cigar would feel. My surgeon ordered mammogram and ultrasound which I had one week later. The mammogram showed nothing but ultrasound showed a strange area. I had a biopsy four days later...next day received the call that it was ILC, grade 2. I had double mastectomy, even though nothing showed in right breast, I didn't want to take chances. The path report also showed pre cancer cells in right breast. My tumor was 2.5cm. I then had reconstruction, which to date I have problems with, and eight rounds of chemo, then aromatase inhibitor for five years.

    It is so very important to be your own advocate and be involved with your treatment plan.

    Tomorrow will be six years that I received my diagnosis. Waiting to find out results takes a lot of patience.

  • Maryellen6
    Maryellen6 Member Posts: 3
    edited April 2019

    Jennie

    Your OBGYN is incorrect about them not taking both. My doctors at first said lumpectomy with chemo but I insisted on double mastectomy and they said no problem if that was my choice. Afterwards my surgeon said I made a wise choice as the right breast was precancer as well. It is mind boggling to wait for results. But everything does finally come together to make a good decision for yourself. Hang in there.