How were you diagnosed?

Goingforgold
Goingforgold Member Posts: 14

Wondering how you were diagnosed and what your symptoms were??

I'm sorry if this is inappropriate by any means, but I just HAVE to hear from people who were diagnosed with lobular cancers. I am quite sure something is going on and have not been satisfied with my doctors dismissals as I just have this feeling about it that it's something more.

I got this weird let down sensation frequently in my right breast as if I were still nursing and some random acheyness which led me to discover what my drs have deemed a swollen breast lobule, it runs over an inch along my breast and feels thick and rope like with some tiny hard spots closer to the nipple. It only sporadically aches or tingles. My drs did a prolactin test and It was negative, i had a mammogram and an ultrasound which only showed very dense tissue. I got an appt with a surgeon specializing in breasts but he was immediately very dismissive, he walked in saying my tests were fine and I'm very young to worry and "what the hell" he would do an exam anyway, which he did and I am glad for that but he said it's totally normal and nothing to worry about because it's not a firm hard lump and it shifts when I lay back. I just don't understand how something like this can come of nowhere and persist for 2 months. I know statistics say I won't have breast cancer, I'm 28 with no family history but I have read that lobular cancers can be quite hard to detect and I just can't shake this feeling and need for an answer.

Comments

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    GoingForGold - I don't have ILC, but I do know that information on "dr google" can be outdated and just plain incorrect. You have had several doctors tell you that you are OK. I'm not sure if any of them would order a PET/CT at this point, but you can push if you don't accept any of their diagnosis. I know we all understand you're worried.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    BTW - it's probably a good idea to stick with the other threads you've already started so people who might answer can see the whole back story. At this point the 'benign breast condition' thread is reasonable.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2017

    To answer your question-- a lump was found in my regular physical by my doc... led to ultrasound, extra mammograms and ultimately a biopsy---- sounds like you are concerned--- while it is unusual to have bc at a younger age, it is not impossible so follow up in any way you think you need to.

    Good luck


  • lrwells50
    lrwells50 Member Posts: 254
    edited June 2017

    Mine was diagnosed as IDC until the surgery labs, at which time it was changed to ILC with IDC features

  • carmstr835
    carmstr835 Member Posts: 388
    edited June 2017

    Mine was diagnosed with a regular mammogram, clinical exam, and ultra sound as cancer. The biopsy confirmed IDC. They did do an MRI and found more prior to surgery.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited June 2017

    Mine found by me: small, hard lump. I directed the ultrasound tech to the spot. Mammo completely missed it. I actually think, as I've stated before on other threads, that the US would have missed too had I not pointed it out. Very small but dense breasts. I had been having yearly diagnostic mammos since the age of 39 due to my mom's history. Though we're clean on genetics. She has ILC, too, and I feel they'll find the connector (lots of prostate in our family -- on her side) someday.

    Good luck to you.

  • dtad
    dtad Member Posts: 2,323
    edited June 2017

    Mine was diagnosed on a preoperative MRI for IDC. The ILC was missed on both the mammo and u//s. MRI is the best screening tool for ILC. Good luck to all...

  • vixxyn
    vixxyn Member Posts: 45
    edited June 2017

    Mine was found when I went for my routine mammogram in April. They used the new 3D mammogram technology this time, which hadn't been done on me before, so maybe that's what made the difference. After the mammogram they sent me for ultrasound, them biopsy. So far I've had 4 mammograms, 4 ultrasounds, 2 MRIs and 2 biopsies, and had surgery 1 week ago. I go for my post surgical follow up next week, then radiation.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2017

    MRI picked up a small spot but when I had surgery every bit of tissue she took had lobular that didn't show up on anything. Needless to say that's why I'm stage IV n

  • vixxyn
    vixxyn Member Posts: 45
    edited July 2017

    Had a follow-up visit with my surgeon yesterday. The pathology report came back stage T1b, margins clear, lymph node negative 0/1. Best possible news! I have my first appointment with my new MO next week, and with my new RO on Aug 3. Whew! It's been ... uh ... interesting so far.

  • mombuns
    mombuns Member Posts: 5
    edited August 2017

    I had Metaplastic breast cancer in left breast in 2014. Had mastectomy, chemo and rads. Two years later I had leakage from right nipple. I thought it was a papilloma because I had a couple of those in other one along with MpBC. Had mammogram and ultrasound and nothing showed up. They assumed it was a papilloma and gave me a ductogram which showed it. Surgeon wanted to do a biopsy because he wanted to be sure there was no cancer lurking. Radiologist nixed that and they set me up for surgery. It turned out there was ILC in there hiding behind the papilloma. It was stage 1 and I didn't need any chemo or rads. They put me on anastrozole for 5 years. This drug makes chemo look like a piece of cake. I am going through hell on it. I can barely walk among other things. I am seeing my Onco in a couple of weeks and am going to tell her that I cannot stay on it, and I hope she has something else in her bag of goodies. Maybe someone else can describe her experience with this drug.

  • Siciliana
    Siciliana Member Posts: 127
    edited August 2017

    My ILC was diagnosed by mammogram and ultrasound. I hadn't had a mammogram in 5 years (crazy, huh?) and went to a mobile mammo van, then got the dreaded call back and had a diagnostic mammogram and ultrasound where they confirmed the "suspicious" mass. They did a core biopsy that same day. I did not feel the lump, although I was not exactly the poster girl for self breast exams. Hit or miss, for sure.

  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited August 2017

    no symptoms, really. Went in for a diagnostic mammo bc I had flipped my implant by doing too many pull ups. Lo and behold, microcalcufications were found. Ultrasound saw them too. Biopsy confirmed DCIS. Decided on BMX with reconstruction. I thank God for making my implant flip.Otherwise, I wouldn't have had the mammo. Only 37.

  • DawnP64
    DawnP64 Member Posts: 25
    edited August 2017

    Mine was found in the pathology of my 2 IDC tumors that were removed in my lumpectomy. It was in what the surgeon thought was the margin of one of the tumors. It was a shock because I had been under ultrasound twice and had an MRI as well as my 3-D mammo & it was not detected. Several of the doctors have told me lobulars are tricky and the density of my tissue didn't help.

  • robinblessed54
    robinblessed54 Member Posts: 578
    edited August 2017

    mombuns, sent you a PM on this, Robin


  • robinblessed54
    robinblessed54 Member Posts: 578
    edited August 2017

    ILC is tricky!! Likes to hide. I found my lump, didn't show on mammo. Had US and core biopsy one week later. I had a mix of IDC/ILC. ER+95%!

  • Mimi78
    Mimi78 Member Posts: 8
    edited August 2017

    My scans pickep up very small sized ILC but after mastectomy last week, it turned out to be a huge portion. Going for axillary clearance in 2 weeks.

  • beach2beach
    beach2beach Member Posts: 996
    edited August 2017

    Was going to have surgery to remove a radial scar in left breast after a mammo(clear) sono showed 2 spots on left one on right. Left were benign with radial scar.. My surgeon sent all my films/sono to her team. Her radiologist saw the spot on my sono of my right breast that my radiologist did not note on report. My radiologist(found out later on) thought it was just my breast tissue. Surgeon's radiologist did biopsy wound up being cancer. Biopsy intiially said IDC but after mastectomy was told it was ILC 7mm. So by a second set of eyes looking at my sono, my cancer was found. Couldn't be felt or seen on mammo . Surgeon said probably would have been another 6mths to year before it may have been felt or seen on mammo.

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