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Whats your ILC story?

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  • debi2009
    debi2009 Member Posts: 3
    edited January 2011
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    I am a new member after reading EVERYTHING I could find on ILC since dec 2009.  I have been a medical asst for 25 years, had my mamos every year, did breast exams every month(my mother and grandmother died of breast cancer, I knew I'd get it sooner or later, I just wanted to catch it at it's earliest I was never really scared of breast cancer, we dont have to die of it with all the medical advances.  In Aug. 2006 I had discharge from my L nipple went to Family Practice Dr. (a female) had mamo and ultra sound both neg, was given antibiotics,  I thought oh no this is not right.  Went to my OB/GYN (female), she reviewed all my tests and agreed with first Dr., just an infection.  Well the discharge did go away and all was fine but I swear I think that  was the first sign of cancer.  From 2006 to 2009 I had 4 mamos even paid for one extra in July 2009, then in Dec 2009 the L nipple inverted, finally I was sent to a surgeon.  It was ILC,stagellb no nodes involved.  After a year of treatment I am just now ready to talk about this/  I was so upset,mad, and depressed.  Now we know how sneaky Lob Cancer is.   We are not alone  My Daughter will NEVER go thru this.

  • debi2009
    debi2009 Member Posts: 3
    edited January 2011
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    how are you now,  these dates are pretty old

  • Gitane
    Gitane Member Posts: 58
    edited January 2011
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    Welcome debi2009,  Sorry you have ILC!  Thanks for sharing your story.  Yes, it is sneeky!

  • mdoak
    mdoak Member Posts: 14
    edited January 2011
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    Sherri bumped this thread for me -- having odd symptoms (string of small lumps, like beads on a string, subtle pulling of breast to the side, small dent on other side, slight thickening) but a negative mammo, ultrasound, and biopsy of a different area of concern on December 3rd. Thanks for sharing your stories--going back on Monday, even though I feel shy about it, and am going to fight for an MRI. Best to ALL of you. -- Melissa

  • Gitane
    Gitane Member Posts: 58
    edited January 2011
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    Melissa,  Get that MRI!!!  Let us know what they say.  You need answers. So sorry to hear this is happening to you.  G.

  • DMD
    DMD Member Posts: 30
    edited January 2011
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    I am new to this site and am glad to find people with a similar cancer...I haven't found anyone to talk with lobular cancer specifically.  I was diagnosed in July of 2010...had BMX (with expanders) in August...chemo (cytoxan & taxotere) Sept-Nov...expanders swapped for implants Dec 21st.  It feels like a long road so far and a ways to go yet. I feel lucky to have found the cancer when I did, during a self exam. I am upset that women are not more educated on what to look for...only really taught to look for a "lump"...which I did not have. Also, upset that I began taking hormones 6 month earlier for peri-menopause which unfortunately ended up fueling this cancer.  Things have been going pretty well so far...I have my ups and downs which is to be expected I guess. I would be happy to talk with anyone who is newly diagnosed about this sneaky cancer as well as anyone who has been down this road before. Hugs to all, Dawn

  • MissTW
    MissTW Member Posts: 16
    edited January 2011
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    I had my first mammogram in 2001, was told to have a yearly mammo due to a 3mm calcification spot. Silly me never had a follow-up mammo until 2010. That original 3mm calcification was LCIS that later turned into ILC.

    The reason why I decided to have a mammogram is because I am a stage 3 colon cancer survivor as of 2007. During a gynecological visit my Doctor asked when my last mammo was and when I told him he encouraged me to have a mammogram asap. Thank God I decided to have a mammogram the next week.

     A few years prior I noticed when I lifted my arms I saw some  dimpling in the exact area where my cancer was found. Doctor said that is an indication of breast cancer.

    Starting Tamoxifen any day now. Good luck to all!

  • Gitane
    Gitane Member Posts: 58
    edited January 2011
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    Hi DMD (Dawn),  You are so far along in your treatment and surgeries, you are really quite "experienced" compared to most newbies here.  I was diagnosed over 5 years ago.  As far as I know I'm O.K. so far.  I'm taking Femara and Zometa still.  I had been taking HRT before diagnosis, also.  I'm still quietly furious about that, but I'm trying to let it go because there's no going back.  I know what you mean about no lump.  My gyno had examined me 4 weeks before my diagnosis and felt nothing.  Neither did I on self exams.  With the amount of bc there, you'd think.... but nothing on mammo either.  It sure showed up on MRI, though.  I'm glad you found us, and hope you come back often.  G.

  • DMD
    DMD Member Posts: 30
    edited January 2011
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    Thanks for the welcome Gitane! You are really the experienced one...your 5 years out?? Congratulations...I hope your doing well! I am already looking forward to the day I can say it has been 5 years. I actually found this site months ago and was using it as a very helpful resource but was not ready to talk with people about things. I think I have been really positive and strong for the past 5 months but now am feeling down, sorta sad, and my body feels so tired and sore all over. Not sure why since this is the time I think I should be feeling the best...2 months out of chemo and 1 month since my implant surgery???!!!! What gives...did anyone else experience this?? Thanks, Dawn

  • Gitane
    Gitane Member Posts: 58
    edited January 2011
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    Dawn,  Believe me when I say there is nothing you can plan on with this.  My lowest point of all was about a year after starting Femara.  You would think the timeline would be straight, but it's all over the place.  Our bodies sure take a beating with this and, of course, the thoughts and emotions, too.  Today I go in for bloodwork, preceeding my 6 month check up.  The anxiety started building two days ago.  Go figure.  Thanks for writing back.  Hugs. G.

  • divinemrsm
    divinemrsm Member Posts: 6,157
    edited January 2011
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    I just started my journey this month. I toke the time read all these posts on this ILC topic, and it's been very helpful, so thanks to everyone for sharing their stories.  At some point, I will be sharing mine.

  • crazy4carrots
    crazy4carrots Member Posts: 624
    edited January 2011
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    MrsM;  Scroll down the Forum titles and you'll find one called Canadian Survivors, in case you want to meet some Cdn sisters online.  I'm one of them!  Good wishes!

    Linda

  • deprazy
    deprazy Member Posts: 4
    edited January 2011
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    Just found this thread....in July, 2009, I found a weird thick spot in my left breast....I thought, hmmm this is weird, but it wasn't a lump, and there was no BC in my family, and my father-in-law was in hospice care, and I was busy, so I ignored it.....In late August, I went for my annual check up and mammo - the NP felt nothing and I didn't mention it, because I had done such a good job of ignoring it.  A couple of weeks later, I got a phone call saying that there had been "some changes" in my mammo from the previous year and I needed to have a diagnostic mammo.  I went for the diagnostic and had an US the same day.  I was scheduled for a core needle biopsy the following Wednesday, and at 12:15 pm on Friday, September 25, 2009, I got the call - invasive lobular cancer.  By 3pm that afternoon, my dh and I were in the surgeon's office.  The next couple of weeks are still a blur to me - an MRI, a biopsy on the other breast (benign), a lumpectomy with 3 sentinal nodes clear - then the phone call a few days later that final pathology showed one node positive - so back to the hospital for axiallary disection and port placement.  I started chemo in November - dose dense 4 A/C followed by 4 T.  Got a month off to "recover" then started radiation in late March (30 + 6 boosts).  After about a week of rads, I developed an inflammatory reaction resulting in pericarditis (VERY rare SE), which allowed me to spend my spring break in the hospital!  Finished rads on 5/19 with no further complications.  Began Arimedex in July, 2010 - 6 months down, 54 months to go!  In September, after a follow-up mammo, a new area of microcalcifications was found in my right breast - that led to another biopsy, but fortunately, that was benign.  I feel like I a living my life on the edge of my seat.....just waiting.  That's my story - it makes me tired just thinking about it.,

  • Christine5
    Christine5 Member Posts: 43
    edited January 2011
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    I'm almost a month post BMX after being diagnoses with ILC. I am happy to have found this thread as well, This is one scary diagnosis. I am anxious to read all of your posts and then will try to write my story. I wish you peace.

  • JeanH
    JeanH Member Posts: 132
    edited January 2011
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    Melissa. I hope you were able to get that MRI, my ILC was found during a routine mammogram/sonogram combination. I have been getting both for the last few years since my breasts were "dense". The lump was found on a friday, mondaywas the biopsy and by tuesday i had the diagnoses, ILC withone positive node. The first 2 weeks were a whirlwind, lump biopsy, bs, the MRI and PET scan. I schedule a visit with another bs and then had lumpectomy on 12/1. I start chemo next week.



    My BS believes I actually had the lump the year before whenI had my mammogram but due to the sneakiness of ILC and it not feeling like a lump it was not detected, even when they went back to recheck after they found it. The MRI is supposed to be better at detecting and as part of the followup I will be alternating MRI and Mammograms every 6 months. My MRI over estimated the size of the lump but that was probably due to internal bruising after the biopsy.



    I never heard of ILC before my diagnoses, never thought the word subtle and cancer would go togethre but that is the description I kept getting. Your cancer is very subtle.



    Good luck to all it is a crazy journey we are all on.



    Jean



  • mdoak
    mdoak Member Posts: 14
    edited January 2011
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    Thanks Jean, and everyone. I'm still waiting for my appointment with a breast surgeon, who is supposed to be very, very good. Unfortunately it is a 3-hour drive, my appointment is at 8am on Thursday, and we're supposed to get 1-2 feet of snow on Wednesday. I'm guessing I'll have to reschedule. I realized last night I actually have a dimple on the other breast, on the side. I thought maybe it was stretch marks or something, but I went online and found some pictures of dimpling and that's what mine is. It never seems to end, eh? I'll let you know how it goes.

    Melissa

  • JeanH
    JeanH Member Posts: 132
    edited January 2011
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    Melissa ,



    Hang in there, the weather is really placing havoc with us this year. I am hoping I can get to chemo Thursday. Snow due here Tuesday or Wednesday.



    Jean

  • divinemrsm
    divinemrsm Member Posts: 6,157
    edited January 2011
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    mdoak, I'm having the same problems with the weather as you...scheduled for an MRI biopsy tomorrow at 7 am.....hospital is an hour away and an ice storm is predicted.....had other weather-related problems all month long as I go back and for to the hospital where I'm being treated....however, it's a good hospital, so worth the hassle...God bless...

  • JeanH
    JeanH Member Posts: 132
    edited February 2011
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    Good luck to all of us tomorrow hope we can all get where we need to with this weather...I thought getting into NYC with the holiday traffic was bad but this is crazier!



    Jean

  • momand2kids
    momand2kids Member Posts: 118
    edited February 2011
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    Welcome all.... nice to "meet" you.... I wish all of you who are having extra testing or starting treatment the very best.... I can tell you that things do go back to normal at some point-- just right now it is all so very front and center in your life-- as it should be.  But it won't always be that way..... there is life on the other side!!!!!

     Hope the weather does not cause too too many delays for you.

  • JeanH
    JeanH Member Posts: 132
    edited February 2011
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    Hope the weather cooperated with everyone, I made it to and through Chemo #1. traffic horrendous fixing pothole in 2/3 lanes on every route we tried...1 1/2 hours for a 20 minute ride but luckily we were trained well in December to expect anything when traffic in NY is involved and usually allow at least that much time.



    Hope everyone else was sucessful in getting to appointments.



    Jean

  • Zenbreasts
    Zenbreasts Member Posts: 2
    edited February 2011
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    Anyone else out there find their ILC through pathology of a breast reduction?

  • Robyn_S
    Robyn_S Member Posts: 25
    edited March 2011
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    It was interesting to read the stories here they all sound so familiar and today I get to add mine. I found a lump on the 10th Feb 2011 and didn't put off going to a strange doctor straight away. Funny about that as I am so busy -  but when I felt a large flat thickening while getting ready for bed I noted that and felt it again in the morning to see if it was still there. It was. About 1 oclock in my right breast not tender just there.Unlike me I didnt dither about it.  I went after work to a walk in clinic and flashed the GP who I had never met before...his clinical notes said " feels like a lump'...duh! At least I got a referral for an US which I rang for next morning. No appts available til Friday - 2 days away. I must have sounded anxious as the receptionist slotted me in between patients with barely a wait! I saw the black mass on the US, the tech got the radiologist to check in another room and told me the GP would have the report the next day- as though it would be a secret between them!. I went the next day and the GP gave me the news and handed me the report stating that it was a Category 5  -hypoechoic, indistinct margins, large with dense shadowing. A day earlier I had already found the twin to that image I had seen  on the US screen on doctor google so I was not surprised (I am a post grad medical researcher so know how and what to look for to learn about things in a hurry) . The GP wrote a referral to some gyno..not helpful. I was left following the advice of the receptionist who told me she would attend the Royal Womens Hospital emergency if she had a 2.5cm highly suspicious  mass in her breast.

    Good advice- I did and saw a BS within an hour of attending the ER. I had a core biopsy, mammogram and US within 3 hours. Unfortunately the core biopsy did not provide enough sample- a clue was the lump was extremely dense like gristle -very hard to pass the needle in. - Ive been looking for that clue all week!  A FNA did not get enough cells either the few breast cells in it looked normal. The BS was a bit calmer by now- I think that he really expected to find a syringe full of malignant cells! He was asking if the lump felt smaller before the ExBio as though it might be in our imaginations. I think we both learned something this week!

     An excisional biopsy was done last week - 2nd March 2011. The results came in today. Lots of  ILC and the margins are not clear. The tumourous mass removed was 8.5 cm  - over 140grams and all ILC with some DCIS and LCIS. I am thinking that a bilateral Mastectomy will be in the offing. The nodes need to be tested now too.  The good news is that it is a grade 1 and estrogen and PG receptive. I really intend to do everything to beat this thing with everything that medical science can swing!! .

     I breastfed my girls for years and have no family history. Sneaky ILC!

  • DMD
    DMD Member Posts: 30
    edited March 2011
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    rsummerr - sorry you had to join our ILC group. Thank you for sharing your story. I know you have a lot of decisions to make and a long road ahead of you. Take comfort in knowing that many of us have traveled before you and have come out on the other side and are doing very well! It sounds like you have a good base of knowlege of the medical field but please don't hesitate to ask those little questions that can only be answered by those who have gone through the same experience.  We are here for you! Hugs, Dawn
  • tinat
    tinat Member Posts: 2,235
    edited March 2011
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    Hi all, just found this thread...

    I had very dense breasts and each year would get the call from my doctor that my mammogram was "fine".  However, each time I would request a copy of the dictated report it actually said that the breast tissue was very dense and lesions could not be excluded.  The impression (conclusion) of the report would simply say "No masses identified".  I always argued that it wasn't exactly a "normal" report, it was an inconclusive report.

    In 2009 a tiny cluster of calcifications did show up and turned out to be ADH.  In 2010 it was back to the "normal" mammogram and I decided that I wanted an MRI.  I have no family history and I felt no lumps.  My primary MD wasn't interested in trying to order it so after 3 months of asking I decided to change doctors.  My new primary had no luck with authorization.  My GYN is out of my network and the insurance company wouldn't even consider her ordering it.  Finally (6 months later) I went back to the surgeon who did my 2009 biopsy and she finally somehow got it authorized.  I had decided if I couldn't get it authorized by the end of the year I would pay out of pocket.

    The MRI in Dec 2010 showed 5 suspicious areas and all were biopsied either by ultrasound or by a second MRI: 3 benign fibroadenomas, 1 lobular carcinoma, and 1 DCIS.  These were all in the same breast, but opposite the earlier ADH so I chose bilateral mastectomy.  Surgical pathology showed more lobular neoplasia and multiple foci of ADH.

    I had nipple-sparing BMX on 2/16/11 and am underway with implant reconstruction.  According to my Adjuvant! Online reading I am planning to take Arimidex for 5 years with no chemo or radiation.  However, my oncologist agreed to also run the Oncotype DX to ease my mind about the decision and I'm awaiting those results.

    My lesions were found quite small and very early.  All the surgeons have said that if I hadn't insisted on the MRI it likely would have taken another 3-5 years to feel the lobular mass and it likely would never have shown on a mammogram.

    Thanks for listening!

  • Katarina
    Katarina Member Posts: 99
    edited April 2011
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    My story is frightening. I'm 49 years of age, very healthy, with fibroid type breasts since teen years. In November 2009 I started on HRT and had my breasts checked by mammographies, and a breast surgeon who aspirated some fluid from my right breast. After that and all along the way my OB/GYN, a breast surgeon and team who provided mammograms,utlrasounds, and fine needle biopsies for fluid in the right and left breasts checked me every 6 months and assured me I had fibrous breasts and no signs of cancer.

    I believed them. They believed they were right too. These checks were regular and routine.

    Early March 2011 I noticed my breast was really firm and my nipple had inverted. I made an appt. to see my OB/GYN who examined me and then sent me to the mammography specialists. We were only 4 months out from my last visit. The thinking was I had growing fibroids and they were a bit too enlarged with fluid. The breast doctor.doing the ultrasound attempted to aspirate my right breast but couldn't get any fluid. She then performed a core needle biopsy. She said the ultrasound looked like fibroidadenoma and not to worry. The doctor also had another mammogram done on my right breast and said the path reports would be back after the weekend. My OB/GYN called me to share they had found "early detection" of cancer. She said small tumor. She referred me to another breast surgeon who I met with 2 days later.  

    Unlike all the my other specialists this surgeon examined me, all my past ultrasounds, mammograms and the pathology report and said with certainty I had "ILC". The tumor was 5-7cm and my physical exam showed numerous swollen lymph glands. He put it at "advanced" stage IIIa maybe IIIb. At least I'm E+/P+ and HER2 neg. I'm having my MRI on 4/5/2011. The elephant was in the room all along.

    It concerns me that so many others are also saying they had ILC misdiagnosed as fibroids -- and for many months if not years. My story is also about questioning efficacy of mammograms and ultrasounds. The biopsy was my only positive test after more than 18months of being under close scrutiny by not one, but many breast specialists. Should practitioners always biopsy when dense / fibroid like breasts present???  It sounds like a reasonable practice change to me since this is such a sneaky cancer. I'm staying hopeful on my long term prognosis but this is just unfair. I'd like to see breast screening practice changes for all my sisters out there who have dense breasts / fibroids but just possibly cancer. I'd hope my story might at least improve someone else in early detection. 

  • tinat
    tinat Member Posts: 2,235
    edited April 2011
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    Katarina:  It's very frustrating and I'm so sorry to hear of what you've gone through these past years.  I usually associate fibroids with the uterus.  Do you really mean fibroids or do mean fibrocystic disease?

    I fought for my MRI "just because".  I was tired of "normal" mammogram reports that were really inconclusive because of my dense breast tissue.  I don't know that the MRI saved my life, but it certainly found my small lobular cancer years before it would have been felt.  I am told it likely would have never shown up on a mammogram.  When a lobular cancer can be felt, it is usually a thickened area, not a lump, and has to be fairly large.  MRI is more sensitive, but leads to many "false positives".  More cancers are found, but more benign things are found as well.  Basically, it leads to more biopsies which cost more money for insurance companies.  Obviously, more biopsies also means more biopsy-related problems (hematomas, infections, etc.) so that's not an insignificant issue. 

    All my doctors (surgeons, oncologist, etc.) have commended me for being persistent about getting that MRI.  My prognosis is excellent, which it might not have been if 5 more years had to pass before I was diagnosed.  I'm just beginning my journey, but when I'm back on my feet I hope to figure out a way to help bring awareness to the need for easier MRI access for women.

  • Gitane
    Gitane Member Posts: 58
    edited April 2011
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    Katarina,  I'm sorry that you are having to deal with ILC.  Your story is like so many,  the screening just doesn't always catch this.  MRI's are needed when we have dense breasts and in my opinion should be routine surveillance for women on HRT.  Please let us know how you are doing.  G. 

  • Aggiecat52
    Aggiecat52 Member Posts: 1
    edited April 2011
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    My screening mammogram showed micro calcifications so I was called in for more views of my left breast. That was a Thursday and they had me back on Monday for a core biopsy. Original biopsy showed DCIS and I was referred to a breast surgeon. After lumpectomy, path showed ILC, which meant further surgery to examine lymph nodes. Luckily, nodes were clear so no chemotherapy required just radiation. I had no idea that breast cancer had so many types and thought you always had a lump not "thickening". I do remember having some pain in my left breast before diagnosed but it was kind of vague. I too had dense breast tissue and was postmenopausal by about seven years when diagnosed in 2008.

  • flopsy
    flopsy Member Posts: 43
    edited April 2011
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    I was dx last april with Stage 3 ILC and 5 positive nodes.   I am a Breast Imaging Specialist and even wtih all my knowledge and diligence still had it this adavanced.  Mammo did not really show any definitive change from 2009.  Mammo was done 2/2010 that showed stable parenchymal pattern.  In April/2010 I noticed a firmness or thickening in my lateral left breast and some tender nodes under my arm.  I knew this was a change so went to my PC and he ordered a round of tests and they did u/s and core biopsies of breast and 1 node.  All came back as ILC with nodes involvement.  This was no shock to me as I have been working with ladies for years that had ILC that did not show up on mammogram.  Lobular breast cancer tends to look just like the lobules that are all through the breast and do not tend to image on mammograms as an abnormality.  U/s is more likely to find these lesions and MRI is a little better.  I did have an MRI in 2007 after a benign biopsy on same breast but different area.  The MRI was negative and did not see any evidence of  this lobular cancer that must have been there even then.   My ca was bery slow growing and only had a mitotic score of 1 even though was Stage 3 which means was there for many years.   My onc said probably 6-7 years so even MRI can be wrong.  My 2010 ca did show on MRI but that was after my diagnosis and they thought only 2-3 nodes were involved and I had 5.  All of this just shows that there is no perfect imaging and some of us do not fit the mold.  BTW I also have a mother and sister with BC but I am the youngest to be dx'd.   I had BMX  done and the final path showed 2 precancers in the opposite breast that were not seen before.  There was also extensive LCIS in ca breast that was not seen before.   Well, that is my story and I am sorry it is not pretty.  I wish there was more those of us as Breast Imaging Specialist could do to find BC earlier.