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Whats your ILC story?

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  • hopeforlife
    hopeforlife Member Posts: 8
    edited June 2012

    Love ur story 3Cbrca....such an inspiration for the rest of us.....

  • ductal
    ductal Member Posts: 10
    edited June 2012

    Recently turned from 3b to 4.  Diagnosed in 2009, never returned to normal, but I am here:)  I had 30/31 positive nodes.  Mind blowing.  Now bone mets in 7 places and beginning faslodex.  Good luck to all.  This dreadful disease!

  • Gitane
    Gitane Member Posts: 58
    edited June 2012

    hi ductal,  I just wanted to say that you are undergoing a lot of "stuff" and I wish I could make it all go away.  The biopsies not being successful has to be so frustrating for you, and it seems like the Faslodex shots are not fun either.  I hope they work really well and wipe out all the mets.  I'm glad you came back to update us.  I've used that phrase, "... but I'm here."  many times.  That's the bottom line isn't it?  Hugs, big time, going out to you!!!  G.

  • ductal
    ductal Member Posts: 10
    edited June 2012

    Thank you so much Gitane, that was so kind of you on a day it was helpful.  I wish the same for you, feel well.  You have been a trooper for many years, huh!  WE ARE HERE!  and my daughter is my angel, I truly believe that.  I have quite a story, and may tell more next time.   Thanks.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited June 2012

    Hi-just found this thread. I am glad. I was feeling so different because most on the other threads have just ductal and so not similar to my dx. None of my lobular was dectected on any screening, even an MRI. Only an 8mm ductal was. All the lobular was found after lumpectomy and more after BMX. They said it has probably been there 8-10 yrs. I had an oncotype dx done after the lumpectomy with 4 positive nodes and got a score of a 6. All doc's were surprized. After BMX I had 17/17 positive nodes. Currently doing CMF and the MO said I could very well be doing it for nothing, but with that many nodes I had to try something. The only symptom I had was a high white blood count for the past 8 yrs. After the BMX it was normal for the first time. My surgeon ordered a copy of all my mammograms and said if they had compared them from the beginning they would have seen the thickening occuring, but they only compare it to the previous yrs mammo. It has been an emotional roller coaster to say the least and now I am dealing with my hair falling out. Have a consult with a place that makes wigs today.

    So glad I found you all. I was really feeling like such an odd ball with my dx. Sorry we are all here.

  • Katarina
    Katarina Member Posts: 99
    edited June 2012

    This ILC is so sneaky, I'm sorry for everyone here.

     We are here. That is a blessing. Hang in there everyone.

    hugs,

    Katarina 

  • ductal
    ductal Member Posts: 10
    edited July 2012

    Hi Gitane, Katarina, 3cbrca, etc.  Thinking of you all, Katarina, I am here:)  so funny you coined that, but it helps me.  30 positive lobular nodes in 2009 and here this insomniac sits. haha.  Awaiting results of scans, have to be careful not to let those triggers influence me.  Many of us deserve PTSD medals.  It never ends.  But, I am here!  Best wishes to you all.

  • 4ever4mom
    4ever4mom Member Posts: 3
    edited July 2012
    and your husband! Kiss   So happy and grateful for these positive stories!
  • hlya
    hlya Member Posts: 29
    edited July 2012

    3Cbrca: Wow!

  • Natkat
    Natkat Member Posts: 27
    edited August 2012

    Confused about types of cancer.  At first I was told I had IDC but after lumpectomy, now the doctor says ILC.  Can a person have both?  Is the only difference in location of the cancer? 

    Some posts seem to indicate the 2 types behave differently? Other than ILC appears in both breasts slightly more often than IDC ... what is the difference?

    Doctor just said the treatment is the same and that it didn't really matter. But I like to understand a little more since it is my body.

  • tinat
    tinat Member Posts: 2,235
    edited September 2012

    ***Edited to remove text...

    Natkat - My case was somewhat similar (and confusing).  I went into bilateral mastectomy surgery thinking I had an ILC mass and a DCIS mass according to core biopsies.  However, the surgical pathology read as lobular neoplasia (LCIS and lobular hyperplasia) in the DCIS area.  Plus, I had multiple additional areas of lobular neoplasia and ADH sprinkled throughout the central breast tissue that we didn't know about even from all my imaging studies.  According to my breast surgeon, it is sometimes difficult to tell LCIS, ADH, and DCIS apart on a core biopsy due to the sample size.  I don't know if the same is true for IDC, but I know it is not uncommon for the final pathology to be different than the core biopsy. 

    I ended up having both lobular and ADH (ductal).  Lobular is more apt to be multi-focal than ductal.

    Here's a link that discusses the different types of BC:

    http://www.breastcancer.org/symptoms/types/

    Best wishes!

  • Natkat
    Natkat Member Posts: 27
    edited August 2012

    Thank you for link Tina. At least i am happy to read ILC is typically slow to spread.

  • akler53
    akler53 Member Posts: 13
    edited September 2012

    Hi all, I have ILC and it was multifocal so had a left mast onJuly 12 of this year. now, after all the reading I have done, I will have a preventive right mastectomy. my delemma now, is whether to have chemo. Onc says I have a choice! Was not expecting that. I am learning that ILC is not IDL . I am not convinced that our health  care givers do know enough about this type of cancer, It might be the second most common BC, but it accounts for only 10% of BC. I think it is treated like IDC and I am starting to question this. Anyone else feel this way? I think I need to know as much as possible before y decision day, Sept 13 to make an informed decision about my  post surgery therapy.

    A

  • tinat
    tinat Member Posts: 2,235
    edited September 2012

    Natkat - I made an erroneous comment in one of my responses above.  I was told by two breast surgeons that it's sometimes difficult to tell ductal from lobular on needle and core biopsies and I assumed that meant that they're sometimes not sure until the whole mass is removed.  However, there apparently IS the possiblity of a mixed tumor:

    Mixed tumors - Tumors that are composed of different types of cancer cells, such as invasive ductal and lobular, are referred to as mixed tumors.

    The above is from the following website http://breastcancer.about.com/od/types/a/inv_bc_hub.htm , but I find more about this when I do a search of "mixed breast cancer tumors".

    I'm so sorry if I caused you more confusion than you were already feeling.  My apologies.....

  • hmh23
    hmh23 Member Posts: 49
    edited September 2012

    A;

    I truly have never heard of a Stage 2 or for that matter Stage 1 ILC being offered a choice - to have or not have chemo. Personally, it would not be an option for me....chemo, rads and whatever else they have in their bag of tricks to prevent recurrence. I would definitely get a second opinion from another oncologist!!!

    You've survived the worst, the diagnosis. Chemo and rads are manageable.

    Good luck with your decision.  Heather 

  • hmh23
    hmh23 Member Posts: 49
    edited September 2012

    A;  I truly have never heard of a Stage 2 or for that matter Stage 1 ILC being offered a choice - to have or not have chemo. Personally, it would not be an option for me....chemo and rads. I would definitely get a second opinion from another oncologist!!!  You've survived the worst, the diagnosis.  Chemo and rads are manageable.

    Good luck with your decision.  Heather 

  • Nancy44
    Nancy44 Member Posts: 13
    edited October 2012

    Hello, I have been lurking around and have learned so much from all who have posted here and I thank you.

    I discovered my lump/thickening in my left breast around May of this year and had my 1st mammogram/ultrasound/core needle biopsy in August.  MRI showed that the right breast was healthy.

    Had a 2nd lumpectomy yesterday to try to achieve clear margins; anxiously waiting for the path results.

    Blessings to all of you who are going through this and to the caregivers as well.

  • Nancy44
    Nancy44 Member Posts: 13
    edited October 2012

    Forgot to add my dx line in the above post!

  • tinat
    tinat Member Posts: 2,235
    edited October 2012

    Hi Nancy, sorry you have to be here.  Waiting is so hard.  Hope they got what they needed this time.  I know it's hard to believe, but once you know what you're dealing with and you get a plan in place it does actually get a little easier.  Right now you feel like it's all up in the air.  There's some feeling (at least there was for me) that things are a little more under "control" once you have a diagnosis.

    Best wishes!

  • DebbieNinja
    DebbieNinja Member Posts: 4
    edited October 2012

    I just came across this thread and thought thtat I would add my own story.  On August 9th, 2012 I went to see my family doctor for medication refills.  She reminded me at the that visit that I had not had my yearly exam that year (it was due in Feb).  She asked if I had time and I decided to go ahead and get it out of the way since I was already there. WHile performing the breast exam she asked me how long I had had this small indention near my right nipple.  I really was not sure.  I had noticed it from time to time, but it didn't stick out as somethng that should be concerning because I had been exercising and had lost about 30 pounds.  My doctor, however, was not convinced that it was from my weight loss and sent me for a mammogram the next day. 

    I ended up being rescheduled until Tuesday, Augsut 14 and after 9 different views and an ulta sound the radiologist said that he wanted me in the next morning for a core biopsy because there was an area that had shadows, irregular edges, and something else that I can't think of.  I went in the next morning for my biopsy (Wed).

    On Friday, August 17, I was sitting at my desk when the radiologist called to confirm that I did have breast cancer.  I was referred to Louisville to The James Graham Brown Cancer Center and was seen my a surgical oncologist within a week.  Two weeks later I was in U of L hospital having a bilateral mastectomy with tissue expanders. 

    I will be having genetic counseling next month.  My grandmother (my moms mom) had breast cancer at age 39, and my mom's sister had ovarian cancer at age 42.  My dad also passed away from colon cancer at age 62.  So, my oncologist greatly reccomended that I go for genetic counseling.  She feels that I may need to have my ovaries removed also.  Has anyone else had to go through this?

    My biggest fear of the genetic counseling is the test results.  I have two children and the results scare me.  I worry about my children's future. 

  • Wendymartha1
    Wendymartha1 Member Posts: 12
    edited October 2012

    Hi Debbie,

    Thank you for sharing your story.  I was referred for genetic testing based on my age at diagnosis alone (45) - no family history of breast or ovarian cancer whatsoever.  My father has prostate cancer, and I have heard that daughters of fathers with prostate cancer tend to have lobular breast cancer.  Who knows...I haven't received my BRCA results back yet but am terrified. 

    I had normal mammograms for 5 years.  Also a normal OBGYN breast exam in Feb. 2012.  Then in September I felt an area of hardening while in the shower.  When I went to the radiologist, my mammogram and ultrasound was still clear!!  The radiologist suggested a biopsy "just to be safe" and sure enough - ILC.  The MRI showed a 2.9 main mass with satellites.  My bilateral mastectomy is scheduled in four days.  Sneaky lobular is!!  Many positive thoughts your way for good genetic results!

    Wendy

  • Galsal
    Galsal Member Posts: 754
    edited October 2012

    That's interesting Wendy.  Mother had BC but I don't know which kind.  She only said it was both IDC and ILC but I never knew which they ultimately determined it to be predominantly.  Ironically, her Father had Prostate too.

  • rosie06ct
    rosie06ct Member Posts: 66
    edited October 2012

    I missed one mamogram beacaue my husband was having cancer surgery etc .. so once he was better I just forgot!! one day I felt my lymph node under my arm swollen and thought iwas getting the flu or soemthing. After about a month i went to the docs and he sent me for a mamogram and ultrasound... they saw the lymph node was enlarged and another spot on my right breast.  i had a biopsy 2 days later and then got the call the node was possitive as well as the breast for ILC. went to see surgeon who wanted to do lumpectomy and lymph node removal . He sent me to ONc. and i was diagnosed with stage iv with lots of bone mets. I started Femara in sept of 2011 and was ned in jan 12..   no mastectomy, node removal etc just hormonals (which is a chemo med I believe).... now although scan is clear my left nodes were enlarged but not lit up... so we are cautiously hoping its ok .but my last ca27-29  tumor markers went up from 29.6 to 33.. i get them every 3 months.... ... so dont know what is happening . I am hoping to bened for a lot more time !!!

  • Momine
    Momine Member Posts: 2,845
    edited October 2012

    Debbie, my family history is similar to yours. My dad and his twin have had all the cancers in the cluster (colon is one of those) that has been associated with lobular BC in daughters of such fathers, my mother had ovarian cancer and mom's sister has BC and uterine cancer.

    My mother and aunt have been tested for the BRCA gene and are both negative. I have not been tested yet, but will at some point. It is unlikely that I have the gene.

    I had my ovaries out along with most of the uterus. I was pre-meno and 48 at DX. The onc wanted to put me on tamox. Given my aunt's uterine cancer (tamox can cause endometrial cancer) and the fact that my uterus was already a mess of cysts, I opted to have a hyster and go on an AI instead.

    This turned out to be a total win-win for me. Not only were there various pre-pre-cancerous cells in the lining, so tamox would definitely have been a bad idea, there were also horrible adhesions from the C-section I had 20 years ago and the lovely surgeon cleaned up that whole mess. So now I have a flat stomach and no abdominal pain! It was all done with the da Vinci method and a lot of patience. I was in the hospital 24 hours, somewhat uncomfortable for about 5 days and then good as new. Have I mentioned that I love my surgeon? :D

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited October 2012

    Momine, that sounds like a great outcome for you - a definite win-win for you.

    I didn't have any family history of any cancers, although my brother was dx with bowel cancer about 3 weeks after my mx.  We were told that bowel and breast cancers are totally unrelated.  While we have always been fairly close, going through cancer at the same time has made us even closer.  He was lucky though, his cancer was caught very, very early and he only had a very small section of bowel removed and had his colostemy bag only 7 weeks before it was removed.

    Trish

  • Momine
    Momine Member Posts: 2,845
    edited October 2012

    Trisha, here is an article on the association between paternal cancers and lobular BC http://www.biomedcentral.com/1471-2407/11/497

    They mention prostate, leukemia, sarcoma, but I have seen other cancers included in this group, among them skin, testicle, bladder, kidney and colon.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited October 2012

    Thanks Momine, intersting article.

    How lucky am I? No history of any sort of cancer in either my mother or my father and yet I got both ILC and IDC in the same breast! :-)

    Trish

  • FLwarrior
    FLwarrior Member Posts: 614
    edited October 2012

    Hi.  I had ILC on one side. No other cancer in my immediate family.  My mom's 1/2 sister had BC many years ago (aggressive and fatal...mets to brain). No-one knows/remembers what kind of bc she had. My mom's brother had leukemia (aggressive and fatal). There is no cancer at all on my dads side of the family.  I am BRAC1 and BRAC2 negative.

    Trisha-Anne, you are fortunate that your relationship with your brother has strengthened.  It is good you had him at such a difficult time in your life. I was not so lucky.  My sister completely ignored my dx. She never called, sent a card or anything!  She has always been self centered and snobby, but I was SHOCKED and VERY SADDENED that she was completely absent at such a critical time in my life.  On the other hand, I am very thankful that my mom was extremely helpful.

  • Rdrunner
    Rdrunner Member Posts: 67
    edited October 2012

    Well I found out yesterday that I have ILC, all I know at this point is that its grade 2. Dont have a date yet for surgeon etc. Im 44 and my last mammo and US was jan 2012 and it was clear. I noticed a difference thickening  in May but was in the middle of selling buying a house so I forgot about it until the beginning of October. Im shocked I guess right now and very scared. Im a single mom ex lives in different province, no family in the Canada and I havent told my family yet as they are still recovering from my sister passing away from BC less then a year ago. I cant remember if she had ductal or lobular but it was agressive and mestastised quickly, she pass just under the 3 year mark.

    I do have a health care background so I kinda know what Im dealing with. Im ticked because I didnt realise that this type can brew for years. For the last 10 years Ive had recurring inlarged axillary lymph node on the same side. I had two surgical biopsies in 2002 and 2004 which  came back reactive benign, after the second one another lymph node enlarged and the surgeon told me there was no point to biopsy as the other two were negative but said  to watch it. Its still there and didnt get bigger. Now that I know a more about ILC I will be having the other breast checked as they didnt when they found this one. I am asking for mri. I am also being investigated for mastocytosis and had a bone marrow biopsy a few weeks ago still waiting for all the results but the results that have come in are showing something wonky with bone marrow.

    I havent told my kids 17 and 13 yet, I figured I would wait until closer to surgery so they have less worry time. Anyway right now Im sort of numb and terrified at the same time. On a positive note with this mastocytosis thing I have had so many tests I know my liver and spleen and kidneys are fine. My uterus though the lining is thickened, has been for a while and had a biopsy last year that was negative. At this point I think I will ask for a proper biopsy versus in office one. Anyway thats my story for now.

    Take care eveyone

    Rdrunner

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited October 2012

    Oh Rdrunner sending you ((((hugs)))) I'm so sorry you had to find yourself here, but this is a wonderful site, and you'll get lots of support and information.

    Trish

    xoxoxo