Searching for people with Invasive Lobular BC

Hi Laureen,  I too was just recently diagnosed with ILC on Jan 27.  I am scheduled for surgery on March 2nd.  I am 47, and in great shape, so I was so shocked to get this diagnosis.  I feel great, but will feel better after surgery and this is out of my body.  I too had similar scans and they were all negative.  I also took the BRAC test, and it was negative too.  I have dense breast tissue, and over the years have just had mammograms.  No one ever suggested that I needed an ultra sound or an MRI. I found a lump about the size of a jelly bean a month or so  ago, and DR said she didnt think it was anything, but if it made me feel better we could get an ultrasound.  Needless to say 4 biopsies later.  I have three areas in one breast that are all positive for ILC.  I am opting for a bilateral mastectomy, because if this was so hard to detect in one breast, I could never rest wondering when it was going to be found in the other.  There is so much information to read on this site,  sometimes it is overwhelming.  I cant offer much advice, but thought since we have a similar diagnosis, that we could help each other.  Good luck, and hope this helps alittle.  LT

Laureen, the board has a limit of 5 posts in a 24hour period for new members to stop spam.  So you will have to wait after your next post.   You can still send a PM to any individual by clicking their name then clicking "send a personal message".  If you get any messages a number will show next to "Personal Messages" on the tab at the top of the page.

Hi, I was diagnosed with ILC in January of 2008.  I also had one lymph node involved.  I had a lumpectomy and TCH  chemo.  I was on Herceptin for a year and now I am on Arimidex.  I feel better everyday, although I have some of the bone pain that comes with Arimidex.   They say it is rare to have ILC and HER+++ but I did.  Anyway  I hope all goes well with you!  Oh by the way, when they did my lumpectomy they also went into the other breast and took out anything that looked worrisome, but none of that proved to be cancer.

Hi Laureen. I was 39 when diagnosed with ILC last year. I had a lumpectomy, which came back positive margins, so I chose a reexcision to get rid of any remaining cancer cells. I think if I had a bigger ILC (mine was 1.4 cm), I would have gone for a mastectomy, but my doctor assured me the overall outcome would be the same with mastectomy or lumpectomy+radiation.

Given that you are 32 and want kids, I see why you'd have the additional desire for lumpectomy only--that way you'll have the opportunity to breastfeed. 

I chose chemo, but I had a fairly low Oncotype score. If I was still in pre-childbearing mode and wanted more kids, I would *definitely* have chosen NOT to do chemo. But since I'm done with kids (I have 3 ) and still fairly young, I chose chemo. Both my oncologists left the final chemo decision purely in my hands based on my stage and oncotype score.

big hugs to you. 

Jenny

HensonChi - I am another HER2+ve ILC patient - we sure are in the minority. I've finished my TCH and year of herceptin in December but am currently undergoing rads on my other breast which was found to have IDC a year after the first diagnosis. It looks like it went undiscovered the year before. MRI's are so important - I should have had one at first diagnosis.

Laureen - have you had surgery yet or are you still waiting. I had lumpectomies on both sides opting to be conservative at this stage. Good that you have had an MRI - lobular cancer can be so sneaky. One thing about MRI though is that it can give false positives. I had 3 suspicious spots in my breast, only one of which turned out to be cancer. I had the other 2 spots removed however as they couldn't biopsy them. Depending on the size of your ILC - it may be fine to just go with a lumpectomy. If your lymph nodes are clear and you are not HER2+ve, you probably won't have to have chemo, just radiation if you choose a lumpectomy.

Sue

come on over to the ILC thread--lots of us there!

Hi! I am a newbie but found out today that my lump has a name now! I joked to my boy that there are 5 types of BC and my path report has 4 - ILC, LCIS, DCIS and some pagetoid cells for good luck! It is like my boob couldn't work out what it wanted to do so it went for the buffet!

Now considering what next - i will meet the BS on Thursday. I have the urge for a bilateral Mx as the excisional biopsy was 8.5cm of all ILC tumour and not all clear margins. I had two biopsies earlier with no clear result and have patiently waited 3 weeks to get to a diagnosis. Now will have to go back for SNB -this was supposed to be a simple conservative excisional biopsy with everyone going home having had a good time.

Question? - has anyone had a big tumour and gone conservative rather than double Mx -... I am figuring that I wont be able to keep enough with a reexision to be even sided and may as well kill several birds with one stone  -also will need to get the good breast well examined before making a decision - not even an ultrasound on that yet and at 46 I have only had a mammogram on the bung boob.. the mammogram on the bung one was not scary but the US was! Decisions...decisions..decisions..

Hi Laureen ...isnt this discussion part of the ILC forum?  lol ..must be lost! Yes I had some fun deciphering the path report...but ILC (infiltrating / invasive Lobular Carcinoma) was present in all of the tumour sections with focal points of DCIS  and LCIS also present..the Pagetoid cells were just around for fun! Apparently ILC with associated DCIS is not uncommon according to some other posts I have read. The path reports that it is associated with the ILC disease process. The presiding diagnosis importantly though is ILC.

Off topic -  Have told my DH that I shall be getting a tattoo on every scar - I am 46 and totally conservative (no tats or piercings! - heck I am a grandmother!)  but saw some photos on other mastectomy patients and the thought of a transformation that I will be in control of is comforting! Has anyone else decorated or covered  their scars?

Hello everyone,

I was diagnosed just 3 weeks ago. It was not quite the surprise believe it or not. I hope you all don't mind reading my story. I am hoping it might help someone one day.

I am 49 and very healthy overall, I am one of those athletic and healthy eating typesJ, no history of any cancers in my family.

About 4 years ago, I thought I felt "things" in my left breast, so I mentioned this to the tech during my mammogram. Result was good, nothing to worry about...Same thing happen year and half later. Well, for about a year now I felt "the thing" growing and started getting worried. But this time I was really worried to the point that I could not make myself to go and get another mammogram, being very scared to hear bad news. I know, this makes no sense, at least intellectually, but I just couldn't do it. Finally somehow, one day I woke up and thought that I could not be anymore ridiculous! I have 13 year old daughter (and grown-up son-26) and I thought, how could I do this to her? She is going to really need me for at least few more years. Anyway, that did it of course. I called and made mammo appointment. Believe it or not it showed nothing again! Ladies, if you could feel my "bump" you would know this cannot be anything. I called my primary doc and after he looked at it he send me straight to the BS. I saw her 2 days later. We did ultrasound. NOTHING! I am serious! You can feel like small baby carrot in my breast but nothing?! Of course we did core biopsy right away. 2 days later it came back - ILC, LCIS, ER/PR+, HER2? (not known yet). MRI did not pick up enough either to be able to very well establish the size of the lump. I read and I thought and I listen and I decided to do unilateral mastectomy, but I kept wondering if bilateral would not just make more sense. My doctor was fine with whatever I decide, saying we can do right breast later if something shows. Well, it never showed on the left one! As of yesterday afternoon I made a final decision to do bilateral. I asked for SLB be done on both breasts. I have to tell you I feel better alreadyJ! Did I mentioned, I am not doing reconstruction now or later. It never even crossed my mind to go that way.  

My surgery is March 21 and I feel ready and hopeful it will go well. Does anyone have any great useful advice for now? My doc plans to put only one drain on each side since I am small person. From what I am reading drains are the one everyone hates the most, right?

I will listen to any suggestions, how to deal with that.

I am sorry for long blubber but just needed to share this with someone in my shoes. I do have some friends who had breast cancer but they are very "panicky" types and I am trying to stay as positive as possible. Thank you all and will try to let you know next week how are my breastless body and soul doing.

Thank you Laureen. Of course all the best to you also. Please let me/us know also how is everything going.

Yes, of course I found out all of this stuff about ILC but kind of late. To be honest there could have been (I might not use the proper tense, after 26 years here still cannot get this...)so many indications in my female health history that if I was a doctor and was aware of some things I would investigate that much sooner. I am trying to be positive and not to fear the worst, but even thou I try to be strong I do too have bad moments sometimes. I hope you have people around who  can be your support system. That is so important! We are all here for each other and I already find all the blogs and forums extremely helpful.

Best to you and all,

Agnieszka

Hey Connie, I did not have implants prior to diagnosis but I am sure there are other women that will come along that will have more input for you.  I know you are overwhelmed with all of this right now but as you get a treatment plan in place it will get better.  If you end up having chemo, it is doable.  They have great drugs to combat nausea. 

The other thought I had when reading your post is that you if you don't get other ladies here that had implants prior to diagnosis you might want to post again in the Just Diagnosed thread.  When I was first diagnosed with pleomorphic ILC I thought that I would be treated differently than ladies with IDC.  In the end, ILC and IDC are treated the same way.  Ladies with IDC may also have input as far as having implants prior to diagnosis. 

I wish you all the best.  Posting here, getting advice from other ladies who have been through it and knowing what to expect has been a lifesaver for me.  Please continue to post as you know your treatment plan and let us know how you are doing!

Susan

Robin, I have never had dense breasts yet after finding a thickening that turned out to be a 4cm tumour, I had a clear mam, US and then after the biopsy showed ILC, I had a CT and it only showed oedema.  I paid for an MRI myself as I wanted to be sure what was there and it was very clear.  I decided on a bilateral Mx even though only unilateral was recommended.  It was mostly the changes to my nipple and skin thickening that made me look for a lump.  

That was June 2009 and now I'm back to my old self most of the time.  You're at the beginning of an emotional roller coaster but the worst is in the beginning, getting the diagnosis, waiting for tests and deciding on a plan of action.  After that you'll feel more in control and the bumpy ride will smooth out and gradually ease.  I hope you have people you can talk to.  We're always here on this forum and we understand so come here any time. Good luck with all the tests.   

I wanted to give you brief information that I hope you will never need.  I've had lobular for 4 1/2 years - it has never shown up on a Pet Scan.  Lobular "can" also have a different metastasis pattern than ductal.  Since only about 17% of BC patients are Lobular, you are ideally with an Onc that only does BC or one that does a lot of BC.  I found that the generalists did not see enough BC patients to ever be on top of the ins and outs of Lobular diagnostics or the unusual metastasis.

I hope you never need this information - best of luck to you.