ILC, Did you have a family member with ILC?

JudyO

Just curious. They do BRAC testing for genitics. From what I have seen these are mostly IDC and often triple negs. One of the criterias they review is age. I am coming from a family where both grandmothers died of stomach cancer in their mid 50s. Lobular tends to go to the gastro area and often you do not have a tumor in your breast you can feel. My father had 2 sisters, one died of breast cancer in her mid fifites....my mother died of lung cancer so I don't know if she would have gotten bc or not....Most ILC occurs at an older age...common in your fifties...yes I do see most of you on this sight are younger....but am curious if there is a genetic thing to lobular and they may not know about it or are not looking for it because at the age of 50 you just hit the normal percentage who will get breast cancer...thats what they told me.

1Cathi

Hi Judy,

There was no family history of ILC as far as I know. I was DX @ 46 W/ILC, LCIS, ALH in my left breast.  My mom passed away in 99 however from liver CA with an unknow primary, so could her Liver CA have started in her breast, quite possible, when she was DX she refused any further testing/treatments and she passed away almost 6/wks after DX. She refused as she had been very sick for several years from kidney failure (diabetes) and doing dyalis for that, and severe heart problems  - she was just plain tired,  she was 76, her mom also passed away from Lukemia. I have had BRAC testing -negative on both.

I have always wondered why her CA had not been spotted sooner,  she was ALWAYS being seen by her Dr's for the other aliments, and for about 1.5yrs prior to DX she would require blood transfusions for extreme anemia, she had several colon polyps removed (B9) and the Dr's just never gave us a clear reason for her anemia,   but the thing I do remember is she had NOT had a mammo or Pelvic exam for many years, so perhaps the breast was the original culpret.

JudyO

Cathi....very interesting.....cancer of the colon is also tied to breast cancer...my mother and sister have had colon polyps removed but they were B9...I really think so much of this is eventually going to tie together...

1Cathi

I think you are very right Judy, I have already had B9 Colon polyps removed (last year), I completey understood my moms choices at the time, she had been through so much, but I do sometimes wish we had at least been able to have known where the Original CA started, I did not have a clue in 1999 it might mean so much to me and perhaps my daughters in the future.

Weird thing is I aways have thought I would be diabeticw/heart problems (my dad also died from renal failure from diabetes and he had also had a leg amputated), but thank the Good Lord, I am quite healthy in those arenas.

SusieMTN

Hi girls, I was diagnosed 22 July '08 with ILC which was locally advanced.  I am her2 and estrogen and progest. positive.  I am 56 with no history of BC in my family, or for that matter any form of cancer.  At diagnosis I presented with a 10 cm rock solid mass which grew to that size in about 3 weeks (from about a 2 cm mass) while I was going thru fine needle, core biopsy etc...  Had a modified radical mastectomy 3 weeks ago and an doing great.  Don't know if either of you feel this way but this has been THE weirdest experience of my life! 

1Cathi

Susie it has for sure been an "experience"  I actually felt my "lump" or  as I described it , it felt like a protruding pencil point in the upper out quad of left breast, almost in to axillary area (Feb 06), just by chance one day when showering, I swear it wasn't there one day, and the next it was,  I was bad though, I was planning my wedding for May 6, and did not go to the DR until June,  honestly I knew it was not right - it was not normal, did I really think it was CA , yes I think, but I was so busy and excited, I wasn't living "scared" right then, if that makes sense. 

When I finally had my mamo (showed nothing) and my US (solid mass seen) then I got scared and worried for sure.

It for sure has been an experience, one I wish I never had to have.

Your tumor was very large WOW. Could you feel it, I know they say most ILC is not palpable, mine was as I mentioned.

wallycat

I am the first in my family (and lineage...that we know of) to have cancer of any kind.

I was dx 1 month shy of 50.

hbn74

hey, just popped in and noticed this coversation.

i'm 34yrs old and was found positive for a mutation in the CDH1 gene. from what i understand both brca and cdh1 have to do iwth e cadherin and cell adhesion.

on january 5th i had my stomach removed because my chances of getting stomach cancer were very high (83% risk). I had screening, gastroscopy and ct scan... as far as everyone knew I had no cancer in my stomach, the surgery was preventive. Upon removal, pathology showed that I did have mulitiple spots of mucosal carcinoma. This was no big shock, since screening is very unreliable.

Along with my risk for gastric cancer, I have a risk of over 40% for Lobular breast cancer. I know, the risk isn't as great as it was for my stomach, or for those with brca, but I still think I'm going to go with a prophylactic mastectomy. I dread another surgery, but since they did find cancer in my stomach, I feel like I just want to get it over with. I would rather the benefits of prophylactic surgery and reconstruction than having to face treatments and mulitiple surgeries.

Anyway, I just wanted to say that there is some genetic mutations linked to lobular breast cancer. CDH1 is one of them.

JudyO

hbn74...why did they check to find if you had the mutation for the CDH gene? This is exactly what scares me...both sides of the family with early stomach cancer deaths...grandmothers...and several uncles...all very young.....Judy O

1Cathi

Does the CDH show with the BRAC testing, I know my test said no other "variants" detected, or something like that.

darsura

No family history of breast cancer or cancer of any sort, except for my maternal grandfather who died of throat cancer when he was 54 years old.  Then last year my brother, age 52, was diagnosed with prostate cancer.  And a few months ago I was diagnosed with IDC and ILC.  I am 51 years old.

nash

Cathi--the CDH-1 is a separate gene from the BRCA gene, so it doesn't get tested during the BRCA testing.

 hbn--I'd be interested in hearing how you came about being tested for CDH-1. I'm sorry you tested positive--that's pretty hard core to have to get your stomach removed. 

As far as ILC in my family, no.  My father died of pancreatic cancer, my grandfather died of bladder cancer, I have an aunt with colon cancer, and my mother died of bc--but hers was IDC, HER2+. 

hbn74

JudyO and Nash,

We have had many stomach cancer deaths in our family the earliest being my Grandfather who was only 43 when he died. At the beginning of 2008 my aunt (God rest her soul) was found to have Diffuse stomach cancer (which is the type of cancer that this gene is associated with aka Linitis Plastica). She, being very sick with the illness, demanded answers. She was just so sure that there had to be a reason this kept happening. She underwent genetic testing, sadly she passed before learning that she was positive for the gene. My father had already passed away, so I qualified for testing alongside her siblings. All of the remaining siblings tested negative, which means that each and every person in and before her generation that carried the mutation had died ... all of cancer, and all too young (ages 43, 50, 56, 60, 61)

Honestly, I feel like learning about the mutation and having the surgery was a huge gift. I have a much better chance of seeing my kids graduate, have kids of their own and hopefully I can actually retire some day.

I know when I heard that it was recommended that I have my stomach removed I reacted with horror and shock. But, so far so good. Some people have difficulties, but I've been doing pretty good. I'm only about 7 weeks out of surgery and I'm eating pretty good and the weight loss has stopped I think... which is kind of a rip off cuz I gained more weight in anticipation of the surgery than I lost. haha

I would say, because this isn't as well known as the brca gene, that if you have a history of stomach cancer in your family, specifically diffuse type, then you should talk to your doctor and be referred to a genetic counsellor. Hopefully you have a great doctor like I did and he will take alot of interest in it. Don't be surprised if you doctor hasn't heard of it, when I was tested the cousellor said that as it stands it's rare, but they have a feeling that as time goes on and more people are tested, they will find it's not nearly as rare as it is now. This is a sneaky cancer that is not easily detected, in our family once you show symptoms it's too late, which is why I had the surgery.

nash

hgn, thanks for sharing your story. I'm glad to hear you're doing well after surgery.

SusieMTN

1Cathi wrote: Yes, Cathi you could initially feel it.  My breast one day blew up like a balloon, sort of like when I nursed my son and had mastitis, but no redness.  After it decreased in size I felt two sort of walnut size hard masses, but not like my prior cycts which felt like rubbery small balls, these felt very different.  After that it grew like a weed,  that scared the ____ out of me.  It continued to grow until it was my entire breast then is slowed down, oncologists have told me it could no longer get enough blood supply.  Never, never ever thought I would get BC.  Weird but never thought BC would present like it did with me......  Doing well and think my new mantra will be like that commercial on TV ......when I grow up I want to be an old women...... 

1Cathi

Susie I am so glad you are doing well,  I know I have read so much that ILC does not present with a lump, nd from these boards I do believe that is the norm. I do thank God that mine did, because my GP when I finally went to him had smarts enough to order an US the same day as mammo, my mammo showed nothing.

I try so hard not to make BC part of my life, but dang I fail a great deal, as soon as I here about a woman who has had Bilat and still had a recurrance, 

Hbn, not sure what the right words are to say to you about choosing the stomach removal, except what a huge and brave decision, my father-in-law had Stomac cancer and was forced to have his removed, I know what a challenge it was for him to learn to eat properly with the small pouch he was made,  I commend your strength.

XOXOXOXOXOXOXO -Cathi

Gitane

I'd just like to share that the idea of a genetic component in ILC and a possible link with other types of cancer, in particular GI cancers, is rare but not unheard of.  I was told that pathology slides of relatives who had died of cancer could be stained for proteins that may give an indication of what genes were at work.  These slides are usually kept in hospitals for at least 10 years.  If you know where your relative was treated and can get legal access to the slides (usually with permission of a first degree relative) a geneticist might be able to help you explore genetic information about your family.

Kleenex

I had a great aunt (mother's mother's sister) who developed breast cancer at 75, and that's the sum total of the family breast cancer profile on both sides. I don't know what type she had. There is a LOT of colon cancer on both sides of my mom's family tree, though, although, again, they were all older: 70's and 80's when diagnosed. If someone does know of a study or report or some anecdotal information linking colon and breast cancer, I would LOVE to see that. As I said on another post, I'm betting there may be something genetic to this - just not BRCA.

Mazy1959

I had 2 great aunts with ILC. One aunt had her breast removed only when she was about 40 and never saw it again, she lived to be 93. The other aunt also around age 40 had her breast removed but hers came back to her spine and then to her brain, she lived until age 75 and only the last 2 months of her life were real bad. This aunt also had a cancerous mole on her back. I have had a mole in the same spot removed and it was precancerous. My cancer has followed the exact path as hers so far but we are hoping with treatments of today that it wont make it my brain. Hugs, Mazy

1Cathi

I have found a few articles online -for what ever they are worth -heres one that discuss E-CAD (or the lack of) and a link between gastric CA and ILC,  my pathology report of my ILC tumor, says negative for E-CAD,

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2253650

SunshineSmiles

No family history of Breast Cancer, I am the first.  I am BRAC neg, diagnosed at age 40 with a routine mammogram.

Susan 

Anonymous

I was diagnosed at 60 with ILC and I'm the oldest of 5 girls.  I had an aunt with BC (details unknown).  I have a friend with ILC who is the youngest of 5 - no other BC in her family.  I had annual mammo's and did not have a "lump" at diagnosis.

Anonymous

My mom has had both bc (ILC) and colon cancer (twice)--my MGM died of colon ca and my MGGM had bilateral bc; I have LCIS.  My oncologist said bc and colon ca are "cancer cousins", but a  genetic counselor I spoke to (briefly after a conference) said unless the bc and colon ca were at a young age (less than 50) it was more likely sporadic, not genetic in nature. (my grandmother was 83 with her colon ca, mom was 72; but she said my mom's age at bc--57--was  "kinda on the edge").  Even so, my insurance has said they will not approve BRCA testing as I don't qualify within their guidlines.) Oncologist was very surprised to hear that, thought I should've been covered because of the family history. For now, I will continue with my high risk surveillance of alternating mammos with MRIs every 6 months, breast exams; finished my 5 years of tamox recently and just started on Evista, and of course colonoscopies every 5 years.

Anne

1Cathi

Hi Tupelo,

To be honest I don't understand most of the report, not nearly as educated on the lingo as some of the ladies here. But this paragraph is the one that peaked my intrest. If I am understanding correctly, 85  % of the time no E-cad in found in ILC,  and 56% of the time the mutation is present, To me that seems rather high.  I wish I had known of this when being BRAC Tested, I would have asked my genetic counselor about it,  I know now my new insurance will not foot that bill.  For me personally if say I were to have that mutation I don't really know what coarse of action I would take,  I just feel for my daughters and grandchildren I would like them to have as much knowledge as possible. 

The histology of LBC is characterized by infiltrative cancer cells which are isolated, highly dispersive and demonstrate a growth pattern with scattered and single files of tumor cells dispersed in stromal tissue [36]. This pathologic appearance is remarkably similar to DGCs and both LBC and DGC demonstrate characteristic mucinous, signet ring cells. This is not unexpected as E-cadherin staining is absent in 85% of sporadic invasive LBC [37] and somatic CDH1 mutations have been identified in 56% of sporadic LBCs [38]. Furthermore, in IDC, somatic CDH1 mutations are not found [38] and complete loss of E-cadherin expression is an uncommon feature. As loss of E-cadherin expression is a distinctive trait of both LBCs and DGCs, it likely contributes to the unique histopathologic features shared by the two cancers.

1Cathi

Well that is a question I wonder, I  don't know, but I believe there is a direct gene link (mutation) between DGC & ILC.

I understand that paragraph to say the 56% of ILC (Sporatic) are found to have the mutation, yet I have read other articles that say the mutation is rare, I don't call 56% rare.  Sooooooooooooo????

I would be tested for the gene if I knew I could be, for my family espically, but theres no way my new insurance will pay for it.