ILC, how many of you were dx with the cancer in both breast?

JudyO

When my tumor was found they immediately did a breast MRI since my surgeon told me about 20% of the lobulars have it in both breast. I am wondering how many of you had it in both breast when dx, how did they find it, and also would like to hear if any of you had a recurrence in the second breast at a later time.

wallycat

Only the original dx.

I opted for bilateral mastectomy and the other breast had no cancer; not even atypical cells.

I don't regret my decsion.

Anonymous

When dx'd...I only had it in one - but it was multi-focal and the largest tumor was just shy of 4cm. One of the smaller tumors was LCIS. ILC on it's own can mirror in the other breast AND having LCIS along with ILC - puts us girls at about a 30% risk of it mirroring. So...about 7 months after all treatment was done, I had a prophyl. The pathology showed atypical cells - (with a 50% chance of becoming cancerous)! Whew... I made the right decision. Best wishes to you. I'm sure others will be along shortly to chime in.

Anonymous

I should clarify my previous post. The "50% chance of becoming cancerous" was pertaining to the pathology of the tissue from the prophyl... not the tiissue from the LCIS. Just fyi.

JustSaying

LauraGTO can you provide any info on ILC mirroring statistics like any websites you know of that discuss this? I had an ILC tumor 1.2cm and 2 smaller IDC tumors plus a bunch of DCIS (they did NOT know the DCIS was in there before the lumpectomy, even after the MRI). I am set to have a unilateral mastectomy this Thursday, and my surgeon still recommends I don't go prophylactic bilateral, but I am scared about it, esp. since the DCIS was not even seen on the non-cancer breast. I did not have any LCIS, as you mention, at least not that I could see in my path report. Therefore I am wondering if there is still a higher than typical risk (she said it is now 8% per 10 years, cumulative) of a new cancer in my "good" breast, as this could tip me in favor of bilateral. I guess I shouldn't 2nd guess the doc, but still...she says I can always have the other one off at some point in the future. Hmmm.

kam54

I was diagnosed in my left breast with ILC and my surgeon told me that ILC has a tendency to show up later in the other breast.  I had already decided to have a double mast.  Before my surgery, I had many tests, MRI's, Ultrasounds, Pet scans, bone scans etc.  Well the breast MRI showed an area in the right breast that was of concern.  So my surgeon did a biospy and sure enough it was ILC, very small almost undetectable, but there.  After the double mast, my surgeon called with the pathology report and unbelievable, in my right breast was several areas called focal areas of this cancer.  So I am one of those where it did show up in the other breast.  I am grateful that my surgeon found it.  Do to the fact of double breast cancer, I had alot of radiation, including my clavical nodes.  I only had 2 nodes positive, one on each side, but my radilogist wanted to give me the max radiation.  It has been almost 2 years since diagnosis.  I go back for another pet scan in March and of course am scared, but this is life after cancer.  I don't want to scare anyone regarding the reoccurance of ILC, but to educate and be pro-active in your future exams and know to be diligent about them. Good luck to all.

Anonymous

I've also read the 30% statistic of ILC occuring in the other breast, but that does mean 70% won't. My mom had ILC--lumpectomy, radiation and tamoxifen--and is a survivor of over 22 years without a recurrence.

Anne

darsura

I had a <1cm. IDC in my right breast, and my MRI also showed an area of enhancement that was thought to be atypical hyperplasia below the IDC.  My left breast was clear on MRI.  I chose a mastectomy.  My pathology report showed that the area of enhancement was really an ILC 1.5cm.  At first I thought, had I known about the ILC, I would have had a bilateral since i too had heard about the mirroring of ILC.  But my surgeon told me that I have a 10-15% chance of developing a tumor in my left breast over 20 years.  Flip that around, and there is a 85-90% that I will not.  Knowing that, I am comfortable with the unilateral surgery.

marshakb

Statistics aside, I just wanted to say, from experience, I HATED having one breast.  My surgeon refused to remove the "good" breast saying I was being drastic.  Well, OK, but no one mentioned anything about the psychological affects of the "uni-boob" to me.  I did like LauraGTO, after chemo/rads were done, found another surgeon, this one a breast specialist and had the other breast removed.  I had a long list of reasons for this  and close to the top of it was how much I hated having one breast.  I absolutely do not regret my decision. OH and BTW, the 2nd surgeon told me a bi-lat would have been his first recommendation to me and also that most of his patients with ILC who choose Bi-Lat are nurses! 

Just my Opinion..................

gracejon

I had ILC and LCIS in one breast.  I had ADH, ALH, and all four quadrants of my good breast had lobular carcinoma in situ(LCIS).  I did not have invasive breast cancer in this breast and may have never developed it.  However, I clearly had a multitude of unusual cells throughout that breast.  If you call LCIS breast cancer then yes I had breast cancer in both breasts.

melmedic06

i was dx'd with ILC in my left breast in october of 2004- it was 0.9cms with negative nodes so i was not a candidate for chemo but i did have 6 weeks of radiation and started on arimidex- in august of 2005 after a suspicious mammo my radiologist did a steriotactic biopsy and  pathology showed DCIS- the radiologist- surgeon- radiation doc and my oncologist all encouraged another lumpectomy since my ILC had responded so well to the radiation- i so wanted a bi-lat but went with what they suggested and had the lumpectomy- my tissue came back totally benign- no DCIS anywhere- the surgeon actually had them run the sample twice while i was in the OR to make sure it was indeed benign- so no DCIS after all but i did have 6 more weeks of radiation and stayed on the arimidex- as i get closer to my 5 year mark i still wish i would have gone for the bi-lat but i just had my best CA 27.29 EVER so i am happy- keep the faith ladies-

johannaw

I too have cancer in both breasts.  Had sterotactic biopsies in one that came back LCIS.  Was sent for an MRI which confirmed what they found and also a suspicious spot on left breast.  Then I had an MRI biopsy and that side came back with ILC.  Have appt. with surgeon this tues. to discuss plan of action.  Very anxious of what she will tell me.  Am leaning toward double mas. but also hear horror stories about the recon.process.  I know it will probably be a long journey

Mistral

Hi everyone.   This is my first post to this forum and this topic caught my eye as I was just trying to figure out where to start...

I am 48, and I was just diagnosed with bilateral bc, - invasive lobular in the left, invasive ductal in the right.   There are 3 tumor sites on the right, and they are in different quadrants, so a mastectomy is needed on the right.  On the left, there is one tumor and my surgeon tells me that a lumptectomy on the left is an option.  There is not much information out there on bilateral bc.  She provided me with info that recurrency and survival rates are the same, regardless of surgery - bilateral mastectomy vs. lumpectomy and unilateral mastecomy.  I got a second opinion from another surgeon and she says the bilateral mastectomy is the only way to go.  Same word from the plastic surgeon.

I am so confused by the conflicting opinions.  How can I make a decision on what is the right path to choose for surgery when the doctors can't agree on it?

I don''t want to delay surgery, so have to make my mind up fast without feeling that I rushed in making a decision I might regret.  Since this diagnosis is so relatively rare, I have not been able to connect with anyone locally. 

Thanks so much so any advice you can offer me...

kickinit

Mistral I couldn't believe your post.  Our stories are so similar.  For years I had calcifications that were questioned and had previously gone through a biopsy.  In June 2008 they found a new calcification in the left breast and the biopsy showed I had invasive ductal cancer.  While reviewing my mammogram films my breast surgeon decided she wanted biopsy my right breast because they had questioned a the previous year.  Sure enough, I had invasive lobular cancer in the right breast.  Kind of funny to say, but I was lucky they found it in the left breast which forced the review and biopsy of the right breast.  The lobular doesn't always show up.  My surgeon told me it is not that uncommon to have cancer in both breasts but not two different types of cancer.  From the very beginning I had said I was leaning toward a double mastectomy.  For too many years I have had to go back for more pictures when the original mammogram showed "new calcifications".  I don't think I ever would have trusted a mammogram again after finding the first cancer.  After finding the invasive lobular in the right breast my surgeon told me there was no question at least on the right breast - there were too many other things going on that she was fully recommending a mastectomy.  I had a bilateral mastectomy on July 30 with reconstruction started immediately.  The cancer was all removed with the surgery - I had 2 lymph nodes taken from my left arm and 4 from my right and all were clear.  I was a Stage 1 on the left and Stage 2a on the right because the tumor was 2.5 centimeters.  With the lab results from surgery and from an oncotype test they did on my tissue, my level for recurrance is around 7 - 10% so I didn't have to have chemo or radiation.  I am very lucky and I'm sure it is due to finding the cancer early and getting things taken care of as soon as possible.  I have no regrets about the bilateral mastectomy and would do it again no question.  I had my final implants put in November 7.  Looking back I had a very busy 5 months and I can hardly believe I actually went through all of it.   

ktn

I am so glad to see this post!  I have been reading these boards and have been very helped by them but this is my first post. I felt a thickening in June in one breast and went that day to the MD. She then felt an area also at the top of the other breast. I am 49, a nurse, and always had yearly exams and mammos. I had never had any problems before and am very healthy. I had large breasts and they always felt lumpy! Anyway, after mammo, ultrasounds and biopsies I was told ILC in both breasts. That actually made the decision easier. I had a double mast 7/08. One tumor was 5+ cm with 5/15 + lymphnodes and the other was 4cm with 4/9 + nodes (the second side had a neg sentinel node in surgery so had to go back one week later for removal of those nodes). The surgeon said the cancer cells might have started 7 years ago but took this long to be found. I was told that in my case I should have expanders and not tram flap reconstruction. Since lobular is hard to detect, the expanders would push any new lump/bump right to the top of the skin and would be easy to detect. I had DD chemo, 4AC and 4taxol. Last week I finished 28 radiation tx. My expanders will stay in til summer sometime. My oncologist just did labs and I will find out next week if I will be started on Tamoxifen or Arimidex. She told me the next few years are the high risk time which made me scared! I feel I have mostly kept a very positive outlook tho and hope to keep that up. I had been dreading my 50th bday in March but after cancer I choose to celebrate and pray for many more!

By the way.....I met 2 patients at my oncology clinic who had each had one breast removed. One of them was going to have the other removed after finishing all her treatments. The other one was making an appt for a mammogram to her remaining breast. Personally, I am relieved to have had both off in the same surgery! Even the plastic surgeon said it's easier for reconstruction to do both- it's harder to match. If you only had cancer to one side it might be different but when it's both sides I would think about the double mastectomy.

Good luck to all of us!