Topic: invasive lobular carcinoma

I had ILC twice and am now having a bi lat and will then go on AIs.  I already did tamox and that did not work for me so it is on to AIs.

Are the recommending a mast?  Not sure why shrinking the tumors is important unless you are going for breast conservation?

ILC is usually multi focal and can be tricky to treat....be sure you do plenty of research as each type of BC has specific issues to deal with.

Valerie

Hi...I was diagnosed with ILC in November 2007.  I had sentinel lymph node biopsy in December and since it wasn't in my lymph nodes, the doctor recommended Femara to shrink the tumor.  I am Estrogen positive. My tumor was 4x3 cm's.  It is shrinking.  I go back in May to my Oncologist.  Still not sure if they will do lympectomy or mastectomy. I work full time and have no side effects.  The only difficulty is the waiting.  I hope this information helps you. 

Hi, priz. Sorry you had to join us, but welcome. An AI is a form of hormone therapy called an aromatase inhibitor. It works to stop the body from producing estrogen, and thus fueling hormone positive tumors. Most ILC are hormone positive. However, since you're premeno, you'll have to be on Tamoxifen, which is another hormone therapy that also stops the tumor from being fueled by estrogen, but in a different manner (it blocks the estrogen receptors). Premeno women can't be on an AI b/c our ovaries are still functioning.

As far as good treatment options are concerned, I think you will find that most oncs treat ILC the same as IDC. They look at the size of the tumor, the hormone receptor status, HER2 status, tumor grade, your age and number of positive lymph nodes, and go from there with a treatment plan.

If your nodes are negative and your tumor hormone positive, you can have Oncotype Dx done. That is a test done on the tumor after surgery that looks at its genetic makeup. The test produces a recurrence score that places you in a low, intermediate or high range. A low score implies two things--that there is a low risk of distant recurrence based on the DNA of the tumor, and that the tumor should be very sensitive to hormone therapy (and thus one can forgo chemo). A high score is the opposite--the recurrence risk is high,  the tumor is less likely to respond well to hormone therapy, and thus chemo is warranted. Most women seem to fall in the intermediate range, which doesn't really help the decision making process much, but the test is worth doing.

You said you have a large family history of both bc and oc--have you or anyone else in the family been BRCA tested? 

ejnys--good luck with your neoadjuvant HT. Just from what I've been reading, it seems that more and more oncs are leaning towards primary HT whenever possible, rather than the blanket chemo approach that they've taken in the past. I think Oncotype Dx has really changed how the oncs look at bc. Shrinking the tumor w/HT first will either work or it won't, just like neoadjuvant chemo, and it certainly is worth a shot.

In case anyone else has something similar to what I have and this information would be helpful to them . . . I wrote Ask an Expert:  http://www.hopkinsbreastcenter.org/services/ask_expert/index.asp?cat=1

and told them my report: #1: infiltrating mammary carcinoma, no special type, low combined, histologic grade, low proliferation rate w/calcifications .9 C in greatest dimension # 2: intermediate grade ductal carcinoma insitu; progesterone receptor negative and estrogen positive And my 1st app. is May 2. Do you know anything about this diagnosis? Is it going to change when I get surgery? What are my chances of survival? I'm a nervous wreck.

And this was "Ask an Expert's" reply:  both biopsy specimens are cancer. I'm not sure if they are located in different areas of the breast or not though. it doesn't say. #1 is a combination of ductal and lobular invasive carcinoma. slow growing. less than one cm in diameter, so appears to be a stage 1 at this point. the other #2 biopsy is noninvasive breast cancer-- DCIS, also known as stage 0. if these are in the same quadrant than lumpectomy may be possible to get them both out. lumpectomy would be followed by radiation. if occupying different quadrants of the breast then mastectomy would be needed and no radiation. its estrogen positive-- that's good! so hormonal therapy may be recommended after surgery. the need for chemo is unknown right now. won't know until more informaton from pathology is determined from the surgery specimen.

Thank you for the info.  I actually have 3 tumors in my breast, but no lymph nodes are involved.  The tumors are estrogen receptor positive so that's why the Dr thought hormonal therapy would be best.  I go back on the 29th for an ultrasound to see if they are shrinking.  I chose this route because I already have been cut apart so much from my esophageal cancer that I did want to try a less invasive surgery if possible.  The Drs said that this is the future treatment for breast cancer because lobular cancer doesn't always respond well to chemo.  I don't have many side effects from this treatment other than some sore joints and it seems like a wear out easily.  So much easier than going through chemo and radiation again!

Hi tt214,

My understanding is that LCIS is located in one spot and ILC is invasive meaning it can have mutili focal points.  ILC tends to be flat and can be difficult to diagnose/find given its nature.  My recurrence of ILC was only visible on MRI since it was small 6mm and flat.

My original treatment was a lumpectomy for the 1.5 cm tumor and rads followed by tamox.  My tumor was grade 1.  You need to speak with your Doc about the grade and type of your tumor.  Some treatments work better on higher grade tumors and not as well on lower grades.

I have now had a bi lat and my decision was based on my age, 48, and my desire to insure that I get the BC behind me.  I also had my ovaries removed so I can start AIs since the tamox did not work for me.  The choice is different for everyone depending on circumstances.

Wishing you the best of luck,

Valerie

tt214...

When you're deciding on whether to have a bilateral, one-side mastectomy, or lumpectomy you have to find your own personal reasons for your decision.  It helped me to write a list and refer back to it when the going got tough.

The research shows that surviving ILC is the same whichever surgery you choose. The reoccurrence rate for having bc return to a breast is higher if you choose not to have a bilateral.  If you have breast tissue, you need to carefully watch with mammograms, MRIs and ultrasounds.

I chose a bilateral even though my ILC and LCIS was stage 1.  Some of my reasons:

1) I had lobular cancer that tends to swing to the other side
2) A very lumpy "good" breast that I'd had 3 needle biopsies on already. The pathology report found 5 more lumps that would have needed biopsies.

3) I wanted to try to avoid having lymph nodes out on one side for lifetime I.V.s and blood pressure
4) I didn't want rads that are automatic with lumpectomies (rads can cause lymphedema, etc)
5) Less breast tissue=less estrogen=less cancer reoccurance (hopefully)
6) Matching foobs

7) Family history-Mom with ovarian c, sister with bc

It's a tough decision, one of the many difficult aspects of cancer.

sally 

gracejon,

I think drs are pushing women to have lumpectomies, since the survival rate is the same whether you have a lump. or a mastectomy.  But they don't consider that the radiation with a lump. can make reconstruction difficult or impossible, and can cause lymphedema.  There is the added stress and pain if you also have lumpy breasts that will be forever suspicious, and will require biopsies.

The Ireland study was published in 2002, but there are many similar studies finding the same results.

sally 

tt214, my understanding is that LCIS is not invasive, that is it is still contained within the ducts/lobules. ILC is invasive carcinoma that has grown through the basement membrane and thus is carries risk due to potential systemic spread. Both LCIS and ILC could be, and often are multifocal (more than one focus of tumor) and multicentric (in more than one quadrant of the breast). They are also more likely than IDC to show up again in the ipsilateral (same) breast after lumpectomy and in the contralateral (opposite) breast even after treatment, although the endocrine treatments, AIs and tamox., are supposed to be good at preventing this.

gracejon and other ILC ladies, I had a similar experience with asking for a prophylactic mastectomy. I was discouraged by every professional I asked. However, I found that nothing can detect LCIS before it becomes invasive, not even MRI. Also, DCIS is usually not caught either by mammogram before it becomes invasive unless there are calcifications. MRIs are so sensitive there will always be false positives. I experienced that once in my right breast, and endured a MRI guided biopsy. It was not something I would wish on anybody! Knowing that an invasive bc means probably going through chemo again, and that ILC tends to show up in the other breast, I just couldn't live with the worry. It's hard enough for me without that. Both boobs are gone and I don't regret it at all. An individual decision for sure.

I also was just diagnosed...have surgery on Thursday the 22nd of May.  I still haven't decided what to do yet. I am waiting for the latest results.  Very concerned about how I am supposed to decide about expanders if I don't know if they will do radiation yet.....very very confusing.

hi girls, was dx yesterday with ILC Grade II, everyone seems to be grade I, help I'm s******g myself. Lost lovely hubby in October to cancer, someone up there's got it in for me it feels. I am 47 with 3 fantastic kids. Love to receive your inspriation and support.

I had ILC grade 2, mastectomy, chemo, no radiation.  Did reconstruction 4 years later and am very happy with it.  Am NED right now.  Hope all turns out well for you.  How old are your kids?

Tottey,

I am grade ll.  I was diagnosed in Jan and had a bilateral mast with chemo.  I don't hae much to offewr you right now as I am not that far out myself.  But I know that reading the posts has helped me and I wanted to respond to you.  It helped me so much when someone wrote back to me with a few words of support and advice.

Good luck to you.  You will be OK!!

Victoria

Tottey, I'm so sorry to hear that cancer has visited your family again.  Many of us are not grade 1, so you are not alone.  I hope you will come here and talk to us.  We will help any way we can.  Gitane