Marsha, I didn't tell phylly8 to have a double mast. I was clarifying her question on whether a single mast would prevent a new primary on the "good" side, which actually ties in with Kleenex's point that ILC doesn't "spread" to the other breast. It's just that statistically, a woman with ILC has a 30% chance of developing contralateral bc. So a single mast to get rid of ILC isn't going to have any affect on the "good" side.

And as far as why no one is worried about your other breast, I would imagine it's b/c you are Stage IV. I went through this with my Stage IV bc mom--once the horse is out of the barn, so to speak, a new primary isn't as big an issue, b/c you're already in treatment for metastatic disease. Although I would think there would be the issue in that you could potentially develop a new triple negative primary which would need chemo. That's something you might want to discuss with your onc.

I was recently diagnosed with lobular carcinoma.  During surgery found and removed a 9cm tumor and all of my 19 lymph nodes on the left side, 17 of which came back positive.  Stage IIIB.  Prior to surgery I had opted for the bi-lateral mast. Lobular is rare as it is and Im looking for all the information I can gather.  I am 48 yrs old and a healthy woman- I still can't believe I didn't, my doctor didnt during my annual 6mths ago, the mammogram didn't 6mths ago, or now even find this sooner.  Ultrasound and breast MRI are the way to go- I do believe they show more. My family and I are very positive and ready for each hurdle as it comes.  I am going to be a pink survivor and kick this cancer in the butt!!  We must do this together!! Prayer is power. 

nanaparth- what size was your tumor?  what stage have they diagnosed you?  I;m scheduled to meet with my oncologist to schedule testing for scans throughout my body on Tuesday.  I need to rest my mind it has not traveled anywhere else.  I also had 98% of my lymph nodes infected.  My doc is also predicting radiation after chemo too. 

Im so anxious to begin testing and then find out results. What treatments are you now currently doing?  Did you ever consider opting for the double mast. like myself?  My right side has suspicious tissue, but tests came back negative.  I opted for the double regardless as Im hoping for no more surgery. So many variables I'm thankful for our similarities even though they are unfortunate.  Sorry to invade this discussion- enjys  

Hi Little-G

I've been finding some recent studies on the net which indicate that the bilateral threat of ILC tends to be exaggerated.  Sorry I don't have the links handy, but you can find them by putting appropriate terms in your browser.  I think I used "lobular breast bilateral" or "mirror."  There may be a tendency toward this, but one Australian study of 57 patients found no instances, and another larger study very few.  Both showed a rate of recurrence in the same breast, both for lumpectomy and mastectomy, low for both, though somewhat higher for the former.

Just curious, but is the mirror affect less with those who had chemo or rads> I haven't loked it up yet since all the research I had previously read discussed the increase of mirroring with ILC.

D

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I AGREE!!!  Mast. is not that painful, the lymph nodes are the WORSE!  I don't wanna scare anyone out there, but lymph nodes are my biggest area of pain now, and my surgery was on 9/19. (double mast and lymph node removal on left side only).  Nanaparth- the exercises are funny huh? My daughter is a ballerina so we laugh so hard when I do that one lol   I'm finally bathing alone and doing light housework.  My bone, CT and PET scans came backnegative which is relieving.  I start chemo the end of October- 8 intense treatments over 16 wks.  I'm anxious yet want to "live" a few weeks before I get sick from chemo- maybe I wont be sick, but my doc says I will be for sure.  What's your chemo plan?  I will know more (doses, meds, etc) soon.

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Most times the chemo before surgery is to shrink a large tumor so that a lumpectomy can be done.

Hi everyone -

I was just diagnosed last Friday with extensive LCIS and an area of ILC.  The tumor grade is 6/9, but no stage yet - MRI is tomorrow morning.  It's all still a shock, as I had no indications of any issues until my mammogram on 10/29.  My regular doc (haven't met with the surgeon yet) is telling me that most likely, I will just need a lumpectomy, but I've been reading that some of you have chosen bilat mastectomy to prevent future bc.   Is this a better option, or do chemo and radiation take care of the rest with little chance of recurrence?  Was your surgeon willing to do this for preventative reasons?  With ILC being harder to detect, I'd think this might be a wise thing to do. 

You need to gather as much informaiton as possible before you decide on the best option. What course is best depends on the size of the tumor, its location, how extensive the LCIS is and where it is, whether or not any lymph nodes are involved, and if so, how many, the status of the tumor cells' receptors, etc. This site is an excellent source of information for someone who is experiencing a BC diagnosis for the first time. Check it out.

I don't know about chemo and local recurrence--I've only heard of radiation as a measure of local control. I'll be interested in what the onc says--keep us posted.

I think often MRI can show cancer in the nodes, but of course, biopsy is the only sure way to tell.

If you end up with negative nodes, be sure that the onc orders Oncotype DX for you, which will tell you how sensitive you tumor is to hormone therapy, and thus conversely, chemo. You can read about it at www.oncotypedx.com

 And here's another, more recent study, that concludes the same thing:

Young Women May Reduce Recurrence Risk with Chemotherapy or Hormonal Therapy

The risk of local recurrence in women under age 40 who have lumpectomies falls with the addition of systemic treatment to surgery and radiation, study shows

By Mary Alice Hartsock, LBBC Staff; Reviewed by Tom Frazier, MD

M. van der Leest, et al. The safety of breast-conserving therapy in patients with breast cancer aged < or = 40 years. Cancer. 2007 May 15; 109(10): 1957-64.

Women age 40 and under with early breast cancer may benefit from adding chemotherapy or hormonal therapy to breast conserving therapy, or lumpectomy, results of a recent study indicate.

Led by Marloes van der Leest, MD, and Lisette Evers, MD, of Maastricht University in the Netherlands, researchers studied data from 758 women who had lumpectomy to determine what factors decreased their likelihood of developing a recurrence.

Study Background

Breast conserving therapy, or lumpectomy, involves the surgical removal of a portion of the breast and tissue surrounding the tumor. Lumpectomy usually is followed by radiation to the breast, or high-energy from x-rays, gamma rays, neutrons, and other sources to kill breast cancer cells that remain after surgery. Other adjuvant treatments, or treatments after the primary surgery, such as chemotherapy or hormonal therapies, also may be used.

Because breast cancers in young women can be aggressive, some doctors recommend mastectomy, or removal of the entire breast, to decrease the chance of recurrence. However, removing a breast can affect body image and intimacy and prompt a range of physical and emotional issues.

Studies have demonstrated that lumpectomy works as effectively as mastectomy in reducing the risk for recurrence among women with early-stage breast cancer. Most of the studies, however, focused on women over age 40. Researchers in this study sought to determine when lumpectomy is a safe treatment for women under age 40.

Study Design

Researchers examined data from 758 women age 40 and under with stage 1 or 2 breast cancer who had lumpectomy followed by radiation in hospitals in the southern part of the Netherlands between 1988 and 2002. Of these women, 329 (43 percent) had adjuvant systemic treatment, or treatment that affects the entire body by traveling through the bloodstream. Systemic treatments include chemotherapy or hormonal therapy. The researchers did not specify the types of chemotherapy and hormonal therapy the women used.

Study Results

After eight-and-half years of follow-up, 95 women had been diagnosed with a local recurrence (the breast cancer returned near the original site), and 59 women developed a breast cancer in the opposite breast. After follow-up periods of five and 10 years, 9 and 17.9 percent of women developed a local recurrence, respectively.

Women who had systemic treatment were 50 percent less likely to have a local recurrence or develop a cancer in the opposite breast than women who did not have systemic therapy.

The researchers said systemic treatments such as chemotherapy and hormonal therapy should be considered in women age 40 and under undergoing lumpectomy. However, they did not specify whether some medications were more beneficial than others, and they did not discuss whether any systemic therapies were unhelpful or had adverse effects.

What This Study Means for Me

This study was a multivariate analysis, meaning the researchers analyzed more than two factors that could have contributed to a recurrence. More research should be conducted to confirm these findings; for example, a helpful study would directly compare the recurrence rate of a group of young women with stage 1 or 2 breast cancer who receive lumpectomy and radiation to a group that also receives adjuvant treatment.

The researchers noted that larger studies are needed to examine the types of adjuvant systemic treatment that reduce risk of recurrence for women undergoing lumpectomy. These studies may uncover whether certain treatments are better or safer than others for young women undergoing lumpectomy and whether the benefits of the treatments outweigh the adverse effects.

If you are under age 40 and have been diagnosed with early breast cancer, your doctor can help you learn about your options for surgery and further treatment. This study may help you weigh the risks and benefits of adding chemotherapy to your treatment plan, in addition to some of the new tests like Oncotype DX, which can help you determine your risks for recurrence if your cancer is ER+.

You should also be aware that certain types of chemotherapy and hormonal treatments can impact your fertility. Sharing your plans about having children with your doctor may help you to design a treatment plan that is effective for treating your cancer yet will help preserve your fertility.

Read more about the young women, lumpectomy and recurrence study.

You're welcome. I actually learned something also by looking these studies up--I'd never thought about chemo in terms of local control before. I was 38 at diagnsosis, so the studies made me feel even better about my chemo choice.

Keep us posted on the MRI report. You're making great progress for just having your biopsy a week ago! The whole cancer thing makes one's head spin, especially in the beginning. I'm glad you found us here, b/c you will learn so much from this site and the other women, and get tons of great support.