invasive lobular carcinoma
Comments
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Hi everyone,
I'm a babyboomer, new to the computer & this ILC-Stage2A,Grade2,EP+,HER2+. I'm a retired nurse with a daughter in med.school who will be married Dec.20,2008. Recently gave her this news & now she's consumed by research for me. Added to this is that I had DES in 1970 (banned after that)with my first pregnancy to prevent miscarriage that happened anyway. I had 3 more miscarriages then my daughter. Now concerned about her & if the DES 5 years previously could have effected her too. I had a LMRM on 10/23 & will start TCH then rad. & Arimidex. Hopefully, these are the right choices to treat this. Good luck to everyone!
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I posted several weeks ago just after I found a large lump in my breast while in the U.S. Well we are now back in Costa Rica and because our internet has been down until today I have been unable to update. Well I will skip to today. I had an ultrasound which showed to lesions in the right breast and one in the left. After lumpectomy on the right, I was found to have IDC in one tumor and ILC in the other tumor on the right. On December 11th I will have a radical mastectomy on the right and biopsy on the left. I requested bilateral mastectomy but my oncologist said it is better not to do at the same time because of complications? This is new to me and any help would be great!
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Hi, Mrs. R--I'm sorry you had to join the club, especially while in a foreign country. You'll be able to get the info and support that you need here, though.
Is your surgery going to be in the USA or in Costa Rica? In the States, it's very common to have a bilateral mastectomy all in one surgery. In fact, I would think it would be preferable to just have one surgery, otherwise you'd have to go under anethesia twice. What complications was the onc worried about?
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And hi, Kimsmom as well. You win a special award for having an HER2 positive ILC tumor--those are very unusual. ILC is almost always HER2 negative. TCH should be a very good combo for you.
I have talked to other DES women who developed bc and who wondered if there was a connection. I have never read any clinical papers that concluded as such--I've just heard antecdotal evidence. Maybe your daughter can find out more through her research--I"m glad you've got her to help you. Keep us posted on how your chemo goes, and you might want to check out the chemo section of these boards and join a thread for women starting chemo in November 2008.
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Nash, I will be having surgery here in Costa Rica. We are missionaries here. I am not sure why my surgeon is opposed to a bilateral at this time. He speaks mainly spanish and I speak mainly english, but I did have an a pastor's wife with me who interpreted. I agree I would rather have them both at the same time, but he said that it may not be necessary. My mother and her sister both have had bc in the past 8 years also. Our insurance is with the government medical system, but we outside to private source for the lumpectomy on the right. I trust this doctor and it is basically what the doctor who did the lumpectomy said, although he said he would agree to a bilateral if I was sure. Anyway, things are very different here especially in the government system. It seems you wait in line to wait in line. So I feel very blessed to be having surgery in only 2 and 1/2 weeks. Thanks for any help. I think it helps to just be able to vent. On the plus side however, is that they give you copies of all of your reports.
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I was diag. with ILC & LCIS after breast reduction surgery 11/13. I had a .3 cm tumor grade 1, ER+ PR +. According to my breast pathologist & plastic surgeon it is rare to find this in reduction tissue. Is there anyone out there who has had the same experience?
It has been helpful to read your posts. Thanks, Laura
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My mom was just diagnosed with lobular carcinoma invasive, which was found during breast reduction surgery. The doctor (Kaiser Permanente) is saying that since she had the reduction and they moved everything around, they want to do a double mastectomy and remove all of her lymph nodes.
Seems pretty radical to me since the cancer found was minute and the doctor says it is minimally invasive.
I am looking for ANYONE who has gone through the same thing (i.e. cancer after breast reduction) to get help and doctor referrals.
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My mom was just diagnosed with lobular carcinoma invasive two weeks after breast reduction.
They want to do a double mastectomy and remove her lymph nodes, which appears to me to be radical.
What did you do and can you recommend anyone as we do not believe that this is the only way to go.
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I am new to this having just been diagnosed with BC. I have a question and hope I am in the right spot. I have had heavy metal poisoning for 8 years. Since there is no family history of any type of CA is it possible this may be a contributing factor?
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TantaM, family history is just one risk factor for breast cancer - you can read about known risk factors at the main Breastcancer.org site, here, One of the risk factors listed there, Exposure to Chemicals in Water, mentions heavy metals testing.
The Mods
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If lobules carcinomia is not a true cancer why is it treated like one. I have been reading many of these posts and I don't understand why such aggressive action is being done.
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Tanta - invasive lobular carcinoma (ILC) is cancer on the other hand LCIS - lobular carcinoma in situ (LCIS) - that means it hasn't got outside the lobules in the breast - is not.
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Thanks susieq58, if the dx is LCIS would it be wrong to assume with just one small lump, it could be watched and no treatment given at this time? Or is that unrealistic?
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Some treat LCIS others don't. Have you had a biopsy? The report from that should say what they found. It's probably best to get whatever it is removed to make sure. My ILC was removed and the report said there was LCIS in the margins, so there could be an invasive cancer near to it. I've never had the LCIS that is supposed to be left there removed and it doesn't show up on MRI's. The main thing was that they got the invasive cancer.
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I was diagnosed with ILC and took Femara (an AI) for three months before surgery. The tumor did shrink during that time which was confirmation that I had the treatment for my cancer. I went to surgery July 2011 with that plan of bilateral masectomy (due to risk) and reconstruction. Ended up with Rt masectomy only since 14/15 lymph nodes were positive.
Had chemo (TAC) followed by radiation therapy. I am now on Aromasin (AI) since Femara caused joint pain. Once skin heals, I plan to go back for left masectomy and bilateral reconstruction. I didn't get the optimal plan we had at the beginning but I got the best care for my cancer and prognosis.
I always seemed to fall outside that 'norm' during my care (things like my port flopped over) but it is still just one day at time. But - a year later I am cancer - free and that was the ultimate goal.
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I have been dx with ILC stage 1. My pet scan was negative. The plan is to do a lumpectomy with
some lymph nodes removed for testing, followed by eigther 8 weeks of radiation once a day every week day or 1week twice a day. After that or during start the estrogen suppresor. Does anyone have an opinion on 8 weeks total breast vs one week twice a day just at the site. Does the radiation
make you really sick? is there any pain involved. I am totally in the dark so any heads up would
help me a lot. At this point, is a 2nd opinion a good idea? Should it be the surgeon or an oncologist. -
I didn't go for any second opinions but my sisters are both nurses and I have been in the medical field (radiology) forever. The process was not unfamiliar to me - it was the fact that is was happening to me that was the shocker.
I did not get sick or have pain with radiation. I had daily radiation for seven weeks. I did have blisters that started about 5-6 weeks into treatment. Radiation ended March 9 and my wounds are healed.
There is a good book I constantly used as a reference - Breast Cancer Treatment Handbook: Understanding the Disease, Treatments, Emotions, and Recovery from Breast Cancer by Judy Kneece. The book is well written and really helped me understand the next steps and the options. There is a list of good websites in the back of the book that were also helpful. The book is available on Amazon.
Hope all goes well.
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Hello, cancer warriors! I'm looking for info that can help my beautiful mom who was diagnosed in January with Invasive Lobular Carcinoma (ILC) tumor size was 6cm, neagative nodes, stage 2, grade 2, ER positive and HER2 positive. She has already had a very smooth lumpectomy and was told she was only going to need radiation and aromatase for 5yrs after radiation, but when she went to Oncologist she was told she needed chemo due to tumor size of 6cm, which was first diagnosed to be 2-3 cm by ultrasound and MRI, but when surgeon got inside breast, he actually had to take out more malignant tissue due to these very common type of starburst in shape malignant lessions coming out off of the tumor as well, so total tumor was then diagnosed to be 6cm. Which she wasn't informed of after surgery..
She was shocked to say the least, as well as the rest of the family when the Oncologist informed her of the need for Chemotherapy. She starts her chemo next Monday May 7th. I went with her for her chemo education this past Friday and was just overwhelmed myself with the schedule of meds she is going to be on as well as all the over the counter meds they told her to buy and have on stock at home for the nasty side effects. I am just trying to find out what where the most common side effects that most women experienced on the particular chemo drugs she is going to recieve.
She is going to be give Cytoxane=mustard gas (scares the hell out of me) and Taxotere=Docetaxal, these are the two chemo drugs and she is going to have 4 treatments over 4 months, every 4th Monday. Has anyone on this forum had these two chemo drugs and if so what were the most troublesome side effects and what did you find helpful to manage them, if manageable at all?
I am so worried for her, she is 68 and in good health, but I just worry and feel so bad that she is going to have to endure this. I'm hoping that all the meds they are giving her to counter act nausea, diahhreah, vomitting and so forth..... work! Her Oncologist seems to have all the bases covered on prevention of side effects or counter action to help reduce severity, but I just feel horrible that there is nothing I can do to prevent or take away the suffering she might have. She is a Christian and is stedfast in her walk with GOD, so she says she is not scared. I am also a Christian as well and am also stedfast in my walk with GOD, but I'm still scared for her. Besides prayer, emotional and physical support, I'm seeking other helpful tips on helping her through this journey. If there is anyone that can give info on over the counter meds, diet, and so forth that helped them through the chemo, please let me know. The only vitamin they suggested was B6 and told her she could eat whatever she could tolerate, and snacks and 5 small meals will help her keep foods down. We know how important hydration is and she drinks lots of water already, so that shouldn't be a issue. But anything else that anyone knows works well,please let me know.
I really appreciate any info that y'all can share that might help her. If anyone took these same chemo drugs and had same type cancer, with same diagnosis, similar tumor size, stage, grade, ER positive and HER2 positive, could you please let me know if treatment was successful, and if you are in remission, how long and your experience. I'm just so worried for her, and scared.She is such a strong woman and so unshakeable in her faith, that I know she will and can endure this journey emotionally, I just worry about her physically. Please let me know what I can suggest or do to help these physical strains she may endure, that at her age may make this journey for her harder. Prayers are being sent out to all the cancer warriors who are in their battle or in remission! Hugs from me.......in San Antonio!
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Hi TatanM, LCIS is cancer! Don't let anyone tell you different. Any malignant tumor in the breast or anywhere else in the body is cancer. The difference with LCIS type of cancer is that it is self containing, meaning it doesn't spread out to other tissue, it only grows larger within the tumor site. It predisposes you to an invasive type cancer that can spread and matastasize in other parts of your breasts or body sometime later in life, it's a pre-cursor you could say. It is still cancer, other wise it would not be called "CARCINOMA" and it is not normal breast tissue and should be erradicated, however your General Surgeon and Oncologist decide is the best way to do so, is their decision on the best treatment for your tumor size, location and so forth. But whoever says it is not cancer, is unfortunately wrong. Some consider it not to be because it doesn't spread or matastasize itself, but it is still cancer tissue. I would definitely get well informed on LCIS and read as much info on it and ask as much info about it from your doctors and also get a second opinion......ALWAYS!!!!! Good Luck, prayers for you from San Antonio.
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Regarding LCIS, I know they say that it predisposes one to cancer of either ductal or lobular type in that breast or the other, but not necessarily the same site, I did have it in the same site. In both my biopsy and pathology from surgery, they found both LCIS and ILC. In fact, they ran extensive tests on the pathology to make sure it was LCIS and not DCIS. So whatever they say about LCIS not turning into ILC in that spot, I am proof positive that it can and does. I only wish I had known about the LCIS in advance, but I did not. ILC and LCIS are so hard to find.
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Missy, My case is very similar to your Mom's. PM me if & I will send you my phone number to talk if you like. Chemo is tough but doable. There are chemo threads on here that I found very valuable getting through it. In this day of teatments for side effects, your mother should not have to suffer. We are all here to support you & her through it! Hugs, Joyce
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hi my ILC was found as an incidental finding after 2 biopsies that stated I had only LCIS. After hearing only LCIS, a few days later another report came out by the way ILC. 3.8mm which is like a 20 point diamond.
I had a bilateral and hope its the end....
best of luck
chocolate
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Does anyone know if there is a chemo that works better for lobular. My MO here seems to treat all types the same. I am going to Boston today for a 2nd opinion but I figured you ladies would know best as you have been through this. The other issue I am facing is that when they thought it was only 4 pos. nodes they did an oncotype dx and my score was a 6.
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Dianarose--Same thing for me. I was told that lobular and ductal are treated with the same chemo. This was at a university national cancer center. I had neoadjuvant chemo before surgery. They thought my tumor at that time was around 7 cm and final pathology was 1.8 cm. I had A/C (adriamycin/cytoxin) 4 DD and Taxol 4 DD. I thought I'd share my experience because we are similar in stage and type of cancer. I was not given or permitted to have the Oncotype DX because they knew I already had a positive node. A 2nd opinion is always a good thing though.
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Mary625- I guess I am just terrified of chemo. I didn't have any large tumors, just a ton of little bastards. Did you have your ovaries out? My are coming out when I do my exchange. Lobular increases the risk of ovarian cancer by 40%. I don't need them anymore as I am 51 and sick of periods anyways. I want to ask the doctor today if hormone therapy can actually starve and kill cancer or does it just keep them dormant.
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Dianarose, what is your source that says ILC increases risk of ovarian cancer by 40%?
Ask about TAC chemo. -
Missy---thank-you for your post describing LCIS, that it IS a form of bc, just a non-invasive type. (I have written similar posts here over the years, when people emphatically state it is not bc) I was diagnosed almost 9 years ago and it states "malignant" right on my pathology report; also, my oncologist strongly disagreed with the radiologist and stated emphatically it IS bc, just non-invasive.; as did my bs. However, my new oncologist (in the same practice, my old one retired) views it more like a high risk marker and will not give a definitive ruling on what to call it. So goes the controversy!!!!!!! (difficult to understand really, as many other parts of the body have non-invasive cancer, and it is still considered cancer). I do high risk surveillance of alternating mammos and MRIs, breast exams on the opposite 6 months, took tamoxifen for 5 years and take evista now for further prevention. I don't really care what they call it as long as it gets treated seriously; however, it does sometimes make me feel like my situation is minimized by others.
My mom had ILC many years ago (stage 1 0r 2, negative nodes)---had lumpectomy, rads and tamoxifen. Doing well after 25 years without a recurrence. Praying your mom does well, it sounds like she has a very strong faith--that and your support will help her tremendously!
Anne
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Dianarose--I did not have my ovaries out. Like Racy, I had not heard the statistic about the 40% increased risk of ovarian cancer. I will have to talk to MO about that. I am 49 and the chemo sent me right into menopause. MO seemed happy enough with that from a breast cancer standpoint so he could give me Femara. Regarding chemo, it wasn't fun but it wasn't as hard as I thought it would be. I was able to lead a pretty full life during chemo, which was from September 2011 to January 2012 and now I am 100% fine. I know not everyone has that experience. Would you be more frightened about the possibility of cancer cells in your body or the chemo? Have they given you any information about whether there was extra capsular extension noted in your nodes? That means the cancer has gone outside of the nodes. I had that.
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Mrs Rocky, I am in Greece and the first surgeon I saw also balked at removing both breasts, because it was not "necessary." Some insurance schemes won't pay for elective surgery, which this is considered. Find out exactly what is going on, because surgeon #2, who is still my doc, said that given my DX with ILC and the fact that I had benign cysts and fibros in the "good" breast, he thought that if I could face the BMX it would probably be a wise choice.
ETA: Ooops! Totally missed the date on the post I responded to.
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