Whats your ILC story?
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As I was reading some of your stories, I found it ironic how many of us had some type of injury to bring the ILC into view. I had rushed through my garage the summer of 06 and slammed my right breast with the side mirror on my Yukon. In Oct., one day I noticed a thickening of the top of the right breast. Had a doc look at it, he said probably nothing, but get mammo and ultrsound. I had had a mammogram every year since I was 35 because I had fibrocystic breast and dense breasts. It never showed up. On this one there was a small suspicious place on right breast. Ultrsound was negative. I was advised to have a Sentimammogram. It is done with injection to the blood stream of a radioactive isotope and it is 85% accurate for diagnosing cancer. Mine was very positive, so I knew that I had an 85% chance of having cancer. I was sent to Houston to the Baylor Breast Center and had a core needle biopsy done with ultrasound guidance. The radiologist doing the biopsy told me that he thought I had ILC. This was from looking at the tissue samples. The pathologist said it was Ductal Carcinoma. The surgeon said lumpectomy with Tamoxifen. A week later they called and changed the diagnosis...4.5 cm ILC requiring mastectomy, chemo and radiation. YIKES. I have already posted the rest of the story.
It is so strange how similar some of these stories are. They told me that Ductal and Lobular have similar characteristics. I guess it not a black and white deal. Gray areas. Sammie Kay
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I am newly diagnosed with ILC. Here is my story. I am 59 years old and in February of 2008 I had my annual mammogram. My Gyn called me back in 2 weeks and told me there were some swollen lymph nodes and he wanted me to see a breast specialist. I went to the breast specialist on 2/29/08 and she told me there was nothing wrong after reviewing my films. But I told her I felt a lump on my left breast. I did not know that the lump was in my lymph node. So she examined my breast laying down and of course she did not feel the lump because it was under my armpit. She sent me home. In 3 weeks I saw an oncologist. He said I needed to have that lymph node removed with a byopsy. During surgery the surgeon determined that it was cancer and assumed it was lymphoma because my mammogram was "clear" . When the pathology report came back in 8 days with breast cancer I had to go through a whole round of tests, PET scan, Breast MRI, Brain Scan. It turned out that I had tumors in both breasts and swollen lymph nodes on both sides. I had a bi-lateral mastectomy and all of my Axilla lymph nodes removed on both sides. When the pathology came back it showed I had stage III ILC. I had 13 nodes involved on the left side and 2 nodes involved on the right side. I am currently in my first go around of treatment. I am having my treatment at Fox Chase Cancer Center in Philadelphia. I am currently in a clinical trial involving Avastan, it is a double blind study, so I don't know if I am getting a placebo. I am also getting doxorubicin and cytoxan every three weeks. I have 2 more of these cycles and then I am on Taxol for once a week for 12 weeks. Once I am done with chemo, I will have 5 weeks once a day of radiation and then on to hormone treatment. It is very overwhelming.
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Peggy, it IS overwhelming! You have come to a group of people who can help you weather all the different steps in this process. My ILC came as a complete surprise and I am not handling it well. This board helps me to get information and see what questions I need to ask. Mine was discovered on a routine Mammogram but they told me it has probably been there for 8-10 years. I have always been very careful to get my yearly mammogram on time. I really don't know how they found it this time. I had Ultrasound and a different mammogram and then MRI and finally opted for lumpectomy knowing that I will probably be facing this again down the road. I was 59 and have since turned 60. I'm 7 and a half weeks into my chemo (T/C) and have been told that I'll need 33 radiation treatments and then 5 years of Femara. Keep coming back to this thread and others on the Board. I have learned a lot! Good luck to you.0
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Wow, Peggy, that's a little disconcerting that the breast specialist declared you fit as a fiddle when in actuality you had Stage III ILC. Just go to show how much one has to be one's own advocate and push when one knows things just are not right. Of course it's overwhelming, but you've come to the right place for support.
Hugs to you, collector--I bet you're handling this better than you think. Being in treatment is really hard. It will get better--I promise. I finished chemo in December and rads in March, and lost my mom to bc in February, and it all kind of sucked. But I'm happy to say that some days I feel pretty good, both physically and emotionally, and I bet you will too. There is a light at the end of the tunnel--just some days it seems just a tad dim!
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Thanks, Nash! You sure had a run of bad stuff with losing your mom to BC, too. I think one of my problems is the relatively few people with ILC. Makes me more nervous. I STILL remember the onco nurse giving me my biopsy results on the phone and cheerily saying that ILC is the second most common breast cancer, like it was really not that big a deal. But I found out quickly that there are many particular pitfalls for us. I;ll keep looking for that light....
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SammieKay---when they found a large mass on my left ovary and suspected ovarian cancer, my gyn did a CA-125 bloodtest and a transvaginal ultrasound. Actually, he told me the CA-125 blood test is fairly unreliable especially in premenopausal women, but it's the only test they have for now (in addition to the TVUS). I ended up with a total abdominal hysterectomy, but fortunately everything was benign.
Anne
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My story is similar. I am 47 with 10 and 14 year old girls. I found a BB size lump May 10. I saw the GP May 20 and was scheduled for a mammo and US May 23. I was sent for an MRI June 11 and met with the BS June 16 for biopsy. Dx came June 18- ILC. When I asked if I should schedule time in September to get this "taken care of" (what a bone head I was), the BS said my cancer "terrifies" her. She wasn't being dramatic, just pounding into my thick skull that this is serious. Met with the onc the next week and started TAC June 26. I'll have 4 chemos, mastectomy, then radiation after. In my perfect world I should be well on my way to good health my January 1. Just in time for Girl Scout cookie sales!
So far after one treatment, my only se is a nasty rash on my hands. Well, my hair is falling out too. I am now shedding faster than my labrador.
Sarah
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Hi everyone, you all sound so interestingl, I am new to all of this, as only was dx 02 June 08, 20th June 08 had RB Mast, and 3 Sentinel Nodes removed, all positive, Pathology is (perhaps a little different in Australia??) ER - PR pos 100% HER 2 neg, I have 2 Indian Files do you know what that means, it is common with this diagnosis apparently, Spec says they don't like to be too radical with surgery, as they know little about this type, and only 5% in the world get this type, waiting for Surgery 1st August to have LB Mast, and Right side Bulk Dissection of Lymph Nodes, then Chemo, have not seen the Onco yet, I guess awaiting the Path from next Op. I feel apsolutely fantastic, I have a wonderful partner and family and everyone except me is in shock mode. Anyone out there who has something similar please respond. I would welcome any feedback. donspink
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Hi PeggyU, I am a bit behind on reading posts and I just read yours today. I wanted to say big ((((HUGS)))) and welcome to our little ILC group. You are going to Fox Chase which I hear is an outstanding place to receive treatment. The Avastin trial is really great. When I was diagnosed I asked for Avastin. I was told it was only being used in very advanced metastastic bc cases and wasn't really available to me. I've heard it can help, so if you have been randomized to receive it that might be a very good thing. The AC you are getting was very effective for me. I had it before my mastectomy so was able to see what it did to the cancer in my breast. It is very hard on your body, by now you are probably well aware of that. Take very good care of yourself. Yes, it is overwhelming. Come talk to us if you feel up to it. I'll be thinking of you.
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Gitane,
Thanks for the Hug. Tomorrow is my third treatment of AC. I won't know if I am receiving Avastin until the first of November when they reveal what arm I'm in. 20% get a placebo. I hope I'm getting it, but if not, I will get it first after the trial closes. This trial is only available to stage III patients because of our high risk of recurrence. Keep your fingers crossed for me that I am receiving this very promising drug. I am very lucky that so far my only side effect is fatigue. Each day I push through. Working full time has been very therapudic for me and has forced me to get up and MOVE.
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routine mammogram showed 'an area of interest'
compression and sonagram increased the interest
core biopsy was cancer-
all this in a week!
in the next 3 weeks:
surgery (lumpectomy)
MRI of both breast, bone scan, bone density,
2nd surgery (re-excision)
onco dx testing (a 13- WOOHOO)
4 weeks past diagnosis, i see the radiologist tomorrow for the initial consult
i am very thankful for women doctors who really care about patients as people-
at the moment- feeling positive and upbeat
i want to live to see my children married and know my grandchildren
my husband and I are rethinking our priorities and values
and discovering just sweet and good life is
we are grateful for a new beginning
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Mine certainly snuck up on me. I was diagnosed with DCIS stage 0 ,in the left breast ,in 2002. I had a lumpectomy and radiation. In 2006, a shadowy area started showing on my mammo's, again in the left breast, but Dr. assured me it was probably scar tissue from surgery and nothing to worry about. After 2 more mammo's 6 months apart, one of the technicians suggested having an ultrasound. They said I should go have an MRI. Had an MRI, which didn't reveal anything.But they said because of my previous diagnosis, they would recommend a biopsy. The Dr. who did my radiation treatments said if I wanted, I could just repeat a mammo in a couple of months. I insisted on the biopsy. Well, the pathology came back with ALH & LCIS. I decided that to prevent another diagnosis, I would just have a bi-lateral mastectomy.Well, the pathology came back showing ILC, spread over an 8 cm area in that left breast. This did not show on any mammo's or the MRI! The surgeon told me she was just blown away with that report.She literally thought she had the wrong report in front of her, and had to double check it! She told me how I had probably just saved my life having that mastectomy.There was no node involvement. I had 4 rounds of chemo, Taxol & Cytoxin.Then a year of Herceptin. I am now done with that and am on Femara.It's been 16 months since that happened. I also had my ovaries removed. You have to be so pro-active when it comes to this disease. I remember years ago, when mastecomy's were automatic with breast cancer. Now a lot of woman are going back to that way of thinking. I wish I had done it when I was first diagnosed. Prayers to all of you, Jackie
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Jackie I have been totally blown away from the stories I have read here. My first biopsy for microcalcs found flat epithelial atypia (a new diagnosis from WHO) similar to ADH but lacking in some of the architecture (whatever) and then my next wide open excision found ALH. This was March and then June. Here we are in July and I found another little nodule/lump but in another area of the breast. My first thought was maybe I will just wait until my f/u in October when I will be having an MRI/Mam and u/s. I have been dealing with a complex ovarian cyst that is causing alot of pain and had to go through a bunch of GI testing (CT scan, other scans UGH) to rule out my gall bladder. I have a small gallstone and they are trying to tell me that my heartburn, indigestion and nauseau is from that. aparently not because my gb is normal other than the stone which like I said is small. Oh back to the breast issue... that is the reason I don't want one more doctor appointment on my list. After reading here again and finding your story I feel like I am being spoken to and told "you better get this checked out". My fingers move over it but it doesn't move. If I mess with it too much I get sore and my underwire hits it and when I bend down to shave it hurts too.
Thank you to everyone who has posted here. God Bless all of you. How strong you all are!
KED
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Hi Peggy U, What are you up to? It's been a while since I read the posts here so I wanted to pop in to say I'm thinking of you. Your last post was almost 2 weeks ago. Hope the treatment is not getting you down too much. Let us know. Big HUGS!
Gitane
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Well I have ILC...then they told me I was complicated because it is also her2/neu and they said most times ILC is not. They have switched my protocol to TCH and the doc thinks this is the right call. They keep telling me I am a puzzling case. Oh well what can I do? Ha, Ha.
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HensonChi, Nobody likes to be told they are a "puzzling case", but being one makes you special enough that they are taking the time to really look at your protocol and make an individualized decision about it. That has to be a good thing, I think. It's especially good that they found out about your Her2 status and are going in a new direction with the right treatment for that. Good luck. and HUGS!
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Sherri,
I have not seen alot of neo-adjuvants on this site yet. I was told by both my surgeon and my oncologist that I would "not" need any more chemo after surgery d/t "great response" from ACT. I thought the next big thing would be to radiate or not. My surgical path showed a ~50% reduction in the tumor but 10 of 10 lymph nodes + after axcillary disection. I asked about more chemo and was told I needed to be restaged. I went for another PET (had one before treatment/it showed large 4cm mass and 2 cm lymph node involvement) and it was negative. Friday my oncologist recommended more chemo (Abraxane and oral Xeleda) and told me to go for second opinion but be back in two weeks with a decision. It sounds like you knew you might have been a candidate for more chemo ahead of time. Also, I am told the drugs are really for use on recurrent BC. What drugs did you get the second time? Did you have to decide which way to go (chemo or straight to radiation and tam)? Thanks in advance for your response.
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I did not have a complete response to my neoadjuvant chemo, either, so I got two more rounds of AC after my mastectomy. Seemed like a good idea to me, so I went for it. I wanted to give myself the best chance I could of getting rid of any cells that made it outside the breast.
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Can anyone on this site recommend someone at MDAnderson that would be considered a specialist for ILC/PILC? I have heard you all speak about Dr. C but is he someone who will see patients? I am also looking for someone from Fox Chase in Philidelphia who is a specialist for ILC/PILC. PeggU, I understand you are very happy with Fox Cahse and I am very interested in Avastin. I am also curious, if you have already had your surgery and your tumors and lymph nodes were removed, how are they measuring a response? I was told I could "not" participate in a trial because I have nothing left to measure.
I am in the middle of trying to gather multiple opinions quickly to determine if I should have "more" chemo after surgery because 10/10 lymph nodes were +, pleomorphic and Grade 3. I had ACT before surgery. My PET shows NED. I know they have no clinical trials to go by so I am going to listen to as many opinions as I can get in a few weeks and than make up my mind on how to proceed. THANKS!
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bumping for the new women here
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Thanks Lynn12, Didn't know about this site. I just notice a lump under my right arm pit. So I went to my Dr. & ask for a manogram. Then call for appiontment at the hostipal in Fl. Two month wait. The friday before the test, I got on the computer typed in breast ridges. (just notice half my right breast had ridges). Sure enought it took me to the breast cancer site.So I had a idea that it was cancer. Monday had the test, the tech said they had to do the pictures over. Next time the door open the rad Dr. & tech were there. He just came out and said you have breast cancer. (No waitting there!!!!!!!!!!!!!!!!!) Also said he didn't see any reason to a bisopey. He called my family Dr. That night my Dr. called said I was to see the surgren on wed. Saw him did a pet scan Oh dx on April 16 2007, then on April 30 I had my mast. 22/37 nodes. No one has mention the other breast. Kind of funny April 30 1999 I had my kidney removed for cancer. 8 years apart. Do you think my next cancer will be removed in April 2015????? LOL
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Marsha? What are you talking about when you mention 'ridges'?
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They looked like small hives running in a row. They didn't itch! Only had them on the bottom half of the breast.They felted like the little bumps on a navel orange. Hope this helped
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Oh!!!!!! they ran from nipple to bottom of B. Looked like rays running out .
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I found what I will call a thickening in my rt. breast while putting on lotion one day late Sept. 07. My Dr. sent me for a "diagnostic mammogram". After about 10 shots of the area the radiologist said he could not see anything abnormal on the films and sent me to have an ultrasound. The US showed 2 spots so the radiologist ordered a biopsy. A few agonizing days later I found out that I had ILC. After a breast MRI (which found a 3rd spot) and consultations with a surgeon and an oncologist I decided to have a double mastectomy. The surgeon pushed for a lumpectomy but the onc said double mast. because lobular is "tricky" and has a tendancy to jump to the other breast. That's all I needed to hear and I have had no regrets! I ended up having 3 positve sentinel nodes so a week later had an axillary node dissection where 5/5 nodes were negative. I started my 8 rounds of dose -dense chemo on New Years Eve 2007. 4--adriamycin/taxol and 4 cytoxin. After the 5th round I ended up in intesive care for 9 days with pneumonia. After recovering from that my remaining 3 chemo txs. were a piece of cake. I finished chemo on April 25, 2008. I started taking tamoxifen in May 2008.
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I'm looking for some long-term hope here. My story:
July 2007: Near my 50th birthday, I had a hysterectomy due to benign tumor. A CA-125 test was negative.
September 2008: Two months past 51st birthday, had my annual mammogram. There was a thickening on my left side that I attributed to mastitis, which I've had before. It was sore and I've always heard BC tumors didn't hurt. So I wasn't worried even when I got a letter saying to repeat my mammogram. The letter said is was probably nothing.
Hurricane Ike hit and everyone lost power, including the hospitals. When I showed up for the repeat mammogram, the hospital was on generator power. They still felt something was suspicious but again I was told it was probably nothing. Since the hurricane was keeping people home, they could take me immediately for an UltraSound. The radiologist also suggested an immediate core needle biopsy -- he wasn't busy because of so few patients -- and he felt the area was scar tissue from dense breasts.
To everyone's surprise, the biopsy showed ILC and LCIS. The MRI showed additional microcaclifications in the same breast, but no nodal involvement. My surgery was last Tuesday, and I know that at least one node was positive. I should get the path results on the other nodes tomorrow.
Every time I am told not to worry, the results are worse than anticipated. Okay, so I'm only 51 and I have no intention of losing my life to this disease. But I'm pretty scared right now.
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Hi Texas,
I'm sorry about what you are having to go thru. It does suck and it is scary. I think everyone of us can agree to that. When do you go back in again? Do you have a game plan yet? Just make sure you understand things as much as you can. Go with what you feel in your heart. I don't have any words of wisdom for you, but if you need to talk, I can do that. There are many women on this board that have been thru alot and are still here! That's encouraging to all of us!
g
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Big HUGS Tex!
This IS scary, but it is NOT a death sentence! We all know how you feel........
The best advice I can give:
Don't to let your mind take you to "those places" in the middle of the night! Our imaginations make things far worse than the reality ever does.
Let yourself feel what you feel-you will have good days & bad days-YOU ARE ALLOWED! You will find your way & lots here will help.Take someone who will act as your adovate & ears at your app'ts--write down your questions & the answers. If you don't understand something they say-MAKE them explain until you do! They are being paid big bucks--so treat them as your employees--they are!
Do really nice things for yourself as often as you can & make a plan for some special reward when you are done facing something you'd rather avoid--we all need those little carrots out there to urge us on!
Come here & get information, support, a laugh or a kick in the butt---whatever you need will be provided by your bc sisters!
Let us know how you are---or PM me if you like! Hugs--be well & stay strong!
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Hi Texas, The words of wisdom here are right on. I'll just add that you can come here for information, understanding, or just to hang out. I have found that this is a great place to come because the ladies here really understand this experience in ways nobody else can. Love and hugs.
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Hi Texas,
I'm an ILC survivor of two years. I was dx a month before turning 50. I had a lumpectomy which left a very small scar and an SNB. I was told I may need chemo and radiation but after my oncotypedx they determined that I didn't need chemo. I have been reading a lot lately which questions if chemo is effective for ILC. I know hormone therapy is still real good if you have estrogen + tumors and you must have radiation if you have a lumpectomy. I also had MRI's on both breasts prior to surgery so the doctor knew exactly what to expect. I'm happy to say that I feel great and all my tests since the surgery have been good. I wish you luck and can tell you that this journey gets easier with time. I think the worst part was in the beginning when I didn't have a clear cut plan. Good luck and take care!
Nancy
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