Why is ILC such a mystery?
As I near the end of my treatment I can't help but wonder....why is lobular cancer such a mystery to most women? We have all been trained to look for lumps. I brought my breast to my doctor's attention two years before I was diagnosed. It was getting smaller and there was increasing thickening. The mamo and ultrasound tech kept telling me that I had "dense" breast tissue.
By the time they finally did a biopsy the mass was about 8cm and invasive.
We should all remind our lady friends that BC is not just about lumps. Everyone should be looking for thickening, shrinking and that feeling of letdown. I'm sure there are many other non-lump symptoms as well.
Had I know about lobular cancer, I believe it would have been diagnosed while it was still non-invasive, and my treatment may have been a lumpectomy and radiation and I may have been able to skip the joys of chemo and a bi-lateral mastectomy.
I'm not crying over spilled milk, I'm just amazed that with the gazillions of dollars going into breast cancer research and education there is not a stronger emphasis on lobular and inflammatory BC.
Just a thought!
Almost through my rads! Yea!
Comments
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Congrats on nearing the end of treatment!
My breast shrunk considerably right before diagnosis as well.
I agree about the need to educate about bc subtypes. When I was diagnosed, I was already the caregiver for my Stage IV bc mom. I'd done tons of research on her HER2+ disease, and considered myself well-read and well-informed about bc. But when my path report came back ILC, I had to go look it up--I had no idea there was such a thing, much less how it presented.
I was watching a WNBA game last night, and the Los Angeles women's team was all in pink b/c the game was a fundraiser for Breast Health Awareness through the Kay Yow Fund (which funds research and awareness of all women's cancers, not just breast). Maybe we need to take up a letter writing campaign to Komen and other non-profits like this KayYow fund, who think they're getting the message out to women about bc awareness, but really are getting an incomplete message out.
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Linda,
It seems to me we know what we have to know when we have to know it. When my Dad was dx'd with NHL, or my MIL with brain cancer I tried to find out as much as I could, but I would never have thought of researching something so specific that didn't impact me directly. It was that way for me with bc as well. Although I am a nurse I had worked in geriatrics for most of the past 20 years and i felt Iike I was pretty knowledgable about things like diabetes and Alzheimer's, I never gave a second thought to bc or how one was different from another until I had to know.
I sure wish the primary focus was not on "lumps" because as we know most of us lobular ladies didn't have a well defined lump. Getting the word out about changes in breast tissue of any kind have the need to be evaluated. Doctors need to know this as well!
MM
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Not only do women need to be educated, doctors do, too. Gynecologists aren't finding it on breast exams. Radiologists aren't finding it on mammos. My breast surgeons (I saw 2) could both feel the masses less than a month after my gyn visit telling me my breasts were fine. My surgeon also said she could see the tumor on one view of a mammogram that had been taken 2 years previously.
I also think women who take HRT should be given more information about BC risks, and baseline and annual MRIs because of the increased risk of lobular cancer and because HRT causes breast tissue to become more dense, making mammograms less effective. If that had been standard of care, my cancer would have been diagnosed before I fed it for 2 years with estrogen/progestin.
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Oh ladies, you are so right. I am starting to notice articles popping up in magazines getting ready for October, BC awareness month. The one I just read, made no mention of ILC or IBC, and stated that mammography is the "gold standard" in diagnosing BC. I think I will write letters to the editors of these publications expressing my concern. Maybe if enough of us do something like that it would help get the word out. Nash and Gitane, I totally agree with you. I actually feel like it is my responsibility to let other women know, and especially to get the message out in a bigger way like letters to Komen, etc. If it weren't for this site, and all of you I would feel alone in this, thank you.
Susan
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Boy, this discussion really hits home with me, too. And, Gitane, not only could I have written exactly what you did about being assured HRT (which I took for quite a few years) was safe for me and always having clear mammo's, but I was interested in how similar our dx's are -- multicentric bc and 1 positive node.
I'm not sure what the answer is re. educating others is because, at the moment, I don't believe most insurance companies cover MRI's unless you've already been dx'd. So I think it will be really hard to convince women that MRI's may be a necessary test if they have to battle their insurance company to cover it or pay $4000+ out-of-pocket to get it done. Deanna
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Couldn't agree more with what everyone is saying. I am now using the "scare tactic" to educate my friends and family about ILC. When I tell them that I had a "clean" mammogran in June and then was diagnosed with stage III ILC 4 months later they all gasp. I tell as many people I can that there are new cancer types being discovered that do not show up on mammograms and that they must feel themselves up, routinely!! I have to say though, that I am very blessed to have doctors that are on top of it and up to speed...they also go to bat for me with my insurance company to get everything covered.
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OMG - I am amazed at these posts. My first mammo showed a large area of dense tissue - for the following five years, after each mammo, I was continually told - "it's JUST dense tissue". I trusted them. Each month during my period, both breasts would swell and become sore. Then, the bad breast no longer got swollen or sore. I asked my gyn why this was happening and he said it was nothing to worry about. THEN... five months later - when I felt a pea sized lump - he ordered a diagnostic mammo. Low and behold... the pea sized lump showed up - and all of a sudden, the large area of dense tissue was taken seriously. The subsequent biopsy revealed that the pea sized lump, the large area of dense tissue and another lump were ALL malignant! I was so angry! The dense area was actually a 4cm rock hard tumor! I still get nauseous when I think about it. Had I known then, what I know now, I would have insisted that the dense area be biopsied long before my dx.
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As a follow up to my original post I wanted to mention this little tidbit.
I was hospitalized in 2005 and 2006 for massive pulmonary embolism. I was a real mystery to the doctors. Why did such a health woman keep presenting with dozens of blood clots in her lungs? They told me that since the clots were apparently not coming from my legs, that they could be forming as a result of cancer forming somewhere in my body. So they scanned and poked and prodded and looked and looked for cancer. I'll never forget the day they sent me down from ICU for a mammogram! I'll also never forget the ultrasound tech who was doing a echo cardiogram asking me if I had breast implants because the breast tissue on that side (my cancerous side as it turned out) was so dense!
I know now that the cancer was there in 2005, and probably much earlier, but nobody could find it...even though they were looking for it!
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AMEN SISTER! Tami
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I just did a quick google search on BSE, and not one site mentioned thickening. Now I'm starting to get sort of pissed off.
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I am also using the scare tactic. The women I've spoken to get real nervous. YES, you must do your BSE, NO, mammograms don't always find it. And especially from me, don't trust that mammograms can always distinguish between dense lumpy tissue and BC.
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For me the question is how do I distinguish between dense lumpy tissue and BC? While I haven't done BSEs as often as I should, I can't get dressed without handling my rather large breasts, and I have a long history of fibrocysts, so I am used to detecting changes in the feel and consistency of my breasts.
I couldn't feel anything suspicious even after I was diagnosed, and now that I have scar tissue and the effects of radiation to deal with, I don't see how this will get any easier.
"Thickening," unfortunately, is a rather vague word. On the other hand, everyone knows what a lump is, which may be why the term is preferred. But then lobular is also a subtype which is rarely studied by itself, which may be part of the reason why its symptoms are overlooked.
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I have to agree with Seabee - it's a nightmare, really. The lump that turned out to be cancer felt like a piece of a rib and acted like a cyst, changing size and getting sensitive with my cycle. Another one that felt like "something" was nothingness. And now, after Tamoxifen changes and radiation damage and surgery with scar tissue, both breasts are lumpy and bizarre and I couldn't tell you what's my new normal and what's new scary...
Someone needs to study ILC!!!! Gather the data! It's different! Make a list of how, and figure out why! Sounds so simple, doesn't it?
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We have hit on the major issue for all of us, I think. ILC is the little sister of breast cancers. It doesn't get the attention. We are such a tiny part of any clinical trial that we don't even have a large enough group to make up a subgroup that could be looked at independently. A case in point is the OncotypeDX test. It's big driver is that it measures proliferation. As a matter of fact, that's true for all of the genomic profiles that are being used to decide who should get chemo. Yet, ILC is a form of BC known for low proliferation. It is also known that other genomic markers don't work for us. For example, E-Cadherin, the very thing they look for to discriminate us from IDC, does not work the same in ILC as IDC. Another example is Cyclin D, the marker that is studied when deciding about what drives the cell cycle. It works differently in ILC. As a group, we are sort of out there alone in every way there is.
Editing to add, I know this rambles. You can sense my frustration here. I'm sorry.
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Hi everyone
My first onc. consultation will be on Sept. 10 and I will ask my doctor this question but I am wondering, after reading all the posts, if you know if ILC gets the same chemo treatments as those who are diagnosed with IDC?
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Hi Ladies,
Gitane, you nailed it. I have said that ILC is like the red-headed stepchild of BC, and yet it can still threaten our lives. It isn't like it isn't as serious as IDC, just different. I got my oncotype results today and my score is a 24. I enrolled in the TAILORx trial, and was randomized to chemo and tamox. I am 45, so I guess that is okay, because I suspect my onc would have wanted me to do the chemo anyway. My ILC is pleomorphic too, so as you know Gitane, that makes it even more of a stepchild. I hope that the chemo works, I would like to know the answer to delaine's question too. I am glad you are all here to communicate with, because it is hard for anyone else to have a clue how I feel.
Susan
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To address the chemo question--they use the same chemo for ILC as IDC. The main debate with ILC is whether hormonal therapy is more effetive than chemo. But there are only so many first line chemo combos, and the main debate as to chemo is whether to incluce adriamycin or not in the combo, as some studies have shown it's not that effective for HER2- cancers, whether they be ILC or IDC.
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Thank you Nash, you are so well informed, you are a real help to those in need of answers. I don't know what chemo the onc will recommend, but the assistant mentioned AC. What if any are the advantages of that combo v. the other common combos? If you don't have answers that is fine, I have a book that has some info. I am just new to this and your answers always make sense to me.
Thank you,
Susan
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I'm glad if I can help you, Susan. My late Stage IV mom was in treatment for 5 1/2 years, so between her and me, I've done a lot of reading. Plus she was on pretty much every chemo combo out there, so been there, done all that, at least indirectly.
As far as the chemo goes, the first line options are ACx4, TCx4, TACx6, CMF (not sure how many rounds they give), FECx6, FACx6, CAFx6. Some are more potent than others. For node negative patients, most oncs would probably recommend ACx4 or TCx4 (either Adriamycin/Cytoxan or Taxol/Cytoxan. Another milder chemo combo is CMF (cyclophosphamide, methotrexate and fluorouracil 5FU), but that is an older combo that some oncs don't like to use.
The trend right now is to go with TCx4 for node negative. Many oncs find the research regarding Adriamycin/HER2- disease compelling, and they also want to avoid the heart toxicity associated with Adriamycin.
The problem with all this is that it's impossible to say which combo works for which patients. Even with the same subtype of disease, such as ILC, different patients have different responses to chemo based on DNA and other factors.
I had different docs recommend three different chemo combos for me. Two docs said ACx4, another doc said TACx6 or FACx6. I basically had to make my own decision. I felt the ACx4 wasn't strong enough, and thought the TACx6 was too strong. So I pulled a Goldilocks and tried the FACx6. Couldn't tolerate it, though, and switched to CAFx6, which are the same drugs, but different timing and dosing.
After chemo was all over, the onc said, "If I had to represcribe your chemo, I'd go with TCx4, based on the new info that came out of SABC (San Antonio Breast Conference)." So, basically the recommendations are constantly changing, and you have to go with which option you are comfortable with at the time.
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This is a copy of the 2009 Practice Guidelines in Oncology. The recommended chemo regimens are listed and level of evidence is given. It has the reasons different things may be recommended and a good overview of what is and isn't "known". The bibliography is there for us to look at as well. Kind of interesting reading, even for those of us who have already had treatment.
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I tried to tell other women that there is such kind of sneaky BC but they didn't want to listen......they thought they don't belong to BC group and didn't want to be scared by me....
Also, when I talked to my doctor that at least 50% ILC can't be caught by mammo and they didn't agree.
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Thank you Nash. I am sorry for all you have had to go through to be so knowledgeable but I admire your willingness to share. I had just read your post this afternoon when the phone rang and it was the oncology nurse calling to set up my treatment. She said we are doing TCX4, starting on September 11th. So you were right on track. I am getting a hair cut this weekend, and I am sure I will be fine. I am a little shocked at my friends responses though. I think they are all more concerned about this than when I was diagnosed, and when I had a bilat mast. To me, having cancer and losing both of my breasts was a bigger deal than having to have chemo. I think it is the hair thing, and chemo makes you sick so it is more obvious to everyone.
Have a wonderful weekend.
Susan
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I was node positive with ILC and my onc recommended TC x 4. I checked with others and this is a standard tx either node positive or node negative.
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I had many positive nodes,and no nothing in my breast showed up, only my enlarged nodes,even had breast exam by gyno 2 months beforeand she didn't even feel the nodes.More attention should definitly be brought to this.I know every one of my girlfriends now tells my story to thier gyno.
I did 4a/c now on taxol and herceptin,because I am one of the few ILC with HER+
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Best of luck as you start chemo. It's not as bad as you might think. Enjoy the good days and rest on the not so good days. And remember...hair grows back. It's strangely liberating to have very little or no hair. No dying, mousing, drying, styling. Just shower and go!
My hair grew back in a white, silvery gray and it looks fantastic. Who knew what was under twenty years of Miss Clairol?
There is a light at the end of the tunnel! Good luck!
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Thank you, Linda. I am all ready very "prematurely" gray...lol. I started going gray when I was in my early 30's, and now at 45 have a pretty good salt and pepper look going on. I used to hate it, but now I try to rock it. It will be interesting to see what comes back. My motto with hair style has always been, "It's just hair it will grow back."
It is encouraging to hear that your results were not so bad. I am a pretty tough girl, underneath all of my girlishness of course, so I am sure I will be okay.
Susan
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Good luck, Susan. You will get through the chemo. I think you're right about your friends and the chemo--they have this vision of seriously ill, bald people throwing up all day. It really isn't like that in most cases.
Something that really helped me get through chemo was joining a thread over on the Chemo Board for women starting chemo the same month I was (in my case, Aug 2007). Our group over there got so close that we are all now friends, and some of us have actually have met in person.
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Thank you Nash, I agree. A new thread for September '09ers has just started up, and I think my September Sisters, and I will become great cyber-support for each other. I just got my hair cut really short, and it is kinda cute, so maybe my friends will see that I am okay. Honestly, since this whole thing started I haven't felt "sick", so I don't think the chemo will be any different.
Have a great Saturday!
Susan
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I'm sure you'll come through Chemo with flying colors, Susan!! Do what I did...I moved in and took over the room! Since I was there for a good portion of he day, I packed a cooler with drinks and snacks, took my portable DVD player, plugged the charger for it and my phone in the wall, put my blankey on, put my legs up, put the chair back and rode the flight in first class! It got to where people would come by to see what movie I was watching (for Christmas my hubby bought me about 15 Shirley temple movies). It wasn't nearly as bad as I thought it would be.
Suasn
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Hi all, I am new to posting on the discussion board and I am really new to breast cancer. I went to my breast dr. on Aug 6 due to concerns over my left breast (thickening, dimpling, looking smaller) and my Dr. did the mammo again (last one was in Nov 2008) and it did not show anything but he too felt the difference so he did an ultrasound and took 8 core biopsies right then. On august 13 he gave me the news of Invasive Lobular Carcinoma and the options. I went for the double mastectomy as I do not have to worry about the other breast being affected. After meeting with the plastic surgeon on Aug 19 I opted for the reconstruction being done immediately following the mastectomy. The arrangements were made quickly and surgery was done on Aug 25. I sit here with my drain tubes still in place. My husband and I will meet with the Dr. on Thurs to get the results of the pathology done during surgery and what my next course of treatment is. My message to all my friends and coworkers is to become familiar with your body and recognize any changes and bring them to the attention of the doctors. I am coping with the emotional side of this and had my breakdown last night as I had to have my husband help me with the binder for the first time as all my female family had left. Anyway, it is good to have the support. I will check here often for input as to the chemo option and I was wondering if anyone had to have radiation therapy also?
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