ILC - The Odd One Out?
Comments
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Hello ILC group,
Do not think I have posted here in awhile, could be wrong, still have chemo brain...lol...
I think I am still the oldest, when dx, 58. I also had the slightly tipped uterus, painful, heavy periods. Fibroid tumors, stayed way too long on birth control to try to control it. Finally had a hysterectomy. Also, low body temperature & low blood pressure. It does seem like we have many similarities.
Lily, I looked on Jpsgirls bio. It says she had 6 rounds of TAC.
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Okay, I'll break this pattern. I was 60 when diagnosed, do not have a tilted uterus, and have had high blood pressure since my first pregnancy. Guess there's an exception to every rule!
Also, I'm the 9th person at our church who's been diagnosed and the only one with ILC to my knowledge.
Kathy
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bc101...yes it does get better...eventually its not the first thing on your mind...My onc only does scans if the patient is symptomatic....otherwise, just blood work (Cbc, CMP and tumor markers), detailed history and exam... I don't have mammos cuz I had a bilat...and no MRI's....Just had my 6 month check up....
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Lily55 I did have chemo - TACx6, which is how I met Karen. We were
part of a long thread of other TAC folks in early 2006. Once it was in
the nodes, I didn't really think I had a choice, though the jury is out
on who benefits from it and who doesn't, and I've read that ILC is less responsive to chemo than other forms of bc.bc101 I never really felt like
I had cancer. I know that sounds completely weird, but I just never
internalized it. That said, I've had a couple of times over the years
that a mammogram turned up something they felt they had to biopsy, but
even then the docs thought it was nothing and it was nothing. I
experience the follow-up stuff as mildly aggravating - like a kid who
wants to be outside playing instead of doing homework. And a funny one - I had Zofran for nausea and if anyone even mentions that stuff I can almost taste it, despite the fact that I wasn't very sick from the chemo (the Neulasta shot side effects were short lived but much worse).TaniaE I'm embarrassed to say that I've not made any real lifestyle changes. We resolved to take a work sabbatical - and we did - FOUR years after I finished treatment. For many reasons, I should eat less and exercise more - but we humans are funny animals. Once the danger is passed (or we don't feel it), we often revert to our old selves and habits.
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Hello ladies,
I just came across this thread and wanted to respond. I am 41 years dx'd in july with ilc. Before diagnoses I was exhausted all the time for a long time..so I think fatigue is definitely related to if not a sx of cancer. I swear these doc's dismiss too much with out investigating. Doc's really need to start listening to patients more often and take the time to really investigate our complaints. I was reading about a lawsuit against the cancer center Im being treated at..a 40year old woman's family sued (and won a 13.5 million settlement ) my cancer center because the woman died after complaining about having a very long bout of diarrhea and the cancer doc's all disregarded her complaint. Turn out, it was mets ! And the diarhhrea was her bodys way of warning her. Unbelievable !!
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jpsgirl96 - I think that is awesome that you never felt like you had cancer. I just wish for a day that I don't think about it.
ganzgirl - I agree about the fatigue. I was extremely tired for years before my diagnosis. The docs were all focused on my depression and I attributed it to life stressors that I was going through. But then I just got so sick and tired of being tired all the time. One night I said to my DH as I was laying on the couch - "I'm so tired!! There is something wrong with me and I need to find out what it is!"
That is so scary about the woman at your clinic. I worry about each and every symptom, but don't always know what to bring up to the docs.
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Bring up EVERYTHING to the docs if it concerns you. That's what they are getting paid for.
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I just found this and thought I'd post.
Dx at 45 pre-meno with stage IIIa ILC in right breast. 7.2cm tumor at surgery (on 10/24/14) with 3/15 lymph nodes involved. I start chemo on 12/1/14 AC with Taxol
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Another thought. How many ILC's like me were premenopausal at diagnosis? Also how many of us had primary(you smoked) and secondhand smoke exposure during childhood/adolescence?? I was 46, healthy, no family hx. 3 pregnancies, 1 miscarriage. Took birth control on off for contraception. Last used Mirena after my second daughter was born. Then had sx's of estrogen dominance. Diagnosed 5 years later.' I am an ARNP and am very interested in getting more data about this too.
I also had 5 useless mammo's. They told me too late that i had dense breasts. Why not add Thermography for women with dense breasts since they know the mammo's are unreliable. The sensitivity and specifity of mammo's are abysmal I was not aware how badly. Even being in the health care field didn't clue me in. I wish i had never trusted their tests. Their is too much profit motive involved in the cancer industry.
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Macb, thermography is even more unreliable. They recommend MRI for ILC detection, and also alternating ultrasound with mammos.
Many of us were pre-meno at DX.
What do you mean that you were diagnosed with estrogen dominance? What are the symptoms and how is DX made? I ask because my hormones have always been weird.
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Macb04. I was 44, pre-menopausal and otherwise healthy at diagnosis. Never smoked but grew up in a household with smokers. Took birth control pills for 20 years due to heavy cycles and was also known to be estrogen dominant. Mine was picked up on an ultrasound and hoping that was all there was as I only had lumpectomy and as we all know ILC is known to go bilateral. There needs to be other forms of testing particularly for ILC which seems to be so difficult to detect.
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I've had mammograms every year since age 40. I found my own cancer quite by accident at age 57. I was told I had it for years since it is very slow growing. I am very angry at my local clinic for not being able to detect my cancer sooner. I know it's my job to do SBE's and I didn't because I always had lumpy, dense breasts. I'm wondering why they even do mammograms if they are so ineffective for those with dense breasts. I wonder if maybe having mammograms gave me cancer? Thankfully the laws are changing in many states as far as notifying women who have dense breasts, but too late for me. I am at least grateful I found my cancer at an early stage and try to look forward with hope, but it's hard.
Happy Thanksgiving all!
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Diagnosed at 47 with a 13cm ILC. 9 out of 12 lymph nodes. I have been lucky, CT, MRI and Bone Scans are clear.
I found it as it started to distort my breast, although it was a very subtle change. Off to my Doctor who was convinced that it was a cyst as it was so big - as it was smooth and mobile. I always had regular mammograms and they were clear. My surgeon said that it had been growing for years.
History of very dense breast tissue (including 2 x fibroadenoma removals). Birth control pills until I was 40. Prememopausal and periods gone haywire since coming off the pill. As soon as I am through with chemo and radiotherapy I will be having my other breast off, as it contains the same lumpy, dense tissue.
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Macb--very similar to you. Pre-menopausal, 49, used Mirena for 9 years, probably was estrogen dominant if I knew what the symptoms were.
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As we approach the 2014 San Antonio Breast Cancer Symposium (5 day conference starting December 9th), I thought it would be wise to review the "Lobular" presentations. I did a quick search using the keyword "Lobular" on the SABC website. Below are the topics / discussion results.
As many know, Lobular is a subset of BC that doesn't get as much attention as other sub-types. You should remind your oncologist to review these topics, discussions, papers, etc. as they may apply to YOU. Unless your oncologist is an expert (or has interest) in Lobular, these topics will likely get lost in the noise. There may be more discussions regarding lobular, but these were the results of my search query.
Program Schedule:
Wed, Dec 10 2014 - 4:00pm
S2-04.
"Comprehensive molecular characterization of invasive lobular breast tumors"
Ciriello G, Gatza ML, Hoadley KA, Zhang H, Rhie SK, Bowlby R, Wilkerson MD, Kandoth C, McLellan M, Cherniack A, Laird PW, Sander C, King TA, Perou CM. Memorial Sloan Kettering Cancer Center, New York, NY; University of North Carolina, Chapel Hill, NC; Broad Institute of MIT and Harvard, Cambridge, MA; University of Southern California; British Columbia Cancer Agency; Washington University in St. Louis.
Wed, Dec 10 2014 - 4:15pm
S2-05.
"Characterization and clinical relevance of the genomic alterations defining lobular breast cancer"
Desmedt C, Gundem G, Zoppoli G, Pruneri G, Biganzoli E, Fornili M, Fumagalli D, Rothé F, Brown D, Van Loo P, Brohée S, Vincent D, Keddoumi N, Majjaj S, Rouas G, Van Brussel T, Lambrechts D, Metzger O, Galant C, Bertucci F, Piccart M, Larsimont D, Viale G, Campbell PJ, Sotiriou C.Institut Jules Bordet- Université Libre de Bruxelles, Belgium; Wellcome Trust Sanger Institute- The Cancer Genome Project, United Kingdom; European Institute of Oncology, Italy; University of Milan- Fondazione IRCCS Istituto Nazionale Tumori, Italy; Vesalius Research Center, VIB, Campus Gasthuisberg, Leuven, Belgium; Dana-Farber Cancer Institute; Université Catholique de Louvain, Belgium; Institut Paoli Calmettes, France.
Wed, Dec 10 2014 - 4:30pm
S2-06.
"Survival advantage of anastrozol compared to tamoxifen for lobular breast cancer in the ABCSG-8 study"
Knauer M, Gruber C, Dietze O, Greil R, Stöger H, Rudas M, Bago-Horvath Z, Mlineritsch B, Kwasny W, Singer C, Dubsky P, Jakesz R, Fitzal F, Steger G, Bartsch R, Filipits M, Fesl C, Gnant M.Breast Center St. Gallen, Switzerland; Hospital of the Sisters of Charity, Linz, Austria; Paracelsus Medical University, Salzburg, Austria; Medical University, Graz, Austria; Medical University, Vienna, Austria; Landesklinikum, Wiener Neustadt, Austria; ABCSG.
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The following are Poster sessions. I'm not sure about the date and time for each of these sessions.
Poster Session 3:
P3-04-05
"Invasive lobular carcinoma cell lines utilize WNT4 signaling to mediate estrogen-induced growth"
Sikora MJ, Bahreini A, Alexander CM, Oesterreich S. University of Pittsburgh, Pittsburgh, PA; University of Wisconsin, Madison, WI.
P3-07-31
"Case series of 21 patients with metastastic lobular breast carcinoma to the gastrointestinal tract"
Switzer NJ, Lim A, Du L, Tonkin K, Schiller D. Department of Surgery, University of Alberta, Edmonton, AB, Canada; Department of Oncology, University of Alberta, Edmonton, AB, Canada.
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Poster Session 1:
Tumor Cell and Molecular Biology: Epigenetics
P1-06-01
"Histone deacetylase HDAC7 is a putative therapeutic target in invasive lobular carcinoma"
Sikora MJ, Oesterreich S. University of Pittsburgh, Pittsburgh, PA.
Treatment: Radiotherapy:
P1-15-06
"Lobular histology and partial breast irradiation: To what extent is it a cautionary parameter?"
Leonardi MC, Maisonneuve P, Morra A, Rotmensz N, Dicuonzo S, Lazzari R, Dell'acqua V, Cattani F, Mastropasqua M, Luini A, Orecchia R. European Institute of Oncology, Milan, Italy; University of Milan, Milan, Italy.
Treatment: Breast Conservation
P1-16-01
"Effect of margin width on local recurrence in invasive lobular carcinoma treated with multimodality therapy"
Sagara Y, Barry WT, Vaz-Luis I, Aydogan F, Brock JE, Winer EP, Golshan M, Metzger-Filho O. Brigham and Women's Hospital and Dana-Farber Cancer Institute, Boston, MA; Dana-Farber Cancer Institute, Boston, MA.
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Poster Session 2:
P2-01-29
"Axillary involvement in lobular breast cancer"
Zamora P, Marti C, Roman A, Oliver JM, de Santiago J, Sanchez-Mendez JI. Hospital Universitario La Paz, Madrid, Spain.
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Poster Session 5:
P5-21-09
"Oncologist treatment choices in patients with early stage invasive lobular breast carcinoma - a survey"
Jacobs C, Clemons M, Ibrahim MFK, Addison C, Caudrelier J-M, Graham ID, Hutton B, Arnaout A. The Ottawa Hospital Cancer Center & University of Ottawa, Ottawa, Ontario, Canada, Ottawa, ON, Canada; Department of Medical Oncology, St Vincent's University Hospital, Dublin, Ireland.
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Poster Session 6:
P6-13-02
"The extent of lobular carcinoma in situ (LCIS) at surgical excision predicts for the development of subsequent breast cancer"
Gooch JC, Guerini-Rocco E, Patil S, Koslow SB, De Brot M, Park AY, Boafo CA, Reis-Filho JS, King TA. Memorial Sloan Kettering Cancer Center, New York City, NY.
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John----I'm interested in reading the last article you listed (on LCIS)--do you have a link to it?
Anne
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John - Thanks so much for posting. I had forgotten about this and look forward to reading the articles. Are they not available until after the conference? Not sure how that works.
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I've never been to the Symposium. I believe Abstracts are available within a couple weeks before the meeting kicks off. My guess is that the presentations are summarized for public consumption once the symposium is completed. Certainly, the media will report what they think is important. If there are topics that interest you, reach out to those doctors/researchers that present the data. It's easy to track down emails. If you need help with finding emails, PM me.
This is one of the two times of the year to really pay attention to breast cancer news, since the info (often clinical trial results) is used by oncologists to make treatment decisions.
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Hi all. Newbie here. Diagnosed with ILC on 11/21/14. 61 years old I have low blood pressure, low temp, took progesterone to prevent miscarriages, irregular cycles with heavy periods, exhausted for the last 15 years,,,, 100% EP. HER2 neg
,Was scheduled for BMX later this mo the, but doctor at Hopkins said if I do reduction going down 2 bra sizes he will get enough tissue to check my "good breast". At the same time. I'm going for this even though it may be a 2nd surgery. Was going to do BMX without reconstruction as I have twinges even though that say it's ok as recovery should be much less trying this first. So hard to know what to do
In my family you either get a heart attack at 60 or live to mid 90s. I thought I was over the hump with my birthday LOL. Still aiming for the latter
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Chloesmom- I'm so sorry you've joined us. You sound a lot like many of us by your description. The decisions are tough, but at the end of the day, you can only gather all your information together and go with your gut. A BMX doesn't guarantee the cancer won't return. I had one in 2007 plus 3 ½ yrs of Tamoxifen and am now in treatment for a recurrence (thankfully it's a "local" recurrence, because it came back in the lymph nodes on my original cancer side AND a tiny amount of remaining breast tissue, meaning my prognosis is very good!). No BMX removes all breast tissue cells. Breasts aren't "contained" organs, so it's simply impossible to get all of them. If I were you, I'd get a 2nd opinion (though I'm sure your onc is great!). I had an entire crew of doctors recommend exactly the same treatment in 2007, so at least I can't say I have any regrets about not doing things differently. This time around, they all agreed on the treatment, but they differed in opinions on the order of the "ingredients," so I had to weigh my options and go with my gut. I'm almost done with 6 months of chemo and will move on to surgeries and radiation in January, and I don't ever doubt I made the best choice.
Hang in there. I think most women will tell you the WORST part is the time period between diagnosis and decision about treatment!
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2 BCs wanted it just do lumpectomy as first choice. I don't have confidence in not getting them to take a big chunk out of leftie too so feel good about this choice for the moment. As you said BMX is no guarantee. I just couldn't live with assuming that since the US is clean there is nothing going on in the good one I get so many odd pains there too.
That being said I may not have a choice after all. The tumor is against the skin and the PC is going to reassess as has to take so much out at the top of my breast. Looks like a cantaloupe with a bruise in top Any question and it's gone girls.
They are scheduling my surgery ASAP but I won't know final choice until consult next week.
My daughter has PCOS and endometriosis She is worried now about her hormone levels and treating one thing making her more vulnerable to this curse if there is a connection
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Chloesmom- Definitely ask your onc about the chances of it coming back in the other breast. I've been told numerous times ILC is more likely to return in the opposite breast than other breast cancers. Also, just an FYI, we thought my right breast was completely healthy, but a day after BMX my surgeon came into my hospital room to tell me it was FULL of pre-cancerous "stuff," and his guess was I would have been back having it removed within a few years. Everyone is different, and I also have an incredibly strong family history of breast cancer, but I wanted to share this additional info anyway! I thought I was done with surgeries because I'd had both breasts removed, but with this recurrence I have to go in for an Axillary Dissection AND because the small tumor is attached to my left implant, they'll have to remove my implants and replace with expanders for a few months, meaning I'm going to basically have to go through reconstruction AGAIN.
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Six years ago I was 50, healthy, and exercised all the time at diagnoses. I had a clear mammogram 3 weeks before breast reduction surgery. 3 small ILC foci were found in tissue of rt. breast. Also both breasts were full of LCIS and atypical cells.
Had my children at 37 and 40. I had to have a mammogram at 29 because of all that lumpiness. Cysts drained --- yuk.
Did have bilat mast. with muscle sparring tram flap reconstruction--went well.
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Diagnosed age 46 with ILC, triple positive. Previously told lump was benign after fine needle biopsy (no mamogram or core biopsy was taken) so I was sent on my merry way for 3 years until my real diagnosis by which time it had spread to my nodes. Do I sound bitter? You bet.
Anyway, I have to get on with it. My mother had ovarian cancer age 53, I am awaiting BRCA gene test result, which they tell me is unlikely to be positive as HER2 positive tumours caused by BRCA are rare. I recently discovered that my mother was given hormones during pregnancy due to threatened miscarriage - possibly DES. Maybe this caused my mothers OC and my ILC? Maybe it is BRCA gene, maybe it's because I was a smoker when younger, maybe it's because I have dense breast tissue - or maybe it's due to all of the above.
We can't turn back the clock unfortunately, but I'm going to throw everything I can at this hateful disease. I have changed a lot of things in my diet and lifestyle - this gives me some control back and I believe it will help.
best wishes.
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srpj, I am bitter, too. I was faithful,about getting mammograms and my cancer never showed up. Lobular is slow growing and it was there for years, like yours. But, we must move on and deal with it. I too have changed my diet and lifestyle. Best of luck to you.
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Hi Ladies:
I had very dense breast requiring a sonogram almost every year after my mammogram. Last year before my BC was diagnosed in May of this year, several sonogram were performed on my right breast. When I asked why I was told it was very hard to see one area. The same area that I was diagnosed with LCIS this past June. Before that I was diagnosed with ILC of the left breast. The findings resulted in my having a double mastectomy in July of this year at Age 57.
I wonder why given my history, an MRI was not done last June. Maybe the cancer on the left side would have been caught earlier. I have since learned that LCIS is a finding indicating that development of cancer in the opposite breast is very likely.
However,I try (sometimes without success), to put my energy into fighting the cancer and my other preexisting medical issues. But I think it is normal to be bitter and angry, at least for awhile. I try to keep a positive attitude but sometimes I see myself looking like a 12 year old boy and it upsets me. Ordered a set of foobies and bras for when I want to wear outfits that need boobs. Hoping they will look normal. . Have used post surgical cloth foobies in a regular bra and they look terrible and don't feel normal.
Decided not to waist my time trying to figure out why I got BC. I did and I just need to work on moving through it without letting it take over my life. Know it is still very early forme as it has not even been six months since my surgery.
Be good to yourselves and big hugs to all. 😃🐈😃
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MSQUEEN - Good answer. I don't like that I got breast cancer, I don't like the treatments I endured, I don't like the SE's from the AI's but I can't change what happened. Kinda like the Serenity Prayer - - - I can't fix it so I need to move on and make the best of today.
Today is a good day (so far).
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Momine. I also have had hormone issues all over the place before they found my ILC pre- meno at 50. At 40 I had the strangest huge cystic/boil/pimple things going on all over my face like a teenager and within 6 months lost 40% of the hair on my head. This went on for over a year. Had my estrogen tested and they said it was fine but the BC (microgestin) was bringing my testosterone to the highest acceptable level before considered a problem for females. I believe all these strange things plus a sudden huge weight loss had something to do with the onset of lobular carcinoma. My cancer was over 5cm at diagnoses so it more then likely started 10 years earlier. The thermograph test I think is not great - I was offered that 5 years ago and not sure it would have seen any cancer. The MRI did after the doc took biopsies and we new of the mass but after chemo the same place ran another MRI and it saw nothing. One month later the mastectomy results showed gland invasion in all quads and still a 4 x3 x1 invasive mass. I still want to know how I had a grade 1 cancer and a KI-67 of 63? I'm not sure the tests were accurate. I did notice my breast became softer as the chemo treatments went along so yes the chemo shrunk the grade 1 mass. Has anyone else had a high KI-67 and a low grade cancer? It just seems weird to me that both results are right.
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Anette, weird! I had adult acne on and off. When I started the AI, I got it again and found out that it cn be caused by high testosterone. So I think I had high testosterone on and off. I also developed late, had trouble getting pregnant and other stuff indicating hormone problems
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So, what's the latest ILC news?
Is there any good Lobular data coming out of the 2014 San Antonio Breast Cancer Symposium this week?
Obviously many are awaiting the SOFT / TEXT trial results today, but like you, I'd love to see some useful ILC news.
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