Please share your story
Can you lovely ladies share your ILC diagnosis and any symptoms?
Comments
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Symptoms pre diagnosis were aching and at times almost pain, as well as crinkly look to outer quadrant, NO lump.........was diagnosed with STage 3A, grade 2 ILC......
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I noticed a big weird, hard-ish spot in the side of my breast while putting on a sports bra one Sunday and was freaked out enough to call first thing Monday. I thought maybe it was just a knot in a muscle and that I had pulled while working out--but it wasn't sore at all when I pressed on it.
Fast forward through the OB/GYN appt, 3D mammo and ultrasound, surgeon appt with core needle biopsy and by that Thursday afternoon, the surgeon was calling me with the diagnosis.
I doubt my experience is typical though because ILC seems to form chains of cells instead of lumps per se--making it hard to detect.
Once I found it though I was shocked that I hadn't noticed it before. I hadn't been doing self-exams (I know--not smart) but I I put on a bra every day just like I did that day.
I didn't have pain or any other symptoms. My previous 3D mammogram had been fine 15 months before, but that's pretty common.
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i had a pain in my breast and I rubbed it and felt a knot. I went back to work and showed our mamo tech and she got me into the breast center asap. They did mamo and us and bx right then. The doctor kept asking me if I had trauma to rhe breast. I guess it looked like fat necrosis. Bx results came back positive fir ilc. Mri showed 5 cm mass. It was actually 3 cm. I had 8 out of 15 positive nodes. I did chemo radiation and bilat mastectomy. I waa 42. Now at 5 years I have some strange stuff shiwing up in my spine but its too small to bx. So we wait. I also take arimidex
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Lily55, How were you diagnosed, mammo?
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The only symptom I had was really intense itching for about six months before diagnosis - nothing else. It never occurred to me that it was cancer
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For a couple months prior to diagnosis, I could sense something only when going to sleep on my stomach (lesion was too deep to be palpated). I was peri-menopausal and thought it might be a cyst.
Film mammograms over the previous few years with dense tissue reported architectural distortion but call back for ultrasounds showed nothing of concern. Even a digital scan was unsuspicious until it had grown enough to be visible. Then, an MRI picked up a second tumor which turned out to be invasive ductal carcinoma, again unable to be felt due to position.
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No real symptoms-- except when I look back now I see that I was really tired for several months, which was (and is) unusual for me. But, faithful mammos every year-never even a call back. had a clear mammo 5 months before dx (this seems common with ILC) and it was found in my regular dr. visit by my pcp who was doing a routine clinical exam. No bc in family- no real risk factors--it was a stunner, to say the least. But, there you have it. 8.5 years later, all is well....
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No symptoms before I found the problem during a routine self- exam August 2011. I did, though, have some intuition that something was off for a few months before. All the summer before I discovered what I did, I felt like there was somewhat of a dark shadow over my life. Hard to describe--but like there was something not so great looming over me. I wasn't depressed, nor under stress, or anything. I remember trying to lose a few pounds and having this weird random thought: well, if I got chemo, I'd lose weight for sure.
Turns out it was true.
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Claireinaz how were you diagnosed? Mammo, ultrasound MRI or all of them?
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I had more of a "pulled" looking line across my breast (sort of suddenly) Like a long concave scar or something. Started obsessing about palpitating it but couldn't really feel a lump per say, just thickening. Six months late for my yearly mamma so went. Bam, De Novo out of the box. In retrospect, I had been feeling unusually fatigued for awhile even though I was trying to work out hard biking long distances. Just could never get my aerobics lungs back in shape. Anyway here I am 18 months later with a couple of liver and bone lesions but doing OK.
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Amanda702, I was dx with an excisional biopsy, after working with my GP (who couldn't find it the first time, till I showed her, and who told me twice it was normal breast tissue; luckily she recognized my concern regardless of what she said, and sent me to get an US, and then sent me to a surgeon who hustled me into the OR asap. He knew differently that this wasn't normal breast tissue.).
I had extremely dense breast tissue, which I did not know could hide problems. I had already had five "clear" mammos over 5 years, as well, that didn't show anything there.
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I passed a mammogram just a month before diagnosis! I was only diagnosed by MRI.......I refuse to have any other test now except MRI´s
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Hi- I was tested every year for last 10 years nothing showed they said it could have been there for up to 7-8 years before dx. I had a pain in my breast for about 8 years prior to dx it was the breast with cancer there was no lump to be felt and tests were clear year after year mammo's and a few ultrasounds.
The year just before dx did feel more tired than usual but my business was busy figured it was the increase in work hours breast still hurt alot but had been tested nothing showed.. last 6 months before dx felt a craving for sugar at odd times that I would not usually like after having a few sweet coffee's . my hair felt like seaweed when wet started to feel overall ill and my breast hurt. Had yearly mammo in September and ultrasound nothing showed. November felt noticable lump got tested again in December got results in January nothing showed. My sent me to specialist as the lump grew quickly and cancer became aggressive for reasons I do not know why. It was growing at alarming rate. Specialist finally found tumor on mammo did biopsy and was cancer
Within 2 weeks she had me in for surgery double mastectomy. Found 9.2 cm tumor and 17 cancerous lymph nodes 2 more tumors 1 cm and 2 cm. Had extracapsular (probly spelled wrong) nodes burst open. I was a mess they gave ne chemo radiation and I a bad prognosis of cancer returning if it was indeed really gone. I am still here 5 years later and getting lifelong treatment meds I am happy to be alive but a small part of me is still fearful what if its back and they don't find it again.
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Late January 2013: 48 years old. Felt something in left breast while showering. Wasn't sure what it was, just knew I'd never noticed it before. Decided to wait for one month to see if it was related to the monthly cycle, and I wasn't due for my next mammo until May, anyway.
March 2013: Went for diagnostic mammogram, and they decided to also do ultrasound, because mammogram saw nothing. I had very dense breasts. Ultrasound tech said "It feels like a little tennis ball in there, doesn't it?" Yes, it did. Ultrasound didn't see anything either.
Verdict: "Dense breast tissue, but come back in six months."
Spring 2013: Went back and forth between believing that it was just dense breast tissue and being VERY uncomfortable with that verdict.
Summer 2013: Turned 49 years old. Started sometimes feeling pain in the breast if I was on my feet a lot, but also wondered if maybe I was making the thing--whatever it was--sore because I kept poking at it a lot.
Late summer 2013: Scheduled appointment with new gynecologist. Began to notice that I could feel "something" near my left armpit when I'd lay on my side a certain way. Left breast had begun to look different, shape-wise.
Late August 2013: Saw gynecologist who sent me straight (that same day) for a new diagnostic mammo and ultrasound (where I got to hear an idiot mammo tech refer to my "thing" as a "ginormous lump" when she called to verify that an ultrasound had also been ordered. Gyno also set me up with an appointment with a surgeon for the following morning.
Late August 2013: Saw surgeon. Began whirlwind of 1st MRI ("I don't want to biopsy without knowing what I'm aiming at,") followed by biopsy (Ouch!!) followed by 2nd MRI with biopsy on the other breast ("We saw suspicious things in there and we want to be sure.") In any case, although mammogram and ultrasound failed to really see *anything*, MRI showed the "thing" quite clearly.
September 2013: Got results: Right breast all clear, but the "thing" in the left breast was ILC. Was told that MRI indicated lymph nodes were clear by surgeon, but radiation oncologist knew what I knew--she said "We'll see at surgery what's going on with that lymph node," and I told her I could *feel* it when I laid a certain way.
October 2013: BMX, because although the right breast was technically clear, it was "very busy," and since I already knew mammograms were fairly pointless for me, it just seemed to make sense to go with the BMX. Doctors agreed. Chose NO reconstruction. Doctors surprised. lol.
October 2013: Result: Tumor 5.5 centimeter, ILC. 11 of 22 nodes positive. Extranodal extension. One lymph node completely replaced by cancer. Sort of blown away by the fact that the tumor had been QUITE close to actually breaking through the skin and yet neither mammogram nor ultrasound had detected it. I mean, I understand about very dense breast tissue and tumors that are buried deep but this one wasn't buried. On the bright side--the VERY bright side--it was far, far, from my chest wall. Was told that the cancer had probably been there for as long as ten years, which means that every mammogram I ever had was completely pointless.
November 2013: Started chemo two days before Thanksgiving.
March 2014: Finished chemo. Hair started growing back several weeks before finishing chemo. Weird.
May 2014: Started radiation.
July 2014: Finished radiation. Turned 50 years old.
September 2014: Had complete hysterectomy to guarantee menopause--though I hadn't had a period since right after 1st chemo--so that I could take Femara instead of Tamoxifen.
Fast Forward to Now, March 2017 -- So far, so good. The entire experience has left me with no breasts, no internal female parts, and no lymph nodes under left armpit--but hey, also no need to shave it. I'm on antidepressants, an anti-anxiety drug, I have permanent but mild neuropathy in both feet and all fingertips. I've gained weight, developed underactive thyroid and added a drug for that. Both knees go through phases of being painful when climbing stairs, and during the process of standing up or sitting down, not helped by the fact that the neuropathy and our energetic leash-pulling dog have caused me to fall pretty hard several times. My memory sucks. My memory sucks. Oh, did I say that already? Yeah. My memory sucks. I sleep more, and more deeply, than I used to. I will be on Femara for "at least" ten years, and possibly for life. And I developed a weird hyper-sensitivity to caffeine after chemo was through, so now going to restaurants is tons of fun; it's hard to find a caffeine-free and diet version of anything in most places--and I'm not a fan of diet Sprite--so I've learned to love club soda with a bit of lemon.
Really though, I'm doing good. My husband really showed what an incredible man he is during my treatment, and since; he's been by my side through all of it. I don't have the energy or the physical abilities that I used to have, but, we're gearing up to go to Disney World with my family for the third year in a row in early June, and day-to-day life is just day-to-day life again. Not exactly the same as it used to be, no, but still just as wonderful as it always was, and weirdly, not ALL of the experience was bad. Chemo itself wasn't NEARLY as bad as I expected it to be. Mostly I think I slept through it, lol. Life is good, and I'm happy.
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I did have a solid tumor visible on mammogram but in Denmark screening starts at 50 (not 40). I was 45.
I discovered something was wrong because i had a small dimple on the breast. The tumor was hidden behind some healthy tissue så I never felt it myself. This was 3 years after my sister died of cervix cancer at 46. Very sad.
I had many dreams (nightmares) about breast cancer before I was diagnosed. I am sure I somehow knew it before I was diagnosed but somehow tried to deny it.
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hi everyone. I was breastfeeding and over due for my yearly mammo so I asked for an ultrasound. The tech was amazing, maybe she went the extra mile because she was nursing too and we had lots to talk about? Either way I am grateful she was my tech that day. She found it. It was quite small - 8mm. I am fortunate and grateful because I know so many others who were not as lucky, and reading your stories here really solidifies that. Thank you for sharing them!
I had my lumpectomy in February, went on Tamoxifen and begin radiation next week. I have heard ILC is more common in post menopausal women, perhaps due to HRT but I am curious why it keeps popping up in pre menopausal women? Anyone have any thoughts on this? Just curious not that it makes much of a difference with treatment and stats.
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First, I want to say this forum is a blessing. I've been lurking for the past few days and have found so much good information. Thank you everyone for sharing your experiences, it helps so much!
I actually had a mass in my left breast for 6-7 years. I assumed it was fibrous tissue and kind of blew it off because my breast exams and mammograms were clean. Over the past year, it had gotten bigger to the point you could actually see it through my shirt. I knew I was due for my annual mammogram so I still didn't panic. I opted for the 3D mammogram in October and they called me back in for an ultrasound and subsequently, a biopsy. The results came back positive a week later and I was immediately referred to a BS. MRI results showed a mastectomy was necessary and based on reoccurrence risks, I opted to have the right breast removed as well. A week before surgery I had sentinel node dissection and 1 node was positive. I had a double mastectomy and tissue expanders placed December 14. The surgeon also removed 18 lymph nodes (all negative). Turns out I had 2 tumors; one 6 cm and one 1 cm.
I've seen 2 MOs who both agreed chemo would not be beneficial. I am 44 and pre-menopausal so my options are Lupron injections and AI for 10 years or Tam for 5-10 years. I'm leaning toward Tam.
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LolaB-
Thank you so much for sharing your story! We're glad you've joined our community, and hope you find the support here you need. You'll probably want to read through our ILC forum, to connect with other members in your shoes: https://community.breastcancer.org/forum/71.
We look forward to seeing you on the boards!
The Mods
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trying to make difficult decisions I was diagnosed February 27th with needle biopsy with invasive lobular cancer. After having a lumpectomy he could not clear all the margins actually have 3 positive margins inferior posterior and lateral. He is giving me the opportunity to have a rexcision if they can clear those margins out but his first reaction when is talking to me if it was my wife I would do a mastectomy. Then after talking it through he decided he could go in again but to make sure I understood that's a chance and he couldn't promise that he would clear the margins . He said actually during lumpectomy the specimen came back positive margins he went in and did another cleaning out and the second set was positive in three areas. Wondering if anyone else has has its experience I have opted to do one more reexcisiin because it's a favorable tumor for radiation and anti estrogen therapy and it's also a very small tumor just deep
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Lisaelena and Ctann, welcome to the BC.org Community! We're sorry that you have to be here... but glad you've found us!
Besides others experiences and great support here in the boards, you may want to find the following section helpful:
It's been designed for those newly diagnosed to help you sort through all of the information on our site to find what is more relevant to you right now.
Hope this helps! Please come back and let us know how you're doing.
Best,
The Mods
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strange pain in both my breasts, reminded me to do the whole check for lumps thing. Very large mass. My GP said it felt like normal breast tissue, but I needed to get imaging to make sure. Nothing on mammogram. Ultrasound technician couldn't get a clear picture. When I saw the ultrasound getting a biopsy a few days later it was definitely clear! MRI showed ten cm of tumour. All gone completely with neoadjuvant chemo. Hopefully will stay away forever now
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I just had a bilateral mastectomy with tissue expanders last Thursday, so I thought I would update my story.
My largest tumor was 2.9 cm with pleomorphic cells. I was absolutely positive that I would have extensive lymph node involvement. The preliminary surgical pathology (frozen section) showed axillary nodes were all clear.
Tomrorow I seen my surgeon and Oncologist and will update again with Oncotype results hopefully.
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SSSNewbie,
How are you feeling?? Good news about the lymph nodes! That had to be a great feeling.
I was diagnosed on March 29th with ILC in left breast. Waiting for MRI next Thursday to get a real picture of what's going on. Did you get an MRI as well?
Hope you are feeling ok.
Thoughts and hugs your way!!
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January called back in to look at second mammogram needle biopsy in the February show invasive lobular cancer. lumpectomy March 20th came back three positive margins .April 11th re excision hoping and praying for the best if not clear then a mastectomy otherwise tumor is estrogen positive and I was going to have anti hormone therapy and radiation that was my course treatment plan.More than likely I'll end up with a left mastectomy but I don't regret going through the second surgery hoping to catch these margins positive hoping for New Life at Easter and recovering from yesterday
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The only symptom I had was an intense itch also. I probably had it for a year or more before I was diagnosed. Every year I go for a mammogram and gynecological exam. I mentioned it to my gyno the year before I was diagnosed and she did not think it was a sign of cancer, even though I had a suspicious mammogram that was later declared to be ok
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I'm pretty sure it turned out there was nothing wrong with the original poster. She was trying to diagnose herself and hasn't been back in a month
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No symptoms I can really admit to except I was very tired the year or so before. That's it.
Found the lump myself in random way. Adjusting tank top, etc. Although I did do "half-ass" self exams from time to time. Had faithfully completed diagnostic mammos since age of 39 (family history) -- and had breast exam about a month before I found it. Last mammo about 11 months before. Nothing seen or felt on anything and in fact, I think they would have missed on the US because the first words out of the radiologist's mouth was: good catch. And he thought it was benign, btw.
It was a small, hard "knot" like a pea. I was a small A cup, very dense, likely would not have found otherwise. Comforting! My mom also has ILC (trip negative but doing well 9 years later) but our genetics are clean. We have LOTS of prostate cancer in the family, and I feel one day they'll connect this. -
Also, I was 49 at diagnosis.
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After Trump got elected, I figured I'd better get my long overdue mammogram (it had been 5 years, regrettably) because who knows what would happen to the Affordable Care Act once he took office. I did not feel the lump, and neither the BS nor the RO could feel it. I drove an hour and a half to a mobile digital mammo van so I'd be in the same system (Seattle Cancer care Alliance). Got the dreaded call-back and went to SCCA for a diagnostic mammo and US. Based on the finding of a spiculated mass, they did a core biopsy the same day which was positive. Because of the diagnosis, my blood pressure spiked and I had trouble getting it under control, which delayed my lumpectomy by at least a month. I know I'm a dufus for not having a mammogram in so long. Can't really explain why I delayed, other than just avoidance. Maybe my husband's death from brain cancer 7 years earlier had something to do with it. FYI, my dad died of prostate cancer.
I had a staging MRI which revealed a small satellite mass (5 mm) close to the known mass. This smaller mass did not show up on mammogram or ultrasound prior to the MRI. A preop US was able to see it only because the tech. and radiologist knew it was there based on the MRI and took a lot of time to find it! The surgeon was able to get both masses out in the same incision since they were so close. Clean margins, but one positive node. The actual size of the masses were about the same as what the MRI estimated. Oncodx of 20 with little or no benefit with chemo. Not a day goes by that I don't second guess my decisions along the way. -
@Sicilliana OMG that's the same reason I went in to the doctors last December, Trump and fear of loosing my health coverage. Hadn't been to the doctors in 15 year's. No need to. Felt perfectly fine. No lump, no pains, no sypmtoms to indicate anything was amis. My doctor ordered everything: mammogram, bone density, pap, blood work. This was December 22, 2016.
On my mammogram they saw some microcalcifications and called me in for a second mammogram. The radiologist on hand put in a referral to have it biopsied. On February 14, 2017 I had a stereotactic biopsy. It came back positve for ILC
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