ILC - Old Lady Cancer?
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65. I definitely do not have an "old lady" vibe.
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51 years young!!!!!
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I was diagnosed ith ILC in the right breast this last March at age 64, after clean mammos but personal certainty something was very wrong. I do not consider myself an "old lady". BUT...I was diagnosed with IDC in the left breast at age 51. The doctor said I likely had ILC hiding in the right breast the entire time and tamoxifen slowed it down and kept it under control until the last few years.
My oncologist says there can be a hereditary component to ILC.
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51 y.o. at dx also. Was also told it had probably been there for "awhile". Always had annual mammos, and last year had my 1st tomo (3D) mammo. It wasn't until this year that they saw something. But the area had always felt thickened, as far back as 16 years ago when my gyn said "that doesn't feel right - get a mammo and US". So I did and they said all clear. Went on to breast feed two babies, but that area was always of concern, and sure enough that is where my ILC was found last year.
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37 years old, dx last week.
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JoJo: Your story sounds very similar to mine. I had gone to have that area checked as much as 21 years earlier. Found nothing.
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First, I am amazed this thread is still going. Way to go, ladies!
Second, I am also amazed by the number of pre-menopausal women diagnosed with ILC. I am hearing that ILC is finally getting some attention from researchers. Here's hoping they find ways to detect ILC earlier and improve treatment options. It seems we are all thrown in with the IDC crowd, even when ILC is very different. Sigh,
Hang in there, ladies!
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47 when dx. Post surgery pathology showed in situ in other breast as well. Unreal. just turned 49 and into full menopause. Thanks chemo and tamoxifen, but guess better than death.
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I was diagnosed at 59. No family history of breast cancer other than my paternal grandmother who was diagnosed in her late 80s which they told me was old lady though not using those exact words. In any case it wasn't enough to justify genetic testing. And no one knows if her cancer was lobular.
I didn't even realize there were different types of breast cancer until my 1st biopsy pathology report said I had IDC and ILC. No IDC was found in my post surgery pathology, just lobular. I did neoadjuvant chemotherapy so still not sure if there was IDC which was destroyed by chemo or if 1st report was wrong.
Mine was caught on my mammogram though all that showed was the center mass 1-2 cm's, not the spider like tentacles made it a 7 cm tumor. But I'm lucky it was caught now as I had cancer in 3 nodes. Fortunately they did not see any that had spread beyond the nodes in my PET scan.
The tumor looked smaller on the mammogram than the MRI which showed the mass to be 4 cm and didn't show the tentacles. The MRI also caught another very small 4 mm spot. From my experience I think MRI's are much better and needed for earlier lobular cancer detection. And hopefully research is being done to find something even better.
I am taking an AI which my MO says should be very effective on my type of cancer. Also,finishing radiation next week, hooray! It's hard to not think about data and long term prognosis but I'm trying to focus on enjoying life, making better choices food, doing exercise that I enjoy and not overthink the data.0 -
Welcome to the ILC club, Liwi. I also had a large tumor and much like you described, it was elusive on imaging. ILC is such a scary, sneaky cancer. They described mine as having a "tail". Beyond the 3-4 cm core, it extended out about 2 or more cm. Ugh...tentacles....tails...oh my! Best not to think about it. I had neoadjuvant hormonal therapy, but my BS could not get clear margins after 2 attempts with lumpectomy, so I went with a BMX. I hope things go well for you from here on out. It's been almost 2 years since my diagnosis and it still just blows me away that I had cancer. It's hard not to think about the future and the stats, but I'm like you working on exercising, eating right, and enjoying the present moments. Good luck to you!
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51 and just diagnosed. Freaking yay. No family history of cancer. Ive never had any health problems, Crap, I barely even get colds!!
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BC; YOu have no idea how much those 'I had cancer…" posts help us going through this so thank you.
Mira: I am really sorry you are here. We are here for you.
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Thanks for sharing your story BC. I'm looking forward to thinking and feeling that I "had" rather than "have"cancer. In my mind that transition is when radiation is done, which is next week.
Mira and HopefulandScared, so sorry for your diagnosis. I know it is very scary. I found this site and the discussion boards very helpful as I was going through treatment.
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Liwi: Have you been to the weekly TAxol board? If not, I would like to invite you to come over there and share your experience with TAxol to help those of us who are in the early phases. I just had #3. Did you do weekly or biweekly? Either way, we would love it if you would join us. Congrats on being almost done!
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Trvler.I did weekly Taxol for 12 weeks but haven't been to that board. I'll look for it and woul be happy to share my experience.
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Interesting, my wife had the same thing... stage 2B IDC/lobular, they had to do 2 lumpectomies to get clear margins
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Hello
I was just diagnosed on May 26, 2015 with this Invasive Lobular Carcinoma, and I will be turning 46 on the 21st.
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Hello, MM. I am sorry you have to be here but hopefully we can help you find information and good support. Hugs.
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I am 62, and I was told something similar....that it was most likely an "old lady" cancer and not hereditary. I think ILC gets labeled "old lady" because the average age at diagnosis is in the 60s, compared to the 50s for IDC. As far as hereditary cancers go, the only genes that are well understood are BRCA1 and BRCA2. People with mutations in BRCA1 or BRCA2 are more likely to be younger when diagnosed, are typically IDC, and are more likely to be ER negative.
I went ahead and got genetic testing anyway, and it came back negative for BRCA1 and BRCA2. So the doctor was right....but it was still a relief to know for sure that I did not have a BRCA mutation.
I think there are probably many other genes that contribute to hereditary risk for cancer, but just haven't been discovered yet. My sister and I both got breast cancer. The odds of that happening just by random chance? Pretty low.
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Good point, Atimom. My husband has a work colleague whose wife had it and her two sisters.
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I was diagnosed at 43. There is no history of bc in my family. I was negative for BRCA mutations and was completely blindsided by my dx. I was treated with neoadjuvant chemo (AC followed by weekly Taxol), a unilateral mx with immediate DIEP reconstruction and then radiation. I finished radiation last August and most days I just live my life. I feel great, started a new job, and enjoy every minute with my family. I am not the same person I was before cancer. I like to think that I have grown. I definitely don't sweat the small stuff anymore and don't let silly things get to me the way I used to. I wish you all the best as you go through treatment. I don't stop in much these days but the advice and amazing women here kept me sane. I would love to help in any way I can
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ILC at 40. Caught on first mammogram.
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I was diagnosed at 54. No family history of BC. It makes me sad knowing that my diagnosis has changed the way my sisters and brother, son and daughter, and nieces and nephews will "check the boxes" on all future medical history forms...
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Isn't it odd that I see so many on here with no family history? My female relatives have all lived into their late 80's and 90's with no incedences, No early detection and treatment.
It seems to be epidemic now.
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I know many of you are saying no family history, as did I. But my father did die of prostate cancer and I always wondered if it was even worth mentioning on medical questionnaires. But both his and my cancers were hormone cancers so apparently, there is a link. I don't have all that many female relatives but no BC in any of them.
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BlueBell, I have that same feeling of guilt about my oldersisters, who now, after my Dx, are in a new risk category. Prior to that there was no known cancer in my family. I know it's not a rational feeling, but it's there nonetheless.
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Tryler I have read there is a connection between ILC and fathers with Prostrate Cancer. My Dad had Prostrate Cancer and I had ILC. I guess one day it may be proven that there is a connection.
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It's so frustrating. Not to say that I would have preferred that one of my sisters got it but I am the one who works out and probably eats the best of all of us. My sister eats fast food takeout almost every night and is way overweight. She has never worked out a day in her life.
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Hello all, happy to meet you but sad about the circumstances!
I'm 35, diagnosed in April with IDC, but path report after lumpectomy says IPLC. I'm thinking I should win the lottery fairly soon as I'm blowing all the odds out of the water in the world of BC! This is probably the most surreal thing I've gone through and it's barely even started. I don't know what other types of treatment my onc will recommend as I haven't even met him yet! I'm waiting on a phone call for the appointment. Waiting sucks!!
But I'm happy to have found the boards here, the information is wonderful and everyone is super supportive.
Hugs and good vibes to everyone of us "old ladies" :-)
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I was 35 at diagnosis. That was 8 years ago. No family history that I knew of. Positive BRCA1. Twin sister tested positive as well. She was diagnosed a year later while finishing reconstruction from prophylactic BMX. It was in her nodes under the arm. Never discovered in her removed breast tissue. Would have been detected with an MRI, but arrogant oncologist asked why she was seeing him after her BRCA1 positive results, and not a plastic surgeon. His exact words were..."you don't have cancer, so why are you here?" She was there on the guidance of the genetic counselor and my Oncologist. She lives in Texas, I live in Utah. Because of my case, stage III grade 3 and positive nodes in both sentinel and axillary. If he had done an MRI, hers would have been found a year earlier. ILC is not an old lody cancer, by far!
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