Team ILC Warriors
Comments
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Hi Megan,
Welcome! I was diagnosed on the 21st as well but three years ago. I remember it as if it was yesterday. I'm so glad you found us. (((hugs)))
Amy
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Hi Megan --
These groups were a lifeline for me in my early days, and a core group of friends from here still is. Come back next week and update us. We'll share!
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aloha all,
Why haven't I found this group before? I am a warrior too...a worried one. I will be going to round 5 of chemo next week and also having a followup mammo with my bs. I am trying to make the decision whether to go on with rads or do a bilateral mastectomy so that I will have less to worry about -- literally.
To add to my profile, i also had re-excision to get a better margin after my lumpectomy, since mammos, ultrasound and mri saw only 15mm and 9mm lesions, which turned out to be 6 cm and 9mm.
Yes, ILC is sneaky and with dense breasts, do i rely on another lucky shot by the radiologist?
Warm hugs to all!
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Hawaiimom - my dx was similar - MRI only detected 2 ~1cm spots that turned out to be a single 5cm monster after my mastectomy. I plan to have the other side done as soon as possible. Overall, the worst part of this whole experience has been the anxiety while the easiest part was the mastectomy (I know there are many here who would probably disagree here
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Now waiting to see the RO and MO next week to see what my next step will be.0 -
Welcome all, I had both rads and a BMX with immediate reconstruction, and neither were as bad as 1) I had read about and 2) I felt good that I did both. My BMX uncovered some mild dysplasia in my good breast that might have turned ugly, so I was really relieved to find that my decision was justified. My rads didn't hurt my skin much, but I did have to wait a year to have my BMX and recon.
This ILC link on bc.org--truly, all the discussion boards and threads--were a lifesaver for me. I felt so isolated and targeted by some cosmic joke when I got my dx but when I found all the ladies (and a few guys!) on this site, I felt so much better and got so much helpful info.
Claire in AZ
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I agree that the anxiety is far worse than the tx. I sailed through my tx. However, since ILC is so sneaky, I am always worried that more ILC or LCIS may be present but undiscovered since imaging doesn't see lobular carcinoma easily. I was dx with pleomorphic ILC, pleomorphic bifocal LCIS, invasive tubular carcinoma, and numerous atypias. I can't help but worry. Pleomorphic means more aggressive lobular carcinoma. I finished rads in October 2014 and I ended up having to have a biopsy in May 2015 (7 different benign findings) and another biopsy in November 2015 (atypical lobular hyperplasia).
Good luck and thanks to everyone.
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I had my BMX 13 months ago. Was afraid of rads frying tissues and wanted to save the opportunity for rads as a backup plan in case heaven forbid the monster returned. They didn't make it clear that once you play your rads card you are done. Had I done a lumpectomy it eWorld have been with rads. Looking back I'm so glad to have made this choice. Called the imaging center to schedule a dexa and they asked if I wanted to schedule a Mammo too. So glad I don't have to worrying about mammos anymore! Enjoying the flat and fabulous life
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Dear Chloe's mom:
I am very happy for you. My RO did make it clear that Rads can only be performed once. I was aware of that but I do not know whether everyone knows. I am praying that I never have a recurrence.
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Saw this and thought of all the brave warriors here!
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I love this post, grandma3X!
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Absolutely terrific post. Thanks.
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This thread seems to be inactive, but I searched long and hard for this topic. I have yet to begin treatment and am still vacillating between single or double mastectomy. My tumor is large enough that a lumpectomy would leave an ugly divot at 12:00 on my right side. I also am considering pushing for chemo since I am young (44) and want to eradicate this beast as much as possible.
xoxo Michelle
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MFalabella - so sorry to hear that you have been dx. ILC is a bit of a beast. It is sneaky (hard to see on mammo and MRI). I did not have chemo because per my MO, chemo is not as effective against ILC, but there are other considerations, for example node status and grade. Once your MO has outlined the tx plan, I would say go with your instincts, even if you have to push to get what makes you comfortable. I am in Canada, and they do not like to do prophylactic mx, and they like to try lx first. Unfortunately, ILC can prove difficult to remove in one go. I had 3 lumpectomies and never got clear margins. In retrospect, I should have insisted on a mx after the first lx, back in Dec. Good luck
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I'm curious - those of you who had larger (or at least larger than mine was) tumors, were they ever felt and if so at what size? No less than Five physicians never felt the 1.9cm one I had is why I ask. I know that Lobular is unique hence the question.
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I could feel mine Galsal, for 18 months I could feel it and no-one would believe me as they couldn't pick it up on Mammogram. Still peed off about this, can you tell haha? Mine felt like a little sausage about the size of a small finger nail.
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Fizzdon - I had a lump for 2 years that grew to 5 cm. I had 4 mammograms and 3 ultrasounds during this time and nothing showed up - I was first told that it was scar tissue from a cyst, then that it was a band of fibrous tissue. Yes, still a little angry. The last mammo I had, they advised me to wait 6 months and come back again. I'm glad I finally followed my instincts and went for a biopsy.0
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I had a lump about 1.5 cm. The US came back highly suggestive, but it never showed up on mammo or MRI. It was confirmed via core biopsy. When they finally took it out it was 4.5 cm and was in all 4 quadrants of my breast.0
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I am sorry that you find yourself with an ILC dx. ILC is very hard to detect and it is sneaky. I would recommend having a double mastectomy rather than a uni for cosmetic reasons. You will be symmetrical. You will also have much less to worry about in the future regarding a recurrence. I wish you the best of luck and I am sending you hugs and prayers.
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Galsal I had no palpable lumps. Absolutely no signs or symptoms. Neither my breast cancer specialist or my breast cancer surgeon could feel them even though they had the mammo and ultra sound results in front of them. I had multi focal disease with 4 cancerous lumps. The largest turned out to be about 4 cm. Almost double the size that it appeared on pre surgery imaging. Lobular certainly is sneaky.
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Precisely why I chose a BMX. It was the best choice too since all points that showed on U/S were various types of Atypical Hyperplasia. Five more than the actual tumor in Left and Two in Right. BS agreed it was a matter of when the other shoe would drop.
What you experienced is why I wasn't permitted to have immediate reconstruction - they were afraid I'd need rads or that it was deeper into the chest wall, etc.
Still have at least one year on Aromasin.
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I am always afraid that I may have ILC present but that it will not be able to be detected on Mammogram, Sonogram, or on MRI imaging. I was diagnosed with pleomorphic ILC and bifocal pleomorphic LCIS. My second lump was biopsied twice and it came back benign twice. It did not come back malignant until the pathology report after my lx showed the malignancy and the additional pleomorphic LCIS. I believe that I got really lucky that my breast cancer was found. A different lump that had previously been biopsied changed and so I was sent for another biopsy of this lump. The pathology report showed my PILC. I serously doubt that my bc would have been diagnosed until it was much larger if I had not previously had that biopsy. I really dodged a bullet. However, I currently have ALH all over my left breast because I have been diagnosed with ALH after completing my bc tx. I am praying that the Arimidex/Anastrazole does it's job and that I will never have a recurrence or a 3rd primary bc (in addition to my LCIS).
Good luck again to everyone here.
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My MO said if I had seen her before the BS she would have advised BMX. Not that we live longer but we have less procedures because so many people have to do more lumpectomies then MX due to unclear margins. I also trusted my gut and had a BMX because lefties didn't feel right. MRI was neg and 2 doctors said BMX Wasnr needed but afterwards the BS surgeon sI I was 2 years from a MX on that side after he read pathology report. The worry with each Mammo would have made me ill. Once and done is my choice but it's personal.
The fitter said it's much easier to fit a bra for foobs with a double. Hard to match people up to get balance so no strain on back. . I do flat except for dress up and it's comfortable can stand taller without the weight in the front
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My story is much the same ass many others out here... Had a cyst for FOREVER, thought something had changed and the doc didn't believe me... never showed on mammo... had to push to get a diagnostic mammo and US, finally someone could see it... ILC is sneaky and we have to go with out gut.... I did BMX and wouldn't have changed that for the world. Personal decision, but it was right for me... I go flat except for special events, and sometimes, not even then, no one notices...
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hi Michelle,
I was diagnosed w ILC in December which was in 2 tiny lesions, 9mm and 5mm, in my left breast. MRI showed that the right breast was clear. My bs supported my decision for bmx to achieve symmetry in recon as well as peace of mind for the future, i.e. No mammos! As it turned out, the path on the right breast afterward showed LCIS as well as DCIS, so my decision was a good one. Not sure why the bilaterality of ILC is not discussed more but it was an important factor in my decision. It always helps to get several opinions and trust your instincts. Wishing you all the best
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Same story. I first felt mine in the shower in late January of 2013. Wasn't sure what I was feeling, but whatever it was, I knew it didn't used to be there. Waited a month to be sure it wasn't monthly-cycle related, then went had a mammogram and ultrasound. I could feel it. The ultrasound tech could feel it ("It feels like a little tennis ball in there," was what she said,) but it didn't show up at all on mammo or ultrasound. "Dense breast tissue," was the verdict, and "Come back in six months." And yeah, I'd had mammograms every year for several years before that.
After the six months I went to a different doctor who sent me for a new mammo and ultrasound that very same day, and to a surgeon the following day. The surgeon sent me for an MRI; it definitely showed up there.
I was a little angry about the six month wait for a while, but my oncologist told me I'd probably had the cancer for maybe as much as ten years, so the six months really didn't make that much difference in the scheme of things.
All this is a large part of why I did decide to go with the BMX.
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Aloha everyone! Glad to see this string active!
My ILC could not be felt. I was told it grows in folds and very slowly. It was a lucky radiologist who saw a "structural anomaly" in my mammo. Thank God for Dr. Kevin Trevino! Anyway, ultrasound detected one 15mm and one 9mm in my right breast. MRI agreed. Surgeon found the 15mm to be 6.5cm and margins were clean but less than 1 mm, so I went in for a re-excision. After chemo, many prayers and much soul searching, I opted for a double mastectomy. It's been rough but with that sneaky ILC, I didn't want to play Russian Roulette...I've got three beautiful kids whom I need to see to adulthood!
I met a nurse who had one breast removed 15 years ago...she told me her only regret was that she didn't have both removed so she could be symmetrical. That conversation sealed my decision.
I hope our posts help you make your decision. The decision is definitely unique for each woman. Irreversible, too!
Sending cyberhugs and prayers to all!
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My story is similar...Small IDC tumor showed up on regular mammo. Was scheduled to have a lumpectomy with IOR until a pre op MRI showed another suspicious area which turned out to be ILC. So if not for the IDC the ILC probably would never had been detected. At least not for a long time. I decided to have a BMX due to the obviously difficult screening issue. Good luck to all who are fighting this disease....
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My 4 cm tumor doctors couldn't feel even when they already knew it was there. The giveaway was that my breast changed shape and at that point I was already stage 3. Only 9 months earlier, both, mammogram and sonogram were declared normal and so was the breast surgeon's exam.
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Absolutely terrifying!! My ILC is pleomorphic. I am always scared of what happened to you. Good luck.0 -
Thanks for your wise insight dear. I am still playing the waiting game, although do have an MRI scheduled for today to check again for any other suspicious areas. Good Luck to you as well. I wish you good health and peace.
xoxo Michelle
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