Team ILC Warriors
Comments
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Thank you. I was starting to get really worried that ILC was like having a stalker.
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Chloesmom, same story here. As for the lump, my breasts were always lumpy and weird. I only felt the ILC when it had grown very large and had "gelled" into a proper lump.
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Curious - how many of you later developed Mets and Stage IV?
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Galsal I have bone mets. Im doing good on faslodex injections.
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Sorry to hear that, melmcbee! I'm quite hopeful for a good result, naturally. Since I never did chemo or rads, I feel like I'm back where I was in 12/2011 when this all began.
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Tremendous article in Nature talking about ILC as a distinct disease and the need for thinking about immunotherapy. I am not being able to post the link but the article is captioned :
Invasive lobular and ductal breast carcinoma differ in immune response, protein translation efficiency and metabolism
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OTY, thanks for posting that.
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THis is interesting and concerning all at the same time, where i live they insist on treating ILC the same as IDC.........and I am not brainy enough to understand all this article but it does not fill me with confidence.....pleased it is being recognised as very distinct from IDC though......
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This thread doesn't seem to be very active at present but thought I'd drop a line anyhow.... just diagnosed last Thursday with ILC and thus only beginning my journey.
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Hello to all fighters. My dx came out of the blue on January on my yearly mammogram, well not in the mammogram to be exact but the ultrasound that followed it. You see the mammogram what the same as last year but ultrasound found something hard and an enlarged node...that was the beginning...later that week I had an FNA biopsy at both areas which came out positive for cancer and an MRI (among all other exams I did) showed a large suspicious area at about 3 or 4 cm. That's when my bc doc first told that I will probably need a mastectomy if he couldnt get clear margins during surgery. I wasn't so afraid then I really wanted to get rid of that..
I woke up from surgery and the doc told me that I also had an LCIS near the nipple so mastectomy it was..I didn't regret it. ten days later I've got the biopsy results: 1.5 cm ILC with some IDC in it. (maybe it was the IDC part that showed) , 7 positive nodes of 17 and ER PR + HER2-. It was sure that I would have chemo.
Now I'm during chemo and its the first time (except of the first days of diagnosis) that I'm in dark thoughts....Its nice to see people here that are doing good...gives me hope...
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OTY, are you able to understand this article and its possible implications for treatment?
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Wow, so glad I found this topic. I have been confused as to why my treatment for ILC is the same as IDC. Everything I've read says they are different.
I'm half way through chemo (just finished my 4th A/C) and am supposed to start Docetaxel in 2 more weeks. Luckily I will be getting a second opinion before that starts. I'm kind of freaking out about the Docetaxel. The side effects are pretty scary from what I've seen and read. My chemo has been amazingly easy until this last one. I've been sick and dizzy for a week and my blood counts are all screwy this time but I really can't complain since I've been extremely healthy till now.
I want a double mastectomy (I will NEVER go through this process again so anything I can do to improve my chances of preventing recurrence I want done) but my surgeon says he's never had a patient that was happy they'd done both sides at the same time. We are meeting next week to figure this out.
I'd love to hear from anyone who had a double mastectomy, done at the same time, and found it was the right thing for them. I can't believe everyone regrets it! I don't want to go through two separate surgeries. I'm pretty hardy and can stand a lot of pain. I would love to just do it and get it overwith.
I'm frustrated since they haven't even staged me yet. The lymph node they thought was involved didn't supply enough fluid to be biopsied so when they went in to retry, the node had disappeared. They couldn't even find the clip that was in it. Strange. It means, though, that they can't give me some very critical information on important things like survival rates and what kind of surgery I'm looking at. It seems odd that I'm being treated without some of the hard facts being known. Of course I've never been through this so maybe that's just how it's done, but it makes me uneasy.
To top it off my plastic surgeon mentioned a mass in my other breast that is now growing. I guess if it turns out I have ILC in both breasts it is better to take care of it all at once. Just seems so haphazardly handled to me. The doctors all (except the plastic surgeon) all seem so worried about "conserving tissue" when all I want is to get everything off and get reconstruction. It seems a guy thing that they don't like to take the entire breast. Sometimes it makes me tired just dealing with all these doctors. Yikes.
I'm interested in hearing opinions from those who have been through this. Not an easy path but thankfully I am an ILC Warrior woman too.
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I had one of each ilc and one idc. But the idc had lobular features. I still am confused I thought the typing was getting away from where the cancer occurred and more about the actual tumor. My doctor said standard of care is the same. My oncodx was 34, er 95% pr negative, like 0. But the nottingham scores were 5 and 6, so grade 1 and 2. I didn't do chemo I did 4 years AI drugs. I am still cancer free 7 years later. Each year that goes by I feel better about recurrence. 60 years old.
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Gypsi, I insisted on a double mastectomy and ended up switching surgeons to get a surgeon who understood my concerns and was willing to do what I wanted.
Statistically it does not prevent recurrence. However, with ILC there is a problem with imaging. So I knew that I would never feel safe. I also knew that the imaging and follow-up schedule they had in mind for the "good" boob would drive me around the bend. Finally, I am a symmetry person. I just knew that it would be less stressful for me in daily life to be equally flat on both sides.
As it turned out there was all kinds of pre-cancer in the good boob as well. My surgeon said I had made the right call.
Being boob-less clearly has its downsides, however, and many patients are thankful to be uni-boobers, because the remaining breast still works sexually. I have not had recon, for various reasons, but the main one being that I have yet to see a recon job (on someone with my treatment profile, i.e rads!) I liked. To put it bluntly, no recon I have seen would make me feel any more confident or comfortable in a nekkid situation than just being flat. This is extremely personal though. Many women love their reconstructed breasts and don't mind the odd shapes, scars etc. I would mind. When dressed, a bra with inserts works just as well, without the pain and expense of multiple surgeries.
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Gypsi, there's a FB page for Lobular and I'm sure many of the women would be happy to comment on their experiences - this is often discussed. Here's the link:
https://www.facebook.com/groups/Lobular/?ref=bookmarks
Good luck!
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Thank you Meow13, Momine and MRock. I'm happy to hear your experiences!!
There is so much conflicting information out there that I feel the only information I can truly trust comes from women who have been through this. Hearing you did the double mastectomy Momine is heartening. Intuitively I know that doing both breasts -- and at the same time -- is the correct thing for me. Intuition isn't sufficient logic to take to my surgeon who is extremely reluctant and wants to do one breast at a time and obviously he isn't going to have faith in what I learn on the internet. Hearing real life stories provides me with some inarguable reasons to do what I just know is right.
I also like what you said about reconstruction. Symmetry is an issue for me as well. I am actually looking forward to some nice perky 20 year old style breasts on my 60 year old body (yeah, vanity) but cannot see how they could possibly do it one at a time. Plus I'm burning daylight here! I don't want a two year process. I'm less concerned about sexual function than having a nice set of boobs. It's my silver lining in all this.
My plastic surgeon and I have some good laughs while we are sorting it all out. I'm lucky to have a surgeon that has a good sense of humour and likes my enthusiasm about what he's going to do for me. Anything I can find that lightens this experience is a blessing in my books!I've applied to join the Facebook page so hopefully I will have more arrows for my quiver when I see the mastectomy surgeon Monday. It's very sad when anecdotal evidence is more reliable than scientific research. Really, there needs to be some work done on breast cancer. Quit worrying about Viagra, put your penises away and put that money into giving clear answers to women whose life depends on it. Bah. I won't get started.
Again, thank you.
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Hi Gypsi,
I opted as soon as I heard BC, to do a double. Besides not wanting to potentially have to get it done later on down the road or the 6mth survelliance that my BS said I would be put on if I opted for a lumpectomy, plus having a chunk removed from tiny boob , I said off with them. It was also nipple sparing.
I could not do DIEP, the PS said I did not have enough fat to use. Tissue expanders would have been issue also since my skin was tight too. I went straight to implants. Of course using my own tissue would have given a better look, I'm good with the way I look. Have ridges that I notice but I'm a little bigger and much more rounder than I was before and cleavage! Didn't come out with a C or a D ,,,a B..but it Fills out the bikini top just right for me. Don't have to wear a bra,,they stay up and I'm alive. My guy has no complaints about them either.
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beach2beach, do you have sensation in your breasts? I was wondering since you had nipple sparing probably skin sparing surgery.
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I'm SO GLAD I was able to find this group of brave ladies! I'm kind of worried about the decision my oncologist and I made to skip chemotherapy and I could certainly use some encouragement that we made the right decision (especially after some well-meaning friends have planted some major seeds of doubt in my mind). After being diagnosed on November 29, 2017 with ILC and DCIS in my right breast (with a 40% chance of cancer also showing up in my left breast...and as a side note, the pathology reports shows they found LCIS in my left breast! Glad we opted for BMX! ), I had bilateral mastectomies on January 26, 2018. The 2cm tumor was ER+, PR+, and HER-2 negative. My surgeon hadn't anticipated lymph node involvement and so she just took the one sentinel lobe. On my followup appointment on February 7, 2018 with my surgeon, I was shocked to learn that the pathology report found the sentinel lymph node she had removed was involved by cancer with a 1.9cm extracapsular extension present. In spite of lymph node involvement, my oncologist suggested the ONCOTYPE DX to determine if I would benefit by chemotherapy. On March 13 my ONCOTYPE DX came back with a score of 17, and my oncologist determined chemotherapy would not be necessary or add significant benefit in this situation. I was so excited that I wouldn't have chemo! On April 25, 2018 I started 5 weeks of radiation to my chest wall and regional lymph nodes, I completed radiation with minimal side effects on May 31, 2018. I'm looking for encouraging news from other breast cancer survivors of ILC and DCIS with lymph node involvement, that have also skipped chemotherapy.
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Gypsi, by the way, about symmetry and recon, the first surgeon kept swearing up and down that if I had a single mastectomy, the PS could make a new one that would match the existing. I just kind of stared at him. I was 48 at the time. My breasts had been destroyed by child-bearing. Objectively they were not that bad, but during the pregnancy I had gone from an A-cup to an almost C, and they never shrank back down. I hated being that big. They had also gone soft, to the point that I could stick the famous pencil under them and the pencil would stay put. I hated the feeling of boob touching my ribcage. Besides, they hurt all the time. I always had painful boobs, but after the pregnancy it got much worse. So the idea of going through multiple surgeries to make a fake breast to match the one I didn't like in the first place seemed nuts.
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Momine, wow we had such different experiences.
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Meow, I am kinda particular
I much preferred my pre-child set, which were basically like those of a teen (I was a very late bloomer). Never wore a bra, perfectly firm, nipples in center. I doubt any PS would believe me if I insisted I wanted to be an A-cup 0 -
Oh I don't know I think they would do what ever you wanted. I was happy with the way I looked and felt at diagnosis I just had umx with DIEP reconstruction. I loved the flat abdomen, but a large incision scar luckily below bikini line.
I do wish we could cure breast cancer without surgery and/or radiation.
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Meow, right, I was definitely not happy with the way I looked. Avoided mirrors at all cost. I do need a tummy tuck, but am reluctant to get a scar that big. It is only skin, no fat, so can't be used for a DIEP anyway (also previous abdominal surgeries). Am debating which is worse, the loose skin or the scar
It being in the bikini line doesn't help me. I only really care how I look naked. I may look into non-surgical skin tightening methods.PSs seem bent on making large breasts, judging from pictures. I have also read many accounts by women who were made bigger than they wanted to be, because the PS decided bigger was better. In any event, reconstructed ones wouldn't be adequate in a naked situation anyway, so it seems rather pointless, from my perspective that is.
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Momine, I am happy with the look but I must say the scar doesn't feel that good. Sensation is coming back all the time and the incision irritates me, sometimes itching. Or just down right uncomfortable at night lying down.
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Meow, I am glad your recon worked out well for you. The itching etc. is part of non-recon life as well, unfortunately.
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@ Meow13..Yes, I have been getting more and more sensation back. I have to say, it must be the way the nerve is sitting on both breasts, did I just say breasts? lol..my foobs.. on the upper outside, it is the most sensitive to touch and dare I say, a bite on the nipple does illicit an ouch, but they do respond to touch etc. If anything, if I could eliminate the scars that would make a big difference to me. Seems after 6mths..my little foobs settled in and the scars seemed to move up. Is what it is and at this time I'm not looking to do much more. After last summer being ruined dealing with this, I want to enjoy the summer.
Dodgerick:. it is tough wondering if you've done everything you could. Sometimes even throwing everything at it from the get go does not necessarily guarantee no recurrence. I'd look at the radiation as cleaning up anything that is possibly lingering in the area. I had no node involvement and an OncotypeDx score of a 9. Does it mean a rogue cell(s) did not migrate elsewhere prior to surgery? I'd like to think not but who knows in the long run. Once again, no guarantees. Hopefully we will never have to be in this position again, but if so we will have Chemo in the pocket to use then. If it would make you feel better to get a second opinion, go for it. Know going in though that there is a chance another Dr. may say yes, you should do it. The way of thinking of hitting it so aggressively and for some to the point of such nasty permament side effects has come along way since this test. I hope you find peace with your decision and live life to the fullest without the constant niggling if you made the right choice.
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beach2beach - I guess the radiation could have "cleaned up" anything lingering in the area....and I'd REALLY like to think that....but can they be sure? How often do they recheck? My surgeon said she would order another PETscan at the end of this year. I know I'm fortunate that the doctors were able to find this sneaky ILC was at all. Yes, I've had a second opinion (with an oncologist at Stanford) about 8 weeks after surgery and he pretty much agreed with my oncologist here. That made me feel better, until a couple of my friends that are in the medical field questioned my choice on no chemo, and I started getting scared again. (In case you haven't figured it out yet, I am a worrier...it's something I'm really good at! Ugh!)
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Hi! Just wanted to tell a little of my story in regard to chemotherapy and ILC. I was diagnosed August 2017 with triple positive IDC in two areas of my left breast. One was superficial and was at least 4cm and then there was a area deeper that also was triple positive and I’m not sure what size that was but because of the Her2 positive status in both areas it was on for chemotherapy. I did 6 rounds and by the 4th round there was literally nothing left to feel (superficial lump) and per my MO he said my breast felt completely normal. This of course gave me incentive to finish the last 2 rounds. I had no hesitation and wanted to double mastectomy because I too did not want to worry about additional mammograms. I have anxiety just having an x-ray these days let alone a mammogram every year.
Long story short.....I had surgery this past January and my surgeon said he did not expect to find anything in the nodes but turned out I had 2 sentinel nodes positive and go figure it was a completely different cancer that they found...... that deeper area they also found to be 2.2 cm. ILC so I basically had 3 areas in my left breast...the one that was deep was really two but very close together IDC triple positive and ILC ER positive and Her2 negative.....there is so much to this story but what I want to say is in my pathology report it said Neoadjovent therapy was non effective to the ILC.
Chemotherapy is good with aggressive tumors like what I had HER2 positive and it def worked as the superficial tumor was almost gone...there was literally nothing to measure at the time of surgery....but it did not touch the ILC. Just thought I would share...
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SFOgirl, Thank you! Thank you! Thank you SO VERY MUCH for sharing your story with me! I REALLY needed to hear from someone like you to confirm that I made the right choice with the ILC and no chemo therapy! (Although I also had DCIS in the same breast I had ILC in, but according to my MO and the ONCOTYPE DX, surgery and radiation should’ve taken care of it all). I would imagine that at some point they’re going to do some kind of a scam on me to check on the atatus of the cancer in my lymph nodes, right? I wish there was somebody out there to guide me through all of this! I don’t know what the next step is and I have no idea what the timeline is on any of this.
Best wishes to you and your recovery! I hope everything goes smoothly from here on for you! Thank you again for sharing your story with me, it really means a lot to hear from another survivor with success story! Thank you! Hugs!!!
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