Team ILC Warriors
Comments
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Im so sorry it was a typo re lobular, I mean to say the doc said lobular is NOT likely to be braca posiitve.Chemo brain
. That said the genetic counsellor I saw said the type isnt the only predictor and I had a cancer soup going on in there. 0 -
Rdrner, those are the kinds of typos I like
Good-news typos...I remember that my surgeon told my mother and husband that my ILC was RARE...he told them I had cancer before I even knew (before I woke up from my ex. biopsy--now that really made me angry....grrrr) anyway, he freaked them both out as though I had some awful one-in-a-million dx that meant it was super-awful.
As soon as I got home I did some research and found out yes, only 10% of dx are ILC, but we are far from rare. Just less common, and as such deserve our own rx/tx plan and follow-up apart from the IDC and other groups. I wonder--what are all of you doing to prevent recurrence? Supplements, exercise, meds, etc. etc. and is there anyone on this thread whose dx happened more than 5 years ago?
Anyway. I am so glad that although we are less common, we are all here for each other.
Claire
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Less common? Can't we just say we're "special"? :-D
Having a bit of a rough day. I had been feeling pretty much like my old self, albeit scarred and boob-less, when I went into TE surgery last Monday. Now I feel like a cancer patient again. :-(
The fact that this was elective and I could have skipped it makes it even more difficult.
I worry that if the BC reappears, I will have voluntarily wasted days in pain for vanity.
Sigh......such a mental game.0 -
I thought ILC was 15% of breast cancer cases not 10%.........?
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Hi ladies, I am 2.4 years from diagnosis and have learned a lot along the way.
Lemon, don't worry too much about the ITC. They are classed as node negative, but I had chemo anyway as extra insurance.
Soccrmom13, as you are HER2+ chemo will be strongly recommended for you as it is given in conjunction with Herceptin for HER2+.
My treatments were TAC chemo and now Femara. If your onc recommends a course of eight or more chemo infusions (and you are not HER2+) ask about TAC as it is only six treatments, is 'third generation' and from what I have seen is very effective.
Also, Femara has been proven to give superior results for ILC. (It's an AI).
Lastly ladies, consider counselling and/or medication to deal with the psychological/emotional side of diagnosis. These things have helped me.
Best wishes to you all.0 -
Thanks Racy for the reply. I saw the radiologist today and have my MO appointment on Tuesday. I have a list of questions to ask. I so appreciate all the info from everyone. It is so very helpful. I agree Racy with the comment about the emotional/psychological side of this diagnosis. My emotions have been all over the place. Seems to be a bit better as I am finally getting a clearer picture of the next steps.
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I am so happy to have found this board. I am almost two years out from my last chemo and still seem to be holding my breath, however it does seem to get a little better with time. I was diagnosed with DCIS and the ILC was never detected on a mammo. It was found by the pathologist after a lumpectomy for the DCIS. I was lucky they found it in the lump they removed. I then had a mastectomy and nodes removed. It was very small tumor and yet 11 of 13 nodes were positive.
I have recently found a lump mid chest that I am going to have removed in the next week and a half when I go in for my next fat transfer. My MO is not concerned but for peace of mind I am having it removed. I just don't trust that lobular stuff or my body for that matter.
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Lemon, you are sweet for asking, thanks. I finished #17 today so half way through. Some irritation, mostly the underarm area but lotion and loose clothes help. Very tired but in a different way than with chemo; I couldn't rest well with chemo at all, but seem to be able to sleep better now.
I hope your back is feeling better; I'm sorry that you will need another scan and hope very much that it is clear. My BRCA came back negative; I hope that yours will too.
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hi all!
i hope it is okay if i join- for my MOM
that's why i am here, and because she is currently here with me in SoCal, she can read all these posts and i can post for her as well- she doesn't get on the internet by herself.so first off, my mom is 76yrs, i am her support person/advocate and doing all i can for her right now... so far, so good!
on 1/24/2013 my mom was dx w/ ILC in 1breast, via u/s & needle biopsy-
and speaking of tumor size? the pathology& 1st surgeon where she lived, agreed it was less than 9mm! i brought mom down here to socal and she went to Excellent Surgeon here, who felt it at least 2.5cm, and felt it most likely might be bit bigger. it was! 5.3cm!! it is amazing how ILC is so hard to detect!!!
*for that matter- for years my mom complained of an inverted nipple, and then skin changes to breast. she told her dr she was worried re breast cancer. but b/c her annual mam was neg, dr told her not to worry---- and here she is! ILC just doesn't show up, nor did it ever get palpated... though again, the surgeon here was able to palpate the 2.5cm right under her inverted nipple....
so it has been less than 1mo since dx, but last wk on Valentine's Day, she had her BMX w/o Reconstruction. just rec'd path on tissues- mixed with her ILC was LCIS, DCIS, ALH, ADH. her "good" breast showed ALH, LCIS. (none of which was picked up on past mams)
ok, moving on!
good news, no nodes!!! 0/5! also ER/PR+, HER- so she will do the femara most likely,and d/t tumor size will have radiation.
****Question? my mom's surgeon today, again- it is just 1wk since BMX, but when we inquired re an Oncologist referral, the surgeon said not to think about that and for my mom to take the time and just heal from surgery==== yet, i see many of you going to meet with MO right away it seems like? is there a "rush" or is it ok to take a few weeks? even though my mom is 76, she wants to treat this as aggressively as possible--- the gals in her family tend to live to 90s! she has no other health problems aside from this, and is planning to go out as a cancer *survivor* !!
as all of you are as well
ok, let me know if i can join? or rather-- if "we" can join, my Mom & I
thanks so much, this is a wonderful website, and thanks for this warrior group!
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You need to heal from surgery before chemo or rads and your mum will need an annual MRI as only they show lobular.....hormone treatment seems to be the most important for lobular.....she sounds a brave determined lady
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Chasingdreams, you typically wait 3-4 weeks after surgery to start further treatment. But there is nothing wrong with getting the ball rolling and have a meeting with the MO. The fact that your mom had no nodes is excellent.
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Chasingdreams, I'm so glad you and your Mom found us! Too bad the circumstances are what they are for all of us. Onward we go! 😊 My surgeon told me I needed to heal at least 4 weeks from a lumpectomy before starting other treatment. I have my "first date" with my MO on March 1 (4 weeks) and am hoping the result of my oncotype test will be back by then so we can actually discuss treatment - whether or not I need chemo or head straight to rads. I'm tired of the waiting. Hate it! 😠 But that's par for the course. Seems to be everyone's biggest peeve, too. We all just want to get on with our treatment and get this crap out of us! Please keep us all posted. I'm so happy your Mom had no node involvement! That is excellent news! 😃
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Another ILC here. Brca was negative for me btw, even with a slight family history. I opted for BMX since I'm one who would be a basket case, worrying all the time about it coming back. This one is so difficult to detect. I was incredibly lucky that with the very dense breasts I had mine was found; it just happened to show in an opening of the density. Because it was ILC, I was not permitted to have immediate reconstruction. After the final path report was discussed with me, I asked the BS if the tumor was expected to be larger due to being ILC; answer, yes. That is why I wasn't allowed to have immediate recon. They were afraid I'd need rads in spite of having a BMX. I feel incredibly fortunate that my Oncotype score was not in a gray range or too close to it; it was fully in the no need range with a result of 12. I'd worried about it being larger than expected, since there was quite a number on here where the MRI didn't see anything in the "clean" breast. My choice was the best - turns out besides the ILC there was ADH and ADL in most of the inside half of the affected breast and the non-BC side had ADH and PASH. Yes, I bit the bullet and went for the big step of BMX but it saved me having something pop up again in 6/12/18 or 24 months, etc.
Compared to so very many, I've had it "easy". Except that an attempted Diep was aborted during surgery due to my throwing blood clots from arteries and veins. Based on that, I've decided to not have any reconstruction. I researched the implants (te's and one-step), fat transfer, etc. Let's face it - there's almost no method of recon that doesn't require multiple steps for the most part. Even the one-step has issues for me, since there's no stretching of the muscle but direct placement of an implant. I've enough left over to go for a B or less. I'm just not willing to put myself through that for breasts, nor put my life on the line potentially.
I'm glad there's a group, not just a topic section, specifically for ILC. It's astounding to me that this is the second most common type of BC yet 10% or less have this type. Yikes!
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I too had pash on my other side but they said it was nothing......still worries me and now really scared this year will be repeat of last.....
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I must say, when the dx was first given of BC they weren't sure what type it really was other than it was coming through as a ductal/lobular mixture. At that point, all was wiine and roses about how it was such an early stage, it was the better type to have if one must have BC, etc. When we returned for the options appointment, the demeanor became quite grave of the BS and the NP. They'd identified that it was pure ILC.
Just throwing that out there...did any one else's experience go that way once they knew it was ILC?
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Chasingdreams- we are sorry you are here but glad you found us. Like most have said, healing has to happen before any further treatment, its pure torture. Telling your mom to rest, is so easy to say, not so easy to keep the mind at rest! Clean nodes!!! Excellant news. Also ER PR+ and HER2- another good sign.
Nancy- glad you are tolerating the rads.. I want to get the show on the road..BRCA waiting....between that and having to have the back MRI I feel like a walking timebomb.
Galsal- welcome, I think we have have met on another board at some point, or I was lurking and have read your posts. I am glad you are here. Reality is quite frightening. I had a contrast MRI showed nothing else in Right, said left was clean. I am not sure how I can breathe easy when I know this ILC is so tough to find. I understand why you made the choice you did. If my BRCA is + I will ask for them to be removed and hope for immediate reconstruction, interested in DIEP. If negative then rads and tamoxifen. I dont feel like I got to make that choice. BS, MO and RO said it was not medically necessary to do a BMX, said I had no reason to do something so drastic. Called me ILC a isolated incident... isolated my a$$!! Not when there was DCIS and LCIS in there too. I am not sure what will make me rest easy. I do not want to go through this again or put my family though it. I just turned 44 when DX. I like Chasingdreams mom plan on being around a LONG time! I am at peace with the decision and other times I am not. I think the boards tend to scare me more. I know its reality as I said reality is frightening. I am sorry your plans for reconstruction didnt happen. Life is more important.
Kestrelgurl- I am sorry you are feeling like a cancer patient again! Just not fair. Dont think of it as vanity, what is fine with one,isnt fine with another, neither is wrong. I am sure your new "girls" will be beautiful and if it helps you I think its all worth it. The decisions are so personal and your right it is a mental game, not a fun one. Hang in there, I hope your feeling a bit better as of today.
chermatch65- Good luck on your upcoming surgery, we will be here waiting for you to tell us ALL CLEAR!!
AND LILY!!! the results of your MRI?? Are they crazy making you wait like this? Your a strong woman I would be banging on their door for my results. I think I can learn patience from you and probably alot of other stuff also.
Sorry so long, all my love to all of you.. and prayers
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Geez, I read my posts and sound like I am crazy.. I just might be.. Did any of you feel like that or is it just me?
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You're fine Lemon
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Lemon68, you're not crazy! I've been lurking around this breastcancer.org looking for answers to my many questions and came across your 2013 warrior thread. What an amazing group of women! I've learned so much from reading about their (your) experiences. Even though most are just beginning their journey they have a wealth of information to share already. We have an equally amazing group of ILC warriors here, too, and I'm so looking forward to getting to know everyone! I'm thankful there is a place I'll be able to go to for answers, for support, for a ((hug)), for a rant, for a cry, but especially for that HAPPY DANCE! 💃
A big welcome to everyone who is new to this thread! I'm so glad you found it and us. You are all amazing sisters!
Nancy, thank you for the kind reply. I appreciate it so much! Will PM later as it's late. 😊
Peace and hugs to all!0 -
Hi ladies. I had a clear mammo 6 months before I felt my lump. Since the biopsy showed it was ILC, I opted for bmx. My pre-op mri showed my tumor at 5.9cm but it turned out to be 3 tumors and the biggest was 2.9cm. During my surgery the sentinel node showed as negative on the frozen section so they didnt take any nodes out. However the final pathology came back positive with macro metastesis. So a month later I went back for my axillary dissection and port placement for chemo. I had a horrible time with chemo as far as bone pain and I have almost finished my radiation with only 3 more boost treatmenets to go. My burns are healing and I will be going back to work in about 2 weeks. It has been an 8 month process since the beginning. I will have reconstruction done in about 3 months. But its almost over and I really dont remember now how bad chemo was or all the other bad stuff with surgeries and all. I have had a ton of test done since diagnosis to rule out any mets. Nothing shows up on these tests and I was worried that it didnt mean anything because lobular is so hard to detect. I had to finally get over that. I could walk outside tomorrow and get hit by a car or have a geart attack and my continuous worrying was only making me more miserable and unable to enjoy the fact that I am almost done with treatment. I made it. I survived it. lol. I will continue getting my bloodwork done but the best way to catch a new reoccurance is by symptoms. I can remember before I found my lump I was extremely tired at work and just didnt feel well. I attributed it to getting older.
Lily I was wondering about something you said about not getting chemo because you had such bad veins. I also wondered where you lived because they should offer a port placement to you for the chemo.
Lemon thanks for starting this thread.
Hugs to all
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I gave up going crazy over results as the system here is inmovable unless even they can see its an unreasonable time frame - for instance they finally conceded to give me bone scan results last week - scan was done in July last year....I kept asking and was told you need an appt first, but no appts were available, in the end they saw it was not reasonable to wait 8 months for a copy of results of a scan for cancer spread, especially as I told the waiting room they should all complain about the poor system in the hospital as it was basically killing people.......(oops) but as its 8 months old now I don´t feel any relief it only shows degeneration as 8 months is a long time!
I am hoping MRI results will be tomorrow, if not then they will not be until the following Monday.......it is inhumane and does not help my mental state but nothing will change it, they are very protocol driven here and no one steps outside of the box
I refused chemo for loads of reasons, not just veins, and I still think it was the right choice for me but thank you for thinking of me
Everyone tells me I am high risk of recurrence which I suppose is because its lobular and stage 3 when found and my circulating tumour cell test showed my disease is NOT under control so I am about to start a huge regime of supplements and angiogenesis inhibitors, all of which are only available privately so costly......and at the back of my mind part of me wonders if it is worth it as I am not the same woman I was, in any way and I am not loved much by anyone either so maybe I never was lovableas they all put themselves or their emotional comfort first - one of my dogs is giving me her quizzical worried looks often so I know she knows how I feel .............
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Hi there warrior ladies!
I am kind of new to the forum. How do I make a siggy?
I have ILC stage 3A grade 2, ER+/PR+/HER-
I just had double masectomy and DIEP recon. I just took a look at my pathology report and I am a little irritated that they didn't give me some more details at my last visit. The path report says two of my tumors were ILC and one is In Sutu, which is non-cancerous, right? Has anyone else have this happen where they didn't tell you the full story? I am relieved that one was in sutu, though. I did have 7/29 positive nodes so they are recommending chemo, rads and tamoxifen. I am finding all sorts of studies, one from MD Anderson that states Chemo does not help ILC cancers with estrogen receptors...anyone else see this? Are there any long term survivors from ILC on this site? I am currently taking high doses of DIM instead of the Tamoxifen. I am considering getting my ovaries taken out, since I am 45 anyways and have ovarian cysts. This would cut down on my estrogen output. I was also concerned with taking Tamoxifen with my ovarian cysts and endometriosis since the RX can cause cancer in those places. Also, my estrogen score was 80% and PR score was 90%...I am assuming this is pretty high? Of course, hey didn't discuss that with me either...Grrrr
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Snap - same as me except I was 7/14 nodes positive........
Jury is out on chemo and ILC so I think its a personal call, ILC is normally very hormone positive and grade 2 when found, as I was and you are doing things to help with that - go to your next appointment armed with your very valid questions then make your decision - lobular in situ can spread later on, it just means it has not spread yet.......
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Hi Lily! Thanks for your response! How did the radiation go? I am on the fence for that as well since it can cause heart damage...did they say what percentage it would be beneficial? I asked my onc all of these questions and she literally shrugged her shoulders and said "We just don't know, everything is a crapshoot!"...Are you having any side effects w/ femera? is this for post menopausal? forgive my ignorance...
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Mine was right hand side so no heart implications but I have extremely uncomfortable to painful ribs on that side, considerable tightness and am having weekly physio, prior to rads I had healed well and had no discomfort, since them have discomfort all the time and someetimes so much pain it wakes me up but I am VERY sensitive to collagen damage in scar tissue which is what rads creates. All I can tell you is that 4 doctors told me rads were important for me as post MX there is little left to cut out and rejoin if you have a local recurrence and it is fairly common there .........so I did, and despite this I think I would always have wondered why I did not if I did have a recurrence....as I refused chemo.
Lots of effects from letrozole but hormone treatment is really important for lobular cancer - hot flashes that make me feel i cannot breathe, then cold flashes, tiredness and fatigue (could be from radiation though), aching joints, wrinkles, but not everyone gets them ......
I have realsied that all cancer treatment is essentially BEST GUESS based on prior experience of other patients and your own little quirks as every cancer is a bit different due to your personal DNA
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My ILC was on my left side. I know my BS was concered about my heart which is why he suggested I have the internal balloon radiation treatment.
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Hello all. I would like to jump in here with you ILC ladies. Thank you lemon for the invite.
My ILC dx was just over 2 years ago. I had neo-adjudvant therapy because my tumor was large (4.5 cm). I had Chemo (FEC x 3 followed by Taxotere x 3) first. They wanted to shrink the tumor prior to surgery. The chemo did not produce a pathologically complete result. It created holes (like swiss cheese) and shrank it, but did not eliminate it. I had a umx with clean/clear margins, no node involvement, no vascular invasion so I declined rads.
If I knew then, what I know now...I definitely would have had bmx. If I ever get to a place where I am insured again and can afford it I would like to have a pmx on the remaining breast. I did have an mri w/ contrast and a nuclear Pet/CT which didn't show anything anywhere else.
I researched all of the reconstruction options and decided that NO reconstruction was best for me.
The BRAC testing was not a standard procedure, but I knew I wanted to have it done so I pushed for it, and got it. My results were negative for all of the BRAC genes. I am very glad that I insisted on the testing.
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Hi again!
Lily, Do you still have your ovaries? I am hoping that if I get my ovaries out that would lessen the chance of reccurance if I don't do radiation. My cancer was also on my right side, so I guess heart damage would be more minimal. My other huge concern is how much it would raise my lymphedema problem since I had 29 nodes out. Funny, my onc indicated rads were not the most needed therapy for me...of course, hormonal therapy was of the upmost importance.
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I still have one I think but it cannot be seen on MRI..........
I was told only overweight people tend to get LE (!) and I did not, a little initially but think that was just swelling at outset and normal since - I was stage 3 though that might make a difference.....?
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Joellee,
I had neo-adjudvant chemo and like FLWarrior, it swiss cheesed the tumor from 6+cm to about 3cm. So it can work on ILC. Also, chemo is supposed to take care of any circulating cancer cells that don't show up on scans. I had my ovaries removed to lessen the estrogen in my body. I still had rads. Rads was the easiest of all my treatments. It was just a pain to go everyday for 6 weeks.
Good luck with your decisions. It's so weird to be making decisions that doctors go to school for 8 years for and we have about 4 weeks to make.
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