Just diagnosed with ILC

Anonymous · December 2009

Hi

I have just been diagnosed with ILC and thought I would introduce myself here. I am 46 years old with 2 children, 17 year old son and 9 year old daughter. I have been hanging out on the LCIS thread since July when I was diagnosed with that condition. Since then it has been one test after another, which I should be grateful for, but somehow right now I am not feeling very grateful for anything. I am mad, sad, confused, frustrated etc. etc. probably like most of you went through the range of all the different emotions.

It seems something I share in common with most on this thread, is that the ILC was only picked up on MRI. It was not seen on mammogram or ultrasound. In fact when the initial MRI guided biopsy was done, 12 samples were taken and they all came back with PLCIS. The 2 areas of ILC was only picked up once a lumpectomy was done. I am so confused and have so many questions that right now my head is spinning. It worries me that they don't seem to know very much about PLCIS and now I am wondering if the ILC is PILC?

Looks like I will be joining you here for a while.

Cathy

Anonymous · December 2009

I've just been diagnosed with ILC stage 1 as well. The emotion going through me is overwhelming.

Thanks for all the encouraging posts here. I know I am not alone.

MW

Anonymous · December 2009

Cathy---I'm so sorry to hear your results-----I know it was not the news you were hoping for. Your diagnosis of ILC "trumps" that of the LCIS/PLCIS since it is invasive, so now your treatments will be focused on the ILC. Having LCIS/PLCIS does put both breasts at equal risk of invasive bc, but it does not preclude having a lumpectomy if that is what you choose to do. I have always said that I would choose bilat masts if I developed invasive bc, but then I think about how my mom had ILC many years ago----had lumpectomy, radiation and tamoxifen--- and is now a survivor of over 23 years without a recurrence. None of us really know what we will do until faced with the situation. But whatever you choose, will be the right decision for you.

Anne

hlya · December 2009

Based on what I read from here, PILC is a sub-type of ILC, which is more agressive than classic type - theoretically. But some ladies here with PILC don't feel that way....

momand2kids · December 2009

Hi,

Sorry to hear, but you should know this is the hardest part--once you start a plan, you will be just fine.

I was dx on 10/29/08-- ILC-- did not show up in a mammo-showed up in dr. office... had a lumpectomy, oncotypedx showed that I had some benefit to chemo, so did that, then had radiation.... no node inolvement, no vascular invasion... while none of it was easy, it was also not terrible---I have 2 kids- they were 12 and 7 at the time.. we kept their lives as normal as possible, I worked full-time through most of the treatment--- I just want you to know that no matter what lies ahead, you will be fine.

From what I know (and I try not to research too much) ILC grows slowly--- one onc told me it was probably there for years.... so I feel lucky that we found it, got it out and moved on......

You will feel better as you get more and more information about YOUR circumstances--try not to do too many comparisons between yourself and others--every single situation is different- every onc has a different approach. I do highly recommend the oncotypedx test --it will really help you in making treatment decisions.

Also, don't get too freaked out by the word invasive--- that means it can travel, does not mean that it has.......

feel free to pm if you have questions--- all the best

Anonymous · December 2009

Hi MW943 How did they find your ILC? What will your next steps be?

I have an appt with a breast surgeon on Dec 21 to see what some of my options are. Although this surgeon doesn't perform DIEP, I would like his opinion on whether I should just focus on the bilateral mastectomy and delay reconstruction. From what I have been told, until they get results of the sentinel node biopsy, they won't know if radiation and/or chemo may be required.

momand2kids - thanks for your words of encouragement. It is good to hear from people who have gone through this and can help with what to expect. I am from Canada, so from what I hear the oncotypedx test is not available here. I have read that some people have gotten the test done though, if their oncologist asks for it. I will be asking my oncologist. Can you tell me at what number do they recommend chemo?

momand2kids · December 2009

formy,

It is really worth the oncotype if you can get it, if only for peace of mind. I don't know the exact numbers---but somewhere up to about 17 or 18 chemo is not indicated (although there have been many people who have chosen chemo with lower numbers) then I think anything up to about30 or so is considered intermediate----- and you have to make a decision----that is where I was--there were arguments for and against chemo---but I chose to have a short round of it---gave me great peace of mind..... but others have made different decisions and have been just as comfortable. I know people in my situation with no nodes, no vascular invasion who chose for forego chemo--- I felt like I wanted to throw everything at this now while I am young and healthy and could withstand the treatments...... but to each his own.

It is important to remember that before they had the oncotype they made this decision based on stage, grade, nodes, etc..... and your data is what is important, not the averages---- I am sure your onc will be able to give you a good analysis even without the oncotype as to how you should proceed......

best of luck

cammy2 · December 2009

Hi Cathy- As with all of us - sorry to have you here - but it is truly a comforting place to come to once we are in the situation.

I was diagnosed 10.15.09, HadBilat Mast 11.20.09. Got Path Report back - tumor was 4.5 cm and doc said it would've been growing for several years. Had yearly mammos = but nothing ever showed. Finally was feeling an area of thickening - which pushed them to do an Ultra sound and then a Stereotactic biopsy to confirm. Doc said an MRI would have found it - but there was never any reason to have one. So 4 years of "clean" Mammos and I still had Breast cancer the whole time! My Onco appt is Mon 12.7 when treatment will be determined. I know Chemo is next - just not what type,. Probably won't need Oncotype done because doc felt I definitely need Chemo because of tumor size and one lymph node tested positive. I think Oncotype is only if they are not sure if the pros outweigh the cons. They will look at everything and come up with a custom plan just for you.

My only child is a 12 year old boy. He vascillates between very concerned and caring to being a normal tween who is worried he might be embarrased if I am bald in front of his friends.

All the best. Cammy

Gitane · December 2009

I just want to say, "Welcome!" to the newbies. ILC is tricky, we can all relate to what you are experiencing right now.

Cathy, you've obviously read the threads enough already to know how hard it is to find. It's hard to learn that the screening doesn't help much where ILC is concerned. It looks like the lumpectomy may have caught it at an early stage, at least.

MW, it sounds like yours was also caught at an early stage. That's good news.

There is a lot of help and support here, so please come to share or ask questions.

Hoping that all goes well for you both. G.

hlya · December 2009

You can join Tailox clinical trial in Canada to get a free Oncotype test done, if your tumor is >1cm, no node involved, ER/PR positive or high grade.

Or you have to pay the test which is around $3600

Anonymous · December 2009

I am so grateful that I have found this site. Not only has it been very comforting to have you ladies to share stories with, but it is so helpful in learning how to educate yourself when you have to make all of these decisions.

Cammy2 if I could ask what helped you with making a decision between bilateral or unilateral mastectomy? Did you have reconstruction or will you wait until after treatment?

Gitane, thanks for your words of support. I notice that you have PILC. I am still waiting for my pathology reports and the grading wasn't complete yet, but I wonder if mine would also be PILC or ILC, because I had PLCIS? To your knowledge is it thought the PILC is more aggressive?

hyla thanks for the information about the Tailox clinical trial. When I asked my oncologist if there were any clinical trials I could/should participate in, he said we will wait for all the results to be complete after mastectomy. I hope I can participate in this trial anything that can help in making these decisions is worth it.

I have tried to tell my kids, each age appropriately, what is going on and to try to keep things as normal as possible, especially with Christmas so close. So for right now, they see that I physically look ok, but I also want to prepare them for what is ahead. This is so difficult, that I just want to.............., I don't know, run and hide, but I know "it" will still be here so I have to deal with it.

Thanks

Cathy

Gitane · December 2009

Cathy, The feelings are all over the place when we are diagnosed. I remember that very well. It is hard to act normal, especially for the family, when you feel so out of control. I'm so sorry this is happening to you, I know it's difficult. Of course you want to hide, who wouldn't?

I don't think having PLCIS makes it any more likely that your ILC is pleomorphic. There is no consensus about how aggressive pleomorphic ILC is. Many of the old studies refer to PILC that was hormone receptor negative, node positive, and/or Her2 positive. Many, if not most, pleomorphic ILCs have none of these factors. The oncotype DX testing (see their site on the internet) found that pleomorphic ILC has quite a range of scores covering low, intermediate, and high. On these boards I have seen Grade 2 and Grade 3 pleomorphic ILC with mostly low and intermediate Oncotype DX scores.

It appears you have been diagnosed at a very early stage. That does not make your fear any less intense. However, please believe that you will be O.K. because every indication is you will!!! HUGS!

pcollins56 · December 2009

Hi, I was dx recently with ILC and Tubular cancer. Does anyone know if it gets trickier having two different forms of cancer. I know the Tubular is rare, however, is much less agressive. I found a lump in July, had a clean mammo in Jan, then had a repeat mammo in October and they found the mass, had an excisional biopsie which came back positive. The dr. did not get clean margins. I'm waiting on an MRI, and the facility she says I must go to has recently moved locations and the State hasn't ok them for reopening. I'm having a fit. My grade is II, stage 1 right now until I get my MRI and a sentinol node biopsie, mass they got out was 1.7cm. I'm really anxious and not sure what to do. Does this usually move this slowly for every single test?

Anonymous · December 2009

Hi Cathy,

The annual mammogram in October showed a density that was not there before compared to previous years'. The hospital wanted me back for a second screen and an ultra sound. Both mammogram and US confirmed the presence of the suspicious mass. My gyn referred me to a breast oncologist. She did a core biopsy and I was diagnosed ILC, Stage I, Grade1-3. At this time, I don't know whether lymph nodes are involved. I am scheduled to go for a "cancer talk" on 12/10 to discuss treatment options, risks, prognosis, etc. I will keep you posted after the appt. Staying positive and reminding myself that this is just a bump on the road maintains some sense of normalcy. You're all in my prayers and thoughts. Hang in there. Marie

Anonymous · December 2009

Hi Marie

Sorry you have found yourself here as well. Not that we want to be here, but it is comforting to have someone to tread in these murky waters with. You sound like you have a good attitude about all of this and that's probably a good thing. I keep trying to tell myself the same thing, but I think part of me is still in the "shock and awe" phase.

Good luck with your appointment 12/10 and keep us posted. I have appointment Dec 21 with plastic surgeon to discuss mastectomy/reconstruction options.

Take care

Cathy

cammy2 · December 2009

Hi Cathy - My choice to have a Bi-Lateral was based on several things. Doc felt my risk of developing in other breast was about 30% and that felt too high to me given how long it took them to find the ILC, plus 15 years ago I had a lumpectomy in the "good" breast that was benign - but it left the breast scarred and misshapened. I think psychological factor was highest to me... since ILC was so tricky - I didn't feel like I could trust that they would find it in the other one ad then have to go through this whole ordeal all over again.

My appt today with Onco didn't go as well as I had hoped. He wants me to go back into surgery for an Auxillary Dissection. During the BiLat - the fast test showed no lymph node involvement so they did not proceed with Aux. Dissect. Then Path reports showed one of 4 lymph nodes removed DID have cancer . EEk - I do not want to go back for another surgery. Dr. Onc suggested every 3 weeks AC for 4 cycles followed with 12 weekly infusins of Taxol- so that ends up being 6 months of chemo. Sounds eternal. Suggested I get a port in place.
Reconstruction will be after all of the chemo- not sure what kind yet.

Good luck in your decision Cathy and Marie too.

Cammy

Anonymous · December 2009

Hi Cammy2

I am so sorry your appointment didn't go well yesterday. It does sometimes seem like our path to surgeries is endless doesn't it, and that's the last thing we want to do. I had heard that the fast test they can do to check lymph nodes can sometimes be inaccurate. I have been told that they will do the sentinel node check with the dye and then see what happens from there.

Did your doctor recommend doing the bilateral and then waiting to do reconstruction, or was that your choice?

Have you told your son and how is he doing with the news? I know everyone says children can handle more than we think, I just don't want to scare them. So I am trying to keep really upbeat for them, but deep down inside I'm terrified.

Thinking and praying for you. How quickly will they do surgery again?

Take Care

Cathy

Anonymous · December 2009

Hi Cammy,

Thanks. Sorry to hear about the bad news. As Cathy said, I've read that there's higher chance for ILC to show up false negative in nodal biopsies. Ughh!! We have got to come up with better technology to tackle this. I know I am going to opt for a bilateral mastectomy due to the nature of the cancer. If the cancer doesn't kill me, the anxiety and unknown will.

Prayers and thoughts are with you ladies. Take care.

Marie

hlya · December 2009

Marie: It's my first time to hear that ILC show up false negative in biopsy technology. It has higher chance to show false negative in mammogram, ultrasound or even MRI. But if you really worry about the biopsy, you might need to remove the nodes which will be the most accurate method.

Formykids: In the trial, if your Oncotype score comes back as low or high, you will not or must take chemo. But if it sits in the grey area (40% women sit in the middle), you will be randomly chosen to take/or not to take chemo.....it will be a hard decision though

Anonymous · December 2009

I was finally able to get my pathology report and I am still trying to understand it.

The one thing that I do understand is that it is says it is "Pleomorphic Invasive Lobular Carcinoma"!!! Oh wonderful! I am really not liking getting diagnosed with these very unusual types. From what I can see on these boards, I have only seen two others with PILC.

It is also grade 2, ER+, PR+ and HER2-. So I guess that last bit of information I now need is the lymph node involvement? I just wish it could happen sooner than later.

hlya · December 2009

formykids: ILC is unusual, too, Smile only 15% of BC women got ILC, most of BC women (80%) are IDC. Do you want to try lottery?

Here is the thread about PILC, you will get much more info. from those ladies.

http://community.breastcancer.org/forum/71/topic/700759?page=6#idx_171

As far as what I learned from here, most of ILC (not matter Pleomorphic or conventional ) are ER/PR+ HER2 -, and grade 2

And yes, Lymph node is an important factor to decide your treatment plan also whether you could join the trial. Good luck and keep us posted.

Anonymous · December 2009

Thanks for that link hyla. It was very interesting and very informative. I find you can sure get bogged down with reading these threads, but it is so helpful. I also do feel somewhat better after having read the thread. At least there appears to be more PILC than I thought. I thought there was only 2 other women with it, and any of the information I was reading about it, just spoke of how nasty and agressive it is. And you are right, from what I could read, most of them were ER/PR+HER2-, and grade 2, although there were also some variations of that.

Thanks again

Cathy

Anonymous · December 2009

I am wondering, for those women who have had reconstruction, did you have it immediately after mastectomy or did you wait? I understand that until they know if lymph nodes are involved, it won't be known whether or not I will need to have chemo and/or radiation. I also understand that reconstruction is not as successful if radiation is needed. So how do you decide to proceed, not knowing if further treatments will be necessary? I believe also that the feeling is, if and when it is possible, you will get better results at reconstruction, if it is done immediately.

Although, the surgical oncologist seems cautiously optimistic that there won't be node involvement, she also said she wouldn't be suprised if there was. So it seems as though she thinks I should just do the mastectomy first. My oncologist also thinks I should just do the mastectomy right now, and wait for the reconstruction. How do you decide this?

I have an appointment on Monday Dec 21 with a Breast surgeon about reconstruction. Just not sure how I should proceed.

Cathy

Anonymous · December 2009

Cathy, I asked that question as well at the education session. My breast onco doesn't think the immediate reconstruction will affect the chemo and/or rad. She's more concerned about the pain level. She says with just the bilateral mas, the pain level is about 3 (scale of 10), but with the reconstruction (the expander), it's 9. Another inconvenience is that you have to coordinate with the PS's schedule. I personally don't want to delay any further so I opt to have the recon later.

Good luck with your surgery. Let me know what you decide.

Take care.

Marie

Gitane · December 2009

Cathy, I have to say, you are really on top of things. I wasn't nearly as informed as you are at this stage. My situation was not like yours. I knew I was having a mastectomy. I didn't know if I would need rads, but took a chance and had the plastic surgeon participate in my mast surgery and put in the expander. My onc, based on pathology, decided I didn't need rads, so I proceeded with the expansions. My chemo was mostly prior to surgery, I had 4 before and 2 treatments after surgery, so it didn't interfere with my reconstruction. I did not find that pain was a major issue at all for the mast., expander, or exchange surgery.

By the way, welcome to the PILC club. I call us "pleo pals" . Since you have this rare form, I would ask for the OncotypeDX for sure. It will help you to have all the information you can. I especially like that they give you very accurate ER, PR, and HER2 levels in addition to your RS score. On this site I have seen RS scores from 9 to 24 for PILC. My oncologist felt that PILC responds well to chemo; a good thing to know should you decide that is needed.

karen1956 · December 2009

I did immediate recon with expanders at time of bilat....I knew going into surgery that there was lymph node involvement involvment and rads were pretty likely...chemo was a sure bet....I was fully expanded at the time of rads....exchange was 7 months post rads (a year after bilat)...some probs due to rads, but overall recon is good.....had to re-do the implant on radiated side because it fell....fell a little a 2nd time and probably could have let things be, but I did not like my implants so had them both swapped out for smaller ones....I have 200cc mid profile silicone implants....don't wear a bra, just a little nylon cami.....and in clothes it looks pretty natural...

YoYo44 · December 2009

Hi Karen,

Thanks for sharing. I too had the BMX with immediate TE's and just found out I am getting rads. The surgeon and the PS knew it was a possibility and have the same plan as you had. So hoping all will go well. The 7 months post rads is a little depressing-sounds like a long haul. Oh well, this whole thing is a long haul I guess. I am just happy I now know what is going on (mostly...).

All the best. Take care and stay strong.

Yo

ktn · December 2009

cammy- I also had to go back for more lymph nodes. I had tumors in both breasts so had 2 sentinal node biopsies with my double mast. one was + right away, one several days later. Anyway the 2nd surgery went really well. I had 9 nodes removed at that time. The recovery wasn't an issue as I was still recovering from the first surgery anyway!

Formykids- I had to have a double mast because of an ILC tumor in each breast so my decision was made for me. I have personally met 2 women that had ILC in one breast but chose double mast. In each case there were early stage ILC in the 'good breast' also. The ILC is hard to find -I had 10 years of totally normal mammograms and exams before I was diagnosed. One other factor if you have an aggressive type- It was recommended to me to go with tissue expander reconstruction so thst any recurrence would be very obvious. Both surgeon and PS said other types of reconstruction would mask things. Again that is my particular case, not for everyone. Anyway I had tissue expanders placed at the time of the mast., was expanded during chemo and then had radiation. i now have silicone implants and haven't had any problems. I thought getting expanded was uncomfortable but i don't regret getting them. Good luck with all your decisions!

Anonymous · December 2009

MW943 I know what you mean by not wanting to wait any longer than you have to. It seems difficult enough trying to schedule with one surgeon....Maybe I should do delay reconstruction?

Gitane it is good to hear a "good news story" (not too painful), about mastectomy and reconstruction. Thanks for the welcome to the "pleo pals" PILC club. I hope to have the oncotype test done, but I am in Canada, so apparently I will have to go into a trial to get it or pay $3600.00.I'll see what the oncologist says after I have surgery and find out what the treatment will be.........Maybe I should do immediate reconstruction?

karen1956 can I ask you, if you knew then what you know now, would you have done reconstruction immediately or would you delay it? It seems as though you went through so much with having BPM, then chemo, then radiation. It must have been very difficult to have to have more surgery done afterwards.

Yo it sounds like you have a treatment plan now, as all of the other ladies have said here on these boards, one foot in front of the other. We can and will do this, one step at a time.

ktn thanks for the information. I had never thought of the type of reconstruction could mask things? At this point I was leaning towards DIEP, but not sure if I can even have that type due to 3 previous c-sections?........Maybe I should do delayed, sounds like still so much to learn????

I have an appointment with a plastic surgeon on Dec 21, so I am hoping something he says will help in deciding this. Although this particular surgeon does not do DIEP, so I am waiting for an appoint with the surgeon that does that type of reconstruction. (actually it is this doctor's wife).

Thanks to everyone for sharing the experiences. This really does help.

Cathy

ReRun · December 2009

Hi everyone,

I was just diagnosed. The breast specialist seems pretty sure and indicated there are lymph nodes infected as well. My MRI is this Wednesday and my biopsy is Jan 4. Hard to believe I had normal mammogram, ultrasound and clinical exam just 6 months ago and now have a 3.5 centimeter legion with infected lymph nodes. She said that is typical of Lobular cancer. Needless to say, I am scared out of my mind. My Mother died of breast cancer in 1991 after an 11 yr battle and my husband died of esophageal cancer 3 yrs ago.

I guess I need to learn alot about all of this and am just at the very beginning.

Sharon

Anonymous · December 2009

Sharon, I am sorry to hear of your diagnosis. I am new to this journey as well. Speaking from experience, I promise you once you're over the initial stages of shock, you will find that life does go on and you will find the strength within you to tackle this. The ladies here are wonderful. You will have all the support here to get you through. Hang in there.

Marie

Just diagnosed with ILC

Comments

Categories