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Topic: Lobular anyone??

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Sep 26, 2008 01:05AM

teamkatie wrote:

I was recently diagnosed with lobular carcinoma.  During surgery found and removed a 9cm tumor and all of my 19 lymph nodes on the left side, 17 of which came back positive.  Stage IIIB.  Prior to surgery I had opted for the bi-lateral mast. Lobular is rare as it is and Im looking for all the information I can gather.  I am 48 yrs old and a healthy woman- I still can't believe I didn't, my doctor didnt during my annual 6mths ago, the mammogram didn't 6mths ago, or now even find this sooner.  Ultrasound and breast MRI are the way to go- I do believe they show more. My family and I are very positive and ready for each hurdle as it comes.  I am going to be a pink survivor and kick this cancer in the butt!!  We must do this together!! Prayer is power. 

Be Thankful Dx 8/26/2008, ILC, 6cm+, Stage IIIB, Grade 3, 17/19 nodes
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Sep 26, 2008 09:01AM stillrusty wrote:

Hi Katie

You've come to the right place to help you through this. My ILC was only found on MRI. Do you have any specific questions?

Dx 6/10/2008, ILC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Sep 26, 2008 09:07AM wishiwere wrote:

Welcome :), but sorry you had to join this BC group of all groups :(

There are a lot of threads on ILC and many questions you'll have as you go through treatments also.  Jump in, respond where you care to and ask all the questions you need.  Many share everything here and do so as you feel you are ready.  It's a long haul, but we'll be there as we can to guide you and listen to you and rejoice as you make each hurdle! 

Did you get a copy of your pathology report from surgery? How long ago did you have it and where are you in treatment?

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Sep 26, 2008 10:39AM teamkatie wrote:

Pathology tests came back this week, and what I had orginally listed is the only information I know of as of now. I have an appt with my surgeon later today and then an oncologist next week. I'm terrified to leave my kids and family.  I;m scared what this is doing to them.  I cannot promise I will get better.  Lobular seems so rare, and with the stage mine is at I am desperately seeking a survivor. I appreciate your comments, as we all are fighting this together. 

Be Thankful Dx 8/26/2008, ILC, 6cm+, Stage IIIB, Grade 3, 17/19 nodes
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Sep 26, 2008 11:02AM wishiwere wrote:

From everything I've read, it seems that ILC is no less responsive to treatment than IDC but just harder to find sometimes.  Being rarer, really dosen't enter into it, once it's found. I might be off base, but don't think so.  More will pop in here, or you could check out the other lobular post on that forum.  There is a ton of info from all the ladies with it, and as I said, if you have specidfics, please ask.  There are lot of well-informed women on this board from all aspects of treatments that share willingly!  It's a great support group and although we'd rather not see anyone HAVE to join, we welcome all with open arms and hearts.

Once you get your appts behind you and have a plan in place, the anxiety does come down a little, trust me.  The hardest part of this entire trip is the not knowing and waiting game at every turn.  Prayers you find that comfort level in the decisions ahead of you in treatment progrmas!

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Sep 26, 2008 12:08PM stillrusty wrote:


I am not stage IIIb, I am stage I, but my sister was IIIb at age 41, that was 15 years ago and she is doing great. The treatment is not the same now as it was then, and I think hers was IDC. Her tumor was 7cm and not seen on Mamo. She had 9 nodes positive. I know how you feel about being scared. I'm 49 and have kids too. Keep us posted and we will help with what we can.

Dx 6/10/2008, ILC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Sep 26, 2008 12:42PM scooty01 wrote:

Hi Katie,

I am a surviour and you will be too!  It's a lot to absorb and it's a journey but it really was not as bad as I thought.  You will get better stay postive.   I also was stage lllB, 17 out of 21 nodes postive, tumor 7CM.  It will be two years in November.  I found a thickening area in my breast had the mammogram, ultrasound and 2 fine needle biopsies all came back negative.  But the lump was there and just bother me that it was there so I ask to have it removed.  What a shock it was to find out when I went back to the Dr two days after my surgery for a recheck  and found out the diagonis.  Went directly to a Breast Cancer surgical onocoligist to find out what needed to be done.  Had a masc in Dec. Went through Chemo and Radiation which was completed in July 2007.  

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Sep 26, 2008 04:05PM LauraGTO wrote:

Katie - OMG - like most of were delivered a "hard blow" so to speak...but.. you will do fine...ILC is somewhat rare, but...there are alot of girls here that will help you through the "muck". Hang in there...surround yourself with family and will get through this. Many of "us" have.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Sep 26, 2008 05:17PM - edited Jul 9, 2010 07:22PM by Maire67

This Post was deleted by Maire67.
Dx 6/2005, ILC, Right, 5cm, Stage IIIB, metastasized to bone, 1/9 nodes, ER+/PR+, HER2+ Hormonal Therapy Aromasin (exemestane), Faslodex (fulvestrant), Femara (letrozole) Surgery Lymph node removal; Mastectomy Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab)
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Sep 26, 2008 05:22PM awb wrote:

Katie--just a bit of good news which hopefully will help--my mom had ILC--lumpectomy, radiation and tamoxifen and is now a survivor of almost 22 years without a recurrence! she's my inspiration and I hope can be a beacon of light for you and others.


"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Sep 26, 2008 06:01PM Gitane wrote:

Hi Katie,  I just wanted to reach out, also.  I'm glad to hear you have good support at home.  It really helps.  We will help you, too.  Come here and vent, ask questions, talk about anything you need to, and just hang out and read. That's what we do. I'll be looking for your posts.


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Sep 27, 2008 04:02PM Lynn12 wrote:

Hi Katie,

You have come to the right place, like the others said, there are many women on this board with ILC and many threads in this forum you should read through.  I am stage IIb and it will be 2 years in November.  Hang in there and please ask any quesitons you have, we're here for you.



Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Sep 27, 2008 04:20PM paige-allyson wrote:

Hi Katie,

I was diagnosed with ILC Stage IIIA last year. I just had my second mast on 9/16- just didn't want to deal with the continued MRIs and mammograms after having a breast cancer that failed to show up on mammos and also evaded two needle biopsies. Hormonal treatment is probably the most important element of treatment for those of us diagnosed with ILC.

There are women who live long healthy lives after Stage III breast cancer diagnosis. I found dealing with the uncertainty to be a big adjustment.

These days my life is mainly about things other than breast cancer, but a chunk of my attention and efforts go towards doing what I can to prevent recurrence. I take my AI (Femara) faithfully, I lost 16 pounds after my dx, I exercise (hard!) most days, and I take calcium and vitamin D3 (helps prevent bone mets). There have been recent studies indicating that exercise can cut risk of recurrence by as much as 50%. What better reason to get out there and exercise. It's great to see people I haven't seen for a while who know I've gone through chemo, radiation, and 2 mastectomies and have them be amazed that breast cancer seemed to IMPROVE me....Also, in some cases ILC is associated with a somewhat better prognosis than other breast cancers- depends on the specifics of the pathology. The Stage III forum is also very helpful-there's lots of support here.

If your experience is anything like mine things will be rocky for a while. Just ask for whatever you  need.


Dx 5/18/2007, ILC, 3cm, Stage IIIA, Grade 2, 6/17 nodes, ER+/PR+, HER2-
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Sep 27, 2008 04:41PM - edited Sep 27, 2008 04:42PM by Maryiz

Allyson, not to hijack this thread, but how much D3 do you take a day?  Thanks, Maryiz

TeamKatie, you will do well.  I do believe ILC can be sneaky, but I believe the receptors are what is important, treated similarly to IDC. Hang in. 

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Sep 27, 2008 07:57PM paige-allyson wrote:

Lately 800mg but I think more may be better- up to 2000mg maybe. There is a thread about D3  in the alternative treatment forum. 

Dx 5/18/2007, ILC, 3cm, Stage IIIA, Grade 2, 6/17 nodes, ER+/PR+, HER2-
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Sep 28, 2008 05:33AM Maryiz wrote:

Thanks, Allysonw, I will up my dose.  Maryiz

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Sep 28, 2008 11:44AM LizM wrote:

Even though there are less women diagnosed with lobular than ductal, the treatment is the same and the prognosis is the same (although there are some who say lobular may have a slightly better prognosis since most lobular are ER/PR positive and her2 negative).  I had both ductal and lobular in my tumor,  It just means that your cancer was located in the lobules of the breast as opposed to the ducts.  There are many survivors of lobular breast cancer and many who had positive nodes.  Lobular is much harder to find since it does not form a lump which is why the average size at diagnosis is 5 cm compared to 2 cm for ductal.  You may also want to visit the stage III topic of discussion here as there are many women who are survivors of stage III disease here as well. 

Dx 9/19/2005, IDC, 2cm, Stage II, Grade 1, 1/8 nodes, ER+/PR+, HER2-
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Sep 28, 2008 04:14PM - edited Sep 28, 2008 04:17PM by teamkatie

Thank you for all reaching out.  I meet with my oncologist on Tuesday to start scheduling extensive tests to confirm it hasnt traveled anywhere else in my body.  So far knowing I'm grade 3, stage IIIB and have a total tumor of size 9cm is enough info to comprehend, however I need to know exactly what I'm up against.  I do know my hormone tests were beneficial in knowing my body will respond to the hormone therapies.  I am so relieved to hear from some of you with similar diagnosis and also same size tumors and lymph nodes involvement which seems to scare me the most right now.  I am dealing well after surgery double mast- and just trying to heal as fast as possible so they are able to start chemo followed by radiation on my left side where 17 of 19 nodes were infected (tumor was on the left side too).  I am happy I opted for double as it gives me a better piece of mind for now.  I will look into the StageIII forum as well.  Thank you again as any feedback is more light at the end of the tunnel.  My daughter is 26 and we both have notebooks started.  Printing info and writing down thoughts, questions and answers have helped in being able to refer back to something and make sense of whats going on inside my body.  Anyone know of doctors anywhere that "specialize" in this type of cancer?  I would love to speak with an "expert" who is most familiar with this type.  My doctors here are fabulous and I have the utmost confidence in them, I am just curious to see...

Be Thankful Dx 8/26/2008, ILC, 6cm+, Stage IIIB, Grade 3, 17/19 nodes
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Oct 8, 2008 10:02AM joaniek wrote:

Hello, I also was diagnosed last week with ILC. I have had several tests over the week, that came out pretty good. My cancer has not spread to my liver, lungs, or bones.

They did however, find a small area of concern on my right breast, which is new. My first lumpectomy about ten days ago was on my left breast. And I am scheduled for another lumpectomy on Monday. This to remove the remaining cancer and to see if it got into my lyphnodes.

My doctor gave me three choices regarding this new finding.

wait and see if the chemotherapy would get rid of the new small spot.

have another MRI and needle biopsy, which would delay the surgery on Monday.

And the last resort was a total mastectomy.

I am taking the wait and see option. But I am not all that sure of my decission. I just do not know enough about all of this, one week into it.

I am 52 years old. 4 Grandkids, 2 adult children.

Any kind of feedback would be good.

Dx 10/2/2008, ILC
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Oct 8, 2008 07:16PM Firni wrote:

Hi Joaniek.  I was diagnosed on Sept. 9 with ILC and DCIS in my left breast.  My doctor felt a small lump and made sure I had my mammogram scheduled.  I had that done, a cone view done and finally a digital mammogram and a biopsy.  My cancer is not staged yet but it is a grade two.  ER/PR positive.  Her2 is equivalent which means they can't tell without further testing.  I have two areas of DCIS and an area of ILC.  The largest mass is only 1.6 cm, the smallest is 2mm.  I did have an MRI and the right breast is still healthy.   I have talked to the surgeon and am opting for a total mastectomy.  Just the affected side.   I don't feel comfortable with a lumpectomy since the ILC doesn't really have a tumor.  I see the plastic surgeon tomorrow to see what I want to do for reconstruction.  Then I'll have my surgery scheduled.

 I too am not sure of any of my decisions.  I don't even really believe this is happening to me.  I'm also 52 with two grown children and 4 grandkids. 

The only courage that matters is the kind that gets you from one moment to the next. ~Mignon McLaughlin TX bi-lat mast 10/29/08 6 rounds TC (Done 3/25/09) Dx 9/9/2008, ILC, Left, 1cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2+ (FISH)
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Oct 9, 2008 04:39PM Rio wrote:

Hello Ladies

I was diagnosed with ILC July 14th. I  had a history of lobular hyperplasia having had 3 biopsy's in the last 4 years prior to this last one. My doctor was very informative with me on what this can lead to. The decision to have a bilat with reconstruction was not a difficult one for me personally.  As it turned out a small spot was found on my opposite breast after surgery that was not seen on the mammogram. I did not have lypmh node involvement and my Oncotype came back with a low score so I am on tamoxifen now. The fact that lobular can be sneaky and not seen on the different tests I recommend learning all you can so you can make the best choice for yourself. Once I learned I had cancer digging in and getting all the information I could was good therapy. The waiting period was the hardest for me but once I knew what I was going to do it became a little easier

Best Wishes


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Oct 10, 2008 09:16AM teamkatie wrote:

I have opted for the double mast. because the tumor in my left side, along with lymph nodes being involved on the left...sounded "safer" to remove the breast.  My right side however has suspicious tissue, but came back negative for cancer.  I opted for both as a mental likeness for my body- so both sides would look the same, and somewhat for prevention.  I agree with Firni that with ILC lumpectomy may not get it all.  Tumors within ILC are not a "tight fist" as with IDC.  They are more spread out in a linear fashion, therefore sometimes harder to detect and remove.  I felt safest with double mast.  I have spoken with survivors who chose lumpectomy and they still worry the same if it will come back. Each decision is personal and take your time in deciding, gather all the info you can.  It will make you feel more secure about which surgery you choose.

Be Thankful Dx 8/26/2008, ILC, 6cm+, Stage IIIB, Grade 3, 17/19 nodes
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Oct 10, 2008 10:27AM susan13 wrote:

Hi Katie,

I'm also a lobular girl at stage III, for now.  I am 41 years old and I have an almost 2 year old daughter.  Tumor didn't show up on my mammo's, but did on on a core biopsy.  My breast is just hard all over, it's so hard to know where exactly the tumor actually is and the scans I had didn't give any accuracy to the fact either.   I'm having chemo prior to surgery to shrink it for a "better outcome".  I'm pretty sure I too will be opting for a bi-lat, as I also have had DCIS in my other breast twice in the last 4 years and don't want to worry about it at all once I am done with all of this.   Just curious... is your doctor telling you that you must have rads afterwards? Or is that your decision? 

Good luck and let us know how you make out!


You can't change the past but you can ruin the present by worrying over the future. dd CAF bilat mast. w/recon. dd Txo. 25 rads. Tamoxifen.
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Oct 12, 2008 05:24PM teamkatie wrote:

Hi Susan- I'm sorry to hear of your diagnosis....sounds like youve had a long road.  The oncologist still thinks radiation is an option after chemo, however my surgeon would prefer operating, as its a "safer" bet.  Less risks than radiation (will radiation work, the dangers of it killing other "good" cells in my body and not just the bad ones, etc)...however they did say the chemo could shrink the small part of the cancer that is left in me, and they could find nothing (I'm hopeful for this) once they do go back in. Personally I agree with the surgeon, as I would rather have them operate after chemo than chance anything with radiation.  I feel that the doctors do know whats best for each patient, and maybe you have been highly responsive to radiation in the past.  This is my first go with everything and I want to do the most radical, agressive actions possible to lessen my risk of it coming back.  Lets do please keep in touch.  Give that daughter of yours a hug!!  I know my daughter is a huge source of strength for me, I am so thankful for all of my family in these trying times.   

Be Thankful Dx 8/26/2008, ILC, 6cm+, Stage IIIB, Grade 3, 17/19 nodes
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May 26, 2020 10:42AM Simona87 wrote:

hello .

I am from Macedonia i am with breast cancer stage 2 b grade 3.. 1 possitive node i am 34 years old mother on two boys 2 and 5 years old.. can you tell me how you diagnosed mets on your bones .. canu give me som advice... do you eat speciall food or something like that.. thank you a lot.. regards

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May 26, 2020 03:39PM FaithAndTrust wrote:

dear simona

this is an old posting from 2008..maybe try posting your questions to a more recent discussion.

I am sirry to hear you have had to join us but you will get a lot if help here.

normally your Oncologist will arrange for you to have a CT scan and a bone scan to see if there are mets.

I hope you find a good doctor and team who will guide you thru everything and come to here for help will get thru this stay strong ❤

Dx 11/2014, ILC, Left, 1cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2- Chemotherapy
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May 27, 2020 06:03AM claireinaz wrote:

Hi Simona,

I saw your sorry to hear about your worry and your recent diagnosis, and welcome to our big group. I think if you reposted this on the "just diagnosed" thread (see below) you will get plenty of responses and support right away, which is so important right now. When you have a specific lobular question we are here for you!


Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 28, 2020 08:41AM Neamster wrote:

I had two ILC lumps in right breast. Due to the size (3.1 cm and 1.1 cm) and because in two quadrants, the surgeon recommended radical mastectomy. Operation was January 22 2020. I also opted to have the left breast removed at same time, mostly for prophylactic and symmetry reasons, though ultrasound and MRI were negative for that breast. As it turned out, I did have ILC tumour in left breast, undetected so very glad to have made that decision. I also chose no reconstruction, due to possible complications and the fact that I am 74. I made this decision after consulting w husband, daughter, best friend, and do not regret it.

I chose not to undergo chemo as the 10 year survival rate improvement was estimated at 3 per hundred, and given the side effects, an existing heart condition, and my age, did not seem to add enough additional value.

Radiation was delayed because of backlog, but began May 8. I will finish in two more days, then letrozole for 5 years. I will be getting infusions at the cancer centre every 6 months of a bone density boosting drug.

It feels like a long journey, but it only started November 19 when I first found the lump. The biggest issue I am dealing with now is regaining upper body strength, and loss of flexibility due to scar tissue contraction. I exercise and stretch daily, but it is still an issue. Now that some restrictions have been lifted in our province re. Covid, I have booked sessions with my massage therapist and physio to help deal with these.

I am feeling fatigue due to radiation, but try and work around this by scheduling fitness routines in the morning when I am at my (relative) best. Now that provincial campgrounds have opened, we have booked several stays with our travel trailer, and are looking forward to them just as much as I would have looked forward to more ambitious travel in the pre COVID past.

I am worried re all the possible Letrozole side effects, but will try and deal with them as they come. My cancers are 100% estrogen positive for the two lumps on the right side, and 80% for the left, so this is a no brainer, and according to my oncologist the biggest potential return on treatment investment.

I like reading of other's experiences on this forum. However, I find that I can start getting stressed if reading about a treatment or issue that I have not been offered. That's when I know it's time to back off for a bit.

Pi Dx 11/25/2019, ILC, Right, 3cm, Stage IIA, ER+/PR+, HER2-

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