Join Us

We are 218,776 members in 84 forums discussing 161,218 topics.

Help with Abbreviations

Topic: so many unknowns w ilc/lcis diagnosis

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

Posted on: Jun 12, 2020 07:26AM - edited Jun 18, 2020 10:33PM by mellielu

mellielu wrote:

I just found out this week I have Invasive Lobular and LCIS in right breast. It's a lesion I've watched via mammogram for 15 months. Wish so much I'd found someone to biopsy sooner! It was .5mm on 4/19 and 12/19. I asked about biopsy in December but they wanted a three month follow up instead. Then Coronavirus happened. So here we are in June.

I saw the surgeon the day after hearing the news. It's .8cmby ultrasound, er and pr positive (95%). Ki-67 of 6%. Waiting on her2. Biopsy also said low grade.

Surgeon said we can do lumpectomy plus radiation, but first must get genetic testing and MRI. He said if those tests come back okay then I'm a good candidate for lumpectomy. Or there's mastectomy. He said lcis has a possibility of cancer in other breast now or later. And that ILC doesn't act like IDC. He wants me to make the decision on surgery. Said he will guide me away from bad decision but choice is mine. He has a great reputation here and started our city's high risk breast program.

The genetic tests take 2-3 weeks. MRI this coming Thursday.

I just don't know what to do but at this point I'm waiting on the tests. Is there a best practices guide for lobular cancer? I need to do research to get a handle on this! I'd also love any advice


Log in to post a reply

Page 1 of 1 (17 results)

Posts 1 - 17 (17 total)

Log in to post a reply

Jun 12, 2020 09:10AM Whatjusthappened wrote:

mellielu, I'm so sorry you find yourself here. It sounds like your surgeon is doing all the right tests, but it would be a good idea to go ahead and see an oncologist if you have not already done so, preferably one on the same team as your surgeon so that they are communicating with each other.

In my case, it was the MRI that pretty much made the decision for me between lumpectomy and mastectomy, as a large portion of my breast lit up on the MRI. After that my surgeon said that a lumpectomy was not really an option.

I opted for a bilateral mastectomy for peace of mind and symmetry. Before my surgery we did not have my genetic results back and we were going on the diagnosis of strictly ILC. My insurance company fought me on my decision to do a bilateral, saying that if I had LCIS they would approve the bilateral but not for ILC. We appealed that decision and I got the bilateral, which turned out to be the right decision after my genetic test results came back. I tell you all this so that you know to get all that information before you make any kind of decision, since those results can have a way of making your decisions for you.

Your surgeon is right in that ILC behaves differently that IDC, and I would educate myself on that aspect of it. This site and lots of ladies on this site have a wealth of information about it. Another good resource is https://lobularbreastcancer.org/. The difference between IDC and ILC will come into play when you're deciding on your treatment plan after surgery.

For the record, I also breast fed for at least six years of my life, and was 48 when diagnosed.

Please let us know how it goes. I wish you all the best!

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Jun 12, 2020 02:52PM - edited Jun 12, 2020 03:36PM by mellielu

Thank you; that's helpful. I had asked about oncology at the consultation this week. He said that would be after the surgery but I will ask him who he recommends sooner, and if I can get an appointment with them to discuss things.

I see you got ovaries removed. I was wondering myself about doing that. It seems like it would be more effective than medications to suppress hormones?

People in person seem very negative about a mastectomy. Also about the ovary removal. But they are just friends who could not imagine doing that, not someone dealing with this diagnosis.

Edited to add: does one need a breast cancer specialist or is a general oncologist ok?

Log in to post a reply

Jun 12, 2020 06:00PM beach2beach wrote:

Hi,

I was 51 when i was diagnosed. Almost 3 years ago. It was a 9mm spot. I had the option of lumpectomy or mastectomy. At that time they initially told me it was IDC on biopsy. I opted for a double mastectomy based on that my boobs were always behaving badly,,I had fibroadenomas, cysts and they were dense. I knew I did not want to go through more screening, alternating every 6 mths between MRI and Mammo. My anxiety is normally high. After surgery I found out it was ILC also had some LCIS and DCIS in that little tumor.

I was comfortable with my decision to do a double. I opted for direct to implants. Albeit they are small, (skin was too tight to go bigger then)but they are uniform! I'm on tamoxifen and according to last blood draw, still not menopausal even though i have not had a period in over a year.

Did oncotype text and that was a 9. Also did genetic testing after and all came back negative. My oncologist is not just a breast oncologist.

Best I can advise is,,do what feels right to you.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jun 12, 2020 06:45PM Whatjusthappened wrote:

I had my ovaries removed mostly because of the BRCA2 mutation that carries a higher risk of ovarian cancer and that's what my doctors recommended I do. I don't know that I would do it for hormone suppression alone, unless I had some kind of medical condition that made it dangerous to take Tamoxifen, or if I tried the alternatives and they didn't work for me. That is assuming you are pre-menopausal. If you're post-menopsusal there would be no point to have your ovaries removed, since they're not producing anyway. Even if you have your ovaries removed, you still have to take the medications to suppress the estrogen produced elsewhere in your body.

The decision to have a masectomy is a very personal and complex decision that takes into account the nature of your breast cancer and how you want to move beyond it. Some women simply don't want to live in fear of recurrence and choose to have masectomies to give themselves the best odds. Some are very attached to their breasts (pun intended) and want to try the most minimally invasive approach. Those who haven't gone through making that kind of decision will never really understand, but hopefully they will support your decision nonetheless.

If you opt for a masectomy, then you have to decide about how you feel about reconstruction. There are a lot of different opinions on that as well, and it can be an emotional and devisive topic. It's very, very personal. I opted to go flat. I never even thought about reconstruction, nor was I really given any options for it early on. After my surgery, my plan was to live flat. I was happy with my decision at first, but after a while I started to change my mind and I will be having delayed reconstruction next month. I agonized over that decision, and not everyone understands it. If you decide on a masectomy, and if reconstruction is something you even remotely think you'd be interested in, I would get a plastic surgery consult before your surgery. Nobody told me that.

My oncologist is a general oncologist, and I don't really have any complaints. I imagine that a breast specialist would be ideal if that's available where you live.


BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Jun 12, 2020 08:39PM AliceBastable wrote:

Are you sure it's .8mm and not .8 cm? Something that's .8 mm sound like they could do a needle aspiration to remove it.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
Log in to post a reply

Jun 12, 2020 10:16PM - edited Jun 13, 2020 06:59AM by mellielu

you're right. .8cm. Don't know how I mixed that up!


thank you. Your answers were very informative. A lot to think about

Log in to post a reply

Jun 16, 2020 09:38AM - edited Jun 16, 2020 09:40AM by claireinaz

Hi there, and welcome. You'll find these discussion boards to be such great help all through and beyond your dx and tx, whatever that is.

ILC has a higher tendency to recur later (compared to IDC), and has a higher tendency to be multi-focal (found in both breasts). I saw a general oncologist but that was only because I live in a smaller town and that was what was available. If I had lived closer to or in a metro area I would have tried to find one that specialized in ILC. It behaves a bit differently than the more common IDC and in a perfect world I wish I had a more specialized oncologist available, or at least a breast cancer oncologist.

If you don't want to get a BMX, then make sure that you are followed correctly. ILC tends to hide from regular scans like mammos because of the way ILC grows (mine hid from mammos for 5 years while I felt false protected with "all clear" yearly mammo reports). It seems like getting both an US and mammo is the better way for finding any problems-and even better, yearly breast MRIs are the gold standard for ILC check ups.

Dense breast tissue can also make it difficult to find a problem with just a mammo. I also had dense breasts, so between them and the ILC, my problem grew big enough and involved nodes-so down the chemo, rads, BMX and anti-hormonal path I went.

However, yours is tiny--and growing at the slowest possible rate-so you've already in great shape for continuing on your path for a long normal life when you get through this temporary health setback! If you don't have + nodes--it sounds like you don't-you might be able to get by with an anti-hormonal that you would take every day and skip chemo and maybe radiation too.

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
Log in to post a reply

Jun 16, 2020 10:14AM mellielu wrote:

Thank you that’s very enlightening and encouraging! Am waiting hear back on a referral to local oncologist. They wouldn’t let me just make my own appointment. I’m thinking if I have an oncologist who is informed on ILC and LCIS then being closer to home would be better. The surgeon is scheduling in July now so sounds like nothing will be happening soon.

Log in to post a reply

Jun 17, 2020 11:04PM Whatjusthappened wrote:

Mellielu, is your MRI still scheduled for tomorrow? I will be keeping you in my thoughts- hoping for good news!

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Jun 18, 2020 03:48AM mellielu wrote:

yes it is! Thanks for asking. I’ll have an oncologist first appointment on Friday morning also.

Log in to post a reply

Jun 18, 2020 07:14AM beach2beach wrote:

I'm a little confused... 8cm or 8mm? thats a large area vs a very tiny less than 1cm area. 10mm = 1cm Mine was 9mm, small but surgery still needed.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jun 18, 2020 10:32PM - edited Jun 18, 2020 10:32PM by mellielu

8mm; sorry

Log in to post a reply

Jun 19, 2020 12:54AM LillyIsHere wrote:

mellielu, good luck tomorrow.

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole)
Log in to post a reply

Jun 23, 2020 10:22AM Whatjusthappened wrote:

Mellielu, just checking in on you. How are you holding up?

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Jun 23, 2020 12:30PM mellielu wrote:

I'm pretty stressed! MRI found two more small spots in same breast.

I saw two oncologists for consultations last Friday - didn't care much for the first one. She's closer but the small office seemed so unprofessional - everyone on their phones - and she didn't ask me anything about my health history... I have many autoimmune and connective tissue diseases, clotting disorder, have been on immunosuppressants, etc. Also said she treats ILC just like IDC. No different. Said she'd prescribe tamoxifen. I told her I thought AI better. She said no difference but I know that's not necessarily true. I mentioned my previous clotting episodes and she was surprised and quickly said then I'd do AI with Lupron. She ordered OncotypeDX when I asked about it. Waiting on that and genetic testing from the surgeons office.

The second oncologist was more informative but much farther away in a busy medical center. He also treats ILC like IDC but had more information for me. Said AI better than tamoxifen. Said I might need chemo depending on nodes and OncotypeDX. I don't know who to go to. Will probably try a third!

The local hospital wants me to do mri guided biopsies on the areas that lit up in my breast but it would be two more weeks to wait to do it as the techs are all on vacation.

The surgeon said I can still wait and do biopsies and try for lumpectomy depending on genetic testing results. But I'm anxious. I went ahead and scheduled BMX for July 9.

What I'm really panicked about is upper abdominal pain and digestive symptoms - I've had the symptoms for a couple years but they flared up badly right when I got the diagnosis! So I’m worrying I have GI metastases. Which I know is unlikely but the fear is there. I had upper and lower scopes in December and they only found gastric inflammation consistent with gastritis. And the fact it's suddenly so much worse points to stress. I'm afraid to mention it to the surgeon. I don't want anything to complicate the mastectomies. I’m taking antacids like crazy trying to get rid of the pain and nausea

Thanks for asking.

Log in to post a reply

Jun 23, 2020 02:21PM Whatjusthappened wrote:

I'm so sorry that you're going through all of this. It may be hard to find a MO who treats ILC and IDC differently. Mine doesn't really, though he does acknowledge the differences and leaves a good amount of the decision making up to me. Remember, that as far as treatment goes, you can accept or reject anything offered to you. If you don't feel comfortable with your options for an MO so far, then absolutely look again. You'll be seeing this doctor a lot. You can always change down the road as well. I didn't get a "warm fuzzy feeling" the first time I met mine, but we've got a decent relationship going now and he takes my concerns seriously. Mine doesn't really handle my non-cancer related conditions- my primary does that. So I have to take care that I keep a copy of records so I can keep them both in the loop. If you've got other conditions, don't expect they are going to remember them every time you go in. In my experience, that just doesn't happen very often.

The fact that they found more spots on the MRI is upsetting I'm sure. It's pretty common for ILC to be multi-focal. If you're going ahead with the BMX I don't really know why they would need to biopsy those other spots since they could just get that pathology after surgery.

Your stomach issues are probably stress-related. I can't imagine many things that are more stressful than a cancer diagnosis. If you had enough metastasis in your GI tract to be causing symptoms, I would think it would've shown up on the scopes. Just my opinion, but I think you should still mention it to your doctor. Most doctors understand the fear we feel at this stage and will order tests to ease our minds if nothing else. I had a lot of back pain when I was diagnosed and my BS ordered a bone scan, which my MO changed to PET scan. It made me feel a bit better, but even then there's that part of my brain that wondered if the ILC is hiding. I don't worry about it so much anymore though, so it gets better.

I hope you have someone to talk to through all of this with. It helps to talk it out.

Sending you a virtual, socially distanced, hug!

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Jun 23, 2020 03:00PM - edited Jun 23, 2020 03:17PM by Gracejoy

Melielu It's hard to get breast cancer diagnosis at first. We all have been there. I remember as I was waiting for surgery I was so nervous. I felt nausea and everything that I ate tasted bitter. I lost 10 pounds in one month before surgery.

I found keeping busy and talking with friends and family helped a lot. Also talking with psychologist at cancer treatment department also helped ease mynerves. I hope this helps. Hugs.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole-breast: Breast, Lymph nodes, Chest wall

Page 1 of 1 (17 results)