Join Us

We are 219,622 members in 84 forums discussing 161,607 topics.

Help with Abbreviations

Topic: Anyones path report say Lobular Like

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

Posted on: Jan 5, 2019 03:32PM

jessie123 wrote:

Well, I'm back again. First I had Lobular -- then the diagnosis changed to Mixed - now I'm back to Lobular. I had really gotten used to mixed and was finally feeling OK with it. I'm exhausted ! My question is does anyones pathology report say Lobular Like instead of just plain Lobular?? Also the E- Cadherin (sp?) was positive which I've read occurs in only 16% of lobular carcinomas.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
Log in to post a reply

Page 1 of 1 (24 results)

Posts 1 - 24 (24 total)

Log in to post a reply

Jan 5, 2019 05:12PM letsgogolf wrote:

Mine showed IDC with Lobular features on one report and Mixed type on another report. I was under the impression that E-Cadherin positive tumors were IDC and not Lobular although they could have Lobular features. I know mine was also Positive for E-Cadherin. I will have to double check the notes that I have on this.


Oncotype DX = 3. IDC with Lobular Features. Sentinel Node had Micrometastases - Estrogen 100%, Progesterone 99.89%, Ki67= 3.3% Dx 2/14/2017, IDC, Left, 1cm, Stage IB, Grade 1, 0/8 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left Radiation Therapy 4/6/2017 Whole-breast: Lymph nodes Hormonal Therapy 6/1/2017 Arimidex (anastrozole) Targeted Therapy
Log in to post a reply

Jan 5, 2019 05:29PM - edited Jan 5, 2019 05:29PM by Meow13

My report says 1 tumor ILC, no e-cadherin expression the other tumor says IDC with lobular features highly expressive of e-cadherin.

Tumors are not usually homogenous.

Log in to post a reply

Jan 5, 2019 05:35PM letsgogolf wrote:

I believe I would speak to the pathologist. Is that within the rules?

Oncotype DX = 3. IDC with Lobular Features. Sentinel Node had Micrometastases - Estrogen 100%, Progesterone 99.89%, Ki67= 3.3% Dx 2/14/2017, IDC, Left, 1cm, Stage IB, Grade 1, 0/8 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left Radiation Therapy 4/6/2017 Whole-breast: Lymph nodes Hormonal Therapy 6/1/2017 Arimidex (anastrozole) Targeted Therapy
Log in to post a reply

Jan 5, 2019 05:40PM jessie123 wrote:

I know - it just doesn't make sense. My pathology report said "mammary carcinoma - lobular like. Also I noticed the tumor stained positive for E-cadherin. I don't even know what to do now. The surgeon kept insisting that it's lobular carcinoma. Well, if it's lobular why didn't the report just say Lobular --- not lobular like. Now two hospitals have diagnosed Lobular and that's fine, but still I'm concerned. Especially since this doctors nurse said it's mixed type and the E-Cadherin stains positive.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
Log in to post a reply

Jan 5, 2019 05:44PM letsgogolf wrote:

I agree with you. I don't think Lobular would stain positive. I am guessing it's actually IDC with Lobular features as in my case. I am going to dig out my reports to see exactly what they say.

Oncotype DX = 3. IDC with Lobular Features. Sentinel Node had Micrometastases - Estrogen 100%, Progesterone 99.89%, Ki67= 3.3% Dx 2/14/2017, IDC, Left, 1cm, Stage IB, Grade 1, 0/8 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left Radiation Therapy 4/6/2017 Whole-breast: Lymph nodes Hormonal Therapy 6/1/2017 Arimidex (anastrozole) Targeted Therapy
Log in to post a reply

Jan 5, 2019 05:44PM jessie123 wrote:

Letsgogolf -- I just don't know - I doubt it - this surgeon is highly respected in my city - at a teaching hospital. My city is not small, but it's not gigantic either. All of our doctors at the 4 major hospitals know each other so getting another opinion can step on someones toe.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
Log in to post a reply

Jan 5, 2019 05:46PM jessie123 wrote:

So Meow -- one of your lobular tumors did stain E-cadherin positive?

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
Log in to post a reply

Jan 5, 2019 05:47PM Meow13 wrote:

I think they should, the pathologist should be available to answer your questions. My oncologist pretty much ignored everything but my er+, pr-, her2- status. He didn't even consider the grade, nottingham scores he was focused on my oncodx score. Everything I have read the last 7 years points to anastrozole being the treatment for my situation.

Log in to post a reply

Jan 6, 2019 06:23AM claireinaz wrote:

Sadly, ILC/IDC are pretty much treated the same regardless of type; oncotype scores can often keep one from having chemo. I didn't have any of that testing because I had positive nodes and considered a different animal than others, so chemo was highly recommended, although I supposed I could have refused it. Since I embraced all my treatment as giving me even a hair's-breadth chance of kicking c to the curb, I wanted every available treatment I could get. I was in great health and knew I could handle the rigors of all my treatment; others can't, though, and that's okay.

I would like to share that ILC has a tendency to both hide from scans like mammos and has a higher tendency to be multi-focal. If you've ever had a mammo that revealed dense breast tissue, that will make it even harder to detect any problem in the future. Because I had ILC and very dense breasts, I opted for the BMX with recon. It was not an easy decision, and I took nearly 2 years to make it. Since I had 5 "clear" mammos over 5 years that didn't show that I had cancer, I couldn't see myself trusting mere scans ever again.

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

Jan 6, 2019 06:46AM - edited Jan 6, 2019 06:52AM by Georgia1

Hi Jessie. I don't know if this will help at all, but I just pulled up my old pathology report. At the top it says ILC, but later on it says "mammary with lobular and ductal features." In my case I am HER- but I understand that's not always true for ILC.

As far as treatment goes, yep, IDC and ILC seem to be treated the same. Based on other factors, like size and stage, I chose a lumpectomy followed by radiation.

Is part of your concern that you think your oncologist is not very good? I personally didn't expect a lot of information from my surgeon, but I met with two MOs and two ROs until I found doctors who explained things clearly to me and seemed on top of their game.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jan 6, 2019 07:38AM jessie123 wrote:

No, actually I think my surgeon is excellent --- I haven't even seen an oncologist yet. I also realize the treatment should be basically the same. I was diagnosed at the first hospital as Lobular, but there were problems so I went to another hospital for a second opinion. That second biopsy diagnosis was "mammary carcinoma - lobular like". The nurse there told me on the phone it was "mixed carcinoma" Everything I've read online with that diagnosis says it's mixed carcinoma. I wanted my slides sent off for a third opinion since I had two different diagnoses and my surgeon was very against that. When I met with her Friday she said I have Lobular. However, Lobular Like, I don't believe, is pure lobular. I just really want to know what my cancer is -- There is a 2018 clinical trial published that says in post menopausal women the mixed type (called IDC-L) has a better prognosis than ILC or IDC. I don't understand why the surgeon would not want to send my slides for a third opinion. I don't see her again until the end of January so there is no rush on treatment.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
Log in to post a reply

Jan 6, 2019 07:49AM windingshores wrote:



Here are the relevant parts of my report post surgery (again my post-biopsy results were different in some respects...you will get more certainty after surgery, hopefully)


1.  Invasive carcinoma with mixed ductal and lobular features, moderately



differentiated (modified Bloom-Richardson grade 2 of 3:  tubule score = 3,



nuclear score = 2, mitosis score = 2), 1.4 cm in size, at biopsy site in the



upper outer quadrant (C2-4).






4.  Carcinoma in situ with mixed ductal and lobular features, solid type



(intermediate nuclear grade) without necrosis or calcifications is present in 3 of 15 blocks (C2-4), associated with the invasive carcinoma.




Immunohistochemical studies:
1.  E-cadherin expression is intact in ductal carcinoma in situ, and lost in
carcinoma in situ with mixed ductal and lobular features (blocks C2,7).
2.  Invasive carcinoma shows predominantly loss of e-cadherin expression with
intermixed e-cadherin positive cohesive ductal-type areas.




Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
Log in to post a reply

Jan 6, 2019 02:55PM dakrock wrote:

Hi All

These reports can be so confusing to understand.  My pathology says moderately differentiated infiltrating lobular carcinoma with focal ductal features, Elston Grade II  the longest span 1.2 cm the entire craniocaudal dimension measures 2.9 cm  .   Irregular margins and avid enhancement.   The tissue core with a focus suggestive of residual DCIS.   Gee I only know the doctor said I had Invasive lobular carcinoma he never mentioned anything about ductal.   ER+PR+   >90% variable, focally >90%     HER2-Neg.   Ki-67  25-35%  Are these bad odds???  Does anyone understand this?


 

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/4/2017 Femara (letrozole) Surgery 2/22/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Jan 6, 2019 03:04PM - edited Jan 6, 2019 03:12PM by Meow13

I think cancerous tumors can contain many differing features. My ductal tumor says tubular features in parts of the mass, e-cadherin highly positive. They don't tend to be homogenous so have some guide lines for the nottingham score for example if tubular formations in less than 10% of the mass the score a 3 for tubule part(poorly differentiated), if greater than 10% but less than 75% score a 2(moderately differentiated), over 75% score a 1. My oncologist seemed to not read too much into the reports. So frustrating to not know if I do this treatment it will work for me. Just don't know.

Log in to post a reply

Jan 6, 2019 03:52PM Georgia1 wrote:

Dakrok and all, yes it is frustrating to have a mixed or unclear diagnosis, but stage and grade are more predictive than the ILC/IDC distinction. Your 1A stage is very good. The high ER and PR numbers mean the anti-hormonal therapy prescribed should work well for you in preventing recurrence in your other breast as well as elsewhere in your body, even if there is/was some DCIS. The Ki-67 test is old technology and most doctors disregard it now. So overall, in my layman's opinion, you have good odds.


Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jan 6, 2019 07:01PM jessie123 wrote:

Georgia --- I'm also bending towards a lumpectomy -- my surgeon seems fine with that if after the dreaded MRI my other breast is clean. Radiation is worrisome because of heart and lung issues, but I'll have to deal with that. I read today that some cancer clinics have a new type breast radiation table where you lay on your stomach with breast hanging through two holes ( guess like the MRI) Anyway, that protects the heart and lungs. I've read more about Lobular Like this afternoon -- I'm assuming mine isn't the normal Lobular --- there are different types --- mine stains with the E-cadherin. Going to try and get the pathologist to talk to me tomorrow. I wish that I could just blink my eyes and it would be 3 months from now.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
Log in to post a reply

Jan 7, 2019 06:19AM letsgogolf wrote:

I had no problems with the radiation part of treatment. It was pretty easy and mine was left side and included all nodes except intramammary. Best wishes for a easy and speedy process! Arimidex has also been easy with no side effects at all after almost 2 years. Only issue has been development of Osteopenia and not getting along with Boniva. Switching to Fosamax on Friday.

Oncotype DX = 3. IDC with Lobular Features. Sentinel Node had Micrometastases - Estrogen 100%, Progesterone 99.89%, Ki67= 3.3% Dx 2/14/2017, IDC, Left, 1cm, Stage IB, Grade 1, 0/8 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left Radiation Therapy 4/6/2017 Whole-breast: Lymph nodes Hormonal Therapy 6/1/2017 Arimidex (anastrozole) Targeted Therapy
Log in to post a reply

Jan 7, 2019 02:19PM jessie123 wrote:

Letsgogolf --- when I was in my 30's I had fibroids and was put on Lupron for 3 months prior to surgery. Lupron is an estrogen blocking drug. In my mid 40's I had a Dexa after learning that Lupron could cause bone loss. My hip was minus 2.7 -- full blown osteoporosis and pre-menopausal. It was from the Lupron. I tried Fosmax, but it caused heart burn so I quit. By my 50's the bone grew back to an osteopenia level. Have no idea what the anastrozole will do to me. Just one more thing to worry about. One good thing -- I learned at a very early age NEVER to fall down --- I trained myself years ago to be careful.

Clairinez --- did your cancer show up on the MRI ? Mine did not on Mammagram , but did on ultrasound.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
Log in to post a reply

Jan 7, 2019 03:38PM letsgogolf wrote:

Jessie123 I am familiar with Lupron injections. I had to give those to myself years ago when I was trying to get pregnant via IVF. Had to shut down estrogen prior to going on Pergonal injections each cycle. I wasn't on it for any extended period of time so I am not aware of any damage to my bones from it. My bones were fine 2 years ago when I had a DEXA Scan but after 2 years on Arimidex I have osteopenia of the lumbar spine. Just barely in the osteopenia range for now but I don't want it to get worse. My sister has been on Arimidex for 4 years and now has gone from osteopenia to Osteoporosis. She is on Prolia injections every 6 months.

Oncotype DX = 3. IDC with Lobular Features. Sentinel Node had Micrometastases - Estrogen 100%, Progesterone 99.89%, Ki67= 3.3% Dx 2/14/2017, IDC, Left, 1cm, Stage IB, Grade 1, 0/8 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left Radiation Therapy 4/6/2017 Whole-breast: Lymph nodes Hormonal Therapy 6/1/2017 Arimidex (anastrozole) Targeted Therapy
Log in to post a reply

Jan 8, 2019 04:03PM Georgia1 wrote:

Jessie, I just left you a note on the other thread on the MRI. And the radiation you describe is usually called "prone position." I did it that way and it wasn't bad at all - took about ten minutes a day.

Hoping the best for you and it will all be in the rearview mirror before you know it.


Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jan 8, 2019 04:12PM jessie123 wrote:

Georgia --- thanks -- My problem is I had a cervical spine rupture years ago and haven't been able to lay on my stomach since then. I'm afraid this is going to be very painful -- especially with my arms up. It's going to be so embarrassing if I have to get up and leave in the middle of the procedure. However I realize that I have no choice if I want my treatment for cancer to be successful. I'm even nervous to take the 5mg valium the doctor gave me -- but I do plan to take it. I wonder how long it takes a valium to work -- 15 minutes?

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
Log in to post a reply

Jan 8, 2019 04:31PM Georgia1 wrote:

Ugh Jessie. That's too bad. I can't help on the valium question since it has never worked for me, at all. The most important thing with the MRI is being perfectly still, so if you explain your spine issue to the tech I'm sure she can help find the "least bad" position. Also you can ask for a break whenever possible (sometimes there are one or two) where you can stretch for a bit.

Then when you get to radiation treatments, have the same conversation with your RO and the techs. And don't worry about embarrassment - most of the doctors, nurses and techs I've met just want to be helpful.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Feb 16, 2019 08:36AM Numb wrote:

My understanding of e-caderin is that it is a test to make sure what type of carcinoma you have, i.e. lobular or ductal. At first mine was diagnosed as Lobular, then when the first report came back it was diagnosed as Ductal and then the 2nd report said it was Lobular. When I queried this my Oncologist e said it was Lobular behaving like Ductal Loopy The only reason they knew it was Lobular is that they did an ecaderin test on it and that proved it was Lobular. I don't think it makes any difference whether it is Lobular or Ductal to tell you the truth. I think whether it has spread is more important. Size doesn't seem to make a huge difference either. I had a 2 cm tumour and a friend had a 5 cm tumour but mine was invasive and hers wasn't. I had to have chemo and she didn't.

So what exactly is ecaderin then ?

Dx 2/15/2016, ILC, Right, 2cm, Stage IA, Grade 1, 0/1 nodes, ER-/PR-, HER2- Surgery Lumpectomy; Lymph node removal: Sentinel
Log in to post a reply

Feb 17, 2019 01:36PM jessie123 wrote:

I also think that it is treated the same. However, for me the first biopsy helped me make a decision between mastectomy and lumpectomy because lobular tends to spread to the other breast and is hard to see on scans. I finally called the pathologist himself to ask him what I had because I kept being told Lobular. He said mine is MOSTLY ductal with a small amount of lobular. Mine did not stain for e-caderin (sp) -- so I guess he just diagnosed the small lobular through cell structure -- really have no idea.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast

Page 1 of 1 (24 results)