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Topic: Lobsig?

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

Posted on: Aug 18, 2019 09:27AM - edited Aug 18, 2019 09:28AM by RMC19

RMC19 wrote:

I'm new to this so please excuse me if this is covered somewhere else. Right now I am Scheduled for a bilateral mastectomy on September 9. I've been doing tons of research, like everyone else here, and found references to lobsig. It is my basic understanding that other tests could be done in addition to the oncotype for lobular specific cancers. Does anyone know how to get this done? I keep asking my breast surgeon and and oncologist and they don't seem to know what it is.

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Aug 18, 2019 02:56PM Jelson wrote:

There is a thread on LobSig on this board https://community.breastcancer.org/forum/71/topics/872516?page=1#idx_2 which contains a journal article citation and here is an even more recent one https://www.labmedica.com/molecular-diagnostics/articles/294778571/test-determines-if-cancer-patients-require-chemotherapy.html

unfortunately it doesn't seem that the test which would help to determine the efficacy of chemo for a particular person is commercially available yet, but you might look for a clinical study?

Dx 4/17/2009, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+
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Aug 18, 2019 03:34PM Moderators wrote:

RMC, welcome to Breastcancer.org, we're so happy you found us! Unfortunately, we don't really have any answers for you, as we don't have any information on this type of test in our main site yet. Hope the links that Jelson gave you can help. Thank you, Jelson!

Good luck with surgery. You may want to join also the September 2019 surgery support group. We're sure you'll find support and helpful information there from other members undergoing surgery in September too. Hope this helps!

We look forward to hearing more from you soon!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 18, 2019 04:33PM - edited Aug 18, 2019 04:35PM by ShetlandPony

LobSig is a multigene predictor of outcome in invasive lobular carcinoma

“... a LobSig-high phenotype was associated with the TCGA proliferative subtype (χ2, P < 8.86 × 10−4). ILC with a poor outcome as predicted by LobSig were enriched with mutations in ERBB2, ERBB3, TP53, AKT1 and ROS1. LobSig has the potential to be a clinically relevant prognostic signature and warrants further development."

The above quote from the abstract of the paper mentions mutations associated with poor outcome in ILC. Since LobSig is apparently not available to patients yet, I wonder if your onc could order a genomic test such as Foundation One so you could see if your tumor has these mutations. And if so, choose more aggressive adjuvant therapy.

Another idea would be to order Mammaprint in addition to Oncotype, as a second way of judging risk.

You can print the studies cited above and share them with your docs.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Aug 18, 2019 07:52PM RMC19 wrote:

Thank you everyone! That Is exactly the starting point I needed. Thank you! This is a very helpful!

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Aug 30, 2019 07:38PM - edited Aug 31, 2019 06:05AM by RMC19

Just as a follow up, I did bring this up with an oncologist and my breast surgeon. To summarize, the reason for all this is that I have surgery in early September (BMX) and all I want to know is if there is something we need to do to get this information at that time. I brought the information that everyone was kind enough to forward and some other stuff I found online. Both were intrested and did listen, but they were not familiar with it. My breast surgeon is probably one of the most intelligent and kindest people I've met in the area and I think I even frustrated him a bit. I feel badly about that.

My point is that if the tissue is coming out, shouldn't we be testing everything we possibly can or at least ensuring that it is preserved in a manner that we can do it in the future if this becomes available.

I was able to find another oncologist at the Cleveland Clinic who is willing to meet with me after surgery (she mentioned Lobsig in a recent presentation on August 22 and it was so refreshing to hear someone mention it that I called right over to her office). In the end, the breast surgeon was willing to call her (because I plan on using her at least for a second opinion if not more after surgery), but I'm not sure where it is going to go as the actual test is not available (and backing into the information is proving difficult).

The breast surgeon did mention that the foundation one (mentioned by one of the other surgeons I spoke to and above) is mostly for stage 4 analysis. In the end, I just do not want to shoot myself in the foot by not doing something now that I'll find out a year from now I should have done. I'll let you know what they come up with, if anything.

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Aug 30, 2019 08:10PM - edited Aug 30, 2019 08:12PM by ShetlandPony

You are making sense to me, RMC. Have you contacted the Lobular Breast Cancer Alliance? LBCA. Maybe talk to the docs associated with them. There are researchers, including some in Pittsburgh, who I hope might suggest a research study for you or a way of preserving tissue.

So what, can you do F1 anyway? The company would probably give you a price break if insurance won't cover.

In any case, at least you are aware that Oncotype may have limitations when it comes to ILC. What did your doc say about Mammaprint?

I feel for you, because when I was first diagnosed the results of the SOFT and TEXT trials were not available, and being premenopausal I really wanted that info.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Sep 5, 2019 05:47AM RMC19 wrote:

To follow up again, One oncologist got back to me and openly admitted the Lack of information on lobular. To his credit, he is willing to consider lots of things, but he wants to see the original pathology 1st, which seems fair (just hope they still have material to run tests he wants because he wants to wait a week post surgery to see me and get path back). Surgery is next week.

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Sep 5, 2019 02:31PM ShetlandPony wrote:

Thank you for the updates RMC. Will look for your next one.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Sep 5, 2019 05:08PM - edited Sep 5, 2019 05:09PM by Trying2staypositive

it sure does scare me to hear oncologists admit ILC is under studied and they dont know. Really worries me. I dont know yet if I will be recommended to try chemo based on surgery result coming up, but I have other health conditions which may be worsened by it, so I really have to be careful. I know my biopsy was strongly er and pr positive. Wondering if they will recommend OS and AI regardless, or even assuming if we can figure out a relevant risk profile if that would be enough? Im 46

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 26, 2019 05:52PM naalehunet wrote:

I am in the same ILC boat, opting for BMX on October 10th. Neither primary or second opinion oncologist, or my surgeon or primary physician had knowledge of LobSig and surgeon said he learned something from the article about the shortcomings of the standard Onc tests. I will spend the next two weeks figuring out how to get the genome testing to make the basic high-low risk decision predicted by LobSig. I am 73 yo and reluctant to have any chemo. Thanks for establishing this topic!

Dx 8/8/2019, ILC, Left, 1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 10/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right Hormonal Therapy 11/11/2019 Femara (letrozole)
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Sep 26, 2019 06:17PM - edited Sep 26, 2019 06:22PM by RMC19

I had my surgery In early September. Went to my local ontologist this week and was so disappointed. I specifically met with him before surgery to tell him I was extremely concerned about lobular specific issues. He promised to addressed them, but when I got there this week he just did the normal review (cursory at best) without a addressing my specific concerns. Even the hospital path of my tumor did not address many specifics and did not address ER/PR/HER2 status. Further, the MO hadn't even read the pathology before I got there (at least that is how it seemed because I had to point things out to him and he could not answer questions about things that were in the report).

Extremely disappointing how lax these people are with such major decisions.

I have made an appointment with a large institution in Cleveland for next week and I am praying for some lobular specific discussion, information, and guidance

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Jan 8, 2020 04:56PM - edited Jan 8, 2020 04:57PM by Kstinekd

RMC19, I just posted on the Facebook ILC group your same question. I have gone through a year of treatments, but want to know my cancer's genomic makeup so that as new ideas pop up to reduce recurrence risk, I can determine what may work best for me. For instance, my oncologist suggested I may want to participate in the ABC study where we take aspirin, but i have read that it could be detrimental to some people with certain nuances to their cancer. I want to know the nuances of mine. I had my first appointment with my oncologist since finishing all treatment yesterday and posed all of this to him and he said that the genomic testing is only done for stage iv. He noted it would cost me $5,000 to do now and would not do me any good. I was disheartened. He never mentions the fact the I have ILC and it is different. I am always bringing it up. I am stage 3 with 9 yo and 12 yo daughters and I feel like I need to be as pro-active as possible. I'd love to know what you have discovered and am happy to tag-team on this with you to see what's available to us.

Dx 10/9/2018, ILC, Right, 6cm+, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2- (FISH) Surgery 11/29/2018 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement Chemotherapy 1/3/2019 AC + T (Taxol) Radiation Therapy 5/15/2019 Whole-breast: Breast, Lymph nodes Surgery 9/18/2019 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap

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