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Topic: New ILC Breast Cancer Registry Will Shed Light on Rare Disease

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

Posted on: Jan 2, 2019 07:35AM - edited Jan 2, 2019 07:35AM by JohnSmith

JohnSmith wrote:

Here's some great news for the the Lobular breast cancer community.
The new patient registry is a win for ILC researchers and should ultimately improve patient outcome. More to follow...

https://consultqd.clevelandclinic.org/new-lobular-breast-cancer-registry-will-shed-light-on-rare-disease/

Here's an excerpt to the story:
"Lobular breast cancer is the second most common type of breast cancer from a histological (tissue type) perspective, but it only represents about 10 to 15 percent of breast cancer cases. Because of its rareness, oncologists have tended to view it and treat it in the same way as the more common ductal breast cancer.

But as more research is performed on lobular cancers, investigators are starting to recognize that it has some distinct features apart from ductal cancer, especially with respect to how it metastasizes and its decreased sensitivity to chemotherapy.

With this in mind, scientists from Cleveland Clinic, University of Pittsburgh Medical Center (UPMC), Ohio State University and University Hospitals Cleveland Medical Center are creating a lobular breast cancer registry that will include cases from 1990 to the present.

"Many of us in the community feel like these cancers need some special attention," says Megan Kruse, MD, Hematology and Medical Oncology, Cleveland Clinic. "That maybe it's not best that we treat lobular breast cancer the same as ductal breast cancer. But the challenge in doing so is that lobular breast cancer cases are pretty rare, and so in order to really get a comprehensive look at its characteristics and treatment patterns, you really have to do it across multiple institutions.
"

Wife was Age 45 at Dx 4/2014. BMX Surgery 6/2014 revealed: ILC, Stage 2 (Multifocal ILC, largest lesion 2.2 cm), Grade 2, ER+/PR+ (95%), HER2-, Ki-67 5-10%, Oncotype 11; Variant in the ATM gene Dx 4/8/2014, ILC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2014 Mastectomy; Reconstruction (left); Reconstruction (right)
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Jan 3, 2019 02:55AM Peregrinelady wrote:

That is good news. Thanks for sharing.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/19/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 8/1/2016 Arimidex (anastrozole) Hormonal Therapy 7/20/2020 Femara (letrozole)
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Jan 3, 2019 05:37PM Meow13 wrote:

How does the Registry work? I always wonder if I am included in a database somewhere. I didn't do chemo despite having an oncodx score of 34. I did AI drugs.

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Jan 3, 2019 11:45PM dakrock wrote:

Meow 13

I didn't do chemo either just immediately before surgery went on Letrozole for 3 months and then surgery.  I have a question for you what is an Oncodx score?   I have all my test results but I don't see that one at all.   Thanks

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)
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Jan 4, 2019 07:02AM - edited Jan 4, 2019 07:03AM by Meow13

The oncodx testing I had was for invasive early stage hormone positive her2- cancers. It is a predictive tool to help deciding if chemo will be benefical given the patient takes tamoxifen. For me my results state I had a 23% chance of recurrence taking tamoxifen but a 12 % chance if treated with chemo plus tamoxifen.

The recurrence is for a 10 year period. I believe my score was high because of my strong er and negative pr status, but I wasn't going to take tamoxifen instead an AI drug. In my case, pr negative, AI drugs are proving almost twice as effective. So I took the information and decided. I feel like almost all patients with high oncodx scores take chemo. It would be nice to get a real big data collection of actual outcomes. I have been NED for 7 years. It would be good to get updated statistics so people have a better idea of risks when choosing treatment.

I believe for instance stage 4 survival outcomes for a 5 year period are still a 22%, still alive after 5. Yikes, enough to plunge someone into despair. But these statistics are out dated more people are living and managing cancer. Perhaps, an updated registry might give insight in to patients and their real outcomes.

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